Last night I made a pledge... A review of the He Died Waiting book launch.

On the 11th February 2021, the University of Essex Social Work and Social Justice department and the charity, Mental Health Time for Action, co-hosted a launch for my book, He Died Waiting. I was honoured to be supported by inspirational speakers, Professor Sara Ryan (author of Justice for Laughing Boy who wrote the foreword to my book), Caroline Bald (social work lecturer), Rachel Bannister (chair of Mental Health Time for Action), and Claire Skilleter (Practice Education Lead). 136 people, including family and friends, students, practitioners, carers, bereaved relatives, people who need services, MPs, and leaders and academics from across social work and mental health, joined via Zoom. The ‘chat’ function was very busy as listeners responded to the speakers and made pledges to take action. The conversation continued on Twitter and the next day, Rose Matthews (@NortherlyRose) tweeted an eloquent account of her experiences of mental health services and the book launch. She has kindly converted the thread into the following blog:

“Last night I made a pledge...

The crisis in mental health services is no secret. Lives have been lost and ruined. Family and friends left bereft with grief. We’re told repeatedly lessons have been learnt. But have they? It’s time to make ‘good trouble’ about this.

‘Out of sight, out of mind’ or so the saying goes. That’s how people with severe mental illness were dealt with in my childhood. The psychiatric hospital, in its forbidding Victorian building, was somewhere you got ‘put away’. I volunteered there. It was full of misery.

But how are things now? It’s five decades since I first met people suffering terribly because mental health services ignored them, or abused them. With all the advances in our understanding of mental health surely things are very different these days? I wish I could say so.

The commitment I made is a #PledgeForTim. It’s also a pledge for Connor, Zoe, Becky... so many more. Tim died waiting because he didn’t ‘fit’ services. As his mum said, people like Tim with ‘complex needs’ are often called ‘difficult to engage’, when it’s services that are.

It’s not just mental health services that are inflicting terrible harm by neglecting and abusing people. It’s all the other agencies too, housing, DWP, primary care, police.

This blog is about what needs to change, based on my own and other people’s experiences.

Part of the problem with mental health services is that we only really find out what they’re like when we try to use them, or someone close to us does. Some good people work in mental health, and some people get a good mental health service.

But this isn’t always the case.

If anyone should have been able to navigate mental health services I should have.

I’d volunteered in them, worked in them, researched them, lectured on them.

But when I needed support that went beyond what my GP and family and friends could provide I was terribly let down.

The first problem I encountered was that I didn’t ‘fit’ the service. In the summer of 2018 I had referred myself for autism assessment and I was in crisis. IAPT (Improving Access to Pyschological Therapies) had little experience of working with autistic people and communicating with them was confusing and distressing.

This was my first experience of being spoken to harshly and without any empathy or compassion. I was annoying because I wouldn’t say what they wanted me to. What value does a risk assessment have if it isn’t based on truth?

Deemed ‘too complex’ I was passed on to the CMHT (Community Mental Health Team). The gateway process gave me hope. I was seen by someone who understood #trauma and whose partner was trained in EMDR (Eye Movement, Desensitisation and Reprocessing). I really believed I was on the point of getting the kind of specialist help I needed. But from then on things started going terribly wrong

Each time I was seen by a Psychology Assistant my distress increased. I dreaded going. The service was described as ‘trauma informed’, but clearly wasn’t. Imagine going to hospital with a broken leg, and having someone jump on it, then give you a paracetamol for the pain.

My partner came with me and he was horrified by what happened. No reference to previous meetings, no structure or purpose. I’d assumed I was being assessed, but we were told I actually had a formulation and a care plan. I had never even seen these, so we asked for copies.

When I read the formulation and care plan I was acutely distressed. Not only had they muddled up details of my life, so it didn’t even seem to relate to me, EUPD (Emotionally Unstable Personality Disorder) had been added, when my only diagnosis was autism. And the formulation actually said “no evidence of trauma”.

I sat in the car clutching a piece paper telling me what I’d shared with the CMHT had been disregarded. I had given them a summary of the significant traumatic experiences I’d experienced in adult life. I hadn’t even kept a copy of this, it was far too painful to look at.

I knew the implications of being labelled with EUPD. People with ‘Personality Disorder’ are treated inhumanely and discriminated against. ‘Personality Disorder’ is no longer supposed to be a diagnosis of exclusion, but it is. It’s a very sticky label, and hard to remove.

That day I came close to suicide, not in spite of the best efforts of services, but because they had let me down. When my partner complained about the formulation he was told the EUPD diagnosis was a “mistake”. It happened when my notes were typed over someone else’s.

I could have died

....because of lack of empathy

....because of negligence

....because I didn’t quite fit

....because I wasn’t involved

...because trauma was ignored

...because of short-cuts

People die like this all the time.

I thought a lot about the person whose record was over-typed to create my record.

Did they actually have EUPD or were they autistic like me? It’s so dangerous when mental health services fail to understand the myriad of ways in which people can be autistic.

Last night I attended the Zoom launch of Caroline Aldridge’s book ‘He Died Waiting’, about her son Tim. I was rooted to the spot as Caroline and Sara Ryan shared the most painful and personal memories about their beloved sons, who were failed, and who died.

Contact with mental health services reduces our vibrant life stories to case notes.

Tim and Connor were loved and loving characterful young men. Tim wore a top hat and provided lots of support to his friends. Connor was known as Laughing Boy, and made his sister feel safe. We heard from Rachel whose daughter’s life was saved by a stroke of luck. She spoke to a commissioner who believed her and intervened. As the mother of adult children these accounts affected me deeply.

We can feel immense sorrow but we should also be angry and do something.

We need a warrior spirit to take this on. And we have to think carefully about how to make a difference. I stopped short of making a formal complaint because services were already so overstretched. Instead I gave commissioners a detailed account of what had happened to me.

One thing’s for sure, we’ve had enough platitudes. Being told we need to be patient, change is coming, it’s incremental. It says something about the state of things that I’d have more confidence in Panorama uncovering issues than the CQC. Lessons still haven’t been learnt.

My local mental health Trust is having a ‘Big Conversation’. I’m invited to let them know my thoughts on draft plans for the next 3 years: “are we focusing on the right things or is anything missing?” But even with my professional background what follows needs a lot of deciphering.

It’s easy to make claims about co-production; this should have been the basis for my formulation and care plan. I won’t give up on trying to make a difference, but I won’t waste time on processes that are flawed. It’s meaningful involvement or no involvement from now on.

Yesterday Caroline said she wished she’d been less meek and made more noise. But parents who are ‘demanding’ tend to be seen as troublemakers and disregarded anyway. They literally can’t win, and yet they’re often left burdened with guilt, as well as with grief.

I want to mention the work done by George Julian and Inquest to focus attention on so many lost lives. The coronial process could easily result in preventable deaths being out of sight and out of mind. George’s live tweeting means we can’t ignore what’s going on.

The way people with learning disabilities, autism, or complex mental health issues are treated shows that our lives are valued less than other people’s. The level of neglect sometimes suggests we’re seen as worthless.

What’s missing? they ask.

Compassion.

Equality.

Justice.

Love.

A sense of humanity that includes everyone, no matter how divergent or ‘complex’, should be at the heart of mental health services. Where this is missing we risk being excluded, diminished, or demeaned if we seek help. In the worst of circumstances we may not even survive.

Educating the next generations of clinicians and social workers is vital, but they won’t survive immersion in toxic cultures. We need honesty from organisations where poor care and neglect have become systemic and endemic. Instead we get gaslighted with management speak.

On our side we have passion, persistence and a common purpose.

Here are some Twitter accounts you might want to follow:

@NortherlyRose (my own)

@waiting_he

@sarasiobhan

@GeorgeJulian

@claire_skill50

@MelanieLeahy

@lovebillybragg

@CarolineJBald

@INQUEST_ORG

@CarolineAldrid5

@MHtimeforAction

Rose Matthews“

My thanks to Rose for adding to the weight of evidence about the crisis in mental health services. My hope is that He Died Waiting will be used to prompt learning and positive change. This will only happen if we collaborate and share our stories. A link to a recording of the book launch will be available soon.