Photo: scale from Steve Snodgrass flickr photo stream

Reflections on the CVNI conference and the weight of knowledge

I was recently at a two-day meeting of lived-experience experts and service user/survivor researchers in mental health. The event, organised by the Critical Voices Network Ireland was energising, exciting, and full of shared frustration and rage and the current state of care around mental health in the UK and Ireland. Over two days, at University College Cork, we met and talked about the history of the survivor movement, of the urgency of attending to the experiences and perspectives of survivors and service users, of the harm that has been, and continues to be, perpetuated within structures of healthcare. Talks foregrounded the differences to be found within these experiences, the ways that class, gender, race, and sexuality make our experiences particular, and the ways that structures of inequality and oppression reverberate through services and the care that they do (or more significantly, do not) provide.

It was heartening to feel first-hand the strength and brilliance of the movement, and for me, personally, it was wonderful to meet survivor researchers I’ve long admired, as well as to be introduced to many others whose work I know I’ll go on to follow. Yet I also found it difficult, difficult in a way I have become increasingly alive to through a project I’ve been involved with that explores the care available to those who self-harm. This is the difficulty of scale, the difficulty of scope. This is the horror that comes with engaging with an overview of mental healthcare, and the realisation that overview provides, of the sheer breadth of its failure.

There were so many echoes of this work in the CVNI conference, in the presentations given by survivor researchers and lived experience experts, in the discussions that flourished in Q&A sessions, and even in the friendly chats over coffee. There was no way to come away from that space with any doubt that this was a system in crisis. For instance, I heard about people desperately trying to access care for themselves and their loved ones. We all know about horrors of waiting lists of NHS mental health care, such that people in desperate need are waiting not months but years. In such a system it is hardly surprising that it’s possible to attend A&E in terrible crisis, and then leave with little more than a referral to the Samaritans.

At the same time, when people in crisis are able to access care they might be subject to punitive or belittling treatmentor indeed to outright abuse. At times there is no doubt that such treatment is the result of deliberate cruelty, but it is also clear that within a severely underfunded and understaffed system, many professionals are unable to act as they might wish, or to provide the sort of care they might hope to. To so many service users and survivors the recent Channel 4 Dispatches investigation, which revealed serious failures of care, was not surprising in any way, but simply made public what we had long known to be true. And further, brave survivors have found, over and over again, that trying to effect change, even when those efforts are actively invited by healthcare institutions, could be re-traumatising – so often, the expertise of experience is un-valued, is denied credibility, and is denied support.

Certainly, none of this is new or unknown – to me or to anyone else, particularly the brilliant service-user/survivor researchers who have been at the forefront of trying to make change for so long. Yet, for me at least, trying to genuinely understand or even comprehend the sheer scale of the failure of mental healthcare in the UK is jaw-dropping. It leaves me almost physically winded. It is of such a depth and breadth that the recently announced £2 billion extra annual investment in NHS mental health services up to 2023/24, seems like no more than a drop in the ocean of what might actually be needed to provide acceptable care to people struggling with mental illness and mental distress.

For me, to know this is to despair. It is to feel acutely aware of a huge hollow pit of horror, from which I cannot turn away. It is to question where one should even begin, when the scope of what is needed seems so endless. I don’t mean to say that it leaves me feeling stuck or unable to act – not least because it would be impossible to attend an event filled with such vital and brilliant people and perspectives and not feel energised. Moreover, I know that the people who do such wonderful work within and through survivor and user-led organisations and activist groups are also intimately acquainted with this despair. But the time we spend, in our work and in our lives, engaging over and over with these systems that seem too gargantuan to ever change, too rooted in harm to ever improve, too underfunded to ever do more than place band-aids over gaping wounds – it wears down at one, it weighs heavily. I suppose I hoped that, by naming this despair, it might begin to be just a little easier to pick it up, and to begin again tomorrow.