He Died Waiting: A book with a purpose

In this blog, I shall tell you about my book that I have written in the hope of changing hearts, minds, and practice. I am pretty excited about the prospect of seeing my first book in print. He Died Waiting: Learning the lessons – a bereaved mother’s view of mental health services is based on my experiences as a mother and as a social worker. Inevitably my story is biased. It is my view on events (with some creative changes to protect people's privacy).

The book is centred on my eldest son, Tim. Chatty, clever, quirky, kind, and funny, Tim was a young man who was chaotic and 'beautifully crazy'. He did his best to survive in a society that does not care enough. The support that he had from mental health services was dire. He was never the right kind of ill for the services on offer. Either he was very unwell, and too frightened to accept help, or he was deemed too well to merit support. So, like many other people with mental illness he joined an endless waiting list. He died waiting for an appointment. The mental health trust who were responsible for Tim’s care were my employers when he died. I invited the CEO and Board Chairman to Tim’s funeral. I asked them to use my unique position, as a mental health practitioner with an understanding of the pressures on services and a bereaved parent. I wanted to work with them to ‘learn lessons’ from Tim’s life and death. Instead, a collision of my professional and personal life led to consequences beyond anything I could have imagined.

The emergence of psychosis during Tim’s adolescence, and his life from leaving home into adulthood, was a ‘roller-coaster’ of vibrant, emotional, joyful, sad, and humorous moments. The highs and lows, of poorly managed bipolar disorder, led to an inevitable ‘knock at the door’ and Tim’s death in harrowing circumstances.

Plunged into life without Tim, I began to seek answers. Bereavement compelled me to navigate a bewildering and cruel ‘system’. The actions of powerful individuals and organisations wanting to defend their reputations seemed unbelievable. What happened after Tim died, compounded the trauma of grief.

Curiosity drove me to find out whether I had been spectacularly unlucky or whether the things Tim and I experienced were not as unique as I assumed. I discovered a silent army of bereaved relatives whose loved ones died in similar circumstances to Tim. I found that it is commonplace across the NHS for bereaved relatives to endure emotionally violent processes. This is underpinned by a widespread defensive culture which societal indifference allows to flourish in plain sight. When I realised the scale of the failings, I wondered if Tim's terror of services was based on reality rather than paranoia. All of this was very difficult to accept.

I tried to work with those in influential positions in order to support learning and improvements. Frankly, this achieved nothing. Though with each set-back I became more determined to ‘do something’… even if I didn’t know what I could do.

In 2018, I had an accident that changed my life course. I joined a creative writing group as part of my rehabilitation and Tim’s story flooded onto the page. This became the core of a book that relates to much wider issues. I have not named 'the Trust' because my aim is not to blame them but to prompt people to take a critical look at what is going on in their area. It is not my intention to 'name and shame' or alienate people. What happened to Tim, happens across the nation because the crisis in mental health services seems to escalate with every passing year. Tim was one of 139 people who met an ‘unexpected death’ in my local trust in 2013/14. The pictures of the quilt attached to this blog represent this. The hearts are from the remains of Tim’s clothes. One heart for each person who died, with Tim’s having more detail. 139 deaths in just one year from just one trust. And they are only the people who count in the statistics. There must be thousands of bereaved relatives every year. People that join a peer group no parent wants to be in.

Despite the emotive topics covered in the book, He Died Waiting is a positive narrative about the power of integrity, relationships, compassion, and love. Tim's story illustrates the impact of the current crisis in mental health services and the empty rhetoric of commitments to 'learn lessons' when things go wrong. The book is a plea, for policymakers, organisations, professionals, and the public, to exercise decency, challenge unsafe or unkind practice, support people in distress, and push for improved services.

Writing the book was the first step. It seems I had embarked on something without understanding just how difficult it is to get a book from idea to bookshelves. My motivation to persevere has always been to do what I can to make a difference. However, it takes courage to make myself vulnerable by sharing such a deeply personal story. But Tim died and if I can (even in the tiniest way) make it easier for someone in mental distress to access services, or spare other parents the agony of losing a loved one, then it will be worth it.

So many people helped and encouraged me along the way. Including Sara Ryan (author of Justice for Laughing Boy: Connor Sparrowhawk – a death by indifference) who wrote a stunning foreword. The charity – Mental Health Time for Action – will be hosting a formal launch of the book in February 2021. I am looking forward to working with them and supporting their work. The help I have had to bring this project to fruition reflects that the world is full of generous, wise, kind, and empathic people. I appreciate each and every one of them.

My book is dedicated to:

- The memory of Timothy David - 1983-2014. His whispered life echoes loudly in the hearts of those who loved him. - -Tim’s family and those who walked alongside me as I journeyed through the toughest of times.

- And the silent army of bereaved families who have walked, or will walk, a similar path. My hope is to show them solidarity.

My book: He Died Waiting: Learning the lessons - a bereaved mother's view of mental health services is available via the ‘shop’ on this website. I have also got sets of postcards for sale. These have inspirational or challenging quotes from the book on them. They will be perfect for practice educators across health and social care to use as discussion starters. On the back is a space for people to make a #PledgeForTim – a pledge of actions to nurture and protect the mental health of others. If you email me at caroline.aldridgesw@yahoo.com or DM me on Twitter at @CarolineAldrid5, and tell me how you would use the post cards to promote improved practice or services, I will send you a complimentary pack. I have also created some ‘pledge kits’ for people who are crafty minded in the hope that people will post their pledges on social media using the hashtags -

#HeDiedWaiting and #PledgeForTim. My #PledgeForTim is to speak up for people like him and their families.

Reference:

Aldridge, C. (2020). He died waiting: Learning the lessons – a bereaved mother’s view of mental health services. Norwich. Learning Social Worker Publications. ISBN: 978-1-8382420-0-8