We need a user-led and informed debate about how best to respond to people who self-harm
Self-harm is a hot topic this year, with the publication of the findings of the National Inquiry into Self-harm among Young People1 and the debate on ‘Safe self-harm: is it possible?’ at the Royal College of Nursing annual congress. Harm minimisation is a subject close to my heart. I have written about it previously in MHT,2 and it is a concept that survivor activists have promoted for many years, among themselves and in the training and education of healthcare workers.
The RCN debate, initiated by its mental health nursing forum, was heartening in that nurses were speaking out about issues that survivor activists have been saying for a very long time: that prohibition, trying to stop people from self-harming by any means, is not an effective strategy as it strips them of control, increases risks, and is like compressing a spring. My respect went to the student nurse with first hand experience of self-harm who had the immense courage to speak out publicly during the debate. That’s not easy, given how health care workers, especially nurses, can face discrimination and little support in the workplace if they have any known history of self-harm.
A friend, a nurse, recently told me about a colleague who became depressed, self-harmed and then killed herself. Her colleague’s name is no longer mentioned where she works. As my friend said: ‘If we can’t support each other, what hope do service users have?’ Likewise, nurses and students still have difficulties in relation to occupational health or fears about their job if they self-harm, so it’s driven underground.
During the RCN debate I heard for the first time nurses referring to the ‘therapeutic need’ to self-harm as a way of dealing with unbearable distress, and how punitive responses from services re-traumatised people. A prison nurse made the point that nurses who use harm minimisation create an opportunity for nurses and service users to build a relationship; that the issue is what is best for the patient, not what makes the nurse feel more comfortable.
I heard others acknowledging that self-harm is a continuum along which we are all situated at different points; that a consistent non-judgmental response is needed, and that nurses need support, training and professional endorsement to adopt harm minimisation in their work. Again, these are points survivor activists have been making for years.
It was good to see diagnosis mentioned: how those who are labeled ‘personality disordered’ get an especially raw deal, or are banned from services. Likewise that Accident & Emergency can be the first point at which someone who self-harms can be identified and offered help. An A&E nurse spoke of how services can reinforce the shame felt by people presenting with self-harm and that harm minimisation did not undermine prevention or psychological work.
The RCN has been asked to take this debate further. I hope they do and I also hope to see the mental health nursing forum submit a proposal next year – for borderline personality disorder to be removed as a diagnostic category.
The RCN debate was a step forward but I have few concerns.
The NICE self-harm guidelines3 failed to address crucial issues that resurfaced during the RCN congress debate. Staff support, training, and underpinning values and philosophy are three key neglected areas for which I have been arguing for many years. The implementation of the NICE guidance is not going to address these issues in a meaningful way; A&E departments won’t be having rolling training programmes for their staff. Before I resigned from the self-harm guideline development group with my fellow user representatitive,4 we could not get NICE to consider assessment tools and diagnosis.
Why are these important? Because, as one RCN nurse rightly pointed out, those who are saddled with a borderline personality disorder tag are subject to the worst excesses of psychiatric discrimination because services are led by diagnosis, not needs. Assessment tools, diagnosis and discrimination are intimately linked when you look at psychiatric assessment proforma. Guidelines can include only looking for violence, ‘responsibility for actions’ and child abuse within the personality disorder category.
Romme and Escher found that the onset of hearing voices is often related to traumatic life experiences, of which child abuse is of course one.5 Yet too often a history of abuse is not addressed in people with a diagnosis of ‘psychosis’. Medication is made the primary issue. Conversely, if a history of child abuse is assumed in all patients presenting with self-harm this can result in very casual or intrusive responses. I remember a duty psychiatrist in A&E, whom I had never met before, saying: ‘Most people who self-harm have been abused. I can arrange for you to talk to someone. If you don’t the A&E staff will see no point.’ He then walked away and I didn’t have the chance to reply: ‘But I haven’t been abused, that’s not an issue for me.’ Likewise I wince when I hear of people who do have experience of abuse being asked to describe their experiences in intimate detail to a complete stranger at the drop of a hat. Assumptions are not helpful to anyone and lead to sloppy, misinformed practice.
As for responsibility for actions, I would argue that this is not a black and white issue located in a single diagnosis. When my voices have changed my skin to appear as snakeskin to me, I believe I am responsible for removing it. It takes control to spend two hours with a surgical blade and artery clips removing my skin. I take full responsibility for my actions: that’s why the burden of guilt is very heavy on my shoulders when I seek medical repair. Yet the person deemed to have a borderline personality disorder or dissociative experiences might actually be far less responsible for their actions than me. Some individuals can experience high levels of ‘dissociation’ or experience another person inside them harming their body. There can be little awareness of harming during these periods. I feel those individuals have far less responsibility for their actions than me.
There is no clear evidence to support any specific clinical intervention for self-harm, be it pharmacological or psychological. Although you wouldn’t think this sometimes. One doctor in a secure unit might have all the women who self-harm on clozapine and cite great success. Hey presto! They don’t harm anymore! Could that be, by any chance, to do with the fact that they have gained several stone in weight with the medication and don’t have the energy to get out of their chairs let alone harm themselves? Then there are the dialectical behaviour therapy evangelists, who use this with people who self-harm mostly on the say-so of Marsha Linehan, its ‘inventor’.6 If this is the only psychological support on offer, it places service users in a precarious position. It has to ‘work’ if there’s no alternative. And if it ‘works’ (however that’s defined) it’s down to the wonderful intervention, but if it fails – or the user thinks it’s a load of crap – then that’s because the user is either too stupid to grasp it, untreatable, non-compliant or just plain difficult.
CBT and DBT are often hailed by service providers as the treatment of choice for service users, but this can rule out anything else as services fall into the trap of offering one intervention to the exclusion of all else. I don’t want to see harm minimisation being viewed as a panacea, like behavioural techniques are. It’s one part of the picture – an important part but it cannot be forced on anyone, and it should always be offered with support, as defined by the service user. Service users have historically been put on ‘contracts’ to not self-harm. I equally wouldn’t want to see people ‘contracted’ to use harm-minimisation.
When my colleague user representative and I resigned from the NICE guideline group, we forced them to use bits of our earlier work and to look at survivor materials; it became politic for them to do so. However so many crucial issues did not get a look in. If user involvement had been welcomed and properly thought out, it could have been a more useful document.
After the publication of the guideline some doctors and psychiatrists posted messages on doctors.net with highly venomous views about people who self-harm, including one consultant who suggested that we be charged £50 for each attendance to A&E and for this to also be directly deductable from state benefits. I’ve been totting up how much I would have if I’d been given £50 for each time in the last 23 years I’ve experienced poor treatment in response to my self-harm. I would have had enough for a world cruise.
So we have two problems here. First that there remains significant discrimination against people who self-harm, including those who work within the health service, which we need to address. Second, those of us with the lived experience need to be involved in a real and meaningful way in changing how self-harm is perceived and treated in NHS services. Opportunities have been squandered and we can’t afford to waste anymore, which brings me back to the harm minimisation debate.
When harm minimisation was initially reported by the RCN in the context of the self-harm debate, it was not done competently, in my view. It was described as a ‘new’ approach, which it certainly is not, with no acknowledgement of the survivor work in this area, without which the RCN would not even have been having the debate. Nurses are now saying what we said years ago. And there are nurses who have been quietly practising harm minimisation since the 1980s.
One aspect of the reporting really concerned me. This was the suggestion that harm minimisation is about the nurse giving the service user clean razor blades and then sitting by and watching them injure. This is not my understanding of harm minimisation. Although there might be certain extreme circumstances where the giving of a blade might be preferable, this would be right at the very bottom of my list. This, for me is what harm minimisation is about:
*accepting and respecting the need to injure in order to survive unbearable distress
*staff not removing implements or searching people’s bodies or belongings for implements
*users having access to a sharps box for voluntary handing over of implements if they choose to, without any fuss
*basic principles being imparted but not forced on anyone – harm minimisation won’t be suitable for all
*information given on basic anatomy and physiology, first aid, wound care, dressings, preventing and recognising infection, safer ways of harming, limiting the damage, scar minimisation and practical and psychological tools for living with scars
*an addition to supportive care, and not a substitute for exploring the meaning and function of self-harm for the individual, additional coping strategies and specific psychosocial work.
In saying that, for some people their only point of contact with services is A&E because their experience of psychiatric services has been so negative. Therefore harm minimisation might be the only strategy they feel able to accept.
Nurses remaining with a person while they injure is not on. I could not watch a person self-harm. I have waited outside a room and offered support afterwards, but to remain during – no. It’s unreasonable and unrealistic. And what would be the purpose anyway? If it’s about safety, at what point would they intervene? When is ‘enough’ enough?
The fact that some nurses believe this to be part of harm-minimisation is a fundamental misunderstanding of self-harm. Self-harm is a deeply private act. People will go to great lengths to conceal their self-harm, often for years. It is something people do to themselves, for themselves; it isn’t for an audience. Watching self-harm feels much the same to me as when health professionals request photographs of wounds ‘for the records’, or demand to see bodily scars with no explanation, or don’t afford bodily privacy during surgical repair. It’s voyeurism verging on medical pornography and nursing magazines have not helped in this respect by persisting with inset photos of a lacerated arm to illustrate articles on the subject.
Nothing can be assumed. What we want is for mental health services to start offering something we actually want. We want to be asked: ‘What's the best way we can respond to you when you feel like harming yourself or after?’ Those of us who practise harm minimisation want the right still to have their wounds attended to by others if they don't feel able to. What must not happen is that harm-minimisation becomes branded or turned into a ‘programme’, as has happened with recovery
In making harm-minimisation 'official' we must get it right so that it isn't practised badly; ‘OK dear, here’s your first aid kit, byee…’ – without the health professional ever having to examine their own attitudes and stance in relation to self-harm.
If we are going to reframe services for people who self-harm, accepting, respecting it and not prohibiting it is a good start. Planning for policy and effective implementation will mean we need to work in partnership – experts by experience with experts by profession. The involvement of service users in the reframing of services, of developing new approaches and guidelines has a very patchy record. This offers us a great opportunity to look beyond behavioural approaches and give power back to service users.
Survivors have the lived experience and I also want to see more user and self-harm groups as well as individual activists get more involved in assisting mental health services to evolve. Groups need to get out of the comfort zone of self-help (vital as that is) and engage with the politics of self-harm too. Harm minimisation is something users/survivors have worked with for many years. Many of us have clear ideas about how to take this forward. We can start to shift services towards a different approach to self-harm.
A webcam of the self-harm debate at RCN Congress, 23-27 April 2006 is available at www.rcn.org.uk/news/congress/2006
Louise Pembroke is organising the first ever harm minimisation conference specifically for healthcare workers who want to learn about the approach. The conference will be in London on 24 November. Further details can be obtained from Pavilion Publishing at www.pavpub.com/pavpub/conferences/index.asp
1 Mental Health Foundation/Camelot Foundation. Truth hurts: report of the national inquiry into self-harm among young people. London: Mental Health Foundation/Camelot Foundation, 2006.
2 Pembroke L. Limiting the damage. Mental Health Today 2006; April: 27-30.
3 NICE. Self-harm: the short-term physical and psychological management and secondary prevention of self-harm in primary and secondary care. London: NICE, 2004.
4 Smith A, Pembroke L. Diatribe. Mental Health Today 2005; June: 35.
5 Romme M, Escher S. Accepting voices. London: MIND publications, 1994.
6 Linehan M. Skills training manual for treating borderline personality disorder. New York, Guilford Press, 1993.