This month’s draft guideline from the health quango NICE on the long-term management of self harm provides a revealing perspective on the NHS’s inadequacies, which go beyond failures in the treatment of individual cases to NICE itself and the basis for its existence.
The draft guideline for consultation, Self-harm: longer term management is available for comment until June 7. It’s a 319-page document, and it has 392 pages of appendices that bring the total page count to 711.
The shorter NICE version of the draft is easier to read, but it leaves out a lot of important background information.
The draft covers all forms of self harm, in children, young people and adults, but specifically excludes harm caused by the use of alcohol or recreational drugs, or “starvation arising from anorexia nervosa”. It seems to include suicide, but this is not always very clear because some of the text differentiates between self harm and suicide.
It is also ambiguous about some other forms of self-harm — for example, purging is never mentioned, and bingeing is mentioned only once in passing. A patient is even quoted as recognizing that alcohol can be used to self-harm (page 57):
…I was conscientiously drinking England dry. Yet another form of self-harm.
The draft does not cover the 48 hours after an act of self harm. That is the subject of a separate guideline from 2004: Self-harm
The very existence of this guideline is suspicious, because self harm is not an illness. Rather, it’s a symptom of various kinds of distress, with some of that distress being the result of various illnesses.
The guideline recognises that self harm is associated with a variety of diagnoses. They all have their own NICE guidelines (page 261):
- borderline personality disorder (NICE clinical guideline 78)
- depression (NICE clinical guideline 90)
- bipolar disorder (NICE clinical guideline 38)
- schizophrenia (NICE clinical guideline 82)
- alcohol misuse (NICE clinical guideline 115)
- drug misuse … (NICE clinical guideline 51 and 52)
The only possible reason for producing this guideline on the long-term management of self-harm must be that treatments for those six conditions are not working. If treatment were working, people who suffer from any of those conditions would have their self-harm managed and eventually eliminated. There would be no need for a separate self-harm guideline.
Of course, that’s just saying what everyone involved with NHS mental health care already knows — NHS treatment is haphazard, even for the easiest of the six to treat, depression.
Closely associated with haphazard treatment, haphazard diagnosis is also widespread. The draft recognizes this to some extent, but it does not go so far as to propose any remedies (page 18):
…nearly one-half of those 18 who present to an emergency department meet criteria for having a personality disorder…However, there are problems with [applying diagnostic criteria] because:
- There is an unhelpful circularity in that self-harm is considered to be one of the defining features of both borderline and histrionic personality disorder.
- The diagnostic label tends to divert attention from helping the person to overcome their problems and can even lead to the person being denied help…
- Some people who self-harm suggest that the label personality disorder can lead to damaging stigmatisation by care workers … Moreover, this stigma may prevent those who self-harm from seeking help…
I could find no recommendation at all relating to the effects of diagnostic labelling, and I discuss the feeble recommendations relating to stigmatisation by care workers in more detail below.
Furthermore, problems with psychiatric diagnoses in the NHS go far beyond the issues identified in this draft. It is common for patients to have a “floating” disagnosis that varies from day to day depending on which healthcare professional they are interacting with, and for diagnoses to migrate from simple illnesses to complex ones over the years as untreated symptoms gradually worsen.
NICE’s purpose is to evaluate all the available research evidence and distil it into a form that clinicians can use. Putting it that way makes it seem that NICE has an important role, and we could not do without it.
Other scientific disciplines, however, do not have the equivalent of NICE. Scientists themselves seem to be able to make sense of research evidence. The existence of NICE lets healthcare scientists off the hook. They do not have to do research that makes sense, because there are quangocrats to make sense of it for them. Putting it this way makes it seem that NICE’s role may be a damaging one, encouraging poor quality and even meaningless research.
In developing the draft guideline, NICE used GRADE evidence profiles to rate the quality of research evidence, only falling back on a less rigorous approach when necessary:
In the absence of appropriately designed, high-quality research…an informal consensus process was adopted.
GRADE profiling uses various criteria to rate the quality of research on a four-point scale (pages 39, 40):
+○○○ VERY LOW
Appendix 17 (parts a and b) documents the actual GRADE ratings. I counted the total number of times each point of the GRADE scale occurred in the appendix:
The vast bulk of the research couldn’t be rated, and no research whatsoever was rated HIGH — none at all. The “absence of appropriately designed, high-quality research” was universal. NICE makes no recommendation that relates to the huge quantity of useless research that it had to plough through, emphasizing the cosy symbiosis between NICE and underperforming healthcare researchers.
On the same day that NICE published the draft, the president of the Royal College of Nursing made a speech to the college’s annual congress in Liverpool in which she admitted publicly that there are cases of poor nursing:
Stories like these send shivers down our spines…not just because of how hard it is to hear about such shocking levels of care, but because each of us knows it’s not an isolated instance, not a ‘one off’ – we’ve sadly seen cases like it before…
Tellingly, the RCN itself did not publish that part of her speech, choosing instead to put a positive spin on it: Claim back nursing, says RCN President
In the NICE draft there are several indications that all is not well in the NHS. The draft includes four personal accounts from people who have self-harmed. In personal account A (page 52):
I have a range of really damaging experiences such as being called a ‘time waster’, or being treated by CPNs as someone who was not willing to engage, and written off as an ‘expected suicide’ by the local crisis intervention team.
In personal account B (page 54):
There were times when, unfortunately, the experience at A&E itself left me feeling worthless.
Personal account C (by the Kent blogger WeirdSid) doesn’t describe any treatment at all for self-harm that began at the age of 15 and continues to this day (page 56):
I had no idea until I was in my mid forties why I really did what I did.
Personal account D includes an account of group ‘CBT’ (page 59):
…I had no relationship or rapport with the chap who was delivering the content, so I found what he was saying did not carry much weight…the atmosphere within the room was tense and agitated – I’m not sure that anyone was learning much.
While there are also stories of good care, it is very clear from these accounts, and also from other research, that good NHS care for the illnesses that result in self-harm is a matter of luck, not something you can expect.
The draft includes a long discussion of many factors identified in the research. Here’s just one example, from the section on carers’ experiences (page 98):
Similar to service users, the majority of the parents felt that services failed to provide their children and their parents with adequate or appropriate support. In particular, the lack of a clear care pathway for 16-18-year olds was highlighted. Akin to service user’s views, carers highlighted the lack of continuity of care and specifically the long duration spent waiting for CAMHS appointments
At the end of the long and often depressing Chapter 4, NICE’s recommendations are feeble (page 114):
Health and social care professionals working with people who self-harm should:
- aim to develop a trusting, supportive and engaging relationship with them
- take account of the stigma and discrimination usually associated with self-harm both in the wider society and the health service
The recommendations continue in similar vein — vaguely worded boxes that are too easily ticked, and that do not relate directly to outcomes for patients.
The draft discusses a variety of treatments, generally losing sight of the need to treat the illness rather than trying to treat the self-harm symptom and leave the patient otherwise ill. Lack of good evidence makes the recommendations vague (and as the vagueness increases, so does the pomposity of the draft’s language). For example, summing up about psychosocial interventions like CBT (page 260):
Based on the clinical review summary, there is some evidence showing clinical benefit of psychological interventions in reducing repetition of self-harm episodes, compared with routine care. However, there is considerable uncertainty and heterogeneity with respect to the population, treatment length and treatment modality and settings, which lowers the quality of the evidence. Interventions in the analysis included cognitive-behavioural, psychodynamic, or problem-solving elements.
In other words, after all this they still aren’t sure that NHS therapy works very well.
The conclusions on drug treatments are, at least, more clearly put (page 275):
There was insufficient evidence to determine whether the provision of pharmacological treatment would reduce the likelihood of repetition of self-harm. No new trials looking at antidepressants or antipsychotics had been identified. Hence, no recommendations could be drawn.
Don’t expect the NHS to treat you, seems to be the message.
It was disappointing to see the old excuse of “limited resources” trotted out yet again (page 21):
Possible reasons for poor services include limited resources, a lack of an evidence base for treatments, and the unpopularity of this group of service users among some clinical staff…
One research study looked at the total cost of NHS and other social resources used by people who presented with self-harm and were offered various treatments like psychotherapy and counselling (page 250):
Resource use items included hospital and community health services, social services, voluntary sector services, community accommodation, criminal justice system and participants’ living expenses and productivity losses.
The total social cost came to around £14,000 per person per year. With the possibility of saving that kind of money, and a proportion of patients currently remaining ill for decades, “lack of resources” makes no sense as an excuse. Ensuring adequate treatment for the underlying mental illnesses would result in huge cost savings, far outweighing the cost of treatment.
But NICE is not saying this. NICE vaguely recommends more of what we have now. Thus NICE is an integral part of the mismanagement of the NHS.
For example, in the previous guideline on self-harm, NICE recommended group psychotherapy, but the evidence for the recommendation was weak, and it has not stood the test of time (page 249):
In the NICE guideline Self-Harm: Short Term Management guideline (NICE, 2004), group psychotherapy was recommended for children and young people based on evidence from a study… However, results from more recent studies did not replicate the clinical effect observed… Group psychotherapy plus routine care did not appear to be effective in reducing the repetition of self harm when compared with routine care alone, amongst adolescents with a history of self-harm.
The deeper problem, which NICE does not recognize, is that there might be a few very skilled group therapists around. (I have never met one, but that’s beside the point — there might be.) The new finding puts them out of work. The old finding created work for inadequate group therapists like the one criticized in personal account D, above.
What’s really needed is for NICE to be broken up so that decisions on matters like these can be made locally. If there happens to be a skilled group therapist in your town, a national quango’s ruling should not invalidate his work just because on average that form of therapy tends to be ineffective.
So this draft guideline illustrates in many ways just how far the NHS has to go to become an adequate health service. While the wider proposals to reform the NHS are on hold, it is a timely reminder of the NHS’s bureaucratic mindset, the shoddy research, the half-baked training, the dim-witted management, the waste of money, the waste of lives.