5. Submission by Mr Metzer, KC

Mr Metzer: My Lady, I appear on behalf of the four Long Covid groups, together with my learned friends Ms Iengar and Ms Sivakumaran who are instructed by Bhatt Murphy Solicitors.

As you are aware, my Lady, three of the four Long Covid group organisations are also Core Participants in Module 2, on administrative and Government decision-making, and have been introduced to you at the Module 2 preliminary hearing last October.

However, the full composition of the Long Covid groups before you today is different. Long COVID Physio is a new Core Participant to the Inquiry and of course we also have different representation in attendance today than for the previous module.

I therefore propose to introduce briefly the four Long Covid organisations before setting out their interest in Module 3, and then provide an overview of our position on the procedural matters under consideration today.

The Long Covid groups. The Long Covid groups comprise Long Covid Support, Long Covid SOS, Long Covid Kids and Long COVID Physio. Long Covid Support began as a peer support Facebook group in March 2020 and has quickly grown. It has over 57,000 members globally, with 23,000 in the UK. The charity provides support and information and campaigns for equitable access to high quality healthcare, employment, welfare rights and research into treatment.

Long Covid SOS was established in June 2020 as a volunteer-run patient advocacy and campaign group. Almost 5,000 individuals have signed up to their website. Long Covid SOS provides recognition, research and rehabilitation for people with Long Covid by providing informed and lived experience perspective in Long Covid.

Long Covid Kids was formed in September 20 by a group of families whose children became victims of Long Covid. The organisation has grown to provide support services to 11,000 families and represents those families’ interests in relevant national stakeholder forums.

Long COVID Physio is a patient-led association of physiotherapists that began in November 2020 to provide peer support, education and advocacy for physiotherapists and allied healthcare professionals living with Long Covid. The organisation has 393 Facebook members and a website with more than 30,000 monthly page views. It provides free educational resources and advocates for safe and effective rehabilitation.

Long Covid and interest in Module 3. The four Long Covid organisations were all formed in the first year of the pandemic. Their professional membership spans all aspects of health and education sectors as well as occupational health and research. They have played a direct and significant role in the characterisation, identification, diagnosis and treatment of Long Covid, and are all committed to assisting the Inquiry by sharing their lived experience and involvement with advocating for recognition, treatment and research or Long Covid.

Turning then to their interest in Module 3, the Long Covid groups taken together represent the collective interest of at least 2 million adult and child victims of Long Covid who have suffered from life changing and disabling illness following infection from SARS-Cov-2.

As almost 3 per cent of the population, it is clearly a significant cohort of the population directly affected by Covid-19 and living with it. They welcome the Chair’s recognition that Long Covid groups will assist the Inquiry to understand “the experiences and perspectives of those suffering from Long Covid in the UK, as well as the response of healthcare systems in characterising, diagnosing and treating the condition”.

A unique characteristic of Long Covid is that it is a patient-derived term. Individuals suffering from Long Covid struggle in many ways to access the healthcare system during the pandemic. They struggled to receive a diagnosis, their symptoms were often disbelieved, they were discredited and they experienced difficulty in accessing appropriate care and treatment.

The dissonance between their lived experience of Long Covid as a severely disabling, life-altering chronic illness and the pervasive public perception of the illness, even once generally recognised, as mild, brief and easily treated at home, meant they had a very different experience of the healthcare system to patients of other diseases.

The Long Covid sufferers, many of whom were healthcare workers, came together online and established peer support organisations who: (1) advocated for the proper recognition of Long Covid; (2) called for more effective access to healthcare system, including to safe and effective care, diagnosis and treatments; and (3) were proponents for research into Long Covid and its underlying biological mechanisms.

It was this collective advocacy of patients that led to the formal recognition of Long Covid as a clinical illness. The WHO developed a clinical case definition of Long Covid for adults by the Delphi methodology in October 2021 and developed a separate clinical case definition of Long Covid in children and adolescents more recently, as on 16 February 2023.

We anticipate that central to Module 3 is the investigation of how and why patient advocacy outside formal clinical channels was required to refine the clinical recognition and understanding of the condition that affects such a sizeable proportion of the population.

Scope. My Lady, I now turn to our substantive procedural submissions. I began by explaining the Long Covid groups’ interest in Module 3 to contextualise the following points. We are very grateful to your indication this morning that the nature of future modules will be shared with Core Participants and your recognition that there will be areas of overlap, for example health inequalities. We agree, respectfully, that this is vitally important to be shared with Core Participants at an early stage.

We also welcome my Lady’s commitment to providing interim reports during the course of these proceedings. In terms of the lessons being learned, several of the concerns investigated by the Inquiry are not confined to the past, their ongoing concerns and interim recommendations are welcomed.

Further on the issue of scope we make three short points. The 12-point provisional outline of scope contains only one express reference to Long Covid , which appears in the final paragraph. The areas of particular focus highlighted this morning also contained one reference to Long Covid. Whilst the express investigation of Long Covid’s characterisation, diagnosis and treatment are, we say, correctly included within the remit of Module 3, we would like to respectfully remind the Inquiry that Long Covid must not be consigned to a mere footnote. It is a central threat to the Inquiry’s assessment of healthcare consequences.

Let us take point 1 of the provisional scope as one example. The delays in formally recognising Long Covid, in publishing the wider range of symptoms associated with Covid-19 and in reporting the vast numbers of people affected by the condition, all caused Long Covid sufferers to have an entirely distinct experience of healthcare provision and treatment than those who experienced acute infections of Covid-19.

Disbelief, dismissal and denial characterised many Long Covid sufferers’ experience of the healthcare system. They struggled to receive a diagnosis, to access a care pathway and to receive treatment. Through this process individuals reported being disbelieved by healthcare providers, having their physiological symptoms minimised and dismissed as a mental health syndrome, and being denied effective treatment.

We highlight this one point of the provisional scope to illustrate that Long Covid should not be artificially separated and siloed to a separate consideration within this module. It is an important central thread to the Inquiry’s understanding of the pandemic’s impact on the healthcare system and we respectfully hope will be properly factored into the Inquiry’s scrutiny of all points under investigation in this module.

Secondly, in respect of the scope itself, we note at paragraph 33 of the CTI’s note, introduces a narrow revised list of 9 areas “of particular interest” in Module 3. We are concerned by this revised list Strikingly, there is no explicit reference to Long Covid in the area identified as being “of particular interest”. We greatly hope that this is not an oversight by the Inquiry and that Long Covid is intended to be read in as included in all aspects of the revised list. We will seek express clarification that that is correct and that Long Covid has not once more been overlooked.

Finally in respect of Covid we are grateful that counsel to the Inquiry will publish a list of issues developed from analysis of the evidence and responses to Rule 9 requests, as has been indicated for Modules 1 and 2. The Long Covid groups welcome this approach and plan to assist the Inquiry in identifying areas of concern for Long Covid.

Disclosure. We are grateful to counsel to the Inquiry’s update on the disclosure method for Module 3 today. We understand and accept the need to avoid duplication of Rule 9 requests. Whether Module 3 team is considering responses to Rule 9 from previous modules, we are unclear how Core Participants who have not been granted status in previous modules will be made aware of those responses, but we respectfully ask will the Inquiry consider disclosure of Rule 9 responses for earlier modules as they relate to Module 3.

Experts and witnesses. In relation to the issue of lay and expert witnesses, we wish to provide three observations. The Inquiry is already alert to the difficulty of instructing experts from previous modules. In the case of Module 3, several of the prominent experts may also be involved in the issues being investigated. They may be called as witnesses of fact and they may have expressed opinions publicly on matters being probed in this module. We respectfully suggest that these difficulties could well be overcome by providing Core Participants with an early opportunity to input on the expert witnesses that have been identified and on the scope of their instructions.

We understand and underscore the importance of early disclosure in this regard for two key reasons. Any objection raised by Core Participants of the experts or to their expertise when reports are already well underway will only serve to delay the Inquiry’s work. We seek to avoid such delay by providing early input in identifying suitable experts.

Similarly, the early disclosure of letters of instruction where work by experts remains at an initial or an early stage will ensure that Core Participants can identify any missing subject matter to be opined upon within the context of the overall report itself. This is, of course, particularly important in respect of the expert on Long Covid.

We respectfully submit that will avoid delay and maximise the meaningful participation of Core Participants.

Our second point in relation to experts concerns the proposed areas of expertise. The Long Covid groups welcome counsel to the Inquiry’s indication this morning that expertise on post Covid sequelae for Long Covid and its recognition will be included. We agree that this is central to the Inquiry’s investigation in this module.

Finally, on the point of lay and expert witnesses, we invite the Inquiry team to hear formal evidence from members of the Long Covid groups. Members of those groups are uniquely placed to provide the expert evidence on how and why patient advocacy led to the public and clinical recognition of Long Covid and the systemic implications this had on long Covid sufferers, key points for investigation in Module 3.

Many members of the Long Covid organisations are also well placed to provide testimony from the dual perspective of being patients and healthcare workers in this pandemic.

Healthcare workers were and continue to be important patient advocates for Long Covid. They are doctors, nurses, physiotherapists and other allied health professionals who have the twin experience of being Long Covid patients as well as frontline workers in the pandemic, or parents or caregivers of a child with Long Covid. Their experience can speak to multiple issues under investigation in this module, such as how adequately the spread of Long Covid was prevented – of Covid-19 was prevented within healthcare settings, their insight in the accessibility of care and treatment for Long Covid on both sides of the wall, and the impact that Long Covid had on the employment of healthcare workers.

We respectfully submit that the evidence of Long Covid groups is highly relevant to a proper assessment of the matters under investigation in Module 3.

The listening exercise and commemoration. In relation to the Listening Exercise, Every Story Matters, the Long Covid groups recognise and support its function as a separate non-legal process for the Inquiry to capture a wide range of experiences. We welcome the Chair’s commitment to providing further clarity and detail on its design and implementation.

The Long Covid groups welcome STI’s recent update that the Inquiry will hear from seldom heard groups and that its staff will be trained on trauma-informed approaches. In this regard specifically we invite the Inquiry team to provide further detail on what reasonable adjustments will be put into place to ensure that people living with disability and the clinically vulnerable are able to participate meaningfully in the exercise, how seldom heard groups will be identified and approached, and what training staff members will be equipped with.

At present the online web form under the “Share your experience” specifically excludes anyone under the age of 18 from providing their perspectives. We reiterate the submissions we made ahead of Module 2 preliminary hearing and urge the Inquiry to consider safe and inclusive ways to incorporate children’s experiences into the Listening Exercise.

The Inquiry has the benefit of Core Participants, including the Long Covid groups, who have a wealth of experience and disability inclusion, working with children and young people and handling trauma survivors, which we consider the Inquiry team are likely to benefit hearing from.

We strongly recommend that the listening exercise is developed in open consultation with the Core Participants. The Long Covid groups continue to offer their assistance in this regard. It is hoped that the Inquiry team will maximise the experience and expertise that Core Participants bring in order to develop an effective and accessible Listening Exercise that captures the full breadth of perspectives.

In relation to the commemoration, the Long Covid groups were pleased to be consulted on this in December ‘22. The Chair’s decision to include video content at the start of each module is welcomed. It is hoped that this will appropriately represent the experience of Long Covid sufferers who remain surviving victims of the pandemic. As with the Listening Exercise, Long Covid groups continue to offer their assistance to progress the commemorative tapestry and video content.

Reasonable adjustments. The Long Covid group raised the topic of reasonable adjustments at the preliminary hearing of Module 2 and are grateful for my Lady’s recognition of her statutory obligation under section 19(2) of the Inquiries Act 2005 to take reasonable steps to ensure that members of the public can follow the proceedings and obtain or view a record of the evidence.

We take this opportunity to respectfully remind my Lady that reasonable adjustments ought to be accommodated for the entire process of the Inquiry, including for Core Participants’ preparation, as well as for the venue proceedings and publication of evidence. The Long Covid groups are concerned about the time-frames Core Participants are given to provide their input. They recognise that the Inquiry is working at pace. However, the Core Participants have only six working days from provision of CTI’s note for Module 3 and the deadline to lodge written submissions in response.

The Long Covid groups represent individuals who were previously fit and healthy but have suffered profound and often disabling changes to their health and to their lives caused by the effects of Long Covid 19. As Long Covid sufferers themselves, the groups found that this time-frame was too tight and offered inadequate time for disabled clients to review written submissions once drafted. This severely impairs their ability to meaningfully contribute and provide input into as Core Participants. It is respectfully requested disabled participants be provided with adequate time to sufficiently review documents and provide instructions in order to properly assist the Inquiry and fulfil their role as Core Participants.

Covid-19 safety measures, last topic.

The Long Covid groups would like to raise one final important point in relation to the Inquiry’s safety measures. The Inquiry team will appreciate that safeguarding attendees’ health, safety and welfare at the Inquiry’s hearing venue is of utmost importance and this naturally extends to adopting measures to minimise the spread of Covid-19 transmission in order to avoid disruption and potential harm to all participants during the hearing process. For this reason, the Long Covid groups have invited the Inquiry to ensure that HEPA filters, adequate ventilation and CO2 monitors are used in all of the Inquiry venues. Studies show that air filtration using HEPA filters and installing CO2 monitors that access levels of ventilation successfully reduce the transmission of airborne pathogens including SARS-CoV-2.

The Long Covid groups continue to recommend strongly that the Inquiry team consider these simple, effective and relatively cost-efficient methods of infection prevention.

These are all the points I wish to raise at this time unless I can assist my Lady any further.

Lady Hallett: No, thank you very much indeed, Mr Metzer. I am very grateful.

As far as making sure that the interests of the groups you represent are properly recognised, and that’s obviously, as you know, one of the reasons I gave the groups Core Participant status, but I’m sure that with your help and the help of your team and with the help of counsel to the Inquiry we can achieve that aim.

Can I just mention one point, you talked about Listening Exercise and children under 18. When we first launched the online form there was a reason why we couldn’t include children under the age of 18 at that time, but I have always said to the team we must capture the experiences of children and we need to get on with it because, from my experience in another life as a judge and a barrister, I know that we need to capture the experience of children before their memories fade, though I suspect that for some of your lay clients who are suffering from Long Covid sadly the memories are still with them.

But we will do our very best to make sure that children are properly recognised too.

Mr Metzer: Thank you very much.

Lady Hallett: Mr Wagner, I think, is next.