As someone who has lived experience of being diagnosed with schizophrenia (amongst other things) the release of the ‘Schizophrenia’ Commission Report has left me with very mixed feelings. First and foremost, I applaud the hard work of the members of the commission and all those who gave evidence and contributed to it. During the evidence-gathering phase, I was also heartened that the commission really tried to listen to a wide variety of views and experiences. I particularly appreciated their call for people who, like me, are critical of the diagnosis of ‘schizophrenia’.
Basing it on lived experience (both personal and professional) helped ensure that the report itself contains some excellent points that ring true for me. For example, I fully agree that Early Intervention in Psychosis Teams can do excellent work and should be extended rather than diluted or cut. The need to find better ways of equipping young people with the emotional literacy and support networks is hard to argue with.
Whilst the quality of acute services vary, few would suggest that they are the ideal place for someone who is overcome with fear and intense experiences. Despite the best intentions of staff and family members, the process of detainment can be profoundly traumatising. The report highlights poor prescribing practice and the negative consequences of neuroleptic medication. This is worrying, but not surprising. After all, I’m more all of us have met people who are on multiple neuroleptics (alongside anti-depressants, mood stabilisers and benzodiazepines). Years ago, I was in this position.
None of these issues come as a surprise to me. In fact, I’m glad that a commission made up of some very influential people and organisations have highlighted them. Perhaps this report can be used to improve the healthcare system. However, whilst reading it I could not rid myself of a gnawing feeling that it is fundamentally flawed.
In his introduction, Sir Robin Murray says that ‘research has led to an increasing number of effective drugs to choose from and a range of evidence-based psychological treatments. We know much more about ‘what works’ than we used to’. This sounds reasonable, after all – we’re in 2012. Surely the years of research and development in psychopharmaceuticals has resulted in an improvement for people diagnosed with schizophrenia?
Having returned from hearing Robert Whitaker at Soteria Bradford’s conference I no longer have the luxury of this particular belief. Check out the evidence (the evidence not funded by pharmaceutical companies, that is – www.madinamerica.com/source-documents/). Worryingly, it can be argued that outcomes were better prior to the introduction of Chlorpromazine. That is, the percentage of people able to live and work in the community after being diagnosed with ‘schizophrenia’ has decreased since we started treating people with neuroleptics. The once-comforting difference in efficacy between typical and atypical neuroleptics has also been questioned, with research finding very little difference between the two except in terms of side effect profiles.
Later in the report, it states that neuroleptics are the ‘cornerstone of treatment for schizophrenia and psychosis’. It acknowledges some of the negative consequences of taking medication, a degree of uncertainty about its long-term efficacy and that people can, and do, live successfully without medication. However, its recommendations of shared decision making, improving prescribing practice and finding better drugs seem to miss the point. The report seems to shy away from questioning whether medication should be the cornerstone of treatment. With Open Dialogue and other approaches advocating drug free trails and alternatives from the outset, surely there is enough evidence to question the dominance of medication in current treatment.
More worryingly, perhaps, for ISPS, the report’s use of the term ‘evidence-based psychological treatments’ is extremely limited. I agree wholeheartedly that we need greater access to a range of talking therapies for people who struggle with psychosis. Therapy has been a key aspect of my own recovery journey (alongside self help, voluntary sector support and the Hearing Voices Network). However, on closer reading it focuses almost entirely on improving access to CBT. Creative therapies are mentioned as a footnote alongside nutritional supplements and horticulture in terms of not having a strong evidence base but that some people find them helpful in ‘building confidence, keeping busy and keeping well’. Other forms of therapy (including those practiced by many ISPS UK members) are not even mentioned.
The whole report seems to be based on the belief that we understand what ‘schizophrenia’ and ‘psychosis’ are, that we know what is helpful but we just aren’t providing it properly. It talks about dopamine as if it is an uncontested fact rather than a theory open to debate. I would contest each of these assumptions – we don’t yet fully understand the experiences we label as ‘schizophrenia’ or ‘psychosis’ (read the Inquiry into the Schizophrenia Label for more information on this www.schizophreniainquiry.org) and our evidence-based practices have a shaky evidence base at best.
The report states ‘unless properly treated, these psychotic experiences may destroy your hope and ambitions, make other people recoil from you and ultimately cut your life short” (page 4). Having been overwhelmed with voices, visions and distressing beliefs during much of my 20s – I concur. The experiences we label as ‘schizophrenia’ can be devastating – few would argue this. I agree that, with proper support, this doesn’t have to be the case. However, for me this isn’t about treating an illness – it’s about helping someone make sense of their experiences and reclaiming their life.
As someone once diagnosed with ‘schizophrenia’, I learnt to see my experiences as a sign of my illness. I tried to block them out with high doses of medication and practically ran screaming from any well-meaning nurse, psychologist or therapist who wanted to help me explore my experiences in the context of my life story. I, like many, am a survivor of trauma and was already primed to see myself as broken and flawed. I was seen as enduringly and severely ill, and turned down for formal therapy even when I felt ready to try and access it.
My recovery has been a long and painful road, one that required many of the practical elements mentioned in this report. However, it needed something I can barely see in its pages. It needed me to reject the idea of being ‘ill’ and reclaim my sense of being human. It needed a sense of safety, trust and hope. It needed the people around me to be ready to face my narrative unflinchingly, no matter how painful, and to believe fully that I would find a way of making sense of it. Finally, it involved me subjecting the ideas I had been sold as a patient to scrutiny and making an informed choice over whether or not to believe them.
If you can – do read this report. Use the bits of it that will help secure extra funding, highlight important issues and make real improvements to the care and support people receive. However, try to keep a critical eye and look for what’s missing. I’d be interested if some of you will join me in a debate about some of these points on the ISPS UK discussion list. The more we critically engage with these issues, the better chance we have of finding some ways forward.
With warmth and hope
Initially featured in ISPS UK Newsletter
To read the report yourself, see: http://www.schizophreniacommission.org.uk/the-report/
To check out the alternative Inquiry into the Schizophrenia Label, see: http://www.schizophreniainquiry.org