I have always been interested in the ‘sharp’ end of psychiatry – compulsory admission, treatments like Electroconvulsive Therapy (ECT) and Seclusion. These are practices that service users on the whole resist but psychiatrists defend by saying they are ‘in your best interests’. Often they are backed up by law and the general public seems content to leave it like that. Probably my interests stems from my own experience of such practices but it is more than that: the belief that collectively mental patients don’t know what is good for them. I want to know what service users think of these things and I will explain the work with reference to three sets of projects.
InvoLve: Involuntary treatment
This was a huge study involving 800 people who had been detained and who were interviewed about their detention at three points in time (1 week after admission; three months after and after 1 year. The big question for the project after 1 year was: “looking back, do you think that your compulsory admission was justified?”. More than two thirds thought it was not:
The psychiatrists on the team were very surprised because they thought the patients would think like them – that it was for their own good. They didn’t and various analyses were run to find out more about those who thought positively (not those who thought negatively). Basically those who felt they had been treated well felt happier. Hardly a surprise.
The main study was quantitative but we also ran some focus groups to get a richer picture of people’s experience. The groups were mixed in terms of their judgement after a year but the thing that interested me the most was what we called “playing by the rules”. People behaved as ‘normally’ as they could in order to get discharged. They strategized and learned from each other. Also some said they would have come into the hospital voluntarily and this speaks to policy.
This study included some user researchers but, unfortunately, the numbers were too small to draw any firm conclusions about whether this made a difference to what people said.
Consumers’ Views of Electroconvulsive Therapy
This study was very controversial. The National Institute of Clinical Excellence (NICE) was reviewing its guidelines on ECT. There was the usual systematic review of “efficacy and safety” which concluded ECT both worked and was safe. But someone in the Department of Health wanted to know the views of recipients. We were commissioned to do this, grudgingly.
The method included a pulling together of all papers that looked at ECT in terms of benefit, memory loss and information and consent that we could find. Importantly, 29 studies were from standard ‘high quality’ journals and were written by clinicians. 9 were studies by user groups. We wanted to know if there was a difference between the two types of paper and in terms of reported benefit there certainly was. The highest percentage reported in the clinician papers was 96% whilst the highest in the user papers was 40%. The lowest in the clinician papers was 46% and the lowest in the user papers was 18%. In other words there was no overlap in the percent reporting benefit. The two main empirical researchers (one of them myself) had received shock treatment and so we used our experience to explain the discrepancy.
On the other hand, all the papers that looked at memory loss, clinician and user, agreed it was significant. Up until then, psychiatric bodies had denied that ECT caused memory loss. The difference, then, was not in what people reported but it was in how the authors ‘interpreted’ the finding. By and large, the clinical papers did not discuss the finding whilst the user papers said this vindicated what survivors had been saying all along. Exactly the same pattern was evident with information and consent – consistency of findings but silence on the part of the clinical papers.
What I have said so far comes mainly from survey findings. But there was also a qualitative part to the study where we looked at internet threads. The BMJ paper was very high profile but they refused the qualitative material calling it ‘anecdotal’. This was a dilemma as without the words of people you do not get the full picture. Also the BMJ insisted we use the word ‘patient’. Publication is a minefield for user and survivor research, so the internet part of the study came out in a completely different journal.
Even then we had to use the word ‘consumer’ (see: what’s in a name).
This study had impact. The review was incorporated into the new NICE Guidelines and we gave evidence. The new guidelines said people had to be told the risks, including the risks of memory loss (denied before this). But today, if you look at the Royal College of Psychiatry website, they try to play down the significance of what we did. Still, the number of people receiving ECT has dropped dramatically since 2004. I don’t say this was just because of us!
Service users and nurses views of inpatient care
The team where I worked developed a way of making scales that assessed people’s views of treatments. It started with focus groups, started with the experience of people who had received the treatment. As well as this, we looked at everything that was said in the focus groups. One aspect we looked at was experience of inpatient care and in this case we had nurses too. The service user groups were run by service user researchers and the nurse ones by nurse researchers. What was striking was how the ‘same events’ were perceived differently by the two groups. So if someone got very upset, the nurses saw this as a symptom and resorted to coercive treatment. This was especially so if the patients were Black. But the patients thought anger and upset were entirely justifiable because they were “caged like animals” and “never allowed out”.
Again, there is a well-known lack of interaction between staff and patients on these wards and this was discussed a lot. For the people on the wards, the nurses were uncaring. For the nurses, they were snowed under by paperwork. I think the people on the wards and the nurses talked more openly because they were speaking with people whose experience they shared.
Dialogue and language is a thing of mine.
Finally, we did some work with a User-Led Organisation (ULO) and ran a survey for people to say how they found inpatient care and particularly control and restraint (where you are held down and injected with tranquillising drugs).This was around the same time as the Mental Health Act (UK) was being reviewed in the UK and it fed into this. People were very negative. To which the response is always that only the discontented fill in surveys (why?). The peer review process was even worse this time, I think because most of the authors were not academics. In Epistemology, I talk about ‘epistemic injustice’ and often get the feeling that mainstream academics think we are just not up to it! But working outside academia is important as it is a link to activism and change (see Research and activism):
The sharp end of psychiatry does not affect many people but it is a shadow that is always there. And the people it affects are not randomly selected – more likely to be poor and Black and, actually, male. The general public seem to think doctors must know what they are doing because they are qualified and it is sanctioned by law. I challenge anyone to spend a week in an acute ward and not feel at least uncomfortable and at worst horrified. But values are not supposed to come into science. That is why it is so important that the research be rigorous and stand on its own two feet. And of course it is important to work not just with other survivors but with lawyers and policy makers. The ECT study led on to me becoming co-chair of a NICE Guideline on Adult Care in the NHS that was widely disseminated.
National Collaborating Centre for Mental Health (Great Britain), 2012. Service User Experience in Adult Mental Health: NICE Guidance on Improving the Experience of Care for People Using Adult NHS Mental Health Services:
But of course Guidelines are Guidelines and not law and often you get the feeling that it is the ones who are already convinced that will follow you. And there is always the question of alternatives like crisis houses where people can stay for ‘time out’. But this involves system change and new imaginings. We begin by pushing boundaries.