26 April 2023

By Will Lewallen

On the May 19th 2022, just over six months after the death of my beloved teenage brother Spencer, my Mum and I travelled to Kings Cross to attend INQUEST’s ‘Mental Health, Learning Disability and Autism Family Consultation Day’. The purpose of the day being to amplify the voices of families like ours, and to ensure relatives can contribute meaningfully to policy changes. Still reeling from discovering that neglect had played a part in Spencer’s death at a residential care home, we arrived overwhelmed and uninformed. The majority of the other relatives attending the day were much further down the line than us, most had already completed the lengthy and draining inquest process. Despite this, we arrived eager to learn, well aware from years of fighting local authorities that in this game, knowledge is power.

Throughout the day people spoke openly and candidly about their experiences, all of which were incredibly harrowing in their own ways. Those of us attending shared common ground along a few dimensions; anger, grief or simply being around people who understand such ineffable ordeals. However, above all, what united all of us together in that room was the desire to ensure that further families do not have to endure what we are going through.

The main mechanism through which bereaved families seek to enact this change is through Prevention of Future Death Reports. These are issued by a coroner under Regulation 28 when he or she believes certain recommendations will help mitigate future deaths. Whilst the coroner has a statutory duty to create a report when they feel that future deaths can be mitigated, this is only the case if the failings which led to the death were deemed to be systemic or likely to be repeated. Many families did not receive such reports, the deaths were deemed to be the result of individual failings and so did not merit the creation of PFDs. And yet, in most of the cases, the individuals deemed accountable were not prosecuted due to the unreasonably high threshold that must be reached for criminal charges such as manslaughter or neglect. Callous gaps in our legal system such as these hamper too many families’ search for justice and accountability.

Despite many of the relatives’ frustration at the processes they were unbelievably kind in discussing their experiences. They shared many helpful tips which my mum and I were keen to absorb, desperately trying to numb our grief with rules and regulations. On the other hand, attendees also warned us of the realities of facing legal teams: bullying defence lawyers who will target the parents of the bereaved in an attempt to exonerate their client.

After a day working in smaller groups, we came back together where the INQUEST staff shared a summary of our findings. The groups came to similar conclusions. Many felt they were left in the dark over the days and weeks following their bereavement or, on the contrary, were bombarded with an overflow of information at a time they were simply not able to process it. Finally, we all agreed that the voices of the relatives left behind need to be listened to in a meaningful way. We were thanked for our time and candour by those running the day and informed we would be notified once their report had been completed. They hoped we had managed to find some solidarity in the experience.

As I sat down on the train to return to university, I was unsure of how to feel. Torn between replaying all the obstacles to justice I had heard about over the course of the day and tuning into the beauty of being in a room with people who really care. Like a good child of the 21st century, when at a loss as to what to do, I reflexively opened Twitter and scrolled through my feed. I quickly came across an article announcing a government response to the first phase of the Grenfell Inquiry. Phase one had given rise to 46 evidence-based recommendations designed to save lives. One of these being to make it a legal requirement for owners and managers of high-rise residential properties to prepare personal emergency evacuation plans (PEEPs) for disabled residents. Despite having previously promised to implement all recommendations from phase 1, “in principle”, on May 18th the Prime Minister at the time, Boris Johnson, announced his government would not implement this recommendation. The Home Office announced such a law is not “practical” and costs too much; seemingly the cost of these people’s lives violated Mr Johnsons ‘principles.’ This tore through my heart and seemed to be the final nail in the coffin of despair. If the government ignored recommendations arising from one of the biggest preventable disasters in recent national history, what hope do we have?

Despite all these very real causes for pessimism, as I closed Twitter after reading the Grenfell news, I realised I still felt better than I did before the start of INQUEST’s day. This is because solidarity, understood as a consciousness of shared interests, is truly joyful. All the staff present that day from Deborah Coles, the Director, to all the caseworkers and everybody in between embody these shared interests. They recognize and believe in their heart of hearts that our struggles are their struggles. Yet, most importantly, they convinced me that they truly care. The effect this has on one’s soul during such dark times is indescribable. Two people, like a flint and steel, can light up the darkest of rooms when they recognise one another’s pain as their own.

When I say solidarity is joyful, I’m using ‘joyful’ in a technical sense. Barauch Spinoza, the 17th century Dutch philosopher, defined joy as the increase of an individual or collective’s capacity to act in the world. From our small working groups that day, to INQUEST as a whole and beyond that to its extended network of partner organisations, joy is embodied all the way through. Working together we can, and will, move closer to INQUEST’s three central campaigning goals: provision of non-means tested public funding for bereaved families if Article 2 is engaged, a statutory duty of candour and a national oversight mechanism to ensure the expeditious implementation of changes arising from Prevention of Future Death reports. Working in solidarity increases our capacities to affect the world and this, in turn, is joyful.

Following the Family Consultation Day, INQUEST have now published a report highlighting the persistent challenges bereaved families are facing following the death of their loved one in mental health services. You can find the report here.