15 January 2025

(10.00 am)

Lady Hallett: Ms Domingo. No, you’re not … no.

Ms Domingo: Is that better?

Lady Hallett: That’s better.

Submissions on Behalf of the National Pharmacy Association by Ms Domingo

Ms Domingo: The National Pharmacy Association, or NPA, is grateful for its designation as a Core Participant in Module 4 of the Inquiry.

The Inquiry will be aware of the NPA’s role and interests from its participation in Module 3 but for the benefit of those Core Participants not involved in that module, and in brief, the NPA is a representative voice of independent community pharmacies across the UK, that is family-owned and run independent pharmacies through to small- to medium-sized regional chains. An estimated 50,000 people including around 15,000 pharmacists work in the NPA’s 6,000 member pharmacies.

Community pharmacy is an integral part of the NHS and primary care networks, and it plays a crucial role in maintaining and improving the health of the communities it serves. Community pharmacies are embedded within their communities, and 96% of the population can reach their local pharmacy within 20 minutes.

Community pharmacy played a vital role in the delivery of the Covid-19 vaccination programme, and community pharmacists and their teams have delivered over 42 million Covid-19 vaccinations.

This opening statement seeks to highlight the NPA’s significant role and interest in the delivery of the Covid-19 vaccinations across the UK, by recognising the success of the programme but also identifying a number of areas for improvement.

The Covid-19 vaccination programme in the UK operated at an unprecedented pace, scale and complexity, and was one of the success stories of the pandemic. Community pharmacy played a significant role in the delivery of the programme which increased over time as the value of the contribution of community pharmacy was recognised.

One community pharmacist in Macclesfield highlighted the importance of the programme and the commitment shown by community pharmacy teams in delivering it. To quote:

“I have been a pharmacist for 38 years and I can say the day when my pharmacy became one of the very first in the country to administer the Covid-19 vaccine was the biggest day of my career. It’s been quite emotional at times for our patients. Some people have not been out of their home since last March. They are hesitant to be outside and are not used to seeing people. They see being vaccinated as the start of the end of this grim existence … A lot of work has been required of the team here but we are very excited about it … Everyone here is part of something special. We’re proud and honoured to be involved in this national effort to help protect the population of the country and hopefully return us all to some form of normality.”

The NPA’s vice-chair, Olivier Picard, has produced a witness statement for the Inquiry which is disclosed at iNQ000474318 and within which is an account of his experience of setting up a vaccination centre, reflecting the collaboration between community pharmacy teams and other healthcare workers.

Mr Picard has also highlighted the vital role played by volunteers in supporting the vaccination programme within local communities, remarking:

“I have never seen a community come together like this before, nor have I ever been involved in anything that meant so much to so many people at the same time.”

The NPA respectfully asks the Inquiry to consider and recognise the invaluable contribution of volunteers to the success of the vaccination programme.

My Lady, the NPA acknowledges that the Covid-19 vaccination programme was an emergency response, that the lessons were learned and improvements implemented throughout the programme, and that overwhelmingly, it is one of the success stories of the pandemic. Nevertheless, it is important to reflect on the areas that could have been done better, and the NPA asks the Inquiry to reflect on the following points in its consideration of how the delivery of a vaccination programme could be improved in the future.

First, the need for effective planning and the involvement of community pharmacy from the outset. Community pharmacy should have been consulted and involved earlier in the planning process, particularly given its years of experience and expertise in delivering annual flu vaccinations and given the reach and resources of the approximately 13,000 community pharmacies embedded in communities across the UK.

Instead, community pharmacy was initially given a gap-in-service role which failed to utilise their experience, expertise and resource.

The NPA considers that the decision to limit the role of community pharmacy to gap-in-service provision, or where there was a need for additional capacity, was a missed opportunity to ensure wider public access to vaccinations through the extent of national community pharmacy network, particularly as some patients were being asked to travel considerable distances to receive a vaccine.

Vaccination centres provide a capacity to deliver high volumes of vaccinations in dense population areas with good transport links, and this was an important part of the programme. But so too was the ability to provide vaccinations within communities, and to reach under-served communities. This balance needs to be better delivered in the future.

The ability of community pharmacy to participate in the initial phases of the vaccination delivery was significantly limited by certain requirements of programme participation, which were unnecessary, and arbitrary. For example, participation in phase I in England required the administration of at least 1,000 vaccination doses per week and opening hours of between 8 am and 8 pm, seven days a week. This unnecessarily prevented the participation of smaller pharmacies who did not have the physical space to deliver this volume of vaccinations or the staffing capacity to administer them.

Largely because of these restrictions, there were only six community pharmacy-led contributors to the first wave of phase I of the programme.

In January 2021, the NPA’s chief executive wrote to the chair of NHS England, pointing out that community pharmacy was being under-utilised, and that “pharmacies can deliver so much more for the NHS if the potential for the network is recognised”.

As requirements were relaxed, community pharmacy was able to make a much broader and more effective contribution. The role of community pharmacy increased throughout phases one and two, and on 3 June 2021, the Covid-19 vaccination minister announced that over 500 community pharmacies had delivered over 5 million vaccines in England.

This contribution continued to increase throughout the pandemic, and by 2023, 24% of all vaccinations had been provided by community pharmacy.

Other challenges faced by community pharmacy in anticipating in the vaccination programme from the outset included the different storage requirements for vaccines and the already stretched community pharmacy services as a result of the impact of the pandemic.

The second point is the need to improve operational delivery of the vaccination booking system. Two booking systems were utilised to make vaccination appointments: the national booking system was used by community pharmacy and vaccination centres, and a separate system, Accurx, was often used by general practice. The NPA’s view is that having a dual booking system was inefficient and wasteful.

The two systems did not share information, causing duplicate bookings, which resulted in missed appointments and adversely impacted efficiency.

This situation would have been worse but for the flexible and resourcefulness of frontline healthcare workers in sharing and sourcing unused vaccination supplies. Other challenges for community pharmacy related to PPE provision, high volumes of administration and bureaucracy, and poor communications, with vaccinators sometimes finding out about changes they needed to implement the next day on the evening news.

Thirdly, addressing barriers to uptake. The NPA believes that the significance of vaccine hesitancy as an issue was not appreciated early enough and there was a delay in recognising the positive role that community pharmacy was able to play in addressing this issue.

Approximately 50% of the NPA’s membership are from ethnic minority backgrounds, which is reflected in the composition of the NPA’s board. The role of community pharmacies as trusted healthcare professionals at the heart of their communities means they are ideally placed to respond to the needs and concerns of their patients, and to address health inequalities and vaccine hesitancy within communities.

Community pharmacies play a particularly important role in deprived communities, which often have less access to other healthcare services. Over a third of the vaccinations provided by community pharmacy were delivered in the most deprived communities in the country.

On 7 January 2021, the NPA convened a ministerial round table with the minister for equalities, the minister for vaccine deployment, and the pharmacy minister, about reaching out to patients and communities who might otherwise miss out on vital care such as the Covid-19 vaccine, and to discuss how community pharmacy could help promote uptake of the Covid-19 vaccine, including how the high levels of trust in local pharmacists could be an important factor in overcoming doubts and misapprehensions about vaccination.

In addition, with Doctors of the World and NHS England, the NPA launched a toolkit for delivering an open access vaccination clinic to provide vaccinations for hard-to-reach groups, including asylum seekers and the homeless, and to promote a continuing focus on addressing vaccine hesitancy and reducing health inequalities more broadly.

In Wales, community pharmacy was specifically engaged to address vaccine hesitancy. In Northern Ireland, community pharmacy was similarly engaged to increase access to Covid-19 vaccines for priority groups and in areas where vaccine uptake was lower than the regional averaging. And in Scotland, community pharmacies were commissioned to deliver vaccinations in more remote areas.

The NPA acknowledges that lessons were learned over the course of the programme and that governments quite quickly came to recognise and utilise the strength of the community pharmacy network, however, these issues could have been better anticipated and this should be key learning for the future.

Fourthly, the importance of utilising existing resources and expertise. The NPA considers that it is more effective and efficient to build and deliver healthcare services such as a vaccination programme through existing health infrastructure, which includes the extensive community pharmacy network.

The Inquiry is invited to examine and consider whether the creation of mass vaccination centres was a further example of a broader tendency to overlook existing NHS resource and expertise in favour of the creation of expensive temporary systems and services with little lasting utility.

Finally, reducing the unrealistic expectations on healthcare workers and managing the impact on them.

The Inquiry is taking account of the impact of the pandemic on healthcare workers within Module 3, but the NPA suggests it will also be helpful to reflect on these impacts within Module 4. Healthcare workers who are already working in a system stretched to breaking point by the pandemic provided crucial vaccination services on top of existing commitments, many working almost continuously, with little sleep or time to spend with their families.

Feedback from an NPA member reflected the following:

[As read] “This has consumed my life. From hours spent setting up, learning IT systems, training staff, taking on volunteers, then dealing with the ever-changing vaccination programme, the weekly Zoom calls, the constant stream of emails with updates that you need to read and action, the list goes on. The second biggest enabler is my own team, who have stepped up to literally double the ask of the day job. We have vaccinated and run the pharmacy without compromising any of the pharmaceutical services that we provide. I can only hope that if this is rolled out as a ‘business as usual’, it will be easier to put in place and operate. Notwithstanding its success, this not a safe or sustainable model for the delivery of future vaccination programmes.”

In conclusion, my Lady, the NPA is proud of the contribution its members made in delivering tens of millions of Covid-19 vaccines whilst continuing to deliver the core role of pharmaceutical service provision.

The importance of vaccination to the healthcare system continues to grow, and the experience of the pandemic demonstrates that community pharmacy can play an expanded role in this area, drawing on the network’s accessibility and ability to reach communities that often find it harder to receive health services.

Thank you.

Lady Hallett: Thank you very much indeed, Ms Domingo, very grateful.

Ms Drysdale KC? You’re there, right.

Submissions on Behalf of the Scottish Government by Ms Drysdale KC

Ms Drysdale: Good morning, my Lady, can you hear me?

Lady Hallett: I can, thank you.

Ms Drysdale: I appear for the Scottish Government, with my juniors Iain Halliday and Kenneth Young.

The aim of the Covid-19 vaccination programme in Scotland was to save lives and to protect against ill health. The early rollout of the vaccine programme avoided deaths. A World Health Organisation study found that between December 2020 and November 2021, an estimated 22,138 deaths were avoided because of the Covid-19 vaccination programme in Scotland.

The relationship between the UK Government and the Scottish Government was at its best on the issue of vaccines. The Scottish Government engaged both directly and through four nations partners, as part of UK-wide pandemic preparedness and resilience measures. There were regular and candid discussions between officials and ministers about the planning and deployment of a Covid-19 vaccine. This included sharing of challenges and advice on how to address them. This level of openness and cooperation was a critical element to the success of the programme in Scotland.

As the pandemic progressed, the scientific understanding of the virus developed. This was an ongoing process with work being carried out as new variants emerged to understand the differences between them. As a result, the vaccination programme had to be flexible. It had to accelerate and decelerate to meet demand.

The delivery and communication strategy had to adapt quickly to consider new clinical advice. The vaccine programme was able to respond to developments in a highly dynamic way, throughout the pandemic, due to the hard work and dedication of Scottish Government officials and NHS partners.

The Scottish Government wishes to pay tribute to all those who contributed to the development and deployment of the vaccines, not only the scientists and the health and social care staff who delivered the vaccines, but all of those involved across society. That includes the volunteers in clinical trials and the public, for their often unseen contribution and their patience.

Many of those who worked on the vaccine made immense personal sacrifices over a long period of time to provide a vaccine and to save lives. They demonstrated the very best of public service values and the Scottish public owes them a great debt.

It’s also appropriate, my Lady, to pause and remember those who suffered from very rare cases of injury or death following vaccination, and we remember all those who suffered loss during the pandemic, and who lost their lives due to Covid-19.

The Scottish Government is here to listen and learn, to save lives in any future pandemic. It welcomes scrutiny, both from the Inquiry, but also from Scottish Covid Bereaved, the Scottish Vaccine Injury Group, and all Core Participants in this module on vaccines and therapeutics, so that injury is avoided and lives saved.

Turning now to Scotland’s role in development of the vaccines. The development of the vaccines, trials to enable their use, and the Vaccine Damage Payment Scheme were led by the UK Government. Scotland was not responsible for the development of vaccines. Regulation of medicines and vaccines are a reserved matter under the Scotland Act 1998. The Vaccine Damage Payment Scheme is also reserved. The Scottish government liaised with the UK Government on these issues, and was kept informed of progress.

The development of Covid-19 vaccines was the responsibility of pharmaceutical manufacturers and was led by a UK Government Vaccine Taskforce. It was a UK body with no Scottish ministerial representation.

Decisions on vaccine supply contracts and investment in manufacturing were taken by UK Government ministers. An agency agreement was developed between the UK and Scottish Government in August 2020 to allow the UK Vaccine Taskforce to purchase vaccine stocks on behalf of the Scottish Government.

This was agreed on the basis that Scotland’s percentage share of the vaccines would be based on population, that is based on the Barnett formula. The approach taken across the four nations was pragmatic.

Moving on to public messaging in Scotland about the vaccine. Responding to the pandemic represented a communications challenge. The pandemic itself was dynamic, and misinformation and disinformation were disseminated on social media. The Scottish Government recognised that the way to counter this was to provide transparent information to the public.

In the initial phases of the pandemic, messages were aimed at the wider population, a national call for action. The later phases of the programme, with a more complex offer called for a more nuanced approach.

These stages were comprised of messages targeted at discrete cohorts by age, occupation or characteristic.

Communications focused on each cohort as they were being invited forward for a vaccination, delivering and tailoring messages as appropriate for each audience. A key element was the use of blue envelopes for appointment letters to ensure that they were easily recognisable. And the Scottish Government reviewed the effectiveness of public messaging by commissioning weekly polling.

It was recognised that, while many people obtained information online using NHS inform, there would be those who did not. Public messaging relating to vaccines was delivered via a national door drop. Advertising campaigns used TV, radio, press, digital, and out-of-home formats such as billboards on bus shelters. The national vaccination help line provided information.

Trusted senior voices were deployed to deliver information about vaccine safety in media appearances and at the First Minister’s daily briefings.

The cornerstones of the Scottish Government’s communications strategy were accuracy, honesty, and openness. Messaging was revised continuously when new information and data was received. This was always transparent.

Turning now to delivery of the vaccine. Scotland had a clear policy position on vaccination delivery following a human rights-based approach guided by the Joint Committee on Vaccination and Immunisation, JCVI. This was set out and agreed to by the Scottish Cabinet from the start of the programme. Scotland was well prepared to vaccinate the population promptly due to the structure of the NHS in Scotland, established distribution routes through NHS National Services Scotland, NSS, and a track record often openness to vaccination among the Scottish population. There was already a well-established flu vaccination programme being delivered by health boards and the necessary infrastructure was already in place.

The Scottish Government developed a flu vaccine/Covid-19 vaccine programme to administer the Covid-19 vaccine alongside the flu vaccine. In February 2021, considering the significant emerging demands, a separate vaccinations directorate was established within the Scottish Government.

The Scottish Government was keen to ensure that its approach was aligned, if possible, across the four nations on the delivery timetable and cohort prioritisation. The four nations worked together to ensure that the first dose of the vaccine was administered on the same day in each of the four nations on 8 December 2020.

Where there were differences in approach, this was usually due to Scotland’s different infrastructure and geography. Scotland’s vaccine delivery programme was health board led. This model of vaccine delivery allowed Scotland to co-administer the Covid-19 vaccines alongside the winter flu vaccine from 2021 using mass vaccine clinics.

Critically, the more limited use of GPs and community pharmacists to deliver the vaccine in Scotland allowed those services to focus on supporting the wider pandemic response and delivering essential primary care services. Scotland was able to use the established distribution routes and channels and the experience and expertise of NSS.

Turning now to prioritisation decisions. Vaccination and immunisation policy in Scotland is based on the advice of the JCVI in liaison with the Chief Medical Officer, as it is in each of the four nations. JCVI advice is not legally binding in Scotland but was generally followed, except where deviation was necessary to meet the needs of the Scottish population.

Vaccinating island communities in line with the JCVI priorities would have meant frequent reliance on small quantities of vaccine with multiple trips to remote destinations. Rural health boards were able, instead, to vaccinate across cohorts, sometimes out of priority order, where it would make operational sense.

Scotland also adopted a slightly different approach to the vaccination of unpaid carers, prisoners and prison staff and people with learning disabilities.

The Scottish Government expanded JCVI priority group 6 to include people with mild or moderate learning disabilities to ensure that, in the absence of a learning disability register in Scotland, no one was excluded.

Another difference was that the Scottish Government took the decision to vaccinate care home staff at the same time as care home residents. This led to higher uptake among care home workers in Scotland.

Moving now to barriers to uptake. The Scottish Government recognises that there were barriers to uptake for vulnerable and at-risk groups across the UK. It responded to challenges in uptake through inclusive delivery, tailored communications, and working with partners through the Scottish Vaccine Inclusive Steering Group.

There was lower uptake in the most deprived areas and from those in certain minority ethnic communities. An inclusive framework was developed. There were health board inclusion plans with assertive outreach and clinics in suitable community locations. Funding was delivered through black and ethnic minority infrastructure in Scotland. There was the introduction of ethnicity data collection and the National Contact Centre as an alternative to digital.

The Scottish Government undertook extensive work to address concerns around vaccine hesitancy while recognising there was a very small minority who would likely refuse any offer of vaccination irrespective of how much work was undertaken to improve vaccine confidence.

Engaging with communities through local organisations was critical to understanding and addressing high levels of mistrust. The Scottish Government recognised the importance of engaging with those representing communities experiencing barriers.

Finally, turning to lessons learned. Scotland’s vaccination response to the pandemic has led to ample learning and experience which may be drawn on in the case of another pandemic. The technical report on the Covid-19 pandemic, published by the UK’s four chief medical officers, is informing the Scottish Government’s future pandemic preparedness plans for vaccines and therapeutics.

The Standing Committee on Pandemic Preparedness has been established as a permanent advisory group to the Scottish Government. This committee brings together scientists and technical experts to advise the Scottish Government on the future risks from pandemics and to ensure that Scotland as is well prepared as possible.

The Scottish Government carefully considered mandating vaccination for health and social care workers, but ultimately decided that the Covid-19 vaccine should remain voluntary. Engagement with employers and trade unions in Scotland indicated strong opposition to the proposals of mandatory vaccination. There were possible ethical and human rights concerns arising.

The Scottish Government considered the fact that some staff would still refuse to be vaccinated even if it was made mandatory. In all the circumstances, the Scottish Government considered that it was not proportionate to mandate vaccination. It focused instead on working with health and social care employers, providers, trade unions, and professional organisations to encourage uptake of the Covid-19 vaccination.

A range of digital improvements were made during the pandemic such as the introduction of a new National Vaccination Scheduling System, with an online booking system. The Scottish Government also introduced the Vaccine Management Tool (VMT), which is used to record vaccines administered. Ethnicity data was gathered in Scotland by including a question on ethnicity within the VMT, and statistics were routinely published by Public Health Scotland and allowed both the public and decision makers to understand differences in vaccine uptake by population demographics.

My Lady, in conclusion, time does not allow me to address all of the topics covered in our written opening statement which covered these and other issues in more detail. We hope that the Inquiry will find this opening statement a useful insight into the vaccination programme in Scotland, as well as providing some detail as to how the Scottish Government handled specific aspects of that programme.

There are opportunities for improvement that should be taken in preparation for future pandemics. The Scottish Government repeats its commitment to the Inquiry and to learning of ways in which lives can be saved and injury avoided with the use of vaccines and therapeutics in the next pandemic.

Lady Hallett: Thank you very much indeed, Ms Drysdale.

Mr Rawat.

Submissions on Behalf of the United Kingdom Health Security Agency by Mr Rawat

Mr Rawat: I hope your Ladyship can hear me.

Lady Hallett: I can, thank you.

Mr Rawat: My Lady, I’m here on behalf of the United Kingdom Health Security Agency, or UKHSA as it’s been called during the course of the Inquiry. I may end up calling it UKHSA.

You will be aware of the role of UKHSA, but for others here today, UKHSA is an executive agency of the Department of Health and Social Care and became operational during the pandemic. Its role is to protect the public from infectious diseases as well as external hazards including biological, nuclear, and environmental threats.

UKHSA brings together expertise from several predecessor organisations, including Public Health England and the Vaccine Taskforce.

The Inquiry will, in this module, hear evidence of the impact that the successful deployment of vaccines against Covid-19 had on the direction of the pandemic. They prevented over 100,000 deaths in the United Kingdom alone, and they allowed for the relaxation of other control measures.

All Core Participants in this module will want to assist your Ladyship in making practical recommendations that contribute to pandemic preparedness for the future.

We must recognise that risk appetites are different during an emergency compared to in peace time, but with vaccines in mind and looking forwarding, UKHSA wants today to highlight four key capabilities which, taken as a whole, underscore the importance of maintaining appropriate baseline capabilities to allow for faster scaling in an emergency. And in so doing, I will say something about the work that UKHSA is undertaking in these areas.

Of course a number of different bodies contribute to the development and delivery of a national vaccination programme. Your Ladyship is already aware of the Joint Committee on Vaccination and Immunisation, an independent expert group that gives advice on immunisations and their use in the prevention of infectious disease.

Second, as the independent regulator, the MHRA is the lead agency for monitoring vaccine safety, and for any regulatory response to safety signals. The MHRA provides vaccine safety information to JCVI.

Healthcare being a devolved responsibility, it’s NHS England that’s responsible for commissioning the immunisation programme in England which is administered at a local level by healthcare providers. NHS England has responsibility for the overall performance of immunisation programmes, including measures to address inequality.

And finally, UKHSA. UKHSA provides a secretariat for JCVI, but also provides expert support to NHS England in its programme implementation, ensuring that the deployment of an immunisation programme aligns with the rationale developed by JCVI and also delivering operational advice and supporting materials.

UKHSA also monitors and evaluates all routine immunisation programmes.

If I return to the four capabilities that we wish to draw to your Ladyship’s attention, the first is sustained investment in research and development.

As Counsel to the Inquiry observed yesterday, whether a vaccine can be developed in response to a novel pathogen and in what time scale is inherently uncertain. The Inquiry has evidence that the time between work beginning on a vaccine for Covid-19 and the launch of a vaccination programme was unexpectedly short, but the contrasting example often given is that of HIV, for which a vaccine remains elusive.

But the extent to which the UK can develop pharmaceutical countermeasures for a future pandemic will depend on continued investment in scientific research and development. The Oxford AstraZeneca vaccine was in part made possible through work funded to develop a vaccine against MERS, and that funding came from government research bodies and the work was in progress several years before the pandemic.

UKHSA itself is not a research funding body. It undertakes research and its laboratories are recognised as centres of excellence. UKHSA bids for research funding and works with academia and industry to lead, promote, and deliver research and development that can contribute to future vaccine development, and in that regard we can mention the 100 Days Mission.

UKHSA provides a secretariat for the United Kingdom’s participation in the 100 Days Mission which is a global initiative to better prepare the world for the next pandemic, by driving the development of diagnostics, therapeutics, and vaccines, so that they can be rapidly made available within the first hundred days of a future pandemic threat being identified.

Further, the capacity to sequence and analyse the genome of a pathogen is a vital element of the modern response to any infectious disease, and UKHSA has a pathogen genomic strategy which seeks to establish a programme which, working with academia and the NHS, will increase our understanding of the characteristics of those pathogens that pose the greatest risk, to then offer opportunities to support the development of new therapeutics and vaccines.

And, of course, you will hear, my Lady, of the involvement of UKHSA in its current oversight of the strategic partnership with Moderna.

But if I move on to the second capability, and that is strengthening partnerships between government, industry and academia.

The work of the Vaccine Taskforce benefited from the willingness of decision makers responding to an emergency to rapidly commit significant resource based on imperfect information and to take the risk that not every initiative would yield success.

Such conditions are unlikely to pertain in peace time and therefore UKHSA seeks to develop and maintain systems which can be scaled up in the event of a future pandemic, as well as the key technical skills which will be necessary.

UKHSA cannot do and does not do this in isolation. After all, its total budget is comparable to that of a district hospital. The VTF, however, demonstrated the benefit of closing working between government, industry and academia, and UKHSA is committed to maintaining and embedding such working.

To give your Ladyship an example, there are now 14 health protection units, research units, across England. Funded by NICE, these units are partnerships between UKHSA and the university, and they include a unit which is currently researching immunisation coverage in children, and how to increase vaccine uptake in adults, and reduce inequalities in the vaccine service.

Science is always an international endeavour and, looking forward, the UK will want access to innovative products that can be developed swiftly, evaluated, licensed, and delivered, and the opportunity to develop products itself.

UKHSA’s Vaccine Development Evaluation Centre, or VDEC, seeks to work with industry, academia and the matters to identify the most promising vaccine candidates, support their development and to provide pre-clinical and clinical trial testing.

The third capability we would highlight today is that routine vaccination work in peacetime provides the bedrock from which to scale in a pandemic.

The Covid-19 vaccination programme benefited from the infrastructure already in place for the delivery of routine immunisation programmes, and such programmes are delivered at local level and that has prove highly effective. For example, the over-65 seasonal influenza programme has been recognised for achieving an exceptionally high level of coverage by international comparison. The benefit of working at local level, mainly through general practice but, as your Ladyship has heard, through community pharmacies, is that you have a high level of patient registration and also the technology allows for the rapid identification of particular clinical risk groups.

What we mustn’t forget is that sometimes being able to receive a vaccine in a familiar environment can support public confidence.

Immunisation programmes in the United Kingdom are built on the principle of informed consent. Providing accurate information on the benefits and risks of any vaccine is critical, not only to inform choice, but to maintain confidence. And to support a robust consent process, UKHSA provides training and evidence-based resources for healthcare professionals, as well as public-facing resources, and these, of course, need to be available in a variety of format and languages, they need to be available for different age and risk groups. The information provided must be consistent across different formats and updated.

And so we say that maintaining and improving the infrastructure for routine immunisation would be fundamental to mitigating potential harm from a future pandemic, because it provides a starting point for any scaling up of a vaccination programme.

And that is particularly true at the early stage of any response to a pandemic before, if they are needed, mass vaccination centres are established.

My Lady, the final capability we would speak about today is this: that surveillance of the real world effectiveness of a programme and the presence of a robust system for safety monitoring are vital to both informed future policy and to sustain public and professional confidence in the programme.

Of course, all pharmaceutical products are associated with side effects, and that includes vaccines. And where you have a mass vaccination campaign, assessing the benefits is at a population level, and that is the role of others, such as JCVI, and the role is to make an overall assessment for different population groups based on different levels of risk.

Now that will be informed of course by the MHRA’s assessment of adverse effects and also any consideration of individual factors.

Where – taking on the work of Public Health England, but now carried out by UKHSA, where the agency comes in is that it has established expertise in the surveillance, monitoring, and evaluation of a routine vaccination programme. And the work in this area has often led the way for other countries.

That expertise brings wider benefits. Firstly, it can inform the design and planning of a massive vaccination campaign. If you have surveillance data, that allows, for example, JCVI to better review its policy advice in realtime.

Second, Public Health England, and now UKHSA, has, over many years, surveyed the public’s understanding of, and attitudes towards, vaccination, and that work is reinforced by activity across the public health system.

At the start of the pandemic, public confidence in vaccination was strong. But retaining that confidence through local and national engagement, by studying and listening to concerns, and by the generation of high quality evidence on risks and benefits, is a prerequisite to any successful future rollout.

Analysis of surveillance data informs the production of accurate information, vital at a time when inaccurate information about a vaccine’s effectiveness or safety can be so easily spread. And it allows for consideration of factors that influence confidence in particular vaccines.

Vaccine hesitancy and vaccine confidence are complex issues, the course of which can be multifactorial and emerge over time.

The third point to make is that UKHSA’s surveillance and analysis functions can support decisions as to which vaccines should be deployed and to what schedule. It contributes to the overall health system’s work in developing more tailored outreach services and in understanding the reasons why specific population groups may not be receiving immunisation.

And that, of course, contributes, importantly, to tackling to health inequality.

My Lady, those are brief submissions on behalf of UKHSA. You have submissions in written form as well, but can I conclude in this way: that, on behalf of UKHSA, I would like to repeat the agency’s commitment to continuing to assist the Inquiry with its work and particularly in this module.

Thank you.

Lady Hallett: Thank you very much indeed, Mr Rawat.

Mr Hill.

Submissions on Behalf of the Department for Science, Innovation & Technology by Mr Hill

Mr Hill: My Lady, I appear for the Department for Science, Innovation & Technology, and in these submissions I will summarise, briefly, the role the Department and its witnesses played before turning to the four themes relevant to evidence you will hear in the coming weeks.

The Department is a Core Participant as a successor to BEIS. The Government Office for Science sat within BEIS during the pandemic and sits within the Department now.

As you know, the Government Office for Science was headed by the Government Chief Scientific Adviser, the GCSA, Sir Patrick Vallance as he was then, Lord Vallance as he is now.

That explains why we are here but it does not explain what we did. The role often BEIS, the Government Office for Science, and the GCSA was limited in relation to the subject matter of Module 4 but nonetheless important.

It is best explained by reference to the three witnesses whose evidence will be considered as part of this module.

Lord Vallance gives evidence about his central role in the ideation, inception, and establishment of the Vaccine Taskforce, the VTF. I will return to that shortly.

Following the establishment of the VTF, his role on matters relating to the day-to-day work on vaccines was, by design, limited.

Lord Vallance also coordinated and encouraged the work of scientists, government and funders in the early weeks of the pandemic, which is of relevance to both vaccines and therapeutics.

He is not being called to give oral evidence but has provided a detailed witness statement which we suggest is essential reading to anybody who wishes to understand how the VTF came into being and the early impetus that drove the development of vaccines and therapeutics.

Alexandra Jones was the Director of Science, Research and Innovation at BEIS. She is being called and will speak to her personal role in the establishment of a VTF, as well as the wider involvement of BEIS in matters relating to vaccines, therapeutics, of a national core studies programme.

Lord Sharma was, as Sir Alok Sharma, Secretary of State of BEIS between February 2020 and January 2021. He too is being called and will give evidence about his role in supporting the work of the VTF, about international collaboration on vaccines, and about the Department’s work on therapeutics.

Two functions were at the heart of what BEIS, the Government Office for Science, and the GCSA did in respect of vaccines and therapeutics.

The first was to help identify, encourage, coordinate, and direct the extraordinary talents of the UK science and engineering base in academia and in industry. The second was to assist the government in making best use of that science and engineering base.

These are, you may feel, matters of considerable importance. But more so, given the speed with which that work was initiated.

On 27 January 2020, before the first documented case of Covid in the UK, the first of a series of meetings of science funders was convened by Lord Vallance. At his request, and that of the Chief Medical Officer, a £30 million fighting fund was quickly established by the Treasury. This was used to invest in both the Jenner Institute’s work on what became the Oxford AstraZeneca vaccine, and the COG-UK sequencing consortium which, by May 2020, was responsible for half the world’s Covid-19 genome sequencing.

Concurrently, work was ongoing on mapping the global R&D landscape on vaccines and therapeutics.

These were efforts to identify and utilise both public and private sector, and we respectfully agree with CTI that the role of industry in this story must be emphasised.

Those efforts took place outside of a public gaze, and may have been underappreciated as a result, but they were the foundations of the success that followed.

Having provided much of the early impetus and co-ordination, the Department’s official role in vaccines and therapeutics was thereafter limited. Other bodies and departments were more directly involved in policy and operational matters of concern in Module 4, and you will hear from those.

My Lady, we know that you’re not assisted by us repeating what is in our written opening and instead we use this time to highlight four themes.

First, the establishment of the Vaccine Taskforce and its subsequent success resulted from a willingness to step outside the norm. As you will hear, the VTF was the idea of Lord Vallance, who identified the need for a dedicated expert and operational group with a single point of accountability to work on the vaccine response.

The VTF drew upon private and public sectors and remained under ministerial oversight throughout.

It was novel and it was innovative, but it was not a leap in the dark. The VTF drew on ideas set out in a paper co-authored by Lord Vallance in 2019, which itself formed part of a Science Capability Review, about which you’ve previously heard evidence. It was a combination of forethought and flexibility.

Our second theme is that the VTF succeeded because it was prepared to fail. Scientific innovation is inherently uncertain. Any project will carry risk. This is particularly so for vaccine development. The CTI said yesterday a regularly cited figure is a 10% prospect of success measured in a period of years. It was an extraordinary achievement to develop an effective vaccine within a year, thereby abating a pandemic mid-course. That achievement should not be diminished by familiarity of the ultimate outcome.

To make this happen, the VTF, and the government that backed it, had to accept that there was a very real possibility that it would not succeed. As Lord Vallance says in his statements, and I quote:

[As read] “It is not possible to have innovation without accepting the risk of failure.”

The risk was, however, carefully mitigated. The VTF deliberately adopted a portfolio approach to vaccine development to maximise the prospects of achieving its goal. The lesson to be drawn for government is of how to develop informed innovation and risk management in the future.

There is also, we suggest, a wider lesson for society about how it encourages an environment where such innovation has the greatest prospect of success.

To quote Lord Vallance again:

[As read] “Had the VTF not achieved its central purpose, it would have been ‘lambasted as a huge waste of public money’. The fear of censure when innovation fails is a deterrent to taking innovation risks in the Civil Service.”

The question of how innovation risk is treated in value for money calculations by the Treasury, the National Audit Office, the Public Accounts Committee, and more widely by parliamentarians, the media, and even lawyers at public inquiries, is both under-considered and important.

In any future pandemic, there will be a need for innovation, and that will inevitably require an acceptance of risk and uncertainty of outcome.

Our third theme is that the development of vaccines and therapeutics revealed national strengths and national weaknesses. Foremost among the strengths were the UK science base, which includes for links between both scientists and their international colleagues, and of tradition of evidence-based medicine within the NHS, of which the RECOVERY Trial was the exemplar. The weaknesses included the limited domestic capacity for scaling up vaccine development and production.

The response to Covid-19 also meant decisions that to be made by prioritisation, for example, by suspending some non-Covid clinical trials and focusing on phase III trials ahead of phase II.

The third and final theme concerns lessons for the future. Considerable work has been undertaken in this field, informed by expertise and experience. It cannot be properly summarised here but it can be found in the witness statements of Ms Jones, Lord Vallance and Lord Sharma, and of course in the published work of the 100 Days Mission, which was started during the UK’s 2021 G7 presidency. CTI referred to the 100 Days Mission yesterday and Mr Rawat has done so just before me.

The three key lessons from that mission are, first, to invest in and re-stock the armamentarium during peacetime.

Second, to embed best practice in business as usual activity, for example, in the day-to-day work of the NHS and, as Mr Rawat has said, in the ongoing vaccination programmes.

Third, to agree the rules of the road in advance. At paragraph 149 of his statement Lord Vallance also proffers seven additional reflections that he has drawn from his evidence to this Inquiry. We invite all of those concerned to read this body of evidence carefully.

My Lady, in conclusion, the UK’s efforts in vaccines and therapeutics saved millions of lives and livelihoods worldwide. These are remarkable collective achievements.

This Inquiry will hear evidence from some of those involved but many thousands of others are also owed recognition and thanks. The scientists and the technicians of the lab benches, the administrators who enabled their research, the engineers, and those who worked to manufacture the vaccines, those who administered the vaccines, as we hearing from Ms Domingo earlier, and the members to the public who volunteered for the clinical trials and the vaccine delivery programmes.

The success of the vaccines and therapeutics was a consequence of the excellence, depth and sense of public duty within its science and engineering base.

That was, in part, a result of long-term funding for discovery research. In a future pandemic, the strength of the UK’s response will correlate closely to the strength of that same body of expertise.

That, we say, is a lesson for government and society alike.

Thank you, my Lady.

Lady Hallett: Thank you very much indeed, Mr Hill.

And to complete the opening submissions, Ms Bicarregui. There you are.

I hope I got the pronunciation right. Opening submissions on behalf of the Welsh Government by

Ms Bicarregui

Ms Bicarregui: Bore da, my Lady.

My Lady, you’ve received ten witness statements from the Welsh Government for this module. Those statements and the written opening statement provide a substantial amount of detailed information, so in this brief oral statement the Welsh Government will make two overarching points and then address some of the key issues from its perspective but certainly not all of the key issues, my Lady.

The first overarching point is that the vaccine rollout in Wales was, overall, a success. The Inquiry has a variety of written evidence before it which show that Wales managed to vaccine its population efficiently, equitably, and at pace.

That overall success, my Lady, does not mean of course that there are not lessons to be learned for the future. It’s always possible to do better and some important points, many important points, have been made in these openings.

At the end of this brief submission I will set out some of the steps that the Welsh Government has taken to date to learn from the experience of the vaccine rollout, and it’s anticipated of course that the report from this module of the Inquiry will provide helpful learning to further improve the planning and the processes involved in vaccine and therapeutics.

My Lady, the second overarching point is something which echoes what my learned friend from the Scottish Government said, which is that, from the perspective of the Welsh Government, four nations working in respect of vaccine development and supply and the development of supply and therapeutics, was, again, overall, a successful.

While some frustrations and disagreements are evident in the written evidence, and you’ll no doubt wish to consider some of that, overwhelmingly, the Welsh Government is of the view that the four nations worked in a collaborative and a constructive way to make vaccines and therapeutics swiftly available.

My Lady, if I might address the context in which the Welsh Government is able to help the Inquiry in respect of this module. As the Inquiry is aware, healthcare is a devolved function in Wales and has been since 1999. However, in relation to vaccines and therapeutics, the position is somewhat more nuanced, with certain functions being reserved to the UK Government.

So the regulation of healthcare professionals, medicines, vaccines, and their authorisation and vaccine damage payments, are all matters in respect of which legislative competence is reserved to the UK Government.

As your Ladyships is aware, but those listening may not be, the Vaccine Damage Payment Scheme is a UK-administered scheme and is a matter reserved to the UK Government.

You’ve heard already, my Lady, the MHRA is a regulator for medicines, medical devices, and blood components for transfusion in the UK, which includes all relevant vaccines and therapeutics in respect of Covid-19, and pharmacovigilance is also the responsibility of medicine regulators and is undertaken by the MHRA on behalf of the whole of the UK.

Separate and distinct to those reserve matters are those functions for which responsibility was devolved to the Welsh Government, but in the specific context of the Covid-19 vaccine procurement, a decision was taken to agree that the UK Government would exercise those powers on behalf of the Welsh Government.

This was led by the UK Government’s Vaccine Taskforce, as you’ve just been hearing about, on behalf of all four nations.

In agreeing this, the Welsh Government chose to allow its consequential share of vaccine funding to remain with the UK Treasury with a Barnett share, which you’ve heard about, of the vaccine supplies guaranteed to Wales. And, my Lady, I’d like to address you very briefly on the issue of vaccine allocation a little bit later in this submission.

The operational delivery, my Lady, of the vaccination programme in Wales fell to the seven local health boards, but, and I should emphasise this, the rollout was overseen and supervised by the Welsh Government, and the detail of that oversight, my Lady, is in our written evidence.

My Lady, the Welsh Government does invite you to consider the basis upon which vaccine supply is shared between the four nations. In the circumstances of the pandemic as it progressed, a decision as to allocation of supply had to be made very quickly and on a readily understandable basis, and really the only options available in the circumstances were for each – for sharing to occur according to, with reference to the Barnett formula, which was already familiar to all of the governments as the basis upon which funding decisions were made.

But, my Lady, in order to ensure that vaccines reached those in the greatest need first, the Welsh Government submits that a needs-based formula is needed to determine the allocation of vaccines in the future. There was simply no realistic possibility for this to be calculated, agreed, and implemented in the time available during the pandemic, but now is the time, we would submit, to revisit this issue as part of our preparedness for the next pandemic.

As you’ll have seen set out in the Welsh Government’s written evidence, the use of the Barnett formula created the potential for a vaccine supply shortfall in Wales during the early stages of vaccine delivery. That was because Wales had a disproportionately larger share of older people in its population who, as you know, my Lady, were a major part of the initial priority groups.

So the ingenuity, my Lady, of those in the Welsh healthcare system meant that a shortfall in supply was avoided. There were several elements to this, but a key factor was the steps taken to avoid vaccine waste, with vaccinators in Wales identifying early on how to extract six doses per vial from the Pfizer vaccine instead of five doses, which was originally intended, and achieving this, my Lady, quickly at scale.

So this ingenuity and some other steps taken in Wales should not detract from the need to consider the fairness and the appropriateness of the Barnett formula in deciding population share of UK vaccine stock, and that’s because, my Lady, as I’ve said, it doesn’t take account of the relative size of the population at risk in terms of what vaccination is needed. And it’s submitted that vaccines could and should in future, where possible, be allocated according to need.

Your Ladyship will be considering the important issue of equity in the rollout of the vaccine. The question of health, socioeconomic, and other inequalities has been the focus of successive Welsh Governments since the outset of devolution in 1999 and, my Lady, that prior focus meant that the Welsh Government had an early understanding that Covid-19 would produce disproportionately adverse effects on those already disadvantage or from suffering some other pre-existing health condition.

So, my Lady, the Welsh Vaccine Equity Committee was established in March 2021 with its impact and influence increasing as the pandemic evolved. It involved representatives from the under-served groups themselves, from third-sector organisations, as well as experts from Public Health Wales and the NHS in Wales, and it sought to understand the barriers to uptake of Covid-19 vaccinations in marginalised groups, and to work to remove those barriers.

The Welsh Government published a vaccine equity strategy in June 2021 to ensure all people in Wales who were eligible for Covid-19 vaccination had fair access and a fair opportunity to receive their vaccination, again by addressing barriers to uptake, which disproportionately affected under-served population groups. And very briefly, my Lady – and this doesn’t go anywhere near to answering much of what was said yesterday – but the strategy did refer to asylum seekers and it did refer to those from Traveller communities as requiring a particular focus to ensure that they could access the vaccine.

The Welsh Government implemented various measures to ensure the accessibility of the vaccine too, and to encourage take-up amongst those communities.

Just to give a few examples, measures included the appointment of outreach and engagement workers within each local health board to support with engagement and advocacy relating to the vaccination programme; and the use of community champions or trusted voices, comprising of faith leaders, community leaders, sports and cultural figures, health professionals, academics, and peers of eligible and vaccine-hesitant groups in a range of communities.

In addition to the Vaccine Equity Committee, DNA, which is – “did not attend”, a DNA group was also set up to specifically target the issue of hard-to-reach groups.

The Welsh Government also held specific events intended to target those harder-to-reach communities for those who were vaccine hesitant, including an online vaccination roundtable to permit representatives from multi-cultural faith community and business organisations from across Wales to ask questions, and to hear from a panel of experts.

My Lady, very briefly vaccine misinformation was a concern, and was identified as a key theme in the All Wales Equity Action Plan, with significant efforts made to promote accurate information to the public in Wales, which included the establishment of a community engagement group to work with community leaders and organisations representing particular communities.

My Lady, the Welsh Government enjoyed relatively high levels of trust from the Welsh public which meant the public were generally responsive to its public messaging on vaccine-related matters and that ensured that the Welsh government measures were generally well supported, but misinformation is a difficult issue and one which is increasingly hard to target as people source their information in increasingly fragmented ways, and the Welsh Government is keen to hear any suggestions which the Inquiry has on this complex topic.

My Lady, briefly on lessons learned, which I mentioned at the beginning. The Welsh Government has sought to learn lessons from the rollout of vaccinations during the pandemic to support delivery of all of its ongoing vaccination programmes. It carried out an assessment of vaccination priorities and expectations for the future, and on 25 October 2022, it published the National Immunisation Framework. The framework is intended to pave the way for a transformation of the vaccination programme in Wales, enabling exemplar delivery of vaccination and immunisation programmes with uptake and with equity at its core.

It aims to make it easier for people to know the vaccinations they are eligible for, how to receive them, and it uses digital vaccination records.

Local health boards are also required to have a vaccine equity strategy and a programme of work applying the framework’s principles. And again, my Lady, to ensure that vaccine equity is considered at every stage and to protect the “no one left behind” principle which was part of the Welsh Government’s vaccine strategy published during the pandemic, the Welsh Vaccine Equity Committee is part of the new governance arrangements under this framework, with an expanded remit to deal with all vaccination programmes.

Lastly, my Lady, whilst most of this submission deals with the undoubtedly positive effects of the vaccine rollout at a population level, the Welsh Government of course acknowledges that some individuals were harmed by the vaccine, and again, for some of those people, those harms are ongoing, and we say it’s important, as Mr Keith KC set out, to acknowledge that and to listen to those affected in that way.

The Welsh Government also wishes to acknowledge the very hard work of GPs and many others within the Welsh population. My Lady, you saw an example of a Welsh GP in the impact video that was shown, many of those people who sought to reassure and to reach communities who were worried about having the vaccine. Again, with respect, we agree with Counsel to the Inquiry and other Core Participants that it is important that this work on vaccine equity and reaching hard-to-reach groups is ongoing and survives the pandemic.

And as I mentioned, also at the beginning, my Lady, the Welsh Government acknowledges that there are further lessons to be learned, not only from what went well, but also what we could have done better, and we welcome the Inquiry’s analysis of those lessons to be learned, and improvements that can be made to ensure the success not only of future vaccine programmes but also of the delivery of therapeutics.

Diolch, my Lady.

Lady Hallett: Thank you very much indeed.

That I think completes the submissions and some extremely helpful and interesting submissions have been made, and I shall undertake to consider them all very carefully with Counsel to the Inquiry, and also to ensure that I read all the written statements again very carefully.

Mr Keith, I think we now move to the first witness.

Mr Keith: My Lady, yes.

Lady Hallett: And I believe we have undertaken to hear her before the break.

Mr Keith: Indeed. So may we have our first witness, please. Jean Rossiter.

If she could be sworn …

Mrs Jean Rossiter

MRS JEAN ROSSITER (sworn).

Questions From Lead Counsel to the Inquiryfor Module 4

Mr Keith: My Lady, we’re not going to seek in relation to any witness your permission specifically each time for statements to be published –

Lady Hallett: No, by default.

Mr Keith: – unless we raise something – by default, thank you.

Lady Hallett: Mrs Rossiter, thank you very much for coming to help us, I hope it’s not too difficult for you, and we will obviously take any care we can to make sure that it’s a relatively pain-free experience.

The Witness: Thank you.

Mr Keith: Mrs Rossiter, thank you very much for attending today and assisting the Inquiry. You have very kindly provided two witness statements, INQ000398406 and INQ000474666 – dated – both – I think dated December 2023 and December 2024. I’m sure you’ve read them both in advance of attending today.

You are a member of the group Covid-19 Bereaved Families for Justice UK, and we heard – I had the privilege of hearing in Module 1 from Matt Fowler, from Joanna Goodman in Module 2, and Mr Sullivan in Module 3, although as we know, he sadly passed away.

So I’m not going to spent any time asking you about the nature of your group, because we know a great deal about it already, other than this: it came into being, did it not, around about the end of April 2020, after Ms Goodman lost her father and Mr Fowler lost his father, and they liaised online, came together, and realised there was a very significant need for such a group to be founded; is that right?

Mrs Jean Rossiter: That’s correct.

Lead 4: I think it has almost 7,000 members now from across the United Kingdom and of course the terrible link between you all is that you all lost loved ones to Covid or suffered some form of harm in the course of the vaccination or therapeutic programmes.

Mrs Rossiter, may I ask you please about your son Peter, whom I know you lost on 11 August 2021 when he passed away having suffered from Covid. He was a very remarkable musician, I gather.

Mrs Jean Rossiter: Yes, he was. Peter was – sorry.

Lead 4: It’s quite all right.

Lady Hallett: You’re bound to get distressed, we do understand, so just take your time, drink some water. I sometimes find that just having a break by drinking some water helps. But please don’t apologise. There are tissues there if you need them.

Mr Keith: Was he, Mrs Rossiter, in fact Young Musician of the Year in high school?

Mrs Jean Rossiter: Yes, he was a very talented classically-trained pianist.

Lead 4: And he studied at the Royal Northern College of Music?

Mrs Jean Rossiter: Yes.

Lead 4: And I think in the Franz Liszt Academy of Music in Budapest?

Mrs Jean Rossiter: Yes.

Lead 4: And he was working, was he not, at a school where, at the time of his death, he was head of a particularly important part of the music structure there?

Mrs Jean Rossiter: Yeah, Peter, he originally worked on supply, as a teacher, and once he qualified, and he had some difficulty initially getting a job but he secured this job mainly as a maternity leave job, providing cover for that teacher, who then decided not to go back to school. So he started as a teacher, and he very quickly progressed to become head of music in that school.

At the time, when Peter first started music, although it was being presented in the school, it wasn’t really taken up that much by the kids. He actually managed to bring that subject right up, and he really made it into a very popular subject. He even actually managed to get kids to take part in the school concerts, which they wouldn’t do before. He arranged bands, he got them into groups, and he even managed to get some of the staff to actually form a group as well, and take part in the concerts with the kids. So it became a very popular subject in the school.

Lead 4: And he was the subject leader, he was head of the music department?

Mrs Jean Rossiter: He was the subject leader, yeah.

Lead 4: We understand that he continued to work there throughout the pandemic?

Mrs Jean Rossiter: He did, yeah.

Lead 4: And the school had obviously remained open for the children of key workers, and looked after, I think, other children who had SENs.

He had to wait for a while until he was called up for his first dose, he received a vaccine on 14 May 2021. But I think that there were problems getting a second dose, the process by which he came to be invited for a second dose wasn’t very straightforward, was it?

Mrs Jean Rossiter: No, it wasn’t. He only got his first vaccine in May. And I have to add at this point, when Peter actually got his first vaccine, this was at a point when everything in the country was starting to open up, and shops, and restaurants and, you know, the schools had gone back, were all open. People were allowed to gather. The European Cup final was on and people were gathering to watch that, and Peter only then was getting his first vaccine. He had had to wait until May, despite the fact that he as a teacher was a key worker and, you know, he was looking after children of other key workers, and those key workers were actually in contact with Covid cases, or some of them were. You know, the children were seen at the time to be carriers of the virus, and to this day, I can’t understand why teachers were not given priority for that virus, for the vaccine.

Lead 4: And notwithstanding that he did receive a second dose, he caught –

Mrs Jean Rossiter: He only –

Lead 4: – Covid afterwards?

Mrs Jean Rossiter: He only received his second dose eight weeks after the first dose, that was in the July, and I was really very concerned about this because I thought that the – you know, the manufacturers of the Pfizer vaccine had said that ultimate – for protection, they should have had – that you should have the vaccine within three weeks, and yet Peter waited eight, because the science, so I believe, said that you were okay up to 12 weeks.

Now, Peter had his second virus – second vaccine within – in eight weeks, and, yes, even his first vaccine hadn’t protected him.

Lead 4: And one of the important issues, of course, we’re looking at in the course of this module, Mrs Rossiter, is the dosage interval.

Mrs Jean Rossiter: Yes.

Lead 4: So we’ll be hearing plenty of evidence on that topic.

After he received his second dose he nevertheless got Covid, and very sadly fell very seriously ill very quickly.

Mrs Jean Rossiter: He did.

Lead 4: He was taken to hospital, he was placed in an ICU, and I’m very sorry to say that, despite being intubated and looked after there, he passed away on 11 August.

So you’ve obviously got some very serious concerns about the key worker issue, whether or not he should have been offered a vaccination earlier, and the dosage interval as well.

Mrs Jean Rossiter: I’d also query, if I could, about the quality of the vaccine, and, you know, whether or not – was there something wrong with that vaccine that it didn’t protect Peter? I don’t know. I’ve no way of checking on that. Nobody was able to tell me.

I even contacted Pfizer themselves about the vaccine, and they actually told me that when Peter had his second vaccine, because he actually tested positive so soon afterwards, he wasn’t fully protected.

Lead 4: Mm.

Mrs Jean Rossiter: It just didn’t make sense to me –

Lead 4: Vaccines –

Mrs Jean Rossiter: – on what we’d been told.

Lead 4: – we will hear, don’t provide a hundred per cent protection, but we will be calling evidence about the degree of protection and effectiveness and the sort of protection they provide, and that’s another important issue we will look at.

Mrs Rossiter, given the large membership of Covid-19 Bereaved Families for Justice Group, your members have obviously raised a wide variety of issues, and you have taken the care to identify some of those issues and concerns in your witness statement.

I’m just going to run briefly through and identify some of the major points which are raised in your statement, and if you just agree, if you’d be so kind, as to whether or not they are indeed matters which have been raised by you through your members.

Going beyond, obviously, the tragedy of individual cases where people died from Covid, we can’t do about investigating in individual cases, but the issues which are raised in general terms by your members are delays in receiving vaccines, so a question about the delivery of vaccines and how quickly they were made available, concerns about poorly communicated public health guidance, quite a few members have raised concerns about this issue of the dosage interval.

Mrs Jean Rossiter: Absolutely.

Lead 4: And also between the – the gap between the second and third doses, between the second and the booster doses.

In your legal team’s opening submissions, questions have been raised about specific prioritisation, for example, there’s one particular boy who had complex needs, but didn’t appear to have received early vaccination. There is the general issue of availability of and access to antivirals and therapeutics; that’s been raised by quite a few of your members, hasn’t it?

Mrs Jean Rossiter: Yes. Yes, it has.

Lead 4: You’ve mentioned the issue of whether or not key workers should have been prioritised for early access to vaccination, beyond working in the health and care sectors. Do quite a few of your members ask why particular sectors of the population, such as transport workers and teachers, didn’t receive priority vaccination?

Mrs Jean Rossiter: Yes, indeed.

Lead 4: And also, very credibly on the part of these members, quite a few of your members have asked questions about whether other people in the United Kingdom, but particularly members of the ethnic minorities, properly received access to vaccination, to vaccines, and also whether or not the system equitably allowed for them to receive vaccines when they were due to receive them?

Mrs Jean Rossiter: Yes, that’s –

Lead 4: That seems to have been a point of particular concern for your members –

Mrs Jean Rossiter: (Witness nodded)

Lead 4: – that everybody had a fair crack of the whip?

Mrs Jean Rossiter: Yes.

Lead 4: Right.

Mrs Rossiter, that’s extremely helpful. Thank you very much. That allows us to understand more clearly the main areas of concern that your members have had.

Mrs Jean Rossiter: Thank you.

Lady Hallett: Ms Rossiter, I too am the mother of two sons, and of similar age to Peter, so I can only imagine the pain and the grief that you’re going through. So thank you so much for coming along to help us. I know you’ve already done a lot to ensure that his memory doesn’t die, and I hope that your remarks today, your helpful evidence, will help keep him alive as well.

And I think as well as the important points that Mr Keith has just taken you through, I think one of the most important points from my point of view is that so many people said Covid-19 only affects the older people.

The Witness: Exactly.

Lady Hallett: You had a fit and healthy young son, under 40, and so it helps remind people that we’re not just about protecting people who some may think have had a good innings, we’re about protecting the whole population.

The Witness: Indeed, yes. Yes, Peter was – he always kept himself fit. And he followed the rules. We all did. And it just seems to us, as parents, is that we did everything right, and yet Peter lost his life still. As did so many of similar families who are in our group, and I believe all of our families really deserve to be heard, and for those cases to be taken into account.

Thank you very much for letting me come.

Lady Hallett: Well, thank you very much for all the help you’ve given and having the courage to come along and help me. And I know that when I break your legal team will ensure that you have the support that you will need, but also the Inquiry, as your legal team know, provide support if you need it as well.

So thank you very much indeed.

The Witness: Thank you.

Lady Hallett: I shall break now and return at – shall I say 11.40 so that the team can have a chance to talk, and then perhaps a break themselves. Twenty to.

(11.21 am)

(A short break)

(11.40 pm)

Lady Hallett: Yes.

Mr Mansell: My Lady, the Inquiry calls Melanie Newdick, please.

Ms Melanie Newdick

MS MELANIE NEWDICK (affirmed).

Questions From Counsel to the Inquiry

Lady Hallett: I hope we haven’t kept you waiting for too long.

The Witness: That’s fine.

Lady Hallett: We totally understand this is going to be really difficult for you and we’re very grateful to you for coming along.

The Witness: Don’t worry, it’s 600 miles to come down, so …

Lady Hallett: I didn’t realise you’d come quite that far.

The Witness: Yes, yeah.

Mr Mansell: Please could you give the Inquiry your full name.

Ms Melanie Newdick: Yeah, my name is Melanie Newdick.

Counsel Inquiry: Thank you very much for attending all that way to assist the Inquiry today.

A few preliminary matters. I’m going to ask you to keep your voice up, please don’t speak too quickly, and ask me to repeat anything if it’s not clear. Okay?

Ms Melanie Newdick: Okay, yeah.

Counsel Inquiry: You have kindly provided a witness statement to the Inquiry on behalf of Scottish Covid Bereaved, or SCB, and that is INQ000472173. Are the contents of that statement true to the best of your knowledge and belief?

Ms Melanie Newdick: Yes.

Counsel Inquiry: The Inquiry is, of course, familiar with Scottish Covid Bereaved, and is grateful for the evidence it has provided in earlier modules of the Inquiry. I will deal very briefly with the background of the organisation. It started out as passed of the group Covid Bereaved Families for Justice UK, which was formed on Facebook in June 2020.

Ms Melanie Newdick: Yes.

Counsel Inquiry: Then in September 2022, SCB became a completely separate group?

Ms Melanie Newdick: Yes, it did, yeah.

Counsel Inquiry: You note the diversity of your membership, which includes healthcare and other frontline and key workers?

Ms Melanie Newdick: Yes.

Counsel Inquiry: And you note that some of those are suffering from post-traumatic stress disorder and other impacts of the trauma that they experienced during the pandemic?

Ms Melanie Newdick: Yes.

Counsel Inquiry: You also have members who are either from an ethnic minority group or who have a loved one who died who was from an ethnic minority group?

Ms Melanie Newdick: We do, yes.

Counsel Inquiry: And in that regard you highlight the Scottish Government vaccine data which shows that the highest vaccine rates were for white people with lower uptake among ethnic minorities?

Ms Melanie Newdick: Yes.

Counsel Inquiry: You also have members suffering from Long Covid?

Ms Melanie Newdick: Yes.

Counsel Inquiry: Your aims, very briefly, are that you’re a group of bereaved individuals united in a common goal?

Ms Melanie Newdick: We are.

Counsel Inquiry: And by sharing your experiences you want to assist this and the Scottish Inquiry in establishing what happened and making recommendations for the future.

Ms Melanie Newdick: Absolutely.

Counsel Inquiry: Now your statement deals with a number of issues of concern to SCB, and I want to start, please, with the pace of delivery, vaccine delivery, in Scotland, including vaccination of vulnerable hospital inpatients and care home residents.

Ms Melanie Newdick: Yes.

Counsel Inquiry: This is a topic that is of particular concern to SCB. Could you tell us a little bit about the concerns you have?

Ms Melanie Newdick: Yes. If we take ourselves back to when we very first had vaccines, at the end of 2020, there was an initial fast pace of delivery, but that slowed. So it was not delivered across the – at the same pace across the whole of Scotland. So the part of Scotland where I live, which is a very remote part of Scotland, the delivery slowed because Christmas came. So some people didn’t get the vaccine as early as they could, which could have had impacts for them as well. And we also had the situation where people missed their opportunity to get vaccinations because they were in hospital. Which seems incredible, really, when you think about it.

Counsel Inquiry: Another issue you raise is the question of whether Scotland lagged behind England in terms of delivery; is that something else that you’re –

Ms Melanie Newdick: Yes, we would really appreciate some insight into that from the Inquiry. And then, you know, when you look at the – particularly the difference between the different parts of Scotland – Scotland is pretty huge. It’s a third all the land in the UK. So – and the bit I’m in is a particularly remote part of Scotland as well. So there’s some real differences within the speed of delivery within Scotland itself.

Counsel Inquiry: You also highlight the fact that different health boards in Scotland took different approaches to vaccination delivery.

Ms Melanie Newdick: Yes.

Counsel Inquiry: What are your concerns about that?

Ms Melanie Newdick: Well, I’m not sure whether the Inquiry is aware that now in Scotland we have a completely different process for vaccinations than you have here in England. So you are able to go to your GPs to get vaccinations, we can’t do that any more in Scotland. April 2023, no GPs in Scotland, or very few, have been able to give any sorts of vaccinations, not Covid, not flu, not all the childhood vaccinations. We have to go through a completely different process. We have to go to clinics arranged by the health board.

So our concerns are, now, whether – if we put ourselves back to when we had the Covid pandemic, if we had another pandemic tomorrow, would our system be able to deliver vaccines at the pace that we did previously? And at the minute, the data seem to say that it can’t. We’re seeing a lot of differences in vaccine uptake.

So, to give you a very quick example, we’re having a huge flu outbreak at the minute, as I’m sure you know. The vaccine uptake in the Highlands is now half the rate compared – with the new system, compared to what it was when GPs provided that service. So that’s huge implications for everything, but also for another pandemic.

Counsel Inquiry: You’ve mentioned the GP model. Was that particularly important in Scotland for reaching rural communities?

Ms Melanie Newdick: It’s really important. It’s really important for everybody. I mean, any vaccine system should be designed to make it as easy as possible for as many people as possible to get a vaccine, so now we have an extra step, which doesn’t just make it difficult for everybody to get a vaccine; it makes it even more difficult for those that we already talked about: anybody in an ethnic group, anybody from a deprived area, anybody who has any concerns about vaccines. That’s now an additional step and an additional barrier that we have in our system that you don’t have in England.

Lady Hallett: Sorry, can I just go back. So what is the system? So I recently had the RSV infection jab. I just go down to my GP and it’s done. How would you do that in Scotland?

Ms Melanie Newdick: Okay, so knowing that I was going to come down here and you’ve got a lot of flu in London, I rang the vaccination helpline and I could have gone to a clinic today 20 miles away from home between 1 and 3 pm. I could go to a clinic tomorrow, which is 220 miles away from my home, which is the next one available. We have to ring the health board or we have to go online and we have to find a clinic to go for that vaccination. We can’t go to the GP for any vaccination, not a tetanus, not a childhood vaccination not a flu, not a Covid, nothing.

Lady Hallett: Do they have hours that cater for people who are working during a normal working day but isn’t a normal working day for everybody?

Ms Melanie Newdick: No, all the hours – I had a look at the whole schedule for January. Most of the hours are something like 10 to 12 or 1 to 3, 2 to 4. There’s no evenings, there’s no weekend clinics either. So it makes it very difficult.

Lady Hallett: I can imagine.

Ms Melanie Newdick: Yes, yeah.

Mr Mansell: We’ve touched upon barriers for vaccination for people, and one of the issues raised in your statement is the barriers faced by elderly or those vulnerable person in shielding categories.

Ms Melanie Newdick: Mm.

Counsel Inquiry: What are SCB’s concerns in relation to that?

Ms Melanie Newdick: Well, we raise concerns about having to go to, to take vulnerable people to vaccination clinics. That is now the system. You have to go to either a specific day where people are coming in, or you have to go to a drop-in clinic to get your vaccinations. So our concerns are, is this new system, is it making it easier or is it making it more difficult for those people to access vaccines?

Counsel Inquiry: I think those are the major areas of concern that we’ve touched upon. I just want to go through, at quite a high level, some of the other issues raised in your witness statement. One of these is communication about vaccine development, and SCB’s concern that the development of the Covid-19 vaccines wasn’t communicated clearly enough to the public so as to alleviate any concerns about it; is that right?

Ms Melanie Newdick: Yeah, and I think in the opening statement yesterday Mr Keith set out what the process was, and instead of it being a linear process with the steps following on from each other, they ran concurrently. But I’m not sure people knew that. And maybe, if that had been communicated, it might have helped, and then it would have stopped people thinking that the process had been shortened and steps had been removed.

Counsel Inquiry: Another issue you raise is the cancellation of the Valneva contract, this was the UK Government’s decision to cancel the contract with the vaccine manufacturer Valneva. The company was due to manufacture some of those vaccines at a plant and in Scotland –

Ms Melanie Newdick: Yes.

Counsel Inquiry: – and you would like to know and your members would like to know if the cancellation had an impact on the overall vaccine programme in the UK or in Scotland in particular?

Ms Melanie Newdick: We absolutely would, especially considering that Valneva went on to get full European approval, and because the type of vaccine would have been really – it’s especially suitable for people with health conditions that couldn’t have other vaccines.

Counsel Inquiry: That’s right. It’s a different modality –

Ms Melanie Newdick: Yes.

Counsel Inquiry: – to mRNA vaccines, for example?

Ms Melanie Newdick: Yes.

Counsel Inquiry: Another issue you raise is the vaccination of key workers, and you ask why certain key workers were prioritised over others?

Ms Melanie Newdick: Yes. And I think, you know, we have questions about again whether – how those decisions were made. You know, was it the role they were doing? The type of job? How did those decisions come about? So a good example, a quick example, when we had the initial vaccines for care home residents, care home workers couldn’t get the vaccine at the same time. So in our local care homes that’s how Covid went into the care homes from a community outbreak through the staff, and then 47 people died in my local town, just in care homes, from that outbreak.

Counsel Inquiry: In your statement you set out a number of lessons you believe can be learned about vaccination and therapeutics in Scotland and recommendations for the future. One of the main issues of concern for SCB was the distribution of the vaccine to those in vulnerable categories; is that right?

Ms Melanie Newdick: Yes. We had some concerns about that, how that happened for Covid-19. We have some concerns about how that might happen under this new system, and would the same people have the same problems or would it be more accessible this time?

Counsel Inquiry: You also highlight the fact that in future it may be helpful to consider allowing individual health boards to implement their own system for vaccine distribution in the future, suited to their particular population. Is that something you’d like to see?

Ms Melanie Newdick: Yeah, exactly. So the Highlands, where I live, it’s geographically the same size as Belgium. It’s got 2.5% of the population but we have to use the same centralised system because that’s what the Scottish Government has told all the health boards in Scotland they have to do. It doesn’t work for a remote, rural community. Who is going to drive 220 miles to get a vaccine? I’m very keen on vaccines, but even I’m not going to do that.

So we need a system that’s actually going to work for the population that it serves and not a central one-size-fits-all policy.

Counsel Inquiry: You would also like to see better communication in the future with relatives in situations where therapeutics are being offered, and you make the point that those who are unwell and vulnerable may not be in a position to make decisions alone.

Ms Melanie Newdick: Yes. I think we would like to see much better communication around those. So again, what lessons going forward, yes.

Counsel Inquiry: And you also raise the issue of access to accurate information, and we’ve touched upon this already in discussing the development of the vaccines, but you are concerned about people being able to make informed decisions about vaccines, and therefore you would like to see some stricter controls on social media and indeed the mainstream media when it comes to misinformation.

Ms Melanie Newdick: Yes, I’m sure you’re aware that one of the – Facebook has just decided it’s going to get rid of all its moderation and go for a community moderation. That’s potentially got a huge impact. I think an important thing to remember about, or to think about for vaccine hesitancy, is that the hesitancy is not usually about the vaccine, it’s usually – it usually comes from trauma, and the impact that that has on trusting anyone in authority, whether that be a health board, police officers, solicitors, maybe, I don’t know. So that’s where it comes from. So it’s about having, you know, it’s thinking about it in a trauma-informed way which I know the Inquiry does.

Our system in Scotland currently has put an extra barrier for those people. They can no longer have a chat with their GP and they can no longer, when they’re in for something else, the GP can no longer say to them, and take that opportune moment to say, “Okay, let’s get your vaccinations done.” “Well, I’ve got some questions about it”. “Okay, let’s deal with them now.”

It doesn’t work like that any more so we’ve made it even harder for the people.

Just quickly, that system when it was designed, the Scottish Government, they got in members of the public to talk to them about redesigning the new system. They deliberately excluded anybody that was vaccine hesitant, saying that they felt they had nothing to add to the process. You know, really, if we’d built this process, this new process around these people, it would have worked for everybody else as well and they would have had more access to vaccines which are, after all, the most successful public health intervention we have.

Mr Mansell: Ms Newdick, we have covered a huge amount of ground. Thank you very much for that evidence.

My Lady, that concludes the evidence of this witness, unless you have any questions.

Lady Hallett: No, thank you, Mr Mansell.

We haven’t dealt with your own bereavement, Ms Newdick, but I know you’ve told the Scottish inquiry about the death of your mother, and I appreciate it must have been – I’ve read it – it must have been extremely difficult for you, but at least you got her home.

The Witness: Yes, we did, thank you. Thanks.

Lady Hallett: And thank you so much for all the constructive and helpful comments you’ve made. You’re a very good advocate for the cause.

The Witness: No problem, thank you.

Lady Hallett: And safe journey back.

The Witness: Yes, yes, I’ll be flying back tonight, thank you.

Lady Hallett: Do you follow us remotely?

The Witness: Yes, absolutely.

(The witness withdrew)

Lady Hallett: I understand, Ms Mitchell, if it’s okay with you, we’ll carry on. Thank you.

Mr Mansell.

Mr Mansell: My Lady, the next witness, please, is Fiona Clarke.

Ms Fiona Clarke

MS FIONA CLARKE (sworn).

Questions From Counsel to the Inquiry

Lady Hallett: I hope we haven’t kept you waiting, Ms Clarke.

The Witness: That’s okay. Thank you.

Mr Mansell: Can you give the Inquiry your full name, please.

Ms Fiona Clarke: Fiona Louise Clarke.

Counsel Inquiry: Thank you very much for attending today to assist the Inquiry. I’m going to ask you to keep your voice up, please.

Ms Fiona Clarke: Yes.

Counsel Inquiry: Speak into the microphone, so that the stenographers can make a note of what you’re saying. Ask me to repeat anything if it’s not clear.

You’ve provided a witness statement to the Inquiry on behalf of Northern Ireland Covid-19 Bereaved Families for Justice, or NICBFFJ. That is INQ00047358. And are the contents of that statement true to the best of your knowledge and belief?

Ms Fiona Clarke: Yes, it is.

Counsel Inquiry: The Inquiry is familiar with the group NICBFFJ and it has benefited from the evidence it has given to the Inquiry in earlier modules. The group started in December 2021, and is a branch of the UK-wide Covid Bereaved Families for Justice group; is that right?

Ms Fiona Clarke: Yes, that’s correct.

Counsel Inquiry: It was formed as both a support group and an action group, and seeks to challenge decision makers to highlight issues and safeguarding concerns, as well as address the detrimental impact that visiting restrictions were having upon patients and residents in hospitals and care homes and their families?

Ms Fiona Clarke: Yes.

Counsel Inquiry: Is that right?

Ms Fiona Clarke: Correct, yes.

Counsel Inquiry: You explain in your statement that the group represents and is made up of members who have lost loved ones to Covid-19 in a variety of circumstances, including in care homes, hospitals, and in the community?

Ms Fiona Clarke: Yes.

Counsel Inquiry: And the aims of the group include applying pressure to ensure that there is accountability for the past actions of the UK and Northern Ireland governments, and providing a collective voice for bereaved families and a supportive space for them to connect?

Ms Fiona Clarke: Yeah.

Counsel Inquiry: Now I’d like to ask you at the outset, please, to speak a little bit your mother, Margaret Lusty. Your mother sadly died in January 2021 at the age of 90.

Ms Fiona Clarke: Yes.

Counsel Inquiry: She had been a shop owner –

Ms Fiona Clarke: Mm-hm.

Counsel Inquiry: – and proprietor earlier in her life?

Ms Fiona Clarke: Yes.

Counsel Inquiry: You describe her as “a country woman from Cookstown”, and say “nothing would get her down”?

Ms Fiona Clarke: That’s right.

Counsel Inquiry: And despite her age and health difficulties with kidney disease, she was still independent and still driving; is that right?

Ms Fiona Clarke: Yes, that’s right.

Counsel Inquiry: Your mother was in the phase I priority group for vaccination. She received a first dose on 7 January 2021. That was around five weeks after the vaccine had first been approved?

Ms Fiona Clarke: Right.

Counsel Inquiry: And her experience of being vaccinated was a positive one?

Ms Fiona Clarke: Yes.

Counsel Inquiry: Could you speak a little bit about that.

Ms Fiona Clarke: Yes. The vaccination – we all wanted to be vaccinated to protect her. We didn’t want to bring Covid in to her. She was also looking forward to getting her jabs to protect herself.

Now, whenever she was vaccinated, I was in hospital myself at that time, with Covid, so I really wasn’t aware, the process if you like, of her going through, but she was happy enough. I remember her telling me it was like a conveyor system and things were done very safely and she was quite relieved to get the first vaccine.

Counsel Inquiry: I think she went with your brother; is that right?

Ms Fiona Clarke: Yes, my brother took her, yes.

Counsel Inquiry: To be vaccinated at a local health centre in Glengormley. And it is, as you’ve just alluded to, a rolling system. She went in one door –

Ms Fiona Clarke: And out the other.

Counsel Inquiry: – and out the other.

Ms Fiona Clarke: Yes.

Counsel Inquiry: Which was something that was thought to be very good because she wasn’t spending a lot of time with other people in that setting?

Ms Fiona Clarke: That’s correct. She said to me that it was – she was just in and straight in again. So …

Lady Hallett: Did she not do the – I remember you had to sit down for 15 minutes or something after; did she not do that?

Ms Fiona Clarke: No.

Lady Hallett: Oh.

Ms Fiona Clarke: No, she was straight out. She said straight out the next door.

Mr Mansell: It may have been that that was introduced slightly later in the process but we can –

Lady Hallett: It may be, yes. I wasn’t in the first cohort.

Mr Mansell: Nevertheless, despite that positive experience with the vaccination itself, your mother tested positive for Covid-19 on 12 January 2021, and was admitted to hospital on 16 January.

Ms Fiona Clarke: Yes, that’s correct.

Counsel Inquiry: You were at the same hospital, as you’ve explained, because you had Covid-19 at the time?

Ms Fiona Clarke: Yes.

Counsel Inquiry: You were allowed to see her in the hospital. You explain in your statement that it was a bit of a battle but you got to see her?

Ms Fiona Clarke: Yes.

Counsel Inquiry: You sat with her all night and comforted her, and you managed to see her again the next day, but is it right that she died later that day, on 17 January 2021?

Ms Fiona Clarke: Yes, she died about a quarter to three that afternoon.

Counsel Inquiry: You have set out in your statement in very moving terms the sad and distressing experience that your mother had while she was in hospital. One of the issues you raise is whether your mother was provided access to therapeutic treatment whilst she was in hospital?

Ms Fiona Clarke: Yes.

Counsel Inquiry: Something that’s of concern to you.

Ms Fiona Clarke: Yes.

Counsel Inquiry: Your mother’s story raises a broader issue about vaccines, does it not, and that is about the pace of vaccine development and approval and whether things could have been done quicker?

Ms Fiona Clarke: Most certainly, yes.

Counsel Inquiry: Is that something that is of concern more widely to NICBFFJ members?

Ms Fiona Clarke: It’s such a vast group, you know, we have different opinions on this. My opinion at that time, because I was living with my mother, was to protect her. And my mother’s opinion was she would take the vaccine to stop her from getting Covid, or the symptoms from being as severe as what we believed them to be. There’s other people within the group who don’t believe in the vaccines, who are – believe that the vaccines have maybe caused illnesses. That certainly is not mine.

Counsel Inquiry: One thing you raise in your statement is that you would have quite liked the option for your mother to have received a vaccine –

Ms Fiona Clarke: Oh, yeah.

Counsel Inquiry: – before it had been through the authorisation process?

Ms Fiona Clarke: Yes, I would have.

Counsel Inquiry: Is that something you think she would have been interested in herself?

Ms Fiona Clarke: I know she would have been, yes.

Counsel Inquiry: I’m going to move through some of the other issues that you raise in your witness statement that are relevant to this module of the Inquiry now, but thank you for sharing that story about your mother.

One of the issues of concern to your group is relatives contracting Covid-19 from staff who were carrying out the vaccination programme.

Ms Fiona Clarke: Yes.

Counsel Inquiry: Could you tell us a little bit about the concerns that you have about that?

Ms Fiona Clarke: Well, people within care homes for instance, you know, their family members who were vaccinated, they never got to see their loved ones or got to be with their loved ones. Maybe people within the care homes that were working there hadn’t been vaccinated. And it was so hard to get my head round that. My sister at that time, she was working in a care home. And it was also haphazard at that stage. Do you know, there was no uniformity. Some care homes, you were allowed to be with your loved ones. Some, you weren’t.

Counsel Inquiry: Another issue you raise in your statement is access to vaccine clinics and vaccination centres for housebound and elderly patients.

Ms Fiona Clarke: That’s right.

Counsel Inquiry: That’s something that is of concern to your members?

Ms Fiona Clarke: Yes, it is. There’s parts of Northern Ireland that are quite rural, and there are people, if you like, they’re immobile. They should have had like a mobile – a doctor on call to go out and administer the medication, administer the vaccines. It would have been so much more helpful.

Counsel Inquiry: You’re concerned there were missed opportunities –

Ms Fiona Clarke: Absolutely. And again, it was just down to bureaucratic rules, really.

Counsel Inquiry: You’ve explained that within the group there are different views on different aspects of vaccination.

Ms Fiona Clarke: Yeah.

Counsel Inquiry: The issue of vaccination as a condition of deployment is one that perhaps splits opinion within your group. Could you give us an idea of what the views are?

Ms Fiona Clarke: Yes, certainly there’s people that don’t believe in the vaccine, that believe that the vaccine could possibly cause more harm than good, but my intentions at that time, I can only really say my intentions, my intention at that time was to protect my mother. I was going to work, I was coming home, and I needed to protect her. So I would have taken anything, regardless. You know, I had no concerns if it was going to do me harm; it was to protect her.

Counsel Inquiry: You question why, in June 2021, when the government in England indicated that vaccines would become compulsory for care home staff, the government in Northern Ireland did not take the same approach; is that something that is of concern to your members?

Ms Fiona Clarke: Absolutely. It was just, as I’ve said before, it was so haphazard. Nobody knew what the other one was doing.

Counsel Inquiry: Another issue you raise is in relation to public messaging and the clarity and adequacy of public messaging on vaccines and vaccine delivery. And you say that some of your members would like to know whether the Northern Ireland Government’s messaging about vaccine efficacy was in terms of absolute or relative risk. It’s understanding how those figures were presented to the public. Is that what you want to understand?

Ms Fiona Clarke: Yes.

Counsel Inquiry: Vaccine safety is raised within your statement. You’ve explained you had no concerns about vaccine safety?

Ms Fiona Clarke: That’s correct.

Counsel Inquiry: Some of your members do have concerns. And you wonder whether there’s a – any perceived lack of openness about the process for development contributed to vaccine hesitancy amongst some people in Northern Ireland; is that right?

Ms Fiona Clarke: Yes, absolutely.

Counsel Inquiry: You also raise the issue of disparity in vaccine uptake, in particular as between Health Service staff and staff in care homes. Perhaps this goes back to the haphazard point you were making before?

Ms Fiona Clarke: Yes.

Counsel Inquiry: And you set out a series of recommendations that you would like the Inquiry to consider. Is there anything in particular you want to say today about lessons learned or recommendations you’d like to see implemented in the future, from your group’s perspective?

Ms Fiona Clarke: I found that whenever I was in hospital, I can’t remember in the time that I was there that I had seen the doctor. It was all nurses. Certain hospitals would have been more willing, shall we say, to let people be with their loved ones than others. I found it very cruel. I found it a very inhumane way to treat people. Again, I’m only talking about my own personal opinion.

Counsel Inquiry: Is it right that you stress, and NICBFFJ stresses, that a partnership approach between patients and patients’ families and healthcare providers is important in this context so that there is communication and understanding of these issues?

Ms Fiona Clarke: Yes, good communication skill, yes.

Counsel Inquiry: You also explained that there should be proper engagement by healthcare professionals with patients and patients’ families in order to advise and explain on the available therapeutic options –

Ms Fiona Clarke: Absolutely.

Counsel Inquiry: – perhaps that you felt was missing in relation to your mother?

Ms Fiona Clarke: Yes.

Counsel Inquiry: You also stress the urgent need to develop and trial therapeutics for treating Long Covid?

Ms Fiona Clarke: Yes, definitely, yes.

Counsel Inquiry: And is there anything else you would like to tell the Inquiry today that’s relevant to vaccines and therapeutics?

Ms Fiona Clarke: No, that’s it.

Mr Mansell: Okay.

Well, my Lady, that concludes the witness.

Lady Hallett: Thank you very much, Mr Mansell.

Thank you very much, Ms Clarke, for coming along. It sounds as though your mother was a wonderful character.

The Witness: Yes, she was, yes.

Lady Hallett: You must miss her enormously. And Covid has obviously hit your family really hard, and it’s hit you particularly hard: you’ve been hospitalised with Covid and you are still suffering from Long Covid.

The Witness: Yes.

Lady Hallett: So I can imagine how difficult it must have been just for you just to travel here. So thank you for making the effort. You have come from Northern Ireland, have you?

The Witness: Yes, I have, yes.

Lady Hallett: Well, wishing you a very safe journey back and thank you so much for all your help.

The Witness: Thank you, my Lady. Thank you.

(The witness withdrew)

Mr Keith: The next witness is Anna Miller, please.

Ms Anna Miller

MS ANNA MILLER (affirmed).

Questions From Lead Counsel to the Inquiry for Module 4

Mr Keith: Could you commence, please, by giving the Inquiry your full name.

Ms Anna Miller: Yes, it’s Anna Catherine Miller.

Lead 4: Ms Miller, thank you very much for attending today, and for assisting the Inquiry. Whilst you give evidence, could I just remind you to try to keep your voice up, and speak as clearly as you can into the microphone so that it can be recorded by the stenographer as easily as possible.

Ms Anna Miller: Yes.

Lead 4: You very kindly provided a witness statement, dated 4 October 2024, on behalf of the group whom you represent today, the Migrant Primary Care Access Group. It’s INQ000474407.

Was that a statement that was prepared jointly by senior employees of the four organisations within the group that you represent?

Ms Anna Miller: Yes, exactly.

Lead 4: Let’s just have a look for a moment, if we may, at what those four organisations consist of. The first one comprises Doctors of the World UK. Is that part of Médecins du Monde?

Ms Anna Miller: Yes, it’s part of the Médecins du Monde international network.

Lead 4: And what, in essence, is that group concerned with?

Ms Anna Miller: So we’re an international – it’s the organisation that I work for, and we’re an international organisation that provides medical care across the world. Sometimes it’s in emergency settings, but also sometimes it’s looking at unmet healthcare needs in countries that have fairly well functioning healthcare systems and supporting people who aren’t able to access those healthcare systems.

Lead 4: And are you head of policy and advocacy in fact at that organisation, Doctors of the World UK?

Ms Anna Miller: Yes. In the UK, yeah.

Lead 4: In terms of its functions in the United Kingdom, does it help support a number of individuals enabling them to access NHS services better?

Ms Anna Miller: Yes, exactly. We see between 1,000 and 2,000 people a year, and it’s always people who are struggling to access NHS services.

Lead 4: The second organisation is the Joint Council for Welfare of Immigrants. Is that a charitable organisation that advocates for migrant justice?

Ms Anna Miller: Yes.

Lead 4: And, very roughly, how many clients or people on an annual basis does the joint council support? We don’t need the precise figure, Ms Miller, roughly will do.

Ms Anna Miller: My memory is that I think it’s in the same kind of region. I think it’s a little bit less than Doctors of the World, I think we’re probably talking under a thousand. I’m sorry, I don’t know off the top of my head.

Lead 4: It’s not a memory test. You said in your statement that it’s around about 200 clients that you help a year.

Ms Anna Miller: Right, okay.

Lead 4: The third organisation is Kanlungan. What is that?

Ms Anna Miller: Kanlungan is a consortium of organisations that represent Filipino and South East Asian organisations across the UK.

Lead 4: And lastly but not least, Medact. What organisation is that?

Ms Anna Miller: So Medact is a membership organisation. Most of their members are healthcare professionals, and as an organisation, it works to address, I guess, socioeconomic barriers and health inequalities more generally.

Lead 4: You’re representing today a group which very credibly assists migrant workers, members of the migrant community in the United Kingdom. Could you give us some idea, please, of the numbers. What proportion of the UK population, for example, is made up of people born abroad, foreign-born people?

Ms Anna Miller: So it’s about 15% of the UK population.

Lead 4: And just by way of an overview, what particular issues, in terms of vulnerabilities and where they are subject to inequalities and to lack of access to healthcare, does that group of foreign-born people give rise to? What areas and issues and concerns, in very general terms, is your group concerned with on their behalf?

Ms Anna Miller: Well, I mean, of course, not all migrants in the UK face adverse socioeconomic conditions and low socioeconomic conditions, so to a certain extent I’m not speaking on behalf of, you know, every single migrant in the UK, but the people who access the services for the organisations that I represent on the whole – well, without exception – is people who face extremely adverse socioeconomic circumstances. Most face extreme poverty or even destitution.

Their – the precarity of their situation is exacerbated by insecure immigration status that often prevents them from working legally, so they end up working in dangerous and exploitative conditions. Very, very limited access to housing and accommodation. And also I think it’s important to note the level of discrimination, racism and vilification by media, by press, that this – that the people who we represent, our patients, are also subject to.

Lead 4: You identify in your statement a number of other prevalent characteristics, that is to say aspects of their life and employment in the United Kingdom, which has given rise to concern generally. Just having a quick look at those, do many of the people whose interests you represent have, for example, chronic mental health issues?

Ms Anna Miller: Yes.

Lead 4: Is there a high degree of social isolation, in particular digital exclusion?

Ms Anna Miller: Yes, absolutely.

Lead 4: What is digital exclusion?

Ms Anna Miller: Well, when you look at this group, it’s sort of like, in a way a little bit of an unusual form of digital exclusion. I’m generalising here but, like, on the whole, because migrants tend to be younger and they also by default are people who are separated from their country of origin and often separated from family, it’s a population that’s very reliant on digital communication and actually it’s a very – on the whole, a very digitally literate population. Where digital exclusion comes in for this group, it’s entirely linked to poverty and lack of resources. It’s not having enough money to put data on your phone. It’s being relied on – it’s relying on public access open wi-fi networks all the time, which of course, when the pandemic happened closed, so the digital poverty that existed in the first place was enormously exacerbated once public spaces and public wi-fi closed down.

Lead 4: Right. And also, does that cohort of people also exhibit high levels of disability?

Ms Anna Miller: Yes, that’s what the evidence shows.

Lead 4: All right. Now, obviously one of the sectors that was most – or amongst the sectors most impacted by the pandemic was those persons who work in hospitality, transport, and the health and social care sectors. Are those sectors in which the people whom you represent are, in fact, overrepresented?

Ms Anna Miller: Yes, absolutely disproportionately represented across all of those sectors and a lot of those are frontline sectors.

Lead 4: And therefore in the course of the pandemic, their operation and the way in which they were affected by the pandemic, not least because of the fact that many of them kept working in those frontline sectors, were issues which you were directly concerned?

Ms Anna Miller: Yeah, exactly.

Lead 4: Let’s look for a moment, please, at some of the areas in which you’ve expressed – about which you’ve expressed the greatest concern. Is it fair to say that in a general sense, your statement is quite critical of the United Kingdom Government for failing, as you see it, to implement sufficient measures in good time for the protection of the persons whom you represent?

Ms Anna Miller: Yes. Our experience on the whole was that we as organisations, it was left to us to identify and raise issues that the people we represented faced accessing a range of Covid services and just ability to protect themselves from the virus and then, when we did, that that was not – the issues we raised were not properly considered. We either got no response, often there was no action. We were often left to identify what the solutions would be as well, and even when we proposed solutions, that led to no action, or – and I think we’ll come on to this, sometimes when there was an attempt to act on the information we were providing, the information we were providing, the attempts to do that ultimately were completely undermined and hamstrung by a set of policies that were in place and remained in place throughout the pandemic.

Lead 4: Let’s look at what those policies are. Obviously, when dealing with the government, many of the persons whom you represent came up against the operation of the various policies and procedures and processes that the government had put in place for dealing with foreign-born people. So in essence, immigration policies.

Has there been a very significant issue about how immigration policies rub up against public health policies that the government was trying to put into place at the time?

Ms Anna Miller: Yes, and I think the key policy to consider and look at here is the NHS, what we call the NHS charging policy, it’s the policy to charge people, it’s complicated, but people from overseas for NHS treatment. It’s extremely complex and extremely uncertain for anybody to know if they’re going to end up getting charged, but it is applied to migrants living in the UK. It’s complicated, and it depends on what your immigration status is, but it’s applied to migrants who are living in the UK. They’re not overseas visitors, they’re people who are resident in the UK. I won’t go into the details of it, but I think the keys things, takeaway things to understand about this policy is that its main impact is deterrents. It keeps people who worry they might – it might be applied to them from going anywhere near healthcare services and it is partially – it’s partially because the risks associated with the policy are high. It’s not just that you’re going to get a large bill, if the NHS trust decides they’re going to charge you, you get a large bill, and also a 50% fine for accessing that service; it’s also that it carries the risk of being reported to the Home Office and for those who don’t, you know, for those who aren’t migrants and might not understand, being reported to the Home Office runs the risk that you will be put into immigration detention and for some people it runs the risk that you’ll be returned to a country that you fear for your own safety in.

So this is why what we end up seeing as deterrents, is the risk is too high for a lot of people to go anywhere near healthcare services.

And then the second point I’d raise is because it’s such a complex policy for individuals, it’s nigh on impossible, before you enter a service, to know if you are going to end up being charged or not, because charges apply to some services, they don’t apply to others, they don’t apply to public health services. But – this isn’t a comment about migrant patients but all patients, they’re generally – people don’t understand what type of service they’re accessing in the first place, and clinicians always say patients present with symptoms without diagnoses, you might have a good idea of – you know, you might be fairly confident that what you’ve got is an infectious disease and therefore you are not going to be charged, but you might not be right about that. It still carries a risk.

Lead 4: Thank you very much.

I’m just going to ask you to just slow down a little bit. We’re going quite rapidly through it and it’s quite hard for the stenographer to record it all.

The bottom line here is that it obviously differs between nation and it differs in terms of particular cohorts, but if you’re not ordinarily resident in the United Kingdom, if you don’t have “settled” status or citizenship, then you’re liable to be charged by the NHS for what are known as secondary or tertiary NHS services; is that right?

Ms Anna Miller: Yeah.

Lead 4: But as a general rule, that liability to being charged for health services doesn’t apply to primary care, so for example, treatment in an A&E department, or for infectious diseases; is that right?

Ms Anna Miller: Um –

Lead 4: If they’re on a list of prescribed diseases?

Ms Anna Miller: Yes; primary care is GP – and yes, A&E and infectious disease are both also exempt, yes.

Lead 4: All right. So with Covid, the testing for Covid and the initial treatment for Covid was exempt from the charging regime by and large because it formed part of a primary care service for which migrants would not be liable to pay the NHS. But the problem you’ve identified is, people don’t generally understand that, and therefore, there was a terrible fear that if they went anywhere near the NHS they would end up being reported to the Home Office or the NHS might ask about them about their liability to pay and that would expose them to the attention of the Home Office, is that the nub of it?

Ms Anna Miller: Yes, that’s – exactly, yes.

Lead 4: So there are two issues here. One is the complexity of the system by which people may become liable to pay the NHS; and secondly, the link between the NHS and the Home Office?

Ms Anna Miller: Exactly, yes.

Lead 4: All right. Did the government take steps, as far as you understand, to try to explain that nobody would be liable to pay the NHS for primary care treatment, for testing or treatment, or is it your position and the position of your group that those steps didn’t go far enough?

Ms Anna Miller: I would go as far as saying essentially no steps were taken. There was – before the pandemic, there was already an exemption for the testing, treatment of, and – of infectious disease and vaccinations, and essentially, that was in place before the pandemic, because it applied to other infectious disease. And that was the situation that remained throughout, throughout the pandemic. I would say the one thing that did happen is that a period, I think it was about a month after – I think it was April – about a month after the lockdown, the government translated that information about exemptions for public health and specified that Covid was included in that. They translated it into number of languages and hosted it on couple of websites that is not a patient accessible website.

That was the extent of what the government did.

Lead 4: It was a public health website?

Ms Anna Miller: It is a public website. It was what was then called the Public Health England Migrant Health Guide which is a guide for clinicians around best practice with migrant patients.

Lead 4: And the position of your group is that whatever steps the government took to publicise the fact that migrant people were not liable to pay the NHS simply didn’t go far enough?

Ms Anna Miller: Yes. Eventually, when there was, I suppose, an attempt to, like, actually get it out into the public more, that was not until February 2021. So it was only once really the vaccine rollout programme came in that there was any serious attempt that actually people needed to receive this information, even though, you know, we’d had the best part of a year of people being at risk and needing to know about the exemption.

So it wasn’t until then, and at that point the government briefed the Daily Mail, and then a little bit later the BBC, and that was pretty much the extent of it. Those are not places that – you know, that’s not a well thought through attempt to reach migrant communities. Those are not places where migrants in the UK tend to get their information from. So that was the extent of it.

Lead 4: Did your group carry out research to try to understand the extent to which migrant people avoided even getting healthcare or treatment or testing for Covid as a result of either ignorance as to what the position was concerning liability for payment, or because of a fear that if they engaged with the NHS their details would be passed on to the Home Office?

Ms Anna Miller: Yes.

Lead 4: What level of lack of understanding or fear was there in terms of a willingness to seek healthcare?

Ms Anna Miller: Yes. Right at the beginning of the pandemic we did a rapid needs assessment, which included migrant communities with it, and that identified the fear around the NHS and the fear of charges as a key barrier to coming forward. And then later on in the pandemic, both the Medact and the Joint Council for the Welfare of Immigrants, they both carried out separate pieces of research but they were both essentially surveys of healthcare staff and also of migrants themselves, and they both found – one slightly above, one slightly below – 50% of respondents said that migrants wouldn’t go forward to the NHS because of fear of charging and also data sharing.

Lead 4: On the subject of data sharing, in very general terms, the way in which the system worked then was if a migrant sought healthcare from the NHS, for something that – for healthcare that they were obliged to pay for, so secondary, or tertiary treatment, and they didn’t pay the amount that was owing, was it then open to the NHS service to seek details from the Home Office as to their liability for payment, their immigration status, and essentially start the ball rolling in terms of trying to find out why they hadn’t paid what was owing? Is that the nub of it?

Ms Anna Miller: It’s slightly different.

Lead 4: Please?

Ms Anna Miller: So the information flow actually goes the other way. So once an NHS trust has applied charges to somebody and if they’re over £500 and their bill isn’t cleared –

Lead 4: Slow down, please, if you can.

Ms Anna Miller: If the bill isn’t cleared within two months, the NHS trust is then obliged, through Department of Health guidance, to report the details of this debt and the person who holds the debt to the Home Office. The Home Office then uses that information, it’s able – it’s a primary grounds to refuse certain types of immigration application, so it means, for some individuals, having incurred an NHS debt ends up meaning your chances in the future of regularising your status –

Lead 4: Are reduced?

Ms Anna Miller: Are reduced.

Lead 4: But the first step is taken by the NHS. Because it’s the NHS who are owed the money, they will take the first step to contact the Home Office to find out what the position is?

Ms Anna Miller: Yes. First of all, yes.

Lead 4: Did the government, during the pandemic, announce or say to NHS trusts in England, or across the United Kingdom: if persons without settled status or citizenship have sought treatment for Covid or testing for Covid, they will incur no debt, and therefore you have no need to contact the Home Office to find out what the position is with their immigration status because there is no debt owing, there is no money due to be paid?

Ms Anna Miller: That is essentially what Department of Health was relying on. They were relying on and hoping that invoices wouldn’t be raised because it’s meant – Covid services or certain Covid services were meant to be free, and therefore they wouldn’t – because an invoice wasn’t raised, there would be no debt to pass on to the Home Office. That’s what they – that’s what they were relying upon.

The extent to which they communicated that to hospitals, I mean, I don’t know everything, but everything that I saw that went to NHS trusts was just around reminding them that Covid – you know, certain Covid services were exempt and there would be no need to raise bills.

I never saw any direct communication to NHS trusts that reiterated the point about not sharing data or taking particular care not to share data.

Lead 4: But if no money was owed to the NHS, if there was no debt, then there would be nothing for the NHS trust or the primary service to speak to the Home Office about, because there would have been nothing to engage them?

Ms Anna Miller: Yes, exactly. But could I just outline –

Lead 4: Please.

Ms Anna Miller: – what the problem with that was?

Lead 4: Yes.

Ms Anna Miller: Okay, so the NHS charging programme, the way it’s applied, errors are really commonplace. We run a specific service supporting people who have been charged for NHS services, and 20% of our cases are just purely that the NHS trust has charged for a service that should have been free. And one of the reasons, it’s – mistakes are partially because this is – it’s an immensely – it’s immensely complicated for NHS trusts to apply somebody’s immigration status over the service, so sometimes it’s due to the complexity, but it’s also partially due to the fact it’s the heavily automated system. Once one NHS trust has flagged on your record that you’ve got some type of insecure immigration status, that stays on your record, and any other NHS trust will see it.

And the way that it usually operates is that a role within the finance team will see when somebody has a hospital episode, and it’s been flagged that they might have insecure immigration status, they will start the ball rolling on issuing letters and generating invoices.

So this is not clinicians and public health doctors sitting around and carefully thinking: oh, well, that’s a public health service, so don’t charge for that. It’s how – the default is you get – if you’ve got one of these flags on your record, the default is you get charged for stuff, and the onus is on you then to demonstrate why the service shouldn’t have been charged for or why you, as an individual, should have been exempt from it. So –

Lead 4: And you’ve referred just now to 20% of your cases –

Ms Anna Miller: Yeah.

Lead 4: – being instances in which migrant people were charged for NHS treatment –

Ms Anna Miller: Yeah.

Lead 4: – for which they shouldn’t have been charged.

Can you tell us how many of those cases related to migrant people being charged for Covid-19-related testing or treatment for which they shouldn’t have been charged? Because obviously we’re concerned with the vaccination, therapeutic and provision of medicine to migrant people in the course of the pandemic.

Ms Anna Miller: I can’t say within that, and also within that cohort of people, I would say few to none, just because of the timeframe for that. That is a report that we published in 2020, so fairly early on the pandemic. There might have been one or two Covid cases in that cohort. So I can’t honestly say about that. But since then, we have seen patients charged for Covid services, charged for services –

Lead 4: Do you mean for long-term health conditions, for example?

Ms Anna Miller: Long-term health –

Lead 4: Long Covid or chronic conditions which have resulted from Covid –

Ms Anna Miller: Yes –

Lead 4: – as opposed to initial treatment in A&E?

Ms Anna Miller: Well, sometimes –

Lady Hallett: I think I’ve got the point on this issue, Mr Keith. I think we need to move on.

Mr Keith: All right.

Ms Anna Miller: Sorry, the answer is yes, I’ve even seen an NHS trust pursue charges for a vaccine. So yes.

Lead 4: In your statement you say that one of the things that you’ve campaigned for is for the government to put into place a firewall between the NHS and the Home Office. So it’s not enough just to rely upon the government to tell the NHS what to do. Is that an issue which you’ve raised with the government and you’ve sought their response as to whether or not such a firewall should be implemented?

Ms Anna Miller: Yes, multiple times, and the Health and Social Care Select Committee carried out an inquiry into this in 2018.

Lead 4: All right.

The next issue, broad area, raised in your statement concerns the GP registration system. By and large, in the vaccination process, in order to book a vaccination, patients would have to provide an NHS number. And is it the position that many of the people whose interests you represent do not have or have to no access to getting an NHS registration number? Is that the problem?

Ms Anna Miller: Yes, our patients are routinely refused GP registration, even though they’re entitled to it. The vast majority of our work is actually supporting people to get registered with a GP once they’ve come to us for initial medical care.

Lead 4: Again, was this an issue which was pursued by your group during the course of the pandemic when it became apparent that there were migrant people who weren’t being offered vaccination or if they wanted vaccination, couldn’t get it because they had no NHS registration number?

Ms Anna Miller: Yes. Right from the beginning of the pandemic, we raised it as a sort of access to healthcare issue that, you know, people need a GP and needed access to a GP, but once it became clear to us that the way the vaccine model – the way access to the vaccine was being organised and that it was going to be dependent on the national booking system, at that point we then began to flag the issue about if you don’t – so it’s important to note, with migrants the only way you’re issued an NHS number is by registering with a GP. If you’re born in the UK you get it at birth but if you’re born outside the UK you have to register with a GP. That’s what generates an NHS number for you. And so then we were aware that our patients are largely not – or people just before they’re our patients, are not registered with a GP and so therefore they wouldn’t have an NHS number. So once we realised the vaccine – the main way people were going to access to the vaccine was through the national booking system, and that you had to have an NHS number to be able to use the national booking system, we were – we became aware that our patients were going to be completely excluded from the vaccine rollout.

Lead 4: In very general terms, what steps did the government take to make it known that you could get a vaccine without an NHS number for which you’d have had to have been registered with a GP? Was there any kind of announcement made or any publicity given to a solution to this problem?

Ms Anna Miller: Yes. So in February 2021, I referred to the fact that the government briefed the Daily Mail and the Daily Mail then ran a front page story the next day saying, “Vaccine amnesty for migrants”. So that was – yes, that was the first step. But at that stage, all of the messaging was, it was about an amnesty, which was quite confusing because we usually associate that with an immigration amnesty, but also it didn’t deal with – it essentially was just saying to people, “Go along, just go along, get the vaccine”, and, you know, eventually when the messaging refined slightly because we raised issues about the data sharing issue, the messaging was refined slightly to say: there will be no immigration checks.

And this goes to the core issue about the fact that the government had – the Department of Health had made the decision not to put in place a firewall, actually just to not – to stop sharing information with the Home Office, which meant that, and we raised this a number of times, it meant that they were never able to say, “There is a guarantee that your information won’t be shared”. They just said, “No checks will be carried out at vaccine centres.”

So that’s quite different situations –

Lead 4: Just pausing there. Are you aware of communications sent by the government, probably the DHSC, or in England, Public Health England, to vaccination centres, pharmacies, GPs, NHS commissioning trusts, and in the other – and in devolved administrations, to their own NHS boards, saying: it is possible to, and you should be able to offer, vaccination without the production of an NHS number?

Ms Anna Miller: Yes, NHS England did that, but my point is that didn’t reflect what the reality was, is that they were putting out that, they were just putting out sentences saying, “No NHS number needed”, but until June 2021 there were eligibility criteria for the vaccine associated with age, and the way that was then managed was that you would go online and book it through the national booking system. That was always the process to make sure that people within the right age cohorts were able to access the vaccine. But people without an NHS number couldn’t do that. So essentially the whole, just like, “No NHS number needed”, what that basically meant was wait until June until it becomes completely open access, and then –

Lead 4: So what you’re saying is, in terms of the minutiae, the detail in which the prioritisation system was operated, difficulties arose in terms of a lack of an NHS number because in order to be able to get priority status to which they were entitled, they needed that number?

Ms Anna Miller: Yes.

Lead 4: All right. The next topic which you raise in your statement, again on the subject of prioritisation, is that, did you raise with the government your concern that migrants were not given priority status in that first priority 1 group – that first phase group? So, for example, there were a number of categories, not just stratified by age, but by, for example, work in the health and social care sector, who were given priority status. Did you advocate for migrant people to be given priority status?

Ms Anna Miller: It was never our position that all migrants should be given priority status. That was never our position. There was one more specific point which was in relation to people who are in the asylum system and are in accommodation provided by the Home Office on account of the fact that they would otherwise be destitute, and that is often hotels, during the pandemic, the government started using military sites, barracks, 26 people in a room, sleeping in – well, in a barracks together. It was that setting where – and it wasn’t just us. JCVI and NHS England both put out direction and guidance to local health teams that they could and should be considering asylum accommodation, destitution settings like that, within their local area, when they were carrying out the vaccine rollout, and there was guidance from JCVI that homeless accommodation should be considered as part of cohort 6.

Lead 4: Right.

Ms Anna Miller: So our point was that asylum accommodation should have been considered as part of cohort 6.

Lead 4: So in essence, there was a particular vulnerability in the context of asylum accommodation –

Ms Anna Miller: Yes.

Lead 4: – that merited priority being given in cohort 6, which was one of the priority phases –

Ms Anna Miller: Yes.

Lead 4: – obviously number 6.

The last area I want to ask you about is this, please: much of your statement is concerned with the issue of whether or not there are systemic inequalities and pre-existing barriers in the way of migrant people preventing them from getting access to healthcare services and, in particular, Covid. Is this a topic which has long been the concern of your group and which has been raised with the government on a multitude of occasions, to this effect: that as a matter of policy, the government needs to do more to try to reduce barriers and prevent discrimination and inequality by focusing more on the specific needs of the people whom you represent? Is that the nub of it?

Ms Anna Miller: Yes, yes.

Lead 4: And is that something which you continue to engage the government with?

Ms Anna Miller: Yes, yeah, absolutely. And I was – it’s not just about doing more, it’s about highlighting and properly considering the impact of a number of policies that the Department of Health run that deter and prevent people from being able to access NHS services.

And also, the thing that was unique and really brought to focus during the pandemic was how much these policies presented a public health risk – policies I’m talking about are NHS charging and the data sharing – how much these policies present a public health risk and put the whole population at risk.

Public Health England had continually advised government that these types of policies were a public health risk, but that advice was overlooked before the pandemic and it was overlooked during the pandemic.

And I think, if I may, a final point I’d like to just point out is how extraordinary these policies are. The Médecins du Monde network runs clinics like ours all across Europe, and I have a very good idea of healthcare entitlement policy across Europe. The UK is an outlier in terms of the extent to which people are charged and punished for accessing NHS services and this very interconnected way in which health data is used to support immigration enforcement.

It’s really important to not view that as an immigration policy, and also not to view that as an essential or even a normal part of a healthcare system.

Mr Keith: Ms Miller, thank you very much. I’m going to have to ask you to leave it there. Obviously the widest provision of NHS services is outside the scope of this Inquiry. We are concerned with vaccination and therapeutics. But that’s very helpful, thank you very much indeed.

Lady Hallett: Thank you very much indeed, Ms Miller. Thank you for your help.

The Witness: Thank you.

(The witness withdrew)

Lady Hallett: Very well, we shall break now for lunch. I shall return at 1.50.

(12.50 pm)

(The Short Adjournment)

(1.50 pm)

Lady Hallett: Mr Keith.

Mr Keith: My Lady, the first witness this afternoon is

Sam Smith-Higgins, please, who will be attending online.

Thank you.

Ms Sam Smith-Higgins

MS SAM SMITH-HIGGINS (affirmed).

Questions From Lead Counsel to the Inquiry for Module 4

Lady Hallett: We’ve met before, Sam Smith-Higgins, so thank

you very much indeed for joining us this afternoon.

The Witness: Can I please apologise for not being there in person, I find it really disrespectful when people don’t appear in person but my husband is going through cancer treatment, daily cancer treatment, and obviously I have to drive him and what have you, so it was just impossible this time but I do apologise and thank you for letting me appear remotely.

Lady Hallett: No apology necessary, I don’t consider it any kind of disrespect, and I do hope the treatment works.

The Witness: Thank you. Me too.

Mr Keith: Ms Smith-Higgins, could I start, please, with some of the formalities. Could you give the Inquiry your full name, please.

Ms Sam Smith-Higgins: Sam Smith-Higgins.

Lead 4: Thank you very much.

You’ve kindly provided a witness statement dated 7 February 2024, which you’ve signed. It contains, as is absolutely usual, a statement of truth declaring to the truth of the facts in your statement. And the reason why you’ve provided that statement and why you’re giving evidence today is that you were one of the co-leaders of Covid-19 Bereaved Families for Justice Cymru?

Ms Sam Smith-Higgins: That’s correct.

Lead 4: Together with Anna-Louise Marsh-Rees, whom we had the pleasure of hearing in, I think, modules 1 and 2 and 3.

Ms Sam Smith-Higgins: That’s correct.

Lead 4: Your group, Mrs Smith-Higgins, Covid-19 Bereaved Families for Justice Cymru, originated I think as an autonomous group. It separated from the UK group in July 2021, and it’s dedicated itself to campaigning for, and giving a voice to, those bereaved by Covid-19 in Wales; is that right?

Ms Sam Smith-Higgins: That’s right.

Lead 4: I think you’re the most prominent organisation in Wales involved in the discourse, as you describe it, surrounding the Covid-19 pandemic?

Ms Sam Smith-Higgins: We certainly are.

Lead 4: And could you just say something briefly, please, about your primary aims. You’ve referred in your witness statement to the fact that there is an urgent and

burning and utterly understandable need to understand

why decisions were made as they were, and for errors to

be acknowledged, recognised, and learnt from. Is that

a fair summary of the primary aim of your group?

Ms Sam Smith-Higgins: It is. It is. And also to get change. You know, at

the moment Covid, flu, are still rampant throughout

healthcare settings in Wales. We desperately need

change there. We have changed for – made change for

bereavement services in Wales already, so yeah, we’ve got many aims.

Lead 4: You, sadly, have been bereaved, and may I ask you, please, about your farther.

Ms Sam Smith-Higgins: Sure.

Lead 4: He was 73, was he not, when he was admitted into hospital in January 2021 for cancer-related reasons. Had he been vaccinated when he went into hospital?

Ms Sam Smith-Higgins: No. So my dad, Phil Smith, was diagnosed just as lockdowns came in with prostate cancer. Two consultants wrote on his notes that he had prostate cancer but he wasn’t told for six months, by which time the cancer had spread. In January, it was fairly routine for him to be admitted on 5 January for treatment to reduce oedema, and I knew he would be in by – for up to two weeks. And when he was admitted I asked there and then if he could have the vaccine, and I was told no. I asked if he could have HEPA filters. No, he couldn’t that have any of that. And so I kind of knew that he was going to catch Covid within the next two weeks. It was, you know, undoubted.

Lead 4: It was rife, of course, at that stage.

Ms Sam Smith-Higgins: It really was. And the vaccinations had started coming out on 8 December, and I’d – you know, I was a carer for an 85-year old, my mother, as well, and so I expected her to be, sort of, vaccinated relatively soon, but as December went through, I was tweeting like mad everybody, MPs, MSs, head of NHS, saying: What is going on? Why hasn’t my mother been vaccinated? And it soon became apparent that actually, in Wales, they were focusing on the healthcare workers and not the – you know, the aged or the most vulnerable.

By 11 January, Cardiff and Vale health board tweeted that up to date, up to 11 January, they had vaccinated 12,300 people, of which 69 were in care homes and only 75 were over 80. The rest were all healthcare workers.

So, you know, I’m watching the TV, getting angry because I’m seeing people on the TV being vaccinated, healthcare workers, they don’t even live in my health board area, having vaccinations just simply because they work for that particular health board.

Lead 4: And of course you are father, who was then 73, wasn’t a care home resident, he wasn’t over 80, and therefore he wasn’t in the first two priority lists for vaccination but he was vulnerable because he was in a hospital where Covid was rampant?

Ms Sam Smith-Higgins: And this is the point. He was under the Velindre cancer hospital, which is the – the cancer trust in Wales, and they didn’t introduce testing for their patients until I think they sent out – started sending out invitations mid-January. It was all too late. For those seven weeks from when vaccinations were introduced, it was – its focus was on keeping healthcare workers working. It wasn’t about saving lives or saving people like my dad, who were going into what was and still is the most likely place you’ll catch Covid, which is a hospital in Wales.

Lead 4: And Mrs Smith-Higgins, he sadly died on 26 January. Did you, terribly, in fact, receive a letter following his death inviting him to attend for vaccination?

Ms Sam Smith-Higgins: That’s correct. It was all bittersweet. As I say, we knew he was going to catch Covid while he was in there. It was hot, unventilated; it was rife in there, and we just knew he was going to get it.

Lead 4: So is one of the main issues which you’ve sought to raise on the part of your members and of your group, and perhaps the main issue, judging by your statement, the issue of the pace of vaccine delivery in Wales?

So it has a number of aspects. One of them you’ve touched upon already, is whether or not there was a decision or policy such that allowed health and careworkers to be vaccinated in advance of vulnerable or elderly people, and, secondly, whether or not the programme for vaccination in Wales delivered vaccination as speedily as was reasonably possible at that time?

Ms Sam Smith-Higgins: Absolutely. It was their – a policy for keeping people in work or keeping people alive. Because, you know, vulnerable person weren’t being vaccinated, fit and healthy careworkers were being vaccinated. So, you know, what was it? Saving lives or keeping them in work?

Lead 4: You refer also in your statement to another related issue, which is that in January 2021 the Welsh Government sought to stagger the rollout at one stage in order to ensure that the persons who helped with the process for vaccination, such as vaccinators, weren’t left with nothing to do. They were concerned about the prospect of delivering so many first doses that they ran out of vaccines to deliver. Is that an issue which your group is concerned about?

Ms Sam Smith-Higgins: Well, it is, you know, the fact that they apparently only had two places in Wales where they could store these vaccinations is a huge concern. I don’t know what else to say about that, really, it just makes no sense, does it? You know.

Lead 4: Another area, and you’ve touched upon prioritisation already, is that a number of your members have expressed concern, have they not, about people they know being missed off the prioritisation list as a sector, as a cohort, or members – you also have concerns about members who were on the list, they should have had their vaccination prioritised but they weren’t invited to attend for vaccination?

Ms Sam Smith-Higgins: Yeah, well –

Lead 4: Are there a number of people in that category in your group?

Ms Sam Smith-Higgins: Absolutely. As you’ll have come to learn by now through all the modules, data in Wales is appalling. We have a serious issue here with data, stats. At the last module they were trying to identify people by the – the flavour of their surname as to whether – we’ve a real issue with data in Wales.

Lead 4: And would your group be assisted by hearing evidence on the subject of those persons who suffered from severe asthma and whether or not they were prioritised over those with moderate asthma, whereas in fact anybody suffering from asthma should have been classified as clinically vulnerable, and in a particular group for vaccination?

Ms Sam Smith-Higgins: It’s a particular concern for me because I am asthmatic and I do use two steroid inhalers per day, but I wasn’t classed as having a sufficient respiratory problem to be classed as vulnerable. So yeah, for me, if I’d caught Covid, then I would have been in serious trouble, I’m sure.

Lead 4: A particularly contentious issue you know is VCOD, vaccination as a condition of deployment, and you’ll be aware, I know, that the English Government introduced a policy of mandatory vaccination for key workers in resident care homes in CGQ registered homes, but the other four nations, the other home nations didn’t in fact introduce a policy of vaccination as a condition of deployment. Where do your members stand on this issue? Do they regard the non-implementation of such a policy in Wales as a failure or was the decision not to follow the English lead in having such a policy the right course, do you think?

Ms Sam Smith-Higgins: There’s mixed views from our families, and basically what they want is clarification on how our government, having received the exact the same information as Westminster government, took a different decision. You know, in Wales private care homes were implementing VCOD anyway, so for us it’s clarification on what was the process, what were the thoughts?

Lead 4: In Wales during the pandemic were you conscious of community pharmacies being properly utilised for the purposes of delivering and rolling out vaccines?

Ms Sam Smith-Higgins: No. Again, not at all. As I say, pharmacists had to apply to give out vaccines. It wasn’t an automatic thing. There were barriers put in there. And to date, I, you know, you still don’t go through community pharmacies for such things here.

Lead 4: Were there problems, as far as you could tell, with the rollout of vaccines in deprived areas in Wales, and also rural areas where obviously there were a great deal more, there’s a great deal more difficulty in terms of the barriers there to getting to a vaccination centre or perhaps getting to a GP, or to a community pharmacy?

Ms Sam Smith-Higgins: Absolutely. I live in Cwmbran and one of the mass vaccination centres was actually here in our town. It was the one that Boris Johnson visited actually, and even for us, under Aneurin Bevan Health Board, the health board area is huge, and so for example, somebody travelling from Ebbw Vale would have to travel in the calculator for 40 minutes to get to that vaccination centre in Cwmbran. Somebody travelling by bus would have to catch numerous buses and it would probably take them an hour-and-a-half.

Now, for people who have been, you know, shielding for months and months and months, to suddenly have to take an hour-and-a-half journey within the same health board to then stand outside for an hour-and-a-half queuing to get into a sports centre, it wasn’t the best thought out, to be honest.

Lead 4: Your statement also refers to a number of other groups of people who had difficulties in terms of being able to be offered vaccination or to take up the offer of vaccination. Are two such groups about whom particular concern has been expressed to you those suffering from disabilities, disabled people, and also a particular cohort of unpaid carers? Are they two groups of people whose constituent members have often raised their worries to you?

Ms Sam Smith-Higgins: Yeah, again, you’ve hit the jackpot here, because I’m also an unpaid carer. There is no registry of unpaid carers in Wales, no – there’s no register of care homes, actually, either. But there’s no register of unpaid carers. It’s really difficult to prove that you’re an unpaid carer. I had to fill in a power of attorney to get my GP to believe me, that I was actually an unpaid carer. I escorted my mother to get her vaccination. I should have been vaccinated at the same point, really, I believe. There were so many of us unpaid carers there with older people, taking them in, it just seemed nonsense at the time.

Lead 4: Your statement also refers to concerns expressed by your members about the extent of disinformation and misinformation that was prevalent in Wales. Is that a subject matter or a concern that’s widely held in your group, or is that something on the outer margins of their core concerns?

Ms Sam Smith-Higgins: Well, the misinformation, you know, for our families, the vast majority of us are – were sort of, you know, if you’ve watched somebody die of Covid, you will take a vaccination to prevent that. We were all of the same sort of thought: get it in our veins. We weren’t hesitant in any degree. But, that said, in Wales, there is hesitancy, and the approach taken by Welsh Government clearly wasn’t good enough because Muslim Doctors Cymru had to take it upon themselves to go out there and start trying to educate themselves, you know, their own communities, with videos and what have you. So there’s definitely work to be done there.

Lead 4: Would you like to see the systems for reducing barriers and increasing confidence in vaccines improved in the future?

Ms Sam Smith-Higgins: Yeah, absolutely. You know, as I say, the data is really bad in Wales. You know, in England you’ll have an NHS App with all your information on there, your vaccine history and what have you. We haven’t got that here. We’ve got, you can see the last medications you ordered and possibly, with a bit of luck, book an appointment in four months’ time for a GP. So, you know, our data, we are streets behind where you are in Wales [sic], and that is a barrier. You know, you couldn’t do anything electronically to rebook your appointment, for example. You had to call and go through all that process, and, you know, it wasn’t made easy to have a vaccination in Wales.

Lead 4: All right. Finally, and certainly not least, a vital part of the pandemic story is of course the provision of existing and new therapeutics for those who couldn’t take vaccines, the immunocompromised, for example, or those for whom vaccines would not bring a substantial benefit. Have a significant number of members of your group asked about whether or not the systems for developing and researching, manufacturing, and making available new and existing therapeutics were properly operated; that everything was done, in essence, that could be done in order to make therapeutics available?

Ms Sam Smith-Higgins: Yeah, hundred per cent. And two points to make on that. The timeframe for vulnerable people to get their therapeutics, their antivirals was five days. You had to allow two days to get the test sent off and get your results back, which left a three-day window for most people. That was really tight trying to arrange to get to the place where they would do it.

And secondly, my dad was transferred to a Covid ward on 21 January. Before he went onto that ward, I said, “Great, are you going to pump him up with antivirals, steroids? Are you going to get him the fittest you can?” “Oh, we’ll see.”

He didn’t have anything until the day before he died, and that’s when they gave him dexamethasone.

So, you know, for a lot of our families they didn’t receive anything. They were lucky to get oxygen. So yes. Work needs to be done.

Mr Keith: Thank you very much for your assistance.

Lady Hallett: Thank you very much indeed, Mrs Smith-Higgins. Given all that you’ve been through and you’re going through, I’m particularly grateful to you for giving us your help. I hope that now you’ve given this help – we might be hearing from you again in the future, I don’t know – but please just focus on trying to get your husband through the treatment and we’ll keep everything crossed for you.

The Witness: Thank you very much, and again, my apologies, you know I would have been there if I could.

Lady Hallett: I know. Thank you.

(The witness withdrew)

Mr Keith: My Lady, the next witness is Ruth O’Rafferty, please.

(Off the recorded administrative discussion).

Ms Ruth O’Rafferty

MS RUTH O’RAFFERTY (affirmed).

Questions From Lead Counsel to the Inquiry for Module 4

Lady Hallett: I hope you haven’t been waiting too long, Ms O’Rafferty.

The Witness: Not at all.

Mr Keith: Can we start, please, with the formality of inviting you to give your full name.

Ms Ruth O’Rafferty: Yes, my name is Ruth O’Rafferty.

Lead 4: Thank you very much.

Thank you for attending today, Mrs O’Rafferty, and for assisting the Inquiry. You’ve kindly provided what can only be described as very lengthy witness statements, two witness statements, in fact. The first one dated August 2024 and then much more recently, quite late in the day, a very lengthy, I think a 271-page additional statement. But a great deal of care and time and trouble has obviously gone into the preparation of those documents. Thank you very much for those. You’ve signed both of them.

I’d like to start your evidence, please, Mrs O’Rafferty, by asking you to tell us something about the Scottish Vaccine Injury Group, whom you represent today. We understand that it was initially formed to apply for Core Participant status in the Scottish Inquiry, not the UK Inquiry but the Scottish Inquiry, but, perhaps more importantly, to provide tailored support for Scottish people who had suffered an adverse reaction to any of the Covid-19 vaccines; is that right?

Ms Ruth O’Rafferty: That’s correct.

Lead 4: Within your group do we presume, therefore, that there are people who suffered injury as well as those who, worse, suffered bereavement following vaccination?

Ms Ruth O’Rafferty: Yes, we have both. The majority suffered vaccine injury.

Lead 4: Can you give, please, the Inquiry some idea of the size of the Scottish Vaccine Injury Group? How many interests or how many people are you representing and how many people are you looking after their interests for?

Ms Ruth O’Rafferty: Currently just approaching 750 people. We have about 680, I believe, in the Facebook group and then we have a number of individuals who have joined us for the Inquiry, so we just message each other and keep in touch by email.

Lead 4: You have set out in your witness statement – we might have it up on the screen, please, it’s INQ000497102 – at paragraph 3, the extremely worthy aims of your group’s. I would just like to ask you about some of them?

You refer in paragraph 3(a) to the aim of preparing for the Scottish and United Kingdom public inquiries, that’s self-evident, and you refer in (b) to the support and encouragement, to which you’ve referred, for those who have suffered adverse reactions, and you refer to the Facebook group in (c).

At (d) you refer to the sharing of up-to-date information on treatments and therapies. Presumably that’s a matter of great importance to the members of your group, because you’ll be privy, no doubt, necessarily, over the passage of time, to much more information and detail on treatments and therapies which you’ve come across which you can disseminate to their great assistance.

Ms Ruth O’Rafferty: Exactly. And there is a lot of treatments which would be viewed, I suppose, as alternative treatments, like infrared, near-red light panels, hyperbaric oxygen therapy, things that wouldn’t necessarily be recommended on the NHS, and we’re part of a global coalition of vaccine injury groups, so we share things with each other globally, which is very useful.

Lead 4: At (e) you seek to refer to the aim of raising awareness of vaccine injury to the public media, political arena and healthcare system.

I referred in my opening, as you probably know, to the public interest in trying to reduce the stigmatisation, of which you speak in your witness statements, surrounding those who believe themselves to have been injured by a vaccine. Is this aim to raise awareness of vaccine injury there because are many people who doubt whether in fact the vaccines cause injury? And of course it’s a very strongly held view on the part of your members that they have to a large extent been ignored?

Ms Ruth O’Rafferty: Yes.

Lead 4: Is that the nub of this?

Ms Ruth O’Rafferty: Yes. There’s been a lot of censorship. In fact, Mark Zuckerman’s (sic) in fact openly talked about how Facebook removed anything related to vaccine injury. So we – what we experience when we go into medical appointments are medical professionals who have not seen evidence of vaccine injury in social media or the mainstream media, so we’re actually met often with quite a lot of disbelief. And actually we did a survey in our group to find out how doctors seem to feel about vaccine injury, and 46% of them said – or 46% of the respondents said that even though doctors said to them “Yes, we think this was the vaccine that caused this”, they didn’t write it in their medical notes. There’s an element of fear there that if you speak out against the vaccines you’re going against societal or cultural expectations that the vaccines are wonderful.

Lead 4: All right. Is it in part because your members feel that they’re not being heard, they’re not being listened to, and also that there is a degree of ignorance or suspicion, perhaps, about the injuries that they’ve suffered, that you have, as you set out at (g), also sought to campaign for specialist funded research and specialist centres so your members can receive the treatment for the injuries which they believe they’ve suffered from vaccines?

Ms Ruth O’Rafferty: Yes.

Lead 4: Right.

Ms Ruth O’Rafferty: In fact, in Germany there are specific units that research vaccine injury and Long Covid, both, because there is an overlap in symptoms. And we feel that because these were novel technologies that were used for the vaccines, there will be side effects that maybe will be unexpected, and we’re very surprised, actually, that nobody has come to us and said: well, look, you are this wonderful research opportunity that we have to find out what’s happening as a result of the vaccines.

Lead 4: Am I right in saying that this was the first occasion on which a representative from your group has given evidence to a – obviously a public inquiry –

Ms Ruth O’Rafferty: Yes.

Lead 4: – but also the public by way of a select committee or some sort of organisation?

Ms Ruth O’Rafferty: As far as I know, yes. I believe UK CV Family may have spoken to some parliamentary members but we haven’t.

Lead 4: Then the last two subparagraphs, (f) and (h), similarly identify that the aims of the group include trying to signpost people towards help, and also setting up the charitable and administrative systems to fund particular treatments that aren’t available on the NHS?

Ms Ruth O’Rafferty: Yes.

Lead 4: So that gives us some idea of the aims.

Now, in your statements you have, I should say – and this will come as no surprise to you, I know – raised a vast number of points and issues spanning the technology of vaccines, the scientific foundations for them, their authorisation, their research and development, their delivery, in fact almost every aspect of vaccination and vaccines.

Today I’d like you, however, to try to help us with expanding on those issues and those concerns that your members hold with a particular focus on the list of issues, the scope of this Inquiry, and this module. There are obviously all number of points and areas and issues that fall wildly outside the scope of this Inquiry and I don’t want to take time looking at those.

So in no particular order, but it’s a topic that you referred to repeatedly in the course of your statements, you identify that one of the main concerns held by your members is, of course, the integrity of the regulatory system in the United Kingdom, the degree of scrutiny that was brought to bear on the authorisation of vaccines, and whether or not the safety processes were properly operated, and in particular, whether they were designed and operated in a way that would bring safety-related concerns, side effects, to light. Is that a fair summary of that particular topic?

Ms Ruth O’Rafferty: Yes.

Lead 4: Do your members have particular concerns about the administrative or legal routes by which the vaccines were authorised? You’ve referred in the statements to the authorisation process under Regulation 174 of the regulations to which I referred yesterday. What is the concern on the part of your members as to whether it was regulation A or regulation B or some other legal route that was operated?

Ms Ruth O’Rafferty: I think – I will try to answer that question, I don’t think I’m knowledgeable enough to answer it in great deal, but from our perspective the MHRA and the government faced a very significant challenge, and they put in place some updated regulations to allow them to authorise vaccines under very fast processes – and I’m not really quite sure if I understand exactly what your question is, to be honest.

Lead 4: Are they concerned about the particular legal route or administrative route that was deployed? So are they worried that there was this legal process under Regulation 174 that was used or are they worried about the way in which in detail, and in practice, the MHRA went about deciding whether to authorise vaccines?

Ms Ruth O’Rafferty: I think the latter. And shall I expand on that just –

Lead 4: Yes, please do.

Ms Ruth O’Rafferty: Okay. So one of the main things that we were concerned about is that in 2005 there was a parliamentary review into the influence of the pharmaceutical industry on the regulatory process in the United Kingdom. And they made lots of recommendations all those years ago which still have not been implemented.

Lead 4: All right. We’re in danger of veering off on –

Ms Ruth O’Rafferty: Okay, so that provides some context for what I’m just about to say.

Lead 4: All right. Please continue.

Ms Ruth O’Rafferty: Mm-hm. So a normal process when a new medication is brought out is that they’ll make a mock-up of a medication or a vaccine for a clinical trial and then, once it’s been authorised, they will then upscale and produce a product that can be mass produced, because you can’t – the way something is made for a clinical trial, you can’t mass produce it. These particular vaccines are biologics and there was a research study that says –

Lead 4: I’m so sorry, I’m going to have to interrupt you there, we don’t have the time or the wherewithal to be able to go into some of these areas in this sort of detail.

Ms Ruth O’Rafferty: Okay.

Lead 4: Can I put it another way to you: is the core concern of your members that – does it revolve around the system by which, in reality and in practice, the MHRA authorised the vaccines, including whether they properly scrutinised the manufacturing and process systems for the production of those vaccines, whether or not the safety trials were properly conducted, whether or not the clinical process was subject to the same degree of scrutiny as the rollout process? Are those the sorts of issues that they’re worried about?

Lady Hallett: Shall I put it another way?

The Witness: Yes, please.

Lady Hallett: Did your fellow members feel that they sacrificed safety to gain the speed?

Ms Ruth O’Rafferty: Yes. Thank you.

Lady Hallett: Right.

Mr Keith: So it’s the rolling review issue, it’s the overall speed by which authorisation was granted and the degree to which they examined it?

Ms Ruth O’Rafferty: No, we understand the ruling review allowed them to see things a lot sooner so they were able to scrutinise things much more quickly than they would normally and we don’t have a problem with that. What we have a problem with is the upscaled product. Because these are biologics, and because the process defines a product, if you change any little thing in the manufacture of a biologic, the temperature, the ingredients, where it’s made, you can get a different product. And there was concerns raised whether the upscaled product was comparable to the clinical trial product.

Lead 4: As I’ve said, the two processes: the one –

Ms Ruth O’Rafferty: That’s right.

Lead 4: – that underpinned the clinical research and the one that underpinned the at-scale manufacturing?

Ms Ruth O’Rafferty: Correct.

Lead 4: Right. I think we’re clear. From your statement it appears that there are wider issues raised also by your members about the degree to which the data, the trials, the studies and the statistics were properly scrutinised, whether they were accurate, and whether or not the MHRA had before it all the necessary information they needed to properly make a decision on authorisation?

Ms Ruth O’Rafferty: Yes.

Lead 4: Yes? All right. There’s quite a strong scientific edge. There are a lot of scientific issues raised in your statements. A great many paragraphs devote themselves to concerns by your group on the technology underlying vaccines, so for example, vector-based vaccines, the mRNA technology, the use of lipid nanoparticles. I could go on. Is the scientific technological basis of the vaccines a matter of concern for your members, or are they concerned about the administrative impact, that is to say the decision to authorise?

Ms Ruth O’Rafferty: All of the above.

Lead 4: All the above?

Ms Ruth O’Rafferty: Yes.

Lead 4: All right.

Ms Ruth O’Rafferty: These – these are – mRNA vaccines have never before been authorised for use in the public, and because they were brought out in such a massive scale, our concerns are that there wasn’t enough vigilance, you know, that doctors were not aware – for example, we had somebody who ended up in hospital paralysed for months, and we discovered that she had the same diagnosis as a condition that appeared in the AstraZeneca trial. Had her doctors known that that had happened during the AstraZeneca trial, the trial was actually paused –

Lead 4: Right, there’s a number of – and I perfectly understand that you hold those beliefs but there’s a number of assertions or observations made in the course of that answer which we haven’t got time to unpick now. The overarching view though is, or the overarching position, is you are worried about the scientific superstructure or underpinning of vaccines and whether or not it was properly understood when it came to authorising their use in the United Kingdom? Is that the heart of it?

Ms Ruth O’Rafferty: Yes, whether the doctors actually understood this is a brand new technology, if they had understood the conditions that had arisen during the clinical trials or not. Because had they known, they may have been better preparing to diagnosis more quickly, and then those conditions wouldn’t have advanced to the stage they did, where there’s irreparable damage because –

Lead 4: Or they would have been treated perhaps in a different way?

Ms Ruth O’Rafferty: Yes.

Lead 4: Right.

Much of your statement is concerned with the separate but no less important issue of public messaging.

Ms Ruth O’Rafferty: Mm-hm.

Lead 4: That is to say informing the public about vaccines, about their benefits, about their risks, and about the specific emerging knowledge about the very rare risks that vaccines might give rise to in a number of different ways. So were you and are you concerned about the whole patient information leaflet process, whether or not it gave the public enough information, whether or not they were updated in sufficient time when new data and new understanding came to light, whether or not people, when they received their vaccines, understood that there was a patient information leaflet available which might or might not have the right degree of data? Is that the broad area?

Ms Ruth O’Rafferty: That’s correct. A lot of our members were not given a leaflet until after they’d received their vaccination which means they didn’t really have informed consent. They didn’t know what they were consenting to and the leaflets really – we now know the level of damage and the level and breadth of injury that can result –

Lead 4: Well –

Ms Ruth O’Rafferty: – and these are not listed in the leaflet.

Lead 4: Right, so your general position is that you believe there was more injury, more damage, more harm done, than was being indicated by the patient and public-facing leaflets and information? Both from the MHRA, from the government, and from these public information documents?

Ms Ruth O’Rafferty: Yes.

Lead 4: Right.

Ms Ruth O’Rafferty: And doctors rely on the Green Book, for example, and that only mentions myocarditis, thrombosis and Guillain-Barré syndrome, really. And we have so many more other undoubted vaccine reactions.

Lead 4: The – another topic, another important issue, is – and raised by your members – is whether or not, despite there not being a formal vaccine as condition of deployment policy in Scotland, Wales and Northern Ireland, they feel that there’s a perception or that they perceive that people were nevertheless coerced, publicly or privately, into taking vaccines.

Ms Ruth O’Rafferty: Mm-hm.

Lead 4: So is the heart of the concern expressed on this topic whether or not the state, the government, were fair and open in describing the benefits and the risks so that people could make a decision individually for themselves without feeling they were under a degree of coercion?

Ms Ruth O’Rafferty: Well, we had language, even in –

Lead 4: I don’t want to go into the detail of specific cases –

Ms Ruth O’Rafferty: Okay.

Lead 4: – because we can’t do anything about specific cases, but is that a proper summary, if you like, of the overarching –

Ms Ruth O’Rafferty: Well, the published message was: you would take the vaccine to save everyone else, that you were selfish not to, you were irresponsible not to, and we have lots of people in our group who are in the medical profession, who were coerced. We even had somebody who had emails distributed around their workplace naming and shaming people who hadn’t yet had their vaccine.

Lead 4: All right. You understand of course, that we can’t delve into individual cases.

Ms Ruth O’Rafferty: No, no.

Lead 4: But the overarching point is you’re concerned about why it was that some people felt they were being coerced or they were under pressure, and whether or not they were given the right information to be able to make a decision free from coercion?

Ms Ruth O’Rafferty: Yes.

Lead 4: That’s the heart of it.

Ms Ruth O’Rafferty: Yes.

Lead 4: The Yellow Card reporting scheme is obviously a vital part of the safety structures in the United Kingdom. Is that a general topic about which your members expressed a great deal of concern, in essence, whether or not it properly allowed people to record, to register with the government, and the authorities, adverse effects which they believed they’d encountered, and also whether or not, going the other route, the Yellow Card Scheme and the MHRA kept people properly informed about the position? Is that the heart of the concern?

Ms Ruth O’Rafferty: A lot of people had never heard of the Yellow Card when they joined the group, to be honest. And then we had people who felt – who hadn’t been able to access the Yellow Card again, they can’t find it. The Yellow Card Scheme is a passive reporting scheme, as you know, so it’s reliant on people knowing about it, and the government does, by their own admission, say that between 1 and 10% of people actually report to the Yellow Card.

Lead 4: And it’s obviously a scheme whereby members of the public and medics –

Ms Ruth O’Rafferty: Yes.

Lead 4: – can report and so your position is that people weren’t made properly aware of the availability –

Ms Ruth O’Rafferty: No.

Lead 4: – of the Yellow Card Scheme to allow them to report?

Ms Ruth O’Rafferty: Yes, although it does say about the Yellow Card in the leaflets. But our experience is that doctors were not reporting to the Yellow Card, even though they said to us that they felt that the vaccine was responsible. And in fact, the Green Book says that all doctors should, even if they’re not sure, they should report it to Yellow Card, and then MHRA will make the decision whether or not there was a causation there or not.

So yes, we feel that the Yellow Card is not fit for purpose. I know that I asked for a copy of my Yellow Card, and they put that a lot of my symptoms had been resolved when they haven’t. So I don’t know where they got that information from.

Lead 4: And finally another scheme, no less important, but it’s one that appears to be of huge concern, and worry to members in your group and other groups, I should say, is the Vaccine Damage Payment Scheme.

Ms Ruth O’Rafferty: Yes.

Lead 4: Has it been the experience of your members that where they have made applications under the scheme, that they’ve simply not been dealt with sufficiently speedily or at all, or got a positive response, and no doubt you would argue that the actual terms of the scheme, the preconditions for an award – and it’s not a compensatory award, but for an award – are overly onerous and impossible in practice to meet?

Ms Ruth O’Rafferty: Yes. I mean, how can you prove you’re 60% disabled when your condition fluctuates from day to day? It’s actually – the response that I get from group members, overwhelming response, is that it’s a very traumatic experience to go through, because a lot of them – I mean, I’m having quite – I’m losing my words here, but a lot of us are neurologically impacted so we find it difficult to communicate. And we have some people who are so badly injured that they can’t actually write. So they’re trying to get medical records from here, there and everywhere, collate it all, and they have to prove causation. I mean, how can a normal layperson do that? It’s very traumatic.

And then, when the – when the results come back, and a lot of them – most of them come back the first time round as rejected, and some of the reasons are utterly ridiculous, to be honest. Somebody was accused –

Lead 4: Well, we can’t talk about individual cases.

Ms Ruth O’Rafferty: Oh, sorry, yes. No individual members, okay.

Mr Keith: Thank you very much, Mrs O’Rafferty. If I may say so, you have been a very fine advocate, despite your own words, in the interests of your members, but that gives us a very helpful understanding of where the main points of concern are and the scope of them.

Lady Hallett: I was about to say something similar. You say that people very often have problems communicating but thank goodness today you were obviously feeling on top form for communication, although I appreciate your condition may change on different days.

The Witness: Thank you.

Lady Hallett: The thing I was particularly interested in was you talked about the research in Germany about both vaccine injury and Long Covid, and I’ve been going through your statement and, don’t worry, I will go through it all in some detail before I reach any findings. Again, I have been through it, but I will go through it again. But I was interested because a lot of the concerns that your members have echo the concerns that Long Covid sufferers have: recognition, of course, being one of the primary ones, and then the kind of support and treatment that you need. So I was quite interested to hear you talk about that research.

Thank you very much indeed for your help, I’m really grateful to you, I hope it hasn’t been too difficult getting here and getting home.

The Witness: Not at all. Thank you.

(The witness withdrew)

Lady Hallett: Ms Morris, I understand that you and your team represent this witness and the next one, so would it help if I took the afternoon break now?

Okay, it’s a bit earlier than we’d normally do but just so that Ms Morris and the team can talk to you before you go, and I shall come back – if I said 20 minutes, Ms Morris, would that help, so you have a chance to talk properly?

Very well, 20 minutes, whatever that is from now.

(2.38 pm)

(A short break)

(2.59 pm)

Lady Hallett: Mr Mansell (inaudible).

Mr Mansell: My Lady, the next witness is Kate Scott, please.

Ms Kate Scott

MS KATE SCOTT (sworn).

Questions From Counsel to the Inquiry

Lady Hallett: Are you okay, Ms Scott?

The Witness: Yes, thank you.

Mr Mansell: Ms Scott, could you give your full name to the Inquiry, please.

Ms Kate Scott: Yes, Mrs Kate Scott.

Counsel Inquiry: Thank you very much for attending the Inquiry today and assisting with the evidence that you’re going to give. A few preliminary matters, if I may.

Ms Kate Scott: Yes.

Counsel Inquiry: I’m going to ask you to keep your voice up, don’t speak too quickly, speak into the microphone so that the stenographers can make a record of everything you’re saying. And if I ask a question that isn’t clear, please don’t hesitate to ask me to repeat it.

Ms Kate Scott: Okay.

Counsel Inquiry: You have provided a witness statement on behalf of Vaccine Injured Bereaved UK, or VIB UK, and that is INQ000474371. Are the contents of that statement true to the best of your knowledge and belief?

Ms Kate Scott: They are, yes.

Counsel Inquiry: Now, I’d like to start, please, by asking you some questions about VIB UK, its aims and membership. You explain in your statement that VIB UK is a UK-wide campaign and support group consisting of individuals and families who have either been severely injured for bereaved as a result of receiving a Covid-19 vaccine; is that right?

Ms Kate Scott: Yeah, that’s correct. Everyone in our group has medical confirmation that their injuries or the death of their loved one was caused by the vaccine.

Counsel Inquiry: It’s fair to say, is it, that one of VIB UK’s central aims is to achieve reform of the Vaccine Damage Payment Scheme or VDPS?

Ms Kate Scott: Yes, that’s correct. The scheme is inadequate and inefficient, it offers too little, too late, to too few.

Counsel Inquiry: And that is something we will come back to in the course of your evidence.

Ms Kate Scott: Yes.

Counsel Inquiry: You note in your statement that your organisation did not exist before the pandemic, and you had to create it. And you say this is a symptom of poor planning on the part of the government, which in your view overlooked the potential for vaccine injury and bereavement?

Ms Kate Scott: Yeah, we feel like an uncomfortable truth and we were made to feel like you were the only ones or you were the unlucky ones, and just to get on with it, and that’s impossible when you’re grieving a loved one or your husband is in intensive care in a coma for four weeks and five days, and there was no one to speak and to there was no one to help us, so we’ve had to, in the worst circumstances, come together and try to navigate this as group.

Counsel Inquiry: I think you may be alluding there to your own personal experience, and again, that is something we will come back to and explore with you in more detail, but just staying for the moment, please, with the group itself and its aims.

You express your gratitude to the Chair in your statement for giving VIB UK Core Participant status in this module of the Inquiry, and I want to emphasise that, in making that decision, the Inquiry acknowledges the experiences of those who have suffered adverse effects following vaccination, and is of the view that this will help to counter the stigmatisation which you speak about in your statement.

Ms Kate Scott: Yeah, hopefully.

Counsel Inquiry: You stress that VIB UK is “not anti-vaccination but rather pro-fairness”.

Ms Kate Scott: Yes.

Counsel Inquiry: Could you expand on that, please.

Ms Kate Scott: Yes, how can we be anti-vaccination when everyone in our group stepped forward and took a vaccine that the government told us was safe and effective? Everybody in our group is either injured or bereaved as a result of doing so. So by – you know, you cannot be anti-vaccination if you’re injured from a vaccine that you took.

Counsel Inquiry: You make the point that if there is not a proper system of redress for those who have suffered injury and bereavement, it will fuel vaccine hesitancy in the future –

Ms Kate Scott: Yes, I think –

Counsel Inquiry: – something you want to avoid?

Ms Kate Scott: Yeah, a hundred per cent.

So I think Mr Keith stated yesterday that it is accepted that vaccines – or no medicine is a hundred per cent safe and effective, therefore there should be a fair compensation scheme and the government should have planned for that, knowing that if nothing is a hundred per cent safe and effective and it’s being rolled out to so many people, there would be injuries and there would be deaths, and we should have got the help and support and the financial compensation to be able to continue to live our lives.

Counsel Inquiry: Staying with VIB UK and the support that it provides, is it right that it’s created its own support group for those who have been injured and bereaved by the vaccines? And if so, what sort of support does it provide?

Ms Kate Scott: Yes, so mainly we’re a campaign group, kind of campaigning for VDPS reform, but we soon realised that we had no one to talk to who had the shared experience of almost being pushed into the shadows during the pandemic. We’re an uncomfortable truth but we are a truth, and the truth is, for everybody in our group, the vaccine caused serious harm and death. So we just – it’s not a formal thing, we have a group WhatsApp, it’s – people talk about it on it daily, you can ask to speak to people individually, and just a safe place to share your grief or your concerns or your challenges. Because there wasn’t anywhere, there still isn’t anywhere, other than that.

Counsel Inquiry: Alongside the group chat you’ve spoken about and the safe space for people, you talk in your statement about hosting a video call every six weeks to offer support and enabling members to work together on campaigning for change?

Ms Kate Scott: Yes. And just to catch up, and we send monthly updates on the work we’ve been doing. Because it’s so difficult and emotionally draining – we’re four years in now with very little change having been happened and very little of power voices having been listened to – some people have to dip in and out, because we’re also trying to navigate life with a disability or life without a loved one.

Counsel Inquiry: Could we please have on the screen page 4, paragraph 10 of Mrs Scott’s statement. And here you set out VIB UK’s hopes in relation to its participation in the Inquiry. We just look at these, please.

Ms Kate Scott: Yes.

Counsel Inquiry: You ask that it result in three key outcomes. First, to highlight the fact of vaccine injury and bereavement; second, to remove the stigma suffered by those who are vaccine injured or bereaved; and third, to compel the government and pharmaceutical companies to look again at how to deal with the inconvenient fact of vaccine injury and bereavement and the effect it’s had on those who have been affected. Is that right?

Ms Kate Scott: Yeah.

Counsel Inquiry: That can come down from the screen. Thank you.

We’ve dealt with the group, its aims, the support that it offers, its membership. You are, of course, a member of that group, and the reason you’re a member of the group is because of the experience that your husband Jamie had following vaccination.

Ms Kate Scott: Yes.

Counsel Inquiry: Could you tell us, please, about the impact on Jamie as well as the impact on you and your family?

Ms Kate Scott: I can, yeah. Just one last thing about VIB UK, though, is that the primary causes of the injuries in our group are vaccine-induced thrombotic thrombocytopenia, VITT, Guillain-Barré syndrome, vasculitis, and more. They are all confirmed conditions, so there is a range of conditions.

My husband Jamie had VITT, vaccine-induced thrombotic thrombocytopenia. He is a walking miracle. Every day I’m filled with gratitude that he’s still alive, but his brain injury is the size of a credit card. His relationship with me and, mostly, his relationship with our children will never be the same again. And I have this constant conflict of that gratitude with the grief that goes with how different life is, and then the guilt for the others in our group who I know would just want five more minutes with their loved one.

Jamie is amazing. He was in a coma for four weeks and five days. He’s had significant brain surgery, and he was in rehab for 124, in total. When he came home, he was able to watch our son’s nativity, but in a very different way. He is blind in both of his eyes in his upper right quadrant, he’ll never drive, he’ll never live totally independently, he can’t look after our children for long periods of time independently, he can’t split and divide his attention, he has no high functioning ability, he has short-term memory loss, he has processing information challenges, he has auditory challenges, he has chronic fatigue, he has severe headaches, he has had over three hundred medical appointments since we’ve been home, and they’re ongoing, and just everything, everything is different from how he responds to situations to how he shows his emotions, to how he interacts with our children.

Counsel Inquiry: I take it from what you’ve said that he is unable to work?

Ms Kate Scott: Yeah, he’ll never be able to work again. He had a really high-functioning, high-stressful, multi-international job that he loved and he was just as cool as a cucumber. He balanced me out and now he’s got all these new feelings, and he often describes that he can see this video playing in his head and how he should respond and how things should come out but the bit in between is it all gets muddled. So he’s got aphasia, which means that sometimes he can’t find or think of the right word, which might mean he calls our children the wrong name, or he will go upstairs to get something and come down with something completely different. Or he’ll go to the shop with some support and he’ll forget what he’s gone to get and come out with different things that don’t make up a shopping list, that you can’t cook anything with, but every day he tries it’s tiring and we’re grateful that he’s alive but at the moment he doesn’t feel like he is living and he was full of so much life.

Counsel Inquiry: Given the impact, is it right that your family and Jamie have made a claim to the Vaccine Damage Payment Scheme ?

Ms Kate Scott: We have, yes and it was successful, which is an awful thing to have a phone call to say, “Congratulations, we have confirmed that your injury has been caused by the vaccine and that your husband is 60% or more disabled.”

That’s not the case for everyone in our group. People are rejected on such different disability percentages, which I know we’re going to cover, but for Jamie – I think the national average salary is £30,000. He will never work again. He was on much more than that. Our house is based on that. Our lifestyle was based on that. I’m no longer working. I also had a career job but caring for our children, making sure they get to school safely is my responsibility, taking Jamie to his appointments is my responsibility, looking after him in those appointments because he can’t process medical information, being his advocate everywhere I go, making sure he is safe, stops me from being able to work full time and that puts a real stress.

I don’t think that doing the things that the state asks you to do should put us at risk of losing our house or people in our group having to use a food bank, having to move house because they can no longer afford it. That’s just extra trauma to what we’re already struggling through.

Counsel Inquiry: Thank you for sharing your account of vaccine injury and telling us about what happened to Jamie and you and your family.

Ms Kate Scott: Thank you.

Counsel Inquiry: I’d like to move now to talk about some of the broader issues that you have personal experience of and which your members are deeply concerned about, and we will start with the Vaccine Damage Payment Scheme.

Ms Kate Scott: Okay.

Counsel Inquiry: You say, and you have said already today that it is not fit for purpose, in your view, and has systemic inadequacies and inefficiencies, and it’s some of those concerns that you have about the scheme that I’d like to turn to now. The first is the time it takes to process claims. And in your witness statement you set out some figures you obtained as a result of a Freedom of Information Act request, which show that as of the 3 October 2023, there had been 7,544 claims related to Covid-19 vaccines, and only 3,519 claimants had been notified of an outcome. 361 claims had been awaiting a decision for more than 12 months. Of those, 150 claims had been awaiting a decision for more than 18 months.

Ms Kate Scott: Yes, and awfully, the data has changed and those numbers are worse, so as of 30 November 2024, there’s 17,519 claims to the VDPS. Only 194 of those have been notified that they’re entitled to the payment. 416 people have been told that they are unsuccessful because although causation is met, they are not, inverted commas, “disabled enough”. And of that, there’s 1,027 people still waiting 12 months later. Within that, 438, 18 months, and 126 are still waiting nearly three years later for the outcome of their claim.

Counsel Inquiry: What sort of impact is this having on your members, the amount of time they’re having to wait for these claims to be processed?

Ms Kate Scott: Well, most of them have lost their jobs. So paying mortgages, paying rent, feeding your children, feeding your family. Some people, they’re – Dr Stephen Wright, he died from VITT, one of the first within our group. His wife has lost his income. She looked after the family and bought a beautiful household that’s now without a daddy and without fair income.

Counsel Inquiry: Another issue you raise about the VDPS is the application form and problems encountered by your members when completing the application form. What are those problems?

Ms Kate Scott: So, Jamie’s came back and they reviewed over 3,000 pages of medical data. So I understand that that takes time. Originally you had to print out the form and you could only handwrite the answer. When people first applied there wasn’t even a box to tick that some one had died, so you had to write that yourself and write your own tick box to mark that the person you were claiming for had passed away.

Counsel Inquiry: You say that the paper application system and questions are antiquated and inept.

Ms Kate Scott: Yes.

Counsel Inquiry: Would you like to see reform of the process for making the application?

Ms Kate Scott: Yes, along with the whole scheme. I believe they’ve made a couple of changes so there is now a kind tick box to say your loved one has died and you can fill it out online, but it’s not a nice – if anyone has ever had to fill out any of these forms, it’s pages long, it’s brutal, and if you’re grieving or not used to using computers or having all of that information or having the support of someone, you’re just again left to do it on your own. And you can see from how much the numbers have grown that people are still only finding out that there is even this scheme available.

Counsel Inquiry: Another aspect of the scheme is the 60% disablement criteria in order to qualify for a payment under the scheme. Could you explain to us the problems that that has posed for your members?

Ms Kate Scott: A percentage disablement is also somewhat offensive I feel, but regardless of if it’s 10% or 59% or Jamie, way over 60%, or dead – I guess that’s 100% disabled – there’s no compensation if you fall below that. We only saw yesterday in the video the consequence of being told “Sorry, you’re only 55% disabled”. It’s awful, it’s devastating, and then there’s no one to help. Someone in our group was told they were only 20% disabled; it took another year to do the mandatory reversal, and then they were told, “Oh, actually, you’re 90% disabled, congratulations, here you go.”

There’s other people who are 59% disabled in our group and only if you’ve got the strength and will to carry on can you fight that system that is so set against us.

Counsel Inquiry: Would you like to see the threshold lowered or some other reform? Have you got any ideas for how it could change?

Ms Kate Scott: There’s many other schemes across the world, I don’t think I’m expert in that other than saying if you did something that the state has told you was safe and effective and that wasn’t the case, then there should be fair and adequate compensation, that’s on a sliding scale of the impact. Like Jamie will never work again, so that’s £120,000. If the national average salary of £30,000, it’s gone very, very quickly in a very expensive world.

Counsel Inquiry: That is the next thing, in fact, that I was going to come on to, which is the fact that the payment under the scheme is limited to £120,000. What would you like to see change about that?

Ms Kate Scott: Again, well, it’s nothing compared to what would be seen through civil or through the courts, and we’re always told that it is not a compensation scheme, and yet legal action is costful, stressful, complex and for – many are unable to get legal representation even though causation has been confirmed.

So again it comes back to this acceptable safety profile. Mainstream media, the government, pharmaceutical companies, tell us that we fall within this acceptable safety profile. How many are acceptable? One life? Should that not have been enough to pause and just have a look, because there were other options? Or 441 people had VITT, 81 of those died. Not everyone has got access to legal support, and we shouldn’t have to do it. There should be a compensation scheme that supports those people who are injured and bereaved.

Counsel Inquiry: This is a point that I know it’s important for you to make, that – it’s about what is an acceptable safety profile and what does that mean in terms of the people who are vaccine injured and bereaved, and what sort of scheme should be in place for them. Is that right? That if there is going to be a recognition, not –

Ms Kate Scott: I think it damages future trust in vaccines that if you are this unlucky number or this rare number – but bearing in mind for our group it’s not rare. Statistics are interesting, aren’t they? Within our group, one hundred per cent of the people in it, it was not safe and effective. That is the fact within our group. And we have always had the truth on our side, and the truth is, for everyone in our group and the others who don’t even know about our group yet: the vaccine was not safe and effective.

And this was mostly people who were fit and healthy. Jamie didn’t take a medicine in his life. He surfed, he ran, we played rugby and football with the children, all things he’s now unable to do and will never be able to do again. We were known as being the couple – or the last two on the dance floor, and this birthday I danced on my own because he’s not able to be in that loud noisy environment.

Lady Hallett: Sorry to interrupt, I really am, but I think I’m going to have to stop you because it’s really difficult for me venturing into the area of where we’re talking about scientific evidence and acceptable safety levels. That’s something we’ll discuss with the experts. And I’m really sorry, but it’s more of a scientific evidence-based as opposed to just the individual circumstances.

The Witness: No, that’s what we’re asking. We want you to look at that. And no one has told us what that is. And if it is acceptable, why is there not a fair compensation scheme? I’m not a scientist. But Boris Johnson wrote to me and told me we are not a statistic, we would not be ignored. And all the time all we’re told is we’re very rare and we are a statistic. And I’m here to say that, no, we’re not, our lives are destroyed. And everyone in the audience today who’s to support us, so are theirs. It’s not just my story, there’s many others who have had their voices silenced and told that we are an acceptable safety profile and “Get on with your life.”

Lady Hallett: That point I totally understand, I was just trying to avoid going down the path of analysing at this stage –

Ms Kate Scott: Yeah, no, I wasn’t trying to do that. Thank you.

Mr Mansell: You deal with a number of points in your statement, and we won’t have time to go through all of them in great detail now, but I just want to identify some of the other concerns in headline form that you have identified.

Ms Kate Scott: Yeah.

Counsel Inquiry: One of them is around communication about safety issues, and you raise the point that, in your view, there should have been clearer communication about the risks associated with the vaccines, and that they should have been communicated to healthcare professionals and the public so that people could be on the lookout for the types of symptoms that could arise; is that right?

Ms Kate Scott: Yes, earlier action and clearer risk communication, we think, could have saved lives. People within our group called ambulances three times to be told it was a migraine, it was only on the fourth, when they were seizing in bed, that they were taken to hospital, and that was because the risk and framework had not been communicated to everyone. Or you were not even allowed to suggest that vaccines caused injury and bereavement. Posts were removed online of death certificates saying it was misinformation, accounts were closed. I mean, there was no one to say: hang on a minute, we – if we know it’s going to be accepted that there’s risk, there should be a safety process of emotionally and medically supporting these people and helping them afterwards.

Counsel Inquiry: Another area of concern for your members is the post-marketing surveillance system in the UK, including the Yellow Card Scheme, and people being aware of that scheme, and reporting properly through the scheme. You’d like to see that examined as part of the Inquiry; is that right?

Ms Kate Scott: Yeah, as far as we can see nothing happens after you input that data. So Jamie had a Yellow Card, many in our group have got Yellow Cards, no one has ever contacted me about it, no one has followed up, people’s got lost, people’s weren’t registered. Sheila Ward’s husband – Stephen Ward, who died, she had to contact them to say, “Oh, just to let you know he’s passed away. He died from his condition because no one followed up.”

And, again, in other countries, after only one instance of this particular condition – and there are more confirmed conditions, but for VITT, for example, one instance of it meant that they could pause it and they reviewed it to say: what’s happening here? Other countries changed much quicker on what age range was being offered that particular vaccine.

Counsel Inquiry: So this is the speed of the regulatory response in the UK to the blood clot safety issue, that’s something you want the Inquiry to examine; is that right?

Ms Kate Scott: Yes, because they have acted – the same for Guillain-Barré syndrome, my understanding is the quicker you’re helped, the better the outcomes are. So VITT is my expertise area because that’s what happened to Jamie, but there are other conditions that are the same, people were not listened to when they said, “I think this is because of the vaccine”, and if they had been, and if medical people were able to get the right pathways in, then people’s outcomes could have been better.

Counsel Inquiry: You also question whether the Yellow Card Scheme is adequate in that it is a voluntary reporting scheme. Would you like to see some assessment on the part of the Inquiry as to whether it is useful to have a mandatory reporting scheme?

Ms Kate Scott: Yeah, again, I’m not an expert but I think it should be mandatory. If I turned up to A&E, they ask mandatory questions of you, about things, and that should have been one of them, you know, “Have you had a vaccine”, which is a foreign thing within your body within a certain amount of time, because especially for certain conditions like Jamie’s there’s a timeframe that is crucial that it only happens in, and if you catch it quickly, outcomes might have been better. Many people, there’s Zion, Lisa Shaw(?) might still be with us. We’ll never know that, but had it been communicated, properly then they might have got the right help and support they needed quicker.

Counsel Inquiry: Mrs Scott, we have gone over a large number of concerns in the course of your evidence, and I want to thank you for the clarity of your answers and for sharing your personal experiences with us.

Mr Mansell: Can I just ask one last quick thing, when you speak to all the other experts, the scientists, the pharmaceuticals, and the government, is just remember that we are people, so they can easily omit or not include or not discuss vaccine injury. We know for a fact, I am the fact, these people over here are the fact, it did happen, and they cannot continue to ignore it. Sorry is a strong word and helping us would make a difference.

Lady Hallett: Thank you very much indeed, I am truly sorry to hear about your husband’s condition.

Ms Kate Scott: Thank you.

Lady Hallett: It must be extraordinarily difficult – (overspeaking) – children.

Ms Kate Scott: Thank you.

Lady Hallett: I do understand your concerns. I may have intervened about one aspect but that’s only because I think that’s for expert witnesses, but I do understand your concerns, and certainly the point you make about you’re human beings, of course you are.

Ms Kate Scott: Yes.

Lady Hallett: And I shall be examining the issues that you have raised very carefully.

Ms Kate Scott: Thank you, because there’s children without daddies and children with disabled daddies and just remember that when they try and pretend we’re not important. We are important and we are part of this pandemic story.

Lady Hallett: I do understand.

Ms Kate Scott: Thank you.

Lady Hallett: Thank you very much.

(The witness withdrew)

Lady Hallett: Ms Stephenson.

Ms Stephenson: My Lady, the next witness is Kamran Mallick.

Mr Kamran Mallick

MR KAMRAN MALLICK (called).

Lady Hallett: Can we just pause – I’m sorry, when the oath is being taken I can’t have people moving around. I’m very sorry. The oath is very important.

Sorry, can we start again, please.

Mr Kamran Mallick

MR KAMRAN MALLICK (sworn).

Lady Hallett: I hope you were warned you will be the last witness of the day. I’m sorry if it’s taken a long time to get to you.

The Witness: Not at all.

Questions From Counsel to the Inquiry

Ms Stephenson: Please can you say your full name.

Mr Kamran Mallick: It’s Kamran Mallick.

Counsel Inquiry: Mr Mallick, thank you for attending today to assist the Inquiry. Just a few preliminary matters. You’ve heard it said before, but please speak up into the microphone and take it slowly.

You have kindly produced two witness statements for Module 4 of the Inquiry. The first is dated 18 July 2024, and it is INQ000474256, a statement on behalf of The Disabled People’s Organisations. And a supplementary statement dated 19 November 2024, INQ000474610.

Can you confirm that you have read both of those statements recently and that you’re satisfied their contents are true?

Mr Kamran Mallick: Yes, I am.

Counsel Inquiry: Thank you. I am going to start with a few background matters about your organisation. Is it right that both of those statements have been prepared in cooperation between four disabled people’s organisations?

Mr Kamran Mallick: Yes, that’s correct.

Counsel Inquiry: And those are Disability Rights UK, Inclusion Scotland, Disability Action Northern Ireland, and Disability Wales?

Mr Kamran Mallick: That’s correct, yes.

Counsel Inquiry: You are the chief executive officer of Disability Rights UK; is that correct?

Mr Kamran Mallick: I am.

Counsel Inquiry: I’ll be using shorthand DPO throughout your evidence to refer to disabled people’s organisations. In terms of who makes up your membership, you explain in your statement that the DPO used the term “disabled people” to mean people facing disabling social barriers due to their impairments or conditions regardless of their age, and this includes physical impairments, mental health conditions, hearing difficulties, deafness, visual impairments, learning difficulties, and neurodiversity. Is that an accurate representation of the people that you’re representing?

Mr Kamran Mallick: Yes, that’s correct, we represent all disabled people, yes.

Counsel Inquiry: Can you give the Inquiry an idea of the number of disabled people that there are in the UK who may be affected by the issues that we’re going to discuss in your evidence?

Mr Kamran Mallick: So in total the UK population, 22/23% of the UK population would be seen as disabled people. So we’re talking about 14 million individuals.

Counsel Inquiry: And between all four DPO, you have a substantial reach across all four nations, a network of partner organisations, and individual members; is that right?

Mr Kamran Mallick: That’s correct, yes.

Counsel Inquiry: What kind of services do DPO offer? Could you explain that in overview?

Mr Kamran Mallick: Sure. So the four national organisations that I am representing today and that are part of this group, we would see ourselves as kind of like the second-tier organisations, and we often will have lots of local and regional disabled people’s organisations that are members of our organisations, but all of us also have direct contact with individual disabled people as well. And we act as their voice on a national basis, really.

In terms of services, it can vary from direct services such as in Northern Ireland there’s a transport service that’s delivered by Disability Action Northern Ireland. Disability Rights UK delivers help lines. So a disabled student helpline, independent living helpline, which are those direct services, but outside of that it’s a lot of advocacy and representation work that we do.

Counsel Inquiry: Does that include engagement with governments, government departments on key issues, raising awareness and campaigning in that way?

Mr Kamran Mallick: Yes. I mean, a lot of our advocacy naturally engages with government and governmental bodies.

Counsel Inquiry: I’m going to turn now to the key issues affecting your members within what we’re looking at in Module 4. At first, dealing with the inclusion of disabled people in the development and trials of vaccines and therapeutics. You identify in your statement concerns about gaps in engagement with governments which, if I might put it this way, left disabled people out of the conversation in terms of trials and development. Can you tell the Inquiry about those concerns?

Mr Kamran Mallick: Sure. So I think it’s really important to recognise where disabled people are in our society. We’re often unseen, unheard, we don’t have access to power, we often don’t have representation in government, in places where decisions are made, where legislation is written, where guidance is designed. And therefore, those spaces have a complete absence of our lived experience of what it’s actually like to live as a disabled person in our country. And so, without that knowledge and information, decisions get made, and we often refer to it as “ableist” thinking. So it’s designed by people who don’t experience the lives that we do and therefore design those things as they would see them. They don’t walk in our shoes, they don’t travel in my wheels, as it were, so they don’t experience the barriers that we do.

So hence we, as organisations, we feel it’s really imperative that the government has robust engagement systems and mechanisms in place that are ongoing, that don’t just – they don’t just try to create them as and when needed, but are ongoing and long-term as required, actually, to the UK Government by the UNCRPD of which we are a signatory to that treaty.

Counsel Inquiry: Just bring that to apply directly to the trials and development of vaccines and therapeutics.

Mr Kamran Mallick: Yes.

Counsel Inquiry: Was it a concern of your organisation that without inclusion in that process, disabled people may have doubts or difficult questions about the safety of vaccines and therapeutics for your members?

Mr Kamran Mallick: Well, absolutely. So there’s an inherent level – levels of uncertainty and mistrust within health systems from a lot of disabled people, just because of the experience that we’ve had of the system ongoing in our lives. We’re often done to, we’re often told that others know best for what’s best for us, that we’re not experts in our own lives and our own conditions that we live with day in, day out. So our concern was that when in this pandemic so much emphasis was being put on that the vaccine was our way out of it, that there was no central voice of disabled people in our organisations in the whole complete planning system, from the point of kind of testing to deployment to, kind of, the whole range of things, really.

Counsel Inquiry: If we could move on, then, to prioritisation decisions for vaccines, part of that deployment system that you talk about which affected disabled people and the clarity of communication, you point out in terms of representation, advice on prioritisation was issued by the Joint Committee on Vaccination and Immunisation, the JCVI, and you had concerns about the representation of disabled people, their voices within the JCVI and its subcommittees when making prioritisation decisions. What were your concerns there?

Mr Kamran Mallick: Well, our concerns was when they were creating the prioritisation list of how – so they were making decisions based on their medical understanding but they were taking no account of how someone who had a medical condition, an underlying health condition, how they structured their lives, that actually would put them at risk of catching the virus and potential worse outcomes, and so therefore a lot of disabled people weren’t included in, for example, the clinically extremely vulnerable list, who actually would still have had particularly poor outcomes had they have caught the virus.

The fact that over 65s were prioritised, and so therefore all the adult population of disabled people who would potentially be at risk of adverse outcomes were not included in the initial rollout and prioritisation lists. So where people were placed within those prioritisation was a concern to us.

Counsel Inquiry: Perhaps if we can move on to look more closely at that concern now, about where people were placed and how their placement was communicated to the disabled community.

You point specifically to the membership of cohorts, priority cohorts 4 and 6, within your statement. You make the point that there was no specific priority cohort for disabled people?

Mr Kamran Mallick: No.

Counsel Inquiry: That disabled people had to fit in or qualify within other groups. Initially, as you’ve just explained, high-risk adults under 65 years of age were in category 6. That was the at September 2020 provisional advice published by the JCVI. You point out that that’s captured a lot of disabled people because many were clinically extremely vulnerable, and that made them high risk. But the position changed, didn’t it: that clinically extremely vulnerable people were then moved to category 4 at the end of December 2020, whilst others with specific underlying conditions remained in category 6.

So I’m taking us through it, with some simplifying, the changes that happened. What was your concern about those changes that I’ve described and the ease of understanding for disabled people about which category they fell into?

Mr Kamran Mallick: Sure. So the first thing to say is the CEV list wasn’t perfect and it certainly wasn’t complete, because it was expanded later on, but, irrespective of that, if I look at myself, I was not included in that list, in any list, so I didn’t have my first call up for a vaccine until April 2021, and yet my own medical professional people told me that I was at high risk because of my lung capacity, and so if I’d have caught it …

So I think it is really important to remember that millions of people weren’t included in the CEV list even though that was then prioritised.

Outside of that, the communication systems that then told people where they fitted in, what lists they were in, when their prioritisation – when they would be called up, was not accessible in itself. The whole communication output from government lacked accessibility on so many levels.

And if we just take, for example, the NHS standard on accessible information which has been in – kind of in law since 2017, wasn’t applied. People were receiving letters that were not in Easy Read or accessible information. People who, you know, blind people were receiving letters that were telling them something but they had no access how to read it. And particularly at a time when we were during a lockdown, when the current – kind of the support systems that people would have relied on suddenly weren’t available to them. So people with learning disabilities, for example, if they were receiving notification by post, and it’s not in Easy Read, they can’t then interpret what that tells them.

Counsel Inquiry: Was it also the case that your own organisation was giving advice to some of those you represent, that they would need to go to the GP themselves and between them and the GP work out what category they might fall into and whether they were entitled to a vaccine?

Mr Kamran Mallick: So – absolutely. So part of our – or what we took on upon ourselves, both as a national organisation and our member organisation, was that kind of role to try to help interpret what was being sent to people and what they should do.

Counsel Inquiry: I want now to ask you about prioritisation decisions affecting people with learning disabilities. To put this into context, you explain in your statement that the JCVI prioritisation advice at the beginning of December 2020 included people with severe and profound learning disability within priority group 6, and that then changed and expanded at the end of February 2021 to include all of those on the GP learning disability register in addition to some other named conditions. So in other words, initially, only people with severe and profound learning disability were included in priority cohort 6, and then that definition was expanded.

Please can you explain the concerns that you have about that decision making.

Mr Kamran Mallick: Okay, so I think the first thing to say is that people with learning disability don’t self-label themselves like that. And so people – individuals don’t think: oh, well, I’m profound and mild –

Counsel Inquiry: Severe and profound –

Mr Kamran Mallick: Severe and profound, sorry, and mild moderate. Because people are not identifying as that, they wouldn’t know which category they fitted into in the first place.

I think there are also issues that there are no registers in places like Scotland for people with learning disabilities. So that wouldn’t work.

And it kind of speaks to what I said earlier about why the JCVI actually chose to go down – categorising in that way when there is existing data and known knowledge that people with learning disabilities and those – have higher rates of death through health-related issues, and so there’s pre-existing data on that, on the kind of mortality rates of people with learning disability, and yet that didn’t seem to come into the decision here and these, kind of, split groups.

And the other thing to say is, while the JCVI expanded the definition, that was only after, you know, people like our organisations writing to them, but also there was the – Jo Whiley, radio presenter, who was high profile, was able to raise the concern that she had about a family member.

So those kind of things started to push them. But that’s not what it should take.

Counsel Inquiry: When you refer to some of the statistics, I think you point out in your statement that your understanding from studies is that individuals with learning disabilities were 3.6 times more likely to die from Covid but that that statistic didn’t separate people into those categories of how –

Mr Kamran Mallick: No, that’s right.

Counsel Inquiry: – severe their disability might be, it was for all people who were within that group?

Mr Kamran Mallick: That’s correct.

Counsel Inquiry: You have also expressed concern in your statement about prioritisation of people with Down’s syndrome specifically. Could you just tell us what your concerns were there?

Mr Kamran Mallick: So, again, it was similar concerns as we had with people with learning disabilities, that those individuals, the risk they had to worse outcomes from catching the virus were, again, well known. And again, those individuals were not prioritised.

And again, this all comes back to a lack of, kind of, input from our kind of organisations into the decision-making process.

Counsel Inquiry: I’m going to move on now to the issue of unpaid carers, and how they were prioritised for vaccination. This is a subject you focused on in your supplementary statement.

The timeline here is a relatively complex one, Mr Mallick, we may not have the space to do it justice here, but if I might summarise for context from your statement, was the position this: that the early, sometimes termed “provisional”, JCVI advice of September 2020 made no reference to unpaid carers? And then there were two versions of advice issued in December, at the beginning and then at the end of December 2020, where unpaid carers weren’t specifically mentioned in the main text, but they were referred to as a footnote, literally a footnote, in the document. In the first instance referring the reader to the Green Book, which contained a list of conditions under which some types of unpaid carers fell, and then, secondly, as a footnote within the guidance.

What were your concerns about the clarity of the JCVI advice which was implemented for unpaid carers, and, more than that, what effect did that have on disabled people and their carers?

Mr Kamran Mallick: The first thing I would just say is there was a total lack of clarity. In order to put out a prioritisation list that then required you to look in footnotes and open other documents such as Green Books, I don’t know how many members of the general public would even be aware that there is such a thing as a Green Book, and then to go and try to read something that’s written in a language that speaks to a particular type of individual, those kind of scientists, professionals, but not to the general public, a layperson who might be trying to find out where they fit in within the prioritisation. To expect members of the public to do that, unpaid carers to be doing that, is just not acceptable.

The other thing is it comes back again to not understanding how disabled people structure – how we structure our lives, and that a lot of us, much more than most kind of data will tell you, rely on the kind of unpaid support of family or friends, of other systems that we put in place, to provide us with, kind of, the day-to-day support we need to live our lives, and – because that knowledge was not understood, unpaid carers were not part of the – the – kind of the prioritisation, and again required our organisations to be kind of advocating on that point that they should be.

The impact for disabled people is that if you yourself are at risk of worse outcomes of catching Covid and you are isolating and you are relying on those unpaid carers, who are then not eligible for or not able to get the vaccine, you are at greater risk, because those carers don’t necessarily live with you but they will be coming into your space. And so if those individuals are not vaccinated, then you’re at risk as well. So it creates a real strain on that individual and their relationship with one another.

Counsel Inquiry: Were there also some concerns about the definition itself of unpaid carer in its revised form, that it was a person who was the sole or primary carer of an elderly or disabled person at increased risk of Covid-19 mortality, and therefore clinically vulnerable? Did you have views on whether that properly served the disabled community?

Mr Kamran Mallick: Well, again, I think the risk is this idea that it might be a sole or only person that looks after you or supports you or gives you some support. You may have multiple people that provide you support through a week.

The other kind of confusions around this was – there was an expectation that unpaid carers would apply for Carer’s Allowance. That’s even if they knew about it, because there was certainly no information going out to people to say who is and who isn’t able to claim that particular benefit, and also the time lag between knowing about it, applying for it and a decision being made would have meant that months would have gone by before you’d be eligible.

Counsel Inquiry: Mr Mallick, we perhaps don’t have time to go into the issue as it stood in every nation, but you point out in your statement that disabled people across the four nations experienced differences in the definitions of unpaid carers or the practical ways that they were applied and identified. Was that also the case?

Mr Kamran Mallick: Yes, that’s right.

Counsel Inquiry: I’m going to move on now to the issue of accessibility, but both in terms of communications about vaccines and therapeutics and also the accessibility of attending for vaccination.

You have already mentioned in your evidence, and you report in your statement, instances of disabled people receiving letters regarding vaccination in non-accessible formats. Can you tell us about those issues and those problems that they caused?

Mr Kamran Mallick: Yes. So if you imagine receiving a letter that has a language that you don’t fully understand, it’s an official letter that you’ve received, it’s got “NHS” written at the top and you can’t really quite work out what it’s about, the anxiety and stress that that might cause you, because you don’t know how serious it is, if you’re supposed to do something or go somewhere or call someone – so if you can’t understand a letter that’s officially been sent to you during a very difficult period in the country, or through a pandemic, that’s kind of creating extreme anxiety and stress for those individuals.

It also means that that person may then not act on anything, may not know what to do with it, particularly if you’ve got someone with a learning disability and the letter is in kind of standard English or complex English, not in an Easy Read version or plain English formats. If you’re blind and you receive a letter. Also, you know, deaf people, English is not their first language. BSL is often the first language.

So if you don’t have access to those alternative formats, you won’t get the messing, that’s coming at you.

Counsel Inquiry: Presumably the same goes for booking systems, which need to be accessible in the ways that you’ve described in terms of plain English, adjusted font, digital and non-digital routes?

Mr Kamran Mallick: Yes. So all of those rules apply, irrespective of the medium that you’re choosing to use, remembering we have a digital divide in the country of those who do and don’t have access to Internet, web, those kind of technologies, and that is particularly pronounced in disabled people’s communities.

Counsel Inquiry: And you – perhaps this falls into one of the things that you would recommend or ask the Inquiry to consider, is that it’s really important for the health services responsible for contacting disabled people to have a record of their communication preferences and in a pandemic scenario, for there to be easy access to communication preferences and for those to be used in vaccine booking systems?

Mr Kamran Mallick: Should be the absolute basic. Once you’ve told the NHS what your preferred communication method is, it should be registered and everything going out should be in that format.

Counsel Inquiry: Not forgetting, then, finally on this point, the physical accessibility of going to get a vaccine for disabled people. Can you explain some of the challenges which were experienced and reported to your organisation in attending vaccination centres?

Mr Kamran Mallick: So I think I’ve, you know, put a particular case in my witness statement around Dr Rupy Kaur, who is someone with 24 hours support, and has cerebral palsy and is an electric wheelchair user, was, when looking for vaccination for herself and her carers, was sent to a football stadium in Manchester, the Etihad stadium, and on arrival her carers found that there was no access for wheelchair users. And yet, when looking at the website that wasn’t clearly evident. So that information just isn’t front and centre about as a – when you’re picking what your access requirements are, the system should be designed to then identify the centres that actually have that accessibility for you so you’re not sent trying to find the right place to go to.

And then, when trying to kind of tackle that, through 111 and the GP, was kind of then accused that you’re trying to jump the system, the queue, to try to get priority elsewhere. So, kind of, accessibility starts at the point being informed on the web booking and having alternative methods but then when you get there, the location of centres, and then the whole kind of accessibility route of arrival, how near it is to you, if you can drive there, is there parking for wheelchair users or Blue Badge holders? Are there drop-off points? Are you waiting outside in the rain as a wheelchair user? When I went to get my vaccination, I live in North London, but for some reason I was sent to St Thomas’ in Central London. Now, I’m fortunate I drive, so I drove there on that occasion, but found it difficult to park anywhere and then had to wait outside in a huge queue in the rain, in the cold, and so all of these things are just not taken into account.

And I think, just what I would like to say, what’s frustrating for our organisations is we tell the government this all the time. This is not something new. Disabled people have always been around and we’ve been engaging with governments for years, saying the same things over and over again.

Counsel Inquiry: Thank you for sharing those experiences.

I just want to touch briefly on the point of monitoring and uptake. Is it right that you have concerns about the sufficiency of the type of data captured about disabled people and the ability of such data to reflect any disparities in vaccine uptake? And you point in your statement to the fact that the UK Government at times relied on ONS data, which wasn’t up to date, it didn’t separate types of disability, for example. Would you consider it also one of the key things to come out of your statement, that governments need to have data which distinguishes between types of disability which is up to date, captured in as realtime as possible, in an emergency scenario, so that groups that might have lower uptake can be accurately tracked and action can be taken to help them?

Mr Kamran Mallick: Yeah, I would absolutely say that. And it’s been systemically an issue that we don’t collect that level of data in that, kind of, in that way. And relying on 20 – I think it was the 2011 census, data that didn’t disaggregate the data in that way based on impairments and disability. So you can’t monitor, and if you can’t monitor it you can’t then take action on the areas that you need to be doing.

Counsel Inquiry: Finally, then, the subject of therapeutics and the steps taken to enable their use including of prophylactics and new drugs amongst disabled people. What were your concerns, please, about that?

Mr Kamran Mallick: So I think looking at it, the priority was solely based on the vaccine programme. A huge amount of investment went into that and not looking at other therapeutics, and particularly when we’ve got in our nation 1.2 million immunocompromised individuals who – for whom the vaccine was not a possibility, and they were not able to take that, but that when there was evidence of other therapeutics available that were available in other countries and were showing good rates of success that we didn’t have access to those. And I think our question was, really, is why was – why were they not prioritised? Was it because there was other evidence that the government had access to about them not being effective or was it purely a financial decision?

Counsel Inquiry: Would it be right to characterise the DPO’s view on the cancellation of the Evusheld contract as one of particular disappointment for you?

Mr Kamran Mallick: Yes, again, because of the success rates that it was showing in other places, absolutely. And what it’s – the impact is that those individuals who can’t have the vaccine have to continue shielding. They, while the rest of the country got out and went back to a level of normality, those individuals’ lives couldn’t change. They had to continue to isolate but without any of the support systems that may have been available to them during the height of the pandemic.

Ms Stephenson: Mr Mallick, thank you very much. Those are all my questions for you.

My Lady, do you have any questions?

Lady Hallett: Thank you very much, Mr Mallick. I find it astonishing that the government can ignore an advocate as eloquent as you. I think I might have described your advocacy as eloquent last time you helped me. You’ve now helped me twice and I’ve got a feeling you’re going to be helping me in the future, so thank you very much indeed. You’ve made some very important points and I’m really grateful to you.

The Witness: Thank you.

(The witness withdrew)

Lady Hallett: Right, we shall finish now and start again at 10.00 tomorrow.

(3.57 pm)

(The hearing adjourned until 10.00 am the following day)