7. Submissions on Behalf of Long Covid Groups and Disabled People’s Organisations by Ms Sivakumaran

Ms Sivakumaran: So, my Lady, I appear on behalf of the three long Covid groups, along with Anthony Metzer King’s Counsel, and Sangeetha Iengar. I also appear on behalf of the disabled people’s organisations, who have all been granted core participant status. I am instructed by Bhatt Murphy Solicitors for both groups.

As you are aware, Anthony Metzer King’s Counsel has provided sincere apologies for not being present today. He has sought hard to attend at least remotely, but has not been able to be excused from deputy high court judicial training, and I’m sure that you will accept that there is no discourtesy intended to my Lady or to the parties by his absence.

Lady Hallett: Of course.

Ms Sivakumaran: You will have observed from both groups’ written submissions that they share common positions on procedural matters that are being considered today, and it’s for that reason that I propose to address you on each group’s status as core participants before making joint submissions on the remaining matters on the agenda. Turning first to the long Covid groups, three groups have been granted core participant status due to their significant interest in the matters examined under Module 2. They are Long Covid SOS, Long Covid Kids and Long Covid Support, they are grateful for this opportunity to represent the collective interests of their members and the 2.3 million adults and children – that is at least 3.5% of the population – who are victims of long Covid. It would perhaps be helpful to open with a short introduction about each group. Long Covid Support was established in March 2020 as a Facebook group and has grown quickly since then. Their Facebook support group now has over 56,000 members globally, with 23,000 based in the UK. It has become a go-to resource and community for people suffering from long Covid. They campaign and advocate for recognition, rehabilitation and research into treatments in the UK and facilitate international support for those with long Covid.

Long Covid SOS was established in June 2020 as a volunteer-run patient advocacy and campaign group. Nearly 4,000 people have signed up to their website and they’re an important voice for those with long Covid. They promote recognition and understanding and advocate for the support of people with long Covid by working with relevant government departments and institutions. They also campaign for more research into long Covid.

Long Covid Kids was established in September 2020 by a group of families whose children have become victims of long Covid. They have grown to provide support services for 10,000 families and they continue to represent those families’ interests in relevant national stakeholder forums.

They are all representative organisations of victims of long Covid.

In their written submissions at paragraph 3 to 7, the long Covid groups have explained why they consider themselves as victims of Covid-19. Long Covid, as you may be aware, is the term used to describe the prolonged and fluctuating symptoms following an infection of Covid-19, and it has been defined by NICE as the signs and symptoms which continue for more than 12 weeks and are not explained by an alternative diagnosis.

Many previously fit and healthy individuals have suffered profound changes to their lives as they continue to experience the effects of the disease. They have had to fight hard for its recognition as an illness and disability, and they wish to underscore that they are suffering from the disease itself, and this is why they are asking the Inquiry to recognise their status as victims of Covid-19.

As I mentioned earlier, 3.5% of the population are believed to suffer from long Covid at the most recent statistical analysis. This is a significant cohort of the population and they were not mentioned by Mr Keith King’s Counsel’s review of the events and impact of Covid since December 2020. This may have been a simple oversight but its mention, as long Covid groups’ experience of the pandemic, is one of oversight. During the pandemic the individuals suffering from long Covid, feeling overlooked by government decision-makers who failed to recognise and respond to long Covid, meant that they had to come together and they formed their groups, whose whole purpose is to advocate on their behalf. In pursuit of government recognition and improved government decision-making, they made direct interventions at the highest levels of government on the risks of long Covid and the need for public recognition and public messaging relating to long Covid.

As an example, all three long Covid organisations were consulted as part of the Department of Health and ministerial round table on Covid-19 with NICE, ONS and NHSE. There were monthly meetings, twice chaired by the Secretary of State of Health and Social Care, and as participants to the round table, the long Covid groups provided recommendations to ministers on important issues, such as the need for public messaging identifying the risks of chronic illness and disability from SARS-CoV-2, and they voiced concern for the pressure on the NHS that sickness and absence due to long-term illness would inevitably cause.

All three organisations have become important public voices for the long Covid community since the early stages of the pandemic, and they have been part of government taskforces as well as providing advisory roles on NIHR-funded research projects. They anticipate being able to assist this Inquiry by sharing their perspective of the suffering of those with long Covid as well as their experiences of engaging with administrative and political decision-makers during the pandemic.

Although initially concerned about the limited explicit reference to long Covid in the terms of reference, the long Covid groups have welcomed my Lady’s comments in the final consultation summary report on the terms of reference.

Long Covid groups have been reassured by your commitment that you will read the terms of reference as including the need to investigate the extent to which risks associated with long Covid were considered, including investigation into how decisions were made, communicated and implemented.

They have welcomed Mr Keith King’s Counsel’s comments this morning when he mentioned that the investigation for Module 2 will consider whether the likely impact of long Covid was sufficiently assessed and will be investigated within this module.

They reaffirmed their commitment to fully assist the Inquiry in its investigations as they seek answers to why the risks of long Covid and the risks of chronic illness and disability were not seemingly factored into the government’s response to the pandemic.

Mr Keith: My Lady, I do apologise for interrupting Ms Sivakumaran. I wonder whether that’s an appropriate time to take the break, which I know the Inquiry staff I think were anticipating would be around about this time.

Lady Hallett: Sorry, I thought they were expecting it to be at about 1.00 – no, Mr Smith is shaking his head. Apologies.

On the last occasion I think I forgot Ms Gallagher after lunch, so at least it will be – with any luck I won’t forget you after lunch, Ms Sivakumaran!

Right, if it’s 12.45, come back at 1.45.

Mr Keith: Please.

Thank you, my Lady.

Lady Hallett: Thank you.

(12.46 pm)

(The short adjournment)

(1.45 pm)

Lady Hallett: Right, thank you very much. Sorry to have interrupted you.

Ms Sivakumaran: My Lady, I’ll be turning next to the disabled people’s organisations, and these submissions are made on behalf of Disability Rights UK, Disability Action Northern Ireland, Inclusion Scotland and Disability Wales.

Disability Rights UK was founded in 2012 and is a leading national disability organisation led by disabled people. The majority of trustees and staff are disabled people and their work is rooted in an experience of disabled people and gives a voice to their concerns through campaigning for central and local government improvements in policies and services as well, as providing information and advice.

Disability Action Northern Ireland originated in the 1950s. It is now the largest Northern Ireland-wide pan-disability organisation working with disabled people, and it’s an umbrella organisation for more than 300 organisations led by disabled people, and they advocate for the rights of the deaf and disabled.

Inclusion Scotland is a national network of disabled people, their organisations and allies. It works to achieve positive changes to policy and practice so that they are fully included throughout Scottish society as equal citizens.

And Disability Wales is a Welsh national association of disabled people’s organisations, striving to achieve rights and equality for all disabled people in Wales. Its core role is to represent the views and priorities of its members to government with the aim of informing and influencing policy, and they have a hundred member organisations across Wales, 29 of which are full member disabled people’s organisations.

All four organisations are run by and for disabled people, they are majority led, directed, governed and staffed by disabled people, and they use the term “disabled people” to mean people facing disabling societal barriers due to their impairments or conditions, regardless of their age. This includes physical impairments, mental health conditions, hearing impairments, deaf people with British Sign Language as their first language, visual impairments, learning difficulties, and neurodiverse people.

They are grateful for their recognition as core participants in Module 2 and are committed to assisting the Inquiry by representing the interests of their constituents and those with pre-existing health inequalities.

The disabled people’s organisations emphasise that inequality is at the heart of their experience during the pandemic. First, the pandemic had a disproportionate impact on them. They were at significantly greater risk of death from Covid-19. Disabled people made up six in ten deaths from Covid-19, which increased to seven in ten in Wales.

Secondly, they suffered disproportionate hardship and significant harm as a result of the failure to consider their needs when responding to the pandemic. This included psychological distress, unequal access to emergency health treatment, social isolation and loneliness as well as difficulties accessing the most basic of necessities, such as food, medicine, personal protective equipment and social care.

Throughout the pandemic, all four disabled people’s organisations actively advocated for their interests to be considered by relevant decision-makers. They have a significant interest in this Inquiry’s investigations because of the profound impact of the pandemic on disabled people.

My Lady, turning now to our submissions, we have one preliminary observation on behalf of the long Covid groups as well as the disabled people’s organisations, and that is in relation to reasonable adjustments.

We are grateful for the indication this morning that the Inquiry will review its arrangements for access to the proceedings. We note that we do have a joint request for the Inquiry to consider reasonable adjustments to the proceedings as well as the publication of evidence to ensure that the Inquiry is accessible to the public.

To this end, the long Covid groups and the disabled people’s organisations would encourage the Inquiry to work from a social model of disability. That is, to identify the barriers to access, and remove or mitigate them.

A number of simple proposals have been set out in the disabled people’s organisations’ submissions at paragraph 12, and they would invite the Inquiry to consider adopting them. In addition, both groups are willing to be consulted by the Inquiry on improving access and to provide any further assistance or feedback on accessibility within the Inquiry proceedings and their publication of evidence.

Turning next to our substantive submissions, the long Covid groups and disabled people’s organisations share common positions on the relevant matters on the agenda. We rely on both our written submissions and I therefore do not intend to repeat them in detail, but I do wish to summarise the following points.

Turning first to the issue of scope of Module 2, the disabled people’s organisations, with the support of the long Covid groups, have raised concerns about the absence of reference to inequalities in five out of six paragraphs of the scope of Module 2.

My Lady, you have committed to inequalities being at the forefront of the Inquiry’s investigations in your opening statement in July 2022, and most recently in your grant of CP status for the disabled people’s organisations. If inequalities are truly to be at the forefront of the Inquiry’s investigations, we respectfully submit that they should be threaded throughout the scope and not reserved to paragraph 3 of 6.

At paragraph 17 of the disabled people’s organisations’ written submissions, they have made a number of suggestions on how inequalities could be added to the scope of this module. We would invite you to consider those suggestions. In our submission, it’s not sufficient to give voice to a commitment to address inequalities, it must also be acted upon. Amending the scope to explicitly include examination of inequalities in all aspects of administrative and political decision-making is giving effect to that voiced commitment.

It’s unnecessary to repeat our submissions on the disproportionate risk of death and hardship that disabled people faced during the pandemic. We explain simply that our submissions in relation to scope are informed by their lived experience. They are looking to the Inquiry to ask the difficult questions as to whether their circumstances were taken into account and when those decisions were made; and if not, why not.

We note that their concerns about the scope are shared by other affected groups, including the bereaved families, the children’s interest groups, Solace Women’s Aid and Southall Black Sisters.

It is for those reasons that we invite you to consider how scope is addressed in relation to inequalities.

There are two further issues that we raise in respect of scope. First, we would invite the Inquiry to develop the issues which will be covered in the scope in consultation with core participants to realise an agreed list of issues. The scope of Module 2 is, as Mr Keith King’s Counsel has noted in his note, wide and ambitious. There is a need for clarity on what issues the Inquiry team will have in mind during its investigations, as well as the delineation between Module 2 and other modules. A list of issues will help to provide structure to the investigation in the module, informing decisions on relevance of evidence, lines of inquiry, and identification of witnesses to be called.

We have set out at footnotes 7 to 11 on page 6 of the long Covid submissions, and at footnote 13 on page 9 of the disabled people’s organisations’ submissions, the practice of other Inquiries who have developed lists of issues. In our submission, it has become good practice to develop a list of issues in consultation with core participants in an Inquiry, and we would look forward to an opportunity to effectively assist this Inquiry by contributing to the development of an agreed list of issues for Module 2.

This is not a prescriptive or determinate list but rather an iterative list, which can be added to and can be adapted as further lines of inquiry are developed through disclosure of Rule 9s and further evidence.

Secondly, on behalf of Inclusion Scotland, we would invite the Inquiry to clearly state how they intend to minimise duplication with a Scottish public inquiry, as required by the terms of reference. We understand this is necessary as envisaged by the terms of reference but we would simply ask for transparency of that approach.

Turning next to the question of the Rule 9 requests, we wish to make three short points. We note that all organisations have been requested to provide a chronology and corporate statement setting out a narrative of relevant events and the lessons to be learnt. We would strongly encourage the Inquiry, if it has not already done so, to ask the relevant organisations to ensure that the corporate statement addresses the organisation’s understanding of its responsibilities, remit, processes, policies and resources in place at the time. Not only will this put into context any lessons that are purported to have been learnt, these statements will also clarify what the organisation’s position is in relation to the narrative of the relevant events.

On behalf of the disabled people’s organisations, the Inquiry is requested to ensure that, to the extent this is not already addressed, a Rule 9 request is sent to the relevant organisations and departments asking whether they considered themselves responsible for assessing the impact of their decisions in relation to the pandemic on disabled people, and if not, who they thought held that responsibility.

The disabled people’s organisations have identified two further departments which should be subject to Rule 9 requests, if not already captured, at paragraph 24(a), and we are grateful for the indication this morning that this request will be considered.

Turning to the issue of disclosure, we make three points, and these are advanced in the interests of transparency and open co-operation. We recognise that ultimately it is a matter for the Inquiry to decide on the scope of disclosure. However, we would invite the Inquiry to disclose the list of key narrative events, decision-making procedures of bodies and persons relevant to the core political and administrative decision-making, and the core decisions that were referred to at paragraph 44 of Counsel to the Inquiry’s note and which he referred to this morning.

We would suggest that core participants are provided with the opportunity to feed into the list to ensure that there are no gaps in disclosure. Core participants are acknowledged to have a role to play and can only effectively participate if they are included. This could be by way of disclosure of the Rule 9 requests or by disclosure just of the list of events, persons and decisions that have been identified by the Inquiry.

The purpose of this request is to assist the Inquiry not to obstruct it, and we would support the Bereaved Families’ submissions and others that this approach to disclosure is a novel approach and we would encourage the Inquiry to adapt to these circumstances and consider disclosing those events and persons and decisions.

We would also invite, in our second request on disclosure, the Inquiry to disclose the statements from document providers explaining their document review. It would be helpful if document providers could, when preparing those statements, confirm if documents had been deleted before or after there were taken steps to retain potentially relevant material, for example through the use of WhatsApp, Signal or Cabinet Office Instant Chat applications. In our submission, this would be a helpful indication to give in their statements.

Finally, on behalf of the disabled people’s organisation, the Inquiry is invited to request disclosure from all relevant government organisations and institutions of their relevant equality impact assessments. And where not carried out, a statement confirming this and the reasons.

Turning to the issue of expert witnesses, we welcome the Inquiry’s commitment to disclose the identity of the witnesses and the questions they will be asked, and we ask only that this is done as early as possible so that we may effectively assist the Inquiry in considering whether the experts address all relevant issues, raise any objections we may have, and to suggest alternative experts where appropriate.

We understand that there is already a provisional list and early disclosure of that list would assist us in providing our observations.

In respect of the Listening Exercise, long Covid groups and the disabled people’s organisations make two core submissions. We welcome the note from the Solicitor to the Inquiry that was published today offering core participants an opportunity to feed into the design of the Listening Exercise, and we hope this marks the start of a collaborative approach with both the long Covid groups and the disabled people’s organisations, who would welcome the opportunity to work with the Inquiry to develop this exercise and to achieve its full potential.

We would, however, also note that the Listening Exercise cannot replace the need to hear direct personal testimony within the Inquiry’s proceedings. You have already noted that individual evidence of circumstances of death should be admitted if relevant to possible systemic failings in your Module 1 ruling. The terms of reference at C anticipate the Inquiry will listen to accounts of individual cases of harm as well as death. Both the long Covid groups and the disabled people’s organisations submit that individual evidence of harm which is relevant to systemic failings should be heard within the main module structure of the Inquiry, including Module 2, not least because we invite you, as the Chair, to hear directly from individual voices of people who have suffered hardship or loss as a result of the pandemic. As currently proposed, we infer that you will not be personally hearing individual testimony gathered in the Listening Exercise. The terms of reference recognising that the Inquiry will be listening to these accounts will inform the Inquiry’s understanding of the pandemic, the response and lessons to be learnt.

Accordingly, we would invite you to hear directly from a representative sample of these voices. Anonymised abstract evidence cannot do justice to their experience and in its absence there is a real risk that context will be lost.

As an overarching point in relation to the Listening Exercise, the disabled people’s organisations’ submissions on reviewing access to the proceedings is especially relevant to the Listening Exercise. The Inquiry is invited to develop the outreach strategy in consultation with them and with the long Covid groups to identify the barriers to access and seek to remove or minimise those barriers.

The Inquiry is reminded of the danger of certain groups and their harmful experiences being airbrushed out of history if reasonable adjustments are not made.

Our final point, which is expressed in the spirit of co-operation and a desire to assist the Inquiry, is that the long Covid groups and disabled people’s organisations are willing to provide organisational statements of their experiences of engaging with the administrative and political decision-makers about the need to consider their interests when making decisions in response to the pandemic.

We noted Mr Keith King’s Counsel’s comments that Rule 9 requests will be made to civil society and special interest groups, and they simply say they have been active in making – and interest groups. The long Covid groups and the disabled people’s organisations welcome that comment and those observations, and they’re offering, through the provision of statements and supporting evidence, to assist the Inquiry by providing the picture from the other side of the window from the government organisations which have provided evidence so far.

We anticipate that the Inquiry will have in mind the need to hear from all perspectives, not only non-governmental – not only governmental perspectives, and would welcome the opportunity to assist the Inquiry in this respect.

My Lady, this is all I wish to raise, unless I can assist you further.

Lady Hallett: Thank you very much indeed. Again, some points you make with considerable force.

As far as hearing direct evidence during the Inquiry public hearings, I’ve made clear and I hope now allayed some concerns on the part of the bereaved that I would be hearing and intend to hear from individuals about the circumstances they experienced where they related to possible systemic issues in the modules and in the public hearings. I only mention the bereaved because, of course, I was dealing with the concern that they had raised. I fully intend, where relevant, to hear evidence from individuals with other – for example, with individuals with disabilities, about their experiences where they relate or possibly raise issues of systemic failings. So I hope I can allay that concern immediately. And I apologise if the language used before didn’t make that clear. We were dealing with a specific concern. We should have made it clear whether it intended to apply more broadly. So it definitely does. And obviously it would also include people with long Covid if they had evidence that might relate to possible systemic failings.

As far as accessibility and reasonable adjustments are concerned, I for one and I know the Inquiry team would welcome the kind of advice that the groups you represent can offer to the team to make sure we make every reasonable adjustment that we can, because it’s essential that they are able to participate effectively, and not only in the Inquiry hearings and in this kind of hearing but also, as you say, in the Listening Exercise. And that has always been our intention, and that’s why we have sought professional expertise as to how best we can do it.

The only other matter I wanted to raise at this stage, and I’ll consider all the other points you make obviously very carefully, is the relationship with the Scottish Inquiry. As I said to Ms Mitchell earlier, we were working on a memorandum of understanding on how we would avoid duplication and how we’d work together with the previous Chair, but obviously things have had to wait until the new Chair can get his feet under the table and we can make some progress. But it’s very much an item on my quite lengthy to-do list.

Thank you very much indeed for your help.

Ms Sivakumaran: Thank you very much, my Lady.

Lady Hallett: Right. Is it Ms Davies next?