Having said that, in those first hearings the Inquiry team have come out with a bang, grabbing headlines and hauling key decision makers over the coals with tough questions about how prepared the country was to deal with a pandemic. You start to get a sense that the Inquiry will get answers, and in so far as the Inquiry is a legal process, it’s certainly inspiring more confidence.
However, I find myself wondering to what extent the Inquiry will meet the other aspirations of those who called for it – what I consider to be its even more important role. That is, will it give people from all walks of life a sense of closure on the dark times of 2020 to 2022. This is still very much up in the air.
And while Baroness Hallett, the Chair of the Inquiry, has stated her commitment to putting inequalities at the heart of her work, there is no doubting that it is the same groups who found themselves facing the worst of it during the pandemic who will need the most support to have their voices heard during the Inquiry process.
The unequal impact
At National Voices, we have been exploring the unequal impact of the COVID-19 pandemic. During a recent workshop with members, supported by The Disrupt Foundation, we explored how communities and groups were affected differently by both the virus itself and the measures brought in to control it.
Our engagement painted a grim picture of the ways in which the pandemic response exacerbated existing, deep-rooted inequalities across the UK and compounded the disadvantages experienced by people from minoritised communities, by disabled people and by people living with long-term conditions. Take, for example, people who are immunocompromised, who were asked to go into isolation for huge periods of time and still feel completely overlooked as control measures have been lifted. Or the use of DNRs (Do Not Resuscitate orders) which were disproportionately applied to people with learning disabilities.
Telling these stories has a value in its own right, but our aim in bringing together this discussion was to gather evidence that might inform the Inquiry in its work. If we are going to help the nation deal with the trauma of the pandemic, then it is vital that this diversity of voices is heard. But the process of sharing this material with the Inquiry has not been straightforward. Like many other organisations and coalitions, we are not Core Participants so we don’t have access to legal representation and support to engage with the Inquiry. So how do we share what we and are members know, and how will it be used?
Show, don’t tell
We have spoken to the Inquiry team on this very point and secured assurances that all evidence will be looked at and assessed by the legal advisers. You can read more about this from the Secretary to the Inquiry in his blog for us here. Where the Inquiry wishes to explore further, it will call organisations to attend Inquiry hearings and give evidence in person.
But this inevitably means that many organisations will not be called, and their evidence will only be considered supplementary. The Inquiry team needs to find ways to show, rather than tell, each of these organisations and the people they represent that the evidence has been appropriately assessed and not just skim read.
The Inquiry team can help this process by being very clear who they want to hear from and when they want to receive it. Like a parliamentary select committee, for example, the process should be fully transparent for all to see what evidence has gone into the process.
An inclusive listening exercise
This same principle applies to the Every Story Matters public listening exercise. We understand over 12,000 people have already shared their stories, and I am encouraged that the Inquiry has provided routes for people to share their experiences in 12 different community languages and that paper copies of the response forms will be distributed for those who struggle with providing feedback digitally.
There will also be a BSL video relay service launching soon. This will be welcomed by those D/deaf people who use BSL, who often found during the pandemic that vital communications about restrictions being imposed or about the rules in healthcare environments were not presented in their language. For example, SignHealth shared a story with us of a D/deaf person in intensive care who was told about their likelihood of dying via a handwritten note, with no opportunity to ask questions or seek clarification because there were no translators available.
But just because the Inquiry has provided more accessible means for people to share their stories, doesn’t mean people from these groups will automatically come forward. We know that many of the communities the Inquiry needs to hear from most have some of the deepest trust issues with official processes. The Inquiry team acknowledge they need to work hard to ensure they are hearing from a diverse range of people and it will be important they update regularly on who is and who isn’t engaging. Where gaps persist, National Voices’ members will be on hand to help reach out – but this activity will need to be resourced.
Getting people to share their stories is only half of the equation. The Inquiry also needs to give the individuals who take part confidence their experiences have fed into the deliberations. The Inquiry has committed to publishing a series of interim reports from the listening exercise, but given the evidence is all gathered anonymously, the Inquiry is going to have to work very hard to keep contributors updated.
This is a big job and needs to be resourced effectively, as it is essential to that point around giving people closure, ensuring they feel heard and that action will be taken based on their experiences. It also helps build confidence that where the Inquiry doesn’t look in detail at a particular issue this at least follows careful consideration.
Of course the Inquiry’s job was never going to be easy, and in many ways the challenges that the whole country – at macro level – faced during the pandemic, are now facing the Inquiry at micro-level.
How can one national pandemic response possibly hope to address the needs of an entire population in all its diversity? Likewise how can one Inquiry – albeit costing millions and lasting years – possibly do justice to the pain felt by the many millions who are bereaved or who were left injured, whether physically, practically, socially, or emotionally, by the pandemic and its ensuing crisis?
We asked our members what they think would make things better. The key lesson they highlighted was that the people who are most affected need to be in the rooms where decisions are being made and are able to participate on an equal basis.
They identified that working through trusted organisations such as community groups can be the most effective way to do co-production; that resourcing inclusion is vital; and that starting from the needs of the most marginalised is likely to lead to outcomes that work for everyone.
So what more can the Inquiry do from here to ensure that vital insights from marginalised communities are gathered in, not just when the Inquiry turns its attention specifically to a module on inequality but right throughout?
First and foremost, the Inquiry needs to continue and step up its work with people with lived experience to define the mechanisms that work for them. Drawing on past experience, these would be likely to include: proactively inviting the insights of marginalised communities rather than expecting them to come to you; building trust by setting clear expectations about how insights will be used; resourcing those who might struggle to contribute; and working through trusted intermediaries.
We know that the Inquiry still has many years to run, so there is still time to get this right. We at National Voices stand ready to help in any way we can.
Jacob joined in May 2023 as Chief Executive of National Voices. He is a committed advocate for working with people accessing health and care services and the wider public to help improve the accessibility and quality of the care they receive. He loves to combine deep qualitative insights with quantitative data to challenge traditional thinking on how to tackle policy challenges. Prior to working for National Voices, Jacob spent almost 10 years helping to build the Healthwatch network. In this time, he led successful nationwide policy influencing campaigns on a huge variety of topics, from maternal mental health services to access to NHS dentistry. He has also worked in local Government and for the British Library.