Our challenge as citizens is not to wait patiently until we are given permission to coproduce the future of our healthcare with the NHS, but to dream of possibilities right now.Jane McGrath
We Coproduce is an independent community enterprise that uses co-production to solve complex problems in health and social care. From small beginnings as a group of ambitious patients, carers and frontline staff (we started life as the ‘West London Collaborative’, incubated inside the NHS at West London Mental Health Trust), we hold passionately to our dream: to radically reimagine the future of healthcare and, in doing so, to change the world.
Confronting the issue of outdated power imbalances in the NHS has been at the centre of our vision from day one. We currently work in genuine partnership with the Director of Nursing at West London Mental Health Trust, delivering 9 co-produced projects where issues of power imbalance are central to our conversations. This is a long way from where my story started.
I believe it is impossible to reimagine the future of healthcare without understanding powerlessness. To understand powerlessness from the viewpoint of those who are powerless is to hear the stories of those who scream and are not heard.
Often our personal stories are politely dismissed, described as indulgent, or the storyteller patronised. Our stories can be uncomfortable to hear - but the world must not only be understood from the perspective of the powerful. Nevertheless, experience has taught me to choose carefully when to tell my story.
In 2006, after my son left home I became frozen. I couldn’t leave the house without checking my skin for rashes, I checked everywhere, in public toilets, dressing rooms and empty streets. I made long lists and would check and re-check, researching every thought and passing symbol, every dream, every decision. I was dying, death was everywhere.
My health declined so rapidly that my sister stepped in as my carer. She was shocked at both the care I was receiving and the very unhelpful responses she was receiving from my consultant. With her support, I complained about my lack of care. We did not know it at the time but it was just months before the Trust was to be given a warning about its standards of care.
We later discovered that, just one week after we submitted my complaint, my consultant diagnosed me as having a personality disorder. She decided that it would not be in my interest to tell me or my family about it, so we found it buried in notes. We also found distressing and dangerous inaccuracies. Then – just after I sought a second opinion about the new diagnosis – the consultant’s own clinical notes about me were shredded ‘in error’. Finally, by way of a Subject Access Request I received an email sent to the complaints investigation. My consultant had written:
“Jane can use no help…she is incapable of telling the truth.”
Only two years before I had been teaching at a top London university. Now I was drowning in a Kafka-esque nightmare. How had I morphed into this creature she described? How could one consultant's subjective professional opinion have so much power — defining my character, describing who she believed I was – when my friends and family knew me as someone else? Her words impacted how I would be cared for, my career choices, my ability to emigrate, to get insured, to foster children…my whole future. Yet her diagnosis was subjective; it was not like a blood test, with results that can’t be refuted. I felt that the world had gone mad, not me.
I discharged myself from the service. The second opinion found (as my GP suspected) OCD and severe anxiety. After much pressure the Parliamentary Health Ombudsman supported me to receive a written apology from the Trust and the consultant. I later learnt that a diagnosis of a ‘personality disorder’ is not an unusual response to a patient that rejects coercion or complains about their care. My apology took nearly 3 years.
In mental health settings, our stories somehow transmute into our ‘behaviours’ and symptoms of diagnosis. In this way we can easily be at the centre of our own undoing: to speak freely invites into our lives the risks of incarceration, of being forcibly medicated, of having our children removed.
Mental health experts have a unique status in the UK: legal acts and treatment orders can be enforced against the person who is mentally unwell. The Mental Health Act (currently under review) allows involuntary detainment; the Mental Capacity Act decides if the person can be treated against their will; a Community Treatment Order can remove a person’s liberty if they do not adhere to a treatment prescribed in the community. A patient’s relationship to the consultant is inevitably influenced by the knowledge that they hold these powers. I understood only too well that speaking up can be dangerous and fraught with angst and internal turmoil.
It is worrying also that these powers seem not to see people equally. Amongst the five broad ethnic groups, known rates of detention for the ‘Black or Black British’ group are over four times those of the ‘White’ group. Known rates of Community Treatment Orders for ‘Black or Black British’ are almost nine times the rate for ‘White’.
This power differential is a real issue in how people experiencing mental ill health are involved in meaningful discussions about medication – and this is medication that can have serious side effects, from dramatic weight gain to sexual dysfunction. Yet there is growing evidence that mental health patients fare better when they are actively supported in making choices about their treatment and medication and make decisions for themselves. ‘Shared decision making’ is when the doctor and patient make the decision together; ‘supported decision making’ is when the doctor supports the patient to make their own choice. Sadly, many mental health patients report that they experience neither.
Six years after my awful experience, I was CEO of We Coproduce, promoting co-production at every turn. In an early project we convened a co-production working group, made up of service users, carers and frontline staff, aiming to embed supported decision-making across West London Mental Health Trust. Our group attended an in-house conference on medication hosted by the Trust’s Chief Pharmacist. Some of our group had read academic research papers and best-selling books that contradicted the efficacy of medication they were taking and warned of long-term side effects such as bone density deterioration. As some were having this medication forcibly injected by Community Treatment Order they wanted to raise these concerns – discussions they said they were unable to have with their own consultants.
On the day, the service users complained that the speakers would not answer their questions or had little knowledge of the evidence base they were referring to. They reported being closed and silenced by busy scientific slides and conflicting data.
Rather than become defensive of the feedback, the Chief Pharmacist joined our co-production working group. The group, that also included the Trust’s Recovery Lead and Head of Occupational Therapy, agreed to co-produce the next conference as partners. We would jointly choose who was invited to speak, what evidence was presented, and how questions would be answered. Every decision around the production was made by reaching consensus, including not allowing pharmaceutical companies to sponsor us. Expert knowledge was not endorsed as untouchable but as merely the place to start a conversation. A Question Time format, hosted by Lord Nigel Crisp, allowed academics and professionals with opposing views to share a platform, each expert able to hold the other to account.
The broad range of experts were unsurprisingly unable to agree or find consensus. But the discussions demonstrated that the NHS is operating in a dominant medical model, a paradigm not roundly supported by professionals or people receiving care. Since then, we have co-produced a baseline questionnaire with prescribers and service users, to get a picture of how each group experiences their conversations about choice in medication. We are about to publish the results; there are a lot of conflicting realities. Next, we will launch a co-produced pilot for supported decision-making.
Life-changing decisions, often based on subjective opinion, are often ‘done to’ people when they are in crisis and at their most vulnerable. I could have drawn on any number of examples where our current healthcare system can use power inappropriately and fails, or worse still subjugates, the citizens it is meant to serve. 70 years from its inception, the NHS needs to radically rethink this for the 21st century.
Yet great results are being achieved, both at WLMHT and beyond, when professionals share power with the people they care for, and co-produce together. This is the way forward, and our success as an organisation is testament to this new vision. But we have found that contemporary citizenship, with its blurring of boundaries, fluidity, changing identities and incongruent discourses, butts clumsily with the formal institutions of a hierarchical NHS. Traditional hierarchies and ‘expert power’ are struggling to adapt, and some incumbents are clinging on to power. While many NHS organisations are busy negotiating a new networked relationship with the community, some leaders continue to ‘struggle’ to differentiate this new wave of co-production from traditional (non-threatening) models of involvement.
Our challenge as citizens is not to wait patiently until we are given permission to co-produce the future of our healthcare with the NHS, but to dream of possibilities right now. Our first task as dreamers is to create the networks and connections that bring radical thinkers together. To create new partnerships and newly democratic, leaderless, non-hierarchical spaces. Spaces where decision-making is not dominated by experts or expert consensus, by healthcare academics and policy makers, nor the omnipresent freelance consultant – but by all of us, the people.
Jane is a Mental Health Activist and CEO of We Coproduce (West London Collaborative), a London-based CIC she incubated inside the NHS. She has worked as an account director at a leading public relations company and has also worked as a filmmaker and a lecturer in contemporary communications at the University of Arts, London. She became unwell in 2006 and has spent her time since then trying to reimagine health and social care. In 2012, she won a Winston Churchill Travel Bursary to make a documentary in India about recovery from mental illness from a non-pharmaceutical perspective and in 2014 she became a CLAHRC (Collaboration for Leadership in Applied Health Research) fellow.