Arriving late at night, exhausted after a long journey, you find your hotel room smells of vomit and is crawling with cockroaches. In the morning you check out early and complain, but the concierge only shrugs and gives you a customer satisfaction questionnaire. Ticking boxes to questions like, “Was your room number easy to read?” and “Did the bath have a plughole?” you realize you have been forced to give the hotel a 95% satisfaction rating, squeezing your complaints on to the one line allowed for “Other remarks” at the bottom.
NICE (the National Institute for Health and Clinical Excellence) is consulting on a draft guideline on Improving the experience of care for people using adult NHS mental health services. Much of the guideline is based on other guidelines for specific conditions. The consultation is not public even though the documents are — only registered stakeholders can submit comments.
The 200-page draft pursues a customer satisfaction questionnaire approach, although of course instead of ‘customer’ it uses the term ‘service user’. It includes the wonderful finding that (p. 166):
…a study that evaluated the presence or absence of a window and the affect on service users’ experiences in hospital suggest that satisfaction is generally achieved when window area occupies 20-30% of the window wall
A telling feature of the draft is that discharge and transfer of care are considered together (Chapter 10). It’s clear that the authors are thinking only of discharge from hospital to subsequent community care, or discharge from community care to some other form of care.
There is little or no mention of discharge from the system altogether. Even the small section on discharge from community care (10.3) emphasizes continuing support and the availability of top-up appointments and re-referral.
It’s as if the entire mental health system has become an asylum in the community, a grim institution that no one ever really leaves, with the hospital ward taking on the role of padded cell for those patients who become too troublesome. This ties in with the widespread belief, a false belief, that mental illness indicates a fundamental weakness in you as a person from which you will never recover, and that the best you can ever hope for is life-long struggle in the care of others.
An encouraging feature of the draft is its use of online sources. However, the source mentioned most frequently is healthtalkonline.org.
If you go there you will not find much of interest. There is a mental health group with 17 members and six topics, only four of which have replies. There is a blogs page with 36 posts, some of which are spam. The site’s main claim to fame seems to be that some TV celebrities have been involved in publicizing it.
Online resources that cater specifically for people with mental health problems tend to over-represent those whose treatment has been ineffective, because those people stay ill for longer and identify themselves more closely with mental illness. People who fall ill, get treatment, and recover are less likely to become members because they see the illness as something unfortunate that happened to them, not as part of who they are.
So the online sources used by NICE are likely to have reinforced the false belief that mental illness is always permanent. Also, it is not clear whether the source material obtained was all spontaneous material from patients, or whether some of it might have been material selected by the sites’ owners to publicize their various causes.
The draft does acknowledge many common problems. For example (p. 41):
Service users expressed wanting to have more time to speak about their problems which were often complex, and not be given pills and sent home.
and (p. 44):
…a barrier to accessing services was due to the prolonged waiting times when being referred to services and the limited resources available…
Waiting times and apparently limited resources are a side-effect of ineffective treatments, of course, because untreated patients get worse and clog the system for years.
There were problems with assessment, too. For example, here’s a description that many people will recognize (p. 58):
O.K. The first interview was just “so tell us what happened” and he wrote it up and said “um hm, um hm” and wrote notes and he didn’t look at me but he was nodding and looking at the other guy. And they looked at each other and exchanged nods. It was very factual like “So what did you take?” and “What happened at the house?” Um, you know I felt like saying “I can understand English, doctor”. It was just very factual. They filled out their little form and that was it.
and (p. 62):
The qualitative evidence and survey both suggest that many service users are not getting sufficient information about the assessment process, about their diagnosis, and about their care plan.
The tick-box approach, which NICE encourages with guidelines like this, is the beginning of treatment failure for many patients finding themselves in a system that does not really treat them as troubled human beings.
Care in the community is criticized too (p. 70):
Service users said they were not able to play an active role in treatment. Some felt treatments were forced upon them and were not listened to when they expressed that certain treatments were not helpful for them. Service users want more responsibility to manage their care
and (p. 76):
Professionals were also viewed as barriers to effective treatment when they did not demonstrate understanding for the service user?s experience and when they forced uninvited ideas upon an individual
For example, here’s a quote from a patient (p. 77):
I would get very frustrated with what I felt was incompetence and ineptitude by my doctors. I did not feel that they were listening to me nor were they willing to make medication changes when my current mix of medications did not seem to be stopping my cycling. I had three doctors within that year, until I found my current doctor, who I am finally comfortable with.
And I liked this quote (p. 78):
I felt my psychiatrist was a very … oh … wet individual. Again, I think because I’d been quite a numerate, factual, organised person, to have someone…talking about feelings and what about this and what about that? And it was…nothing could ever be pin-pointed or…I just found it annoying.
This kind of thing is typical of professionals who are trained for years to interact with books, and then find themselves in a job where they have to deal with people.
The chapter on crisis is surprisingly brief, perhaps because many of the problems that affect people in crisis had already been covered in previous chapters. A theme that will be familiar to many patients is acknowledged here (p. 94):
One study found that service users questioned the legitimacy of the diagnosis of personality disorder as they suffered from other primary, co-morbid problems. However, one participant in another study found it to accurately describe his condition…
…some service users received many diagnoses in the past and were therefore sceptical about the diagnosis and others were unsure whether they were ill or just a troublemaker
The 2009 NICE guideline on borderline personality disorder seems to have made little difference to the general accuracy of this diagnosis, except perhaps to introduce the bogus diagnosis of “borderline traits” in some places — a scam that is not mentioned anywhere in the draft document.
Common emotional disorders like depression and anxiety can get worse if left untreated. The symptoms multiply, and the sufferers become desperate. Anyone who was once diagnosed with a common disorder but received no effective treatment for it at the time is probably right to question the legitimacy of later changes in their diagnosis.
The state of affairs on acute mental health wards makes it an urgent clinical, social and economic problem…most of all it is recognised by service users, many of whom find acute wards untherapeutic and unsafe.
That is the strongest statement I saw in the entire draft (p. 101). A detailed list of contributing factors follows, for example (p. 103):
A key problem noted in hospital care was the characteristics of the professional. Service users felt that there was a lack of rapport with some professionals and felt in some cases that they needed to act in exaggerated ways to get the attention of professionals
and (p. 106):
Some service users felt they were merely being watched while in care rather than receiving any therapy for self-harm
A patient writes (p. 106):
In eight weeks, I very quickly became institutionalised myself. I was scared to come out because I was in this enclosed world where I knew what was going to happen. There were routines, mealtimes, getting up times, medication times, OT [occupational therapy] times. There were routines and I had no responsibilities…I was in a place where I didn’t have to think about anything, and nobody could touch me.
I have just skimmed through some parts of this huge document. As well as the barriers to good care I have quoted, it also lists things that facilitate good care.
It’s recommendations, though, are checklists that don’t mention the cockroaches. Mental health trusts will be able to tick boxes and give themselves high scores, while their patients remain ill, clogging the system.
Lest anyone despair at the bureaucratic numbskullery of the NHS, it should be said that this NICE consultation is hopefully one of the last to get away with a tick-box approach that sidesteps the question of whether people are actually getting better.
Although it may take years to arrive, hopeful new thinking is on the way — the thinking that the outcomes people experience are more important than the NHS’s internal procedures. NICE might have to change or be abolished to make way for the new thinking, but whatever it takes there is at last hope.