He Died Waiting; Learning the lessons – a bereaved mother’s view of mental health services, by Caroline Aldridge, is a ‘must read’ book for anyone with an interest in mental health. Caroline’s book is unusual because she writes as a mother and as a professional with inside knowledge of mental health services. Campaign supporters (service-users, carers, bereaved relatives, and professionals), who have read He Died Waiting, unanimously recommend the book. It’s a compelling story. Caroline brilliantly articulates how people are failed by mental health services, the appalling way that bereaved relatives are treated by ‘the Trust’, and the unethical behaviours of management, commissioning and monitoring bodies, and those with power.
Mental health trusts are vociferous about wanting to hear the lived experiences of service-users and carers. Caroline’s voice is one that they should listen to. Not in a tokenistic, superficial, or manipulative way but with humility and a genuine desire to learn.
We’ve become weary of the ‘learning the lessons’ press releases that NSFT issues. The bereaved relatives, like Caroline, see right through the spin:
“Large organisations send a senior member of staff, who they hope is beautifully fluent in platitudes, to speak to the media. ‘We want to learn the lessons.’ ‘We are committed to learning the lessons.’ ‘There are lessons to be learnt’. Numerous variations of the theme are regurgitated whenever something serious goes wrong. More accurately, it’s a mantra that is repeated whenever an organisation is caught out for a wrongdoing.”
NSFT is officially the worst trust in the country. We have raised numerous acts of ‘wrongdoing’ here without seeing accountability and reparation. We’ve been campaigning for seven years for decent services at NSFT. For seven years we have been waiting for the promised improvements. Countless stories of service-users, carers, bereaved relatives, or staff being treated in the ways described in He Died Waiting. Seven years of trying to get people like Tim the support and treatment they need.
Caroline describes how Tim was ‘never the right kind of ill’ for the services on offer. At NSFT, despite broken promises, there is still no assertive outreach, people wait too long for assessments, those assessments often don’t lead to any treatments, there are not enough beds for people who need them, and those who are ‘not the right kind of ill’ die prematurely. We have reported on death after death that raises the same issues. It’s simply too hard for people to get access to mental health services and the impact is devastating, and sometimes fatal.
“Tim never got beyond the front door of services. Later in my career I would gain insight into why he continually fell through the safety net. When I worked alongside those providing adult mental health services, I would come to understand that the volume of people requiring assessment and support far exceeded capacity. Community services were stretched to breaking point. There were frequently no available beds in inpatient units locally (or even nationally) … Taking the brave step of seeking help, only to be rebuffed by helping services, is profoundly damaging. Tim rarely asked for help but he occasionally accepted that a referral to mental health services could be beneficial. What did the repeated minimisation of his needs, and rejection from support, do to his sense of self-worth? Or his sense of hope? Or to his lifespan?”
Caroline describes a ‘lack of curiosity’ about deaths. The Trust’s internal Serious Case Report (SCR) into Tim’s death determined that there were ‘no recommendations’. We are not surprised. Most SCRs are not worth the paper they are written on. The Trust had much to learn from Tim’s life and death. They also had a golden opportunity to utilise Caroline’s skills which they squandered. We think that Caroline might not be ‘the right kind of service-user/carer’ for an organisation that focusses its energy on defending the status quo. Her values mean that she is too outspoken and not likely to ‘stay on message’. We have seen too many bereaved relatives drawn in with warmth and assurances only to be rejected if they remain sceptical or challenging. The bereaved are not a resource, they are people who have already been profoundly damaged by the lack of services. Any anger or criticism they show is justified. As Caroline says – ‘we should all be outraged by the deaths’. But we see more outrage from leaders if we question whether they deserve their inflated salaries, than we do if service-users die.
Like the majority of those who die, Tim’s death did not prompt a Prevention of Future Death (PFD) report from the Coroner. But there are PFDs that tell almost identical tales of people like Tim. In her book, Caroline raises themes of fragmented services, poor communication, inadequate risk assessments, relapse signatures not being identified and utilised, no continuity of care, and shoddy accountability. These themes come up over and again in the PFDs issued by Norfolk and Suffolk coroners. But nothing seems to change. The PFD issued for Peter Frosdick in 2019 shows that all the issues that led to Tim’s death had still not been addressed. We know, because bereaved relatives tell us, that they find it heart-breaking to see other families go through carbon copy deaths.
Caroline explores the issue of organisations and managers being accountable. She uncovers cronyism and the role of those with the power to influence change at a monitoring and commissioning level.
“It seems to me that, a fundamental problem in improving things, is that organisations never, in reality, seem to learn from their errors. Nothing ever seems to lead to changes and improvements. Across health and social care, numerous reports, reviews, and investigations make a plethora of recommendations that essentially say the same things. The findings are found and re-found. The promises are made and re-made. Only for the same mistakes to be repeated … Too often the leaders are repeatedly pressing the ‘re-wind’ and ‘replay’ buttons on their broken corporate machine (in the mistaken belief they are protecting the organisation’s reputation). They need to press ‘forward’ and play a different song. In my county, they need to press ‘fast forward’ because the situation urgently needs to improve.”
We recognise all the things Caroline exposes in He Died Waiting. We certainly need ‘fast forward’ here. Instead we see inertia – the increased bloating of management structures and more and more non-jobs. The only criticism we can level at Caroline as an author, is that she is too kind. She pulls her punches with ‘the Trust’ and works so hard to be balanced and fair, that she dilutes just how deplorable things are. Caroline calls for ‘values-based leadership’ that is visible and engaged with the community. The surest way to judge the values of a large organisation is not from its glossy brochures or grand gestures but rather from the many small behaviours of its senior leadership. The behaviours described in this book tell a shameful story.
Over the last seven years we have supported numerous bereaved relatives who have shared their experiences of NSFT. We have seen them try and engage positively only to be further damaged by those in highly paid non-jobs who are clinging to their power. We have seen positive responses on Twitter from NSFT about this book, with promises of using it, and working with Caroline, to support learning at the trust. We want to applaud Caroline for her willingness to work constructively with NSFT after all she has experienced. We hope that this time she will not be left feeling traumatised. We will be watching for signs that NSFT have followed through on their promises.
What shines through Caroline’s book is her dignity, generosity, compassion for others, courage, and desire to be part of positive change. Her book is poignant and by design it provokes an emotional response from readers. We really hope that the book is embraced as a means to amplify the voices of those who are saying things are not ‘good enough’. Because they are not.
Tim, was one of the many who have been let down by NSFT. He was one of 139 ‘unexpected deaths’ in 2014. One of the predictable and preventable deaths that were the result of the disastrous ‘radical redesign’ in 2012. Caroline graphically illustrates this on the book cover which is based on a quilt she made from the remains of Tim’s clothes. One heart for each life lost in just one year.
We posted this photo on our Twitter feed in 2017. The photo spoke volumes about why hundreds of us marched through Norwich. When reading He Died Waiting, the full significance was revealed.
R.I.P. Tim and all the others who have died in Norfolk and Suffolk. We won’t forget you.
This is a damning indictment from He Died Waiting:
“Tim died waiting. He died waiting for mental health services. He died waiting for an appointment. Hundreds of others have died waiting for services to improve. People are still dying. And we are still waiting…”
As a campaign we will continue to raise concerns until we see the improvements needed. Our #PledgeForTim is to keep on challenging NSFT until there is concrete evidence that services are safe, effective, compassionate, and well-led.
The book He Died Waiting, is available from www.learningsocialworker.com There is an open invitation to her book launch on 11th February at 5pm. To register use this link: https://virtualopenday.essex.ac.uk/areas-of-interest/social-work-2/he-died-waiting-webinar-11-february-2021
Caroline was interviewed by Woman’s Hour on 8th January. She said that her book was ‘for all the Tims’. You can listen to it on BBC Sounds using this link: https://podcasts.apple.com/gh/podcast/singer-songwriter-holly-humberstone-lockdown-family/id130950322?i=1000504712992 (20 minutes in).
Caroline is speaking briefly at our campaign’s public meeting on 2nd February. To join use this link: