General

1. The area covered by these guidelines is vast, from highly technical medical evidence for the management of wounds and self-poisoning, risk and needs assessments, to the difficult and complex ethical issues raised by self-harm. Inevitably, perhaps, the emphasis is on technology, and the guidelines really fail to do justice to the ethical dilemmas posed by self-harm. Service users who self-harm repeatedly point out the unsatisfactory and damaging nature of their encounters with health professionals, and although some of this narrative evidence is referenced in the guidelines, the recommendations really fail to address the issues raised, particularly in terms of the need for staff training.

Ensuring that clinical practice is based in the best available evidence is of course important, but the balance in these guidelines is weighted so much to technological evidence that is difficult to see that they will have any effect at all on the negative experiences of service users.

2. As a result of the technological emphasis, our view is that the guidelines fail to acknowledge the limitations of the biopsychosocial model in responding to self-harm. If the training of professional staff attached greater emphasis to understanding and appreciating the social contexts in which self-harm takes place, we believe that this would make an important contribution to improving the treatment of this group of people. For example, there is much evidence linking suicide with unemployment. Ultimately, political and socio-economic factors have a far greater impact on suicide and suicide prevention, and there are limits to what we might expect psychiatry and related disciplines to be able to achieve. There is no sense that the guideline development group has really engaged with these issues.

3. We believe that the highly technical nature of much of the evidence for dealing with self-poisoning and wound management does not sit comfortably alongside complex ethical exegeses in the first 6 sections of the draft guidelines. For this reason we would argue that the two should have been be separated and handled in different ways right at the outset. It is too late to do anything about this at now, but we believe that it would be useful to separate the two at this stage, and have two differently constituted groups draw up the (separate) final guidelines (technical and ethical). The latter should draw heavily on the experiences of service users.

This issue is crucially important given the resignation of the two experts by experience from the guidelines groups. We have been copied correspondence relating to this, and are aware that negative professional attitudes in the guidelines group, coupled with a tendency to prioritise and over-value technical evidence ahead of service user experiences, were primarily responsible for the decision of the two service users to resign. If some professional members of the guideline group are unable to demonstrate respectful attitudes to service users who self-harm, this does not bode well for the ethical nature of the guidelines.

Agree. Vast!

We disagree: the guideline strongly emphasises the experience of care and the problems faced by service users re: staff attitudes. More so now it has been revised. Your comments have been helpful in this regard.

We disagree. We have clearly stated that self-harm is not an illness, that is expression of distress, that is linked to childhood abuse, social disadvantages etc etc. Your comments have helped increase this emphasis. Thank you.

Please revisit our arguments for how we have approached self-harm without assuming that ANY form of self-harm can be reduced either to an illness or to a specific set of experiences. People are far more individual than that, in our view.

I am sorry you feel this way. The experience of this (and other) guideline groups is that the group has to deal with the real problems in the relationships between service users and professionals, which in mental health are substantial. We also have to address the way society views service users (and mental health workers). The effect of the two service users leaving was highly significant. Moreover, we worked with a good number of service users at all stages, including in focus groups and in early comments on drafts etc etc.

2.3

We believe it is particularly important to stress the extent to which some acts of self-harm are to be understood as acts of self-preservation, or means of coping with intense distress. We believe that many professionals, including psychiatrists, do not fully understand this. However, it is likely that the emphasis attached to diagnoses, especially contentious categories such as ‘borderline personality disorder’, and risk assessments, shift our attention away from understanding the potential meanings of self-harm.

An important consequence of this view of is that professional staff should respond positively to those people who self harm in assisting them and working collaboratively with them in finding safer ways of self-harming. For example, we believe that the provision of information about safer ways of self-harming, the provision of dressing packs, information about wound care, would go a long way to helping those who self harm feel more in control. The guidelines make no reference to such provision, and in our view this is a serious omission.

We agree. A number of these points are already addressed in different parts of the guideline. However, we hope the numerous amendments to the guideline will reflect this rather better .

2.6

This section highlights a fundamental problem with professional values. Section 2.6.1 considers the role of socioeconomic factors and life events. In other words, it highlights the importance of understanding self-harm within the personal contexts of individual patients. Section 2.6.2 then outlines links between self-harm and mental disorder. This may have some limited utility for epidemiological purposes, but it has two disadvantages. First it decontextualises suffering and renders it meaningless against the person’s life story (Thomas et al, 1996; Bracken & Thomas, 2001). Second, many service users reject the notion that their distress is to be accounted for in terms of mental disorder (Faulkner & Layzell, 2001). In fairness, 2.6.2 makes passing reference to some aspects of these problems.

We have amended part of the text to reflect the problems you have drawn attention to. Added:

It is important to note that socio-economic factors, such as unemployment and poverty, childhood experiences of abuse, and experiences of domestic violence are all associated with a wide range of mental disorders, as well as self-harm. How these experiences and factors interact remains uncertain.

2.7.1

There are qualitative studies of self-harm in young Asian women that draw attention to the complex issues underpinning self-harm in this group (Marshall & Yazdani, 1999; Bhardwaj, 2001). . It is surprising that this work is not referred to, particularly in the light of the Government’s diversity and equality policy in mental health.

We are unable to locate the Bhardwaj 2001 study (either as a paper or a book). From the abstract, the Marshall paper appears to focus on reasons for self-harm rather than user experiences of services. We have requested the paper through inter-library loan, but it has not yet arrived.

2.7.5

There is no reference to the serious problem of women in High Secure Hospitals who self-harm (see for example Wilkins & Warner, 2001). This is a surprising oversight.

Amended

2.11.1

Whilst we would agree with the key aims and objectives, we maintain that the guideline’s failure to prioritise the ethical basis of working with people who self-harm means that patients’ experiences will remain negative.

The guideline's first key recommendation sets out the basis for all care of people who self harm -namely, that they should be treated with the same care and respect as anyone else.

2.13.1

See comment 2.7.1 above

3.4.3.2

The hierarchy of evidence simply confirms our earlier general points. Where does narrative evidence fit in to this scheme? It appears not to. Narrative evidence based in the lived experience of service users gives expression to their values and experiences. It is argued that the best quality care arises from a marriage of professional and user expertise (Faulkner & Thomas, 2002). The guidelines prioritise technological evidence over and above the ethical basis of clinical practice. This is a serious oversight. Without addressing this issue we believe that the experiences of service users who self-harm will remain negative.

This is described in 3.4.6 The service user experience chapter (Ch 5) had no RCT evidence. It is based upon service user literature, interviews and focus groups with service users and service user group surveys. You don't seem to have read the guideline.

4.1.1

It is good to see that the guidelines make reference to service user experience of services, but it should be apparent by now that we do not believe that the guidelines as set out will achieve any improvement in this key area. Although it is clear that the guidelines tried to reflect service user experiences (see section 5), it is not at all clear that this is reflected in recommendations that might have an influence on staff attitudes. Arguably the only clinical practice recommendation that will impact here is 4.1.6.2 – the involvement of people who self-harm in the training of staff.

The first key recommendation in the NICE guideline (short version) which is intended to be read by clinicians is 4.1.1.1/5.5.1.1. Also, the recommendations from Chapter 5 are set out as the first section in the main 'guidance' section in the NICE guideline. Moreover, the implementation phase will need a sea-change in attitudes and culture for these recommendations to be 'taken on board', a task we hope stakeholders will be involved in.

4.2

We fully agree with the importance of the assessment of capacity and the importance of this in negotiating consent.

Thank you

4.4.1.3 and 4.4.1.4

We are surprised that there is no mention of the possible role of independent peer advocacy and advance statements or crisis cards in assisting in these situations. We accept there is no evidence base for advocacy, but should this preclude the intervention from any consideration, especially when many service users report that advocacy is helpful? There is a very small evidence base for advance statements in mental health care (Papageorgiou et al, 2002).

Advance directives have been incorporated into other mental health guidelines. However, we have doubts that this would be workable in A&E. Instead we have tried to emphasise choice as much as possible. A major issue is the approach healthcare workers have towards people who self-harm and issue that could be exacerbated at this point in time if we introduce ADs

4.4.1.15 and 4.4.1.16

Again, the emphasis here is placed on the technology of risk assessment, and not the need for a respectful and ethical engagement with people who self-harm.

Agree. Please see the revised recommendations which address this issue.

4.5.1 - .3

The feeling that comes over here is that decisions about psychological, pharmacological and psychosocial interventions for self-harm are purely the right of professional staff to be made. This must be couched in more sensitive terms. Treatment decisions should not be made by professionals, but negotiated between professionals and patients.

The second recommendation (now 9.9.3) does indeed address this. However, on reflection, this is such an important point we have added a recommendation stating this plainly.

4.5.5

We have already drawn attention to the difficult, contentious and unhappy category of ‘borderline personality disorder’. We would refer the guidelines group to a thorough and excellent consideration of these issues in a recent themed issue of Philosophy, Psychiatry and Psychology (see, for example Potter, 2003).

Thankyou.

5.1

The introduction to service user experiences of self harm refers to ‘…a rich and well established service user literature on the subject…’, but the guidelines make no reference to at least four significant qualitative studies of self harm. These are Spandler (1996), Marshall & Yazdani (1999), Harris (2000), Bhardwaj (2001). This is a serious oversight, and our view is that the guidelines should reflect the experiences reported in these papers. The papers by Marshall and Yazdani, and Bhardwaj are particularly significant because they reflect the experiences of Asian women who self-harm. The Spandler paper is important because it specifically studies the experiences of young people. Chapter 2 of the Spandler study demonstrates the complexity of the relationship between self-harm and suicide in the minds of young people when harming themselves.

The Harris (2000) was included (see, for example, 5.3.2). We are unable to locate either the Spandler (1996) or the Bhardwaj 2001 studies (either as a paper or a book). Thank you for the Marshall & Yazdani reference - in our searches to support this clinical question we were trying to find studies where the focus was service user accounts of their experiences of services rather than insights into their reasons for self-harming. However, we have requested the item on inter-library loan - unfortunately, this can take some time to process.

5.3.2

This in our view is arguably the most important section of the guidelines. What point is there in delivering technologically excellent and evidence based services that treat people without respect? The key issue to arise from this section is what influence will it have on the guidelines? The answer appears to be none, other than a set of bold font ‘recommendations drawn up by the focus groups’. Where do these appear in the guidelines?

Thank you. The recommendations in Section 5.5 are a synthesis of the focus group recommendations and other evidence given in this chapter. These appear in the appropriate places in the NICE guideline and 'Quick Reference Guides' which go to healthcare professionals. Why you seem to think that nothing can be changed, or that the recommendations in this chapter will be treated as unimportant is a mystery. It does seem as if you haven't read the full guideline. Every recommendation made in the full guideline is reproduced exactly in the NICE version, albeit re-arranged in the form of a care pathway.

5.3.5

Likewise for this section. We note the insertion ‘[should these recommendations below be numbered?] on page 74, which implies that there is doubt as to the status of the following excellent recommendations (p 75) that must surely be incorporated in the final guidelines.

The recommendations drawn up in the I service user focus groups are synthesised in the recommendations in section 5.5. having taken account of other sources for Ii service user experience (service user literature etc).

5.3.6

Ditto 5.3.5

The recommendations drawn up in the service user focus groups are synthesised in the recommendations in section 5.5. having taken account of other sources for service user experience (service user literature etc).

5.3.7

Ditto 5.3.5

The recommendations drawn up in the service user focus groups are synthesised in the recommendations in section 5.5. having taken account of other sources for service user experience (service user literature etc).

5.3.8

Ditto 5.3.5

The recommendations drawn up in the service user focus groups are synthesised in the recommendations in section 5.5. having taken account of other sources for service user experience (service user literature etc).

5.3.9

Ditto 5.3.5

The recommendations drawn up in the service user focus groups are synthesised in the recommendations in section 5.5. having taken account of other sources for service user experience (service user literature etc).

6.1

Although the discussion of capacity here is welcome, our view is that it fails to convey the complexity of capacity. For example, the guidelines correctly point out that capacity is not ‘either – or’, either you have it or you don’t, and that capacity may vary over time. However, one of the most damaging consequences of having a psychiatric diagnosis, especially one such as schizophrenia, is the assumption that your capacity is somehow permanently and irreversibly impaired. This emerges time and time again in user narratives (see for example Campbell, P. 1996). It is essential that the training of mental (and other) health professionals makes clear that the presence of mental disorder does not mean that a person’s capacity is automatically impaired. Our experience is that it is common for people to have unusual beliefs and experiences, yet to retain the capacity to make perfectly sound decisions about their care and treatment.

The guidelines are also deficient in that they make no reference to the use of crisis cards and advance statements as a means of helping to guide treatment decisions when an individual does lack capacity. They should also make reference to the role of friends, carers and advocates at such times.

We agree that these are complex issues. The guideline development group decided that it was important to attempt to give clear guidance to assist service users and health care workers deal with most situations.

The first sentence of 6.3 states explicitly that having a mental disorder does not necessarily mean that a person lacks capacity.

An extra bullet point has been added to mention the need to consider crisis cards and advance directives.

We mention the role of family and friends in section 6.5

Bhardwaj, A. (2001) Growing Up Young, Asian and Female in Britain. Feminist Review, 68, 52 – 67.

Bracken, P. & Thomas, P. (2001) Postpsychiatry: A new direction for mental health. British Medical Journal, 322:724-727.

Campbell, P. (1996) Challenging Loss of Power in Speaking Our Minds: An Anthology. (eds. J. Read, and J. Reynolds) pp 56 - 62. London, Macmillan, Open University.

Faulkner, A. & Layzell, S. (2000) Strategies for Living: A report of user-led research into people’s strategies for living with mental distress. London, Mental Health Foundation.

Faulkner, A. & Thomas, P. (2002) User-led research and evidence based medicine. British Journal of Psychiatry. 180, 1- 3

Harris, J. (2000) Self-Harm: Cutting the Bad out of Me. Qualitative Health Research 10, 164 - 173

Marshall, H & Yazdani, A (1999) Locating Culture in Accounting for Self-harm amongst Asian Young Women. Journal of Community and Applied Social Psychology. 9, 413 – 433.

Papageorgiou, A., King, M., Janmohamed, A., Davidson, O. And Dawson, J. (2002) Advance directives for patients compulsorily admitted to hospital with serious mental illness. British Journal of Psychiatry 181, 513 - 519.

Potter, N. (2003) Commodity/Body/Sign: Borderline Personality and the Signification of Self-Injurious Behaviour. Philosophy, Psychiatry and Psychology, 10, 1 – 16.

Spandler, H. (1996) Who’s hurting who? Young people, self-harm and suicide. Manchester, 42^nd Street. (ISBN 1 900782 00 6)

Thomas, P., Romme, M. & Hamelijnk, J. (1996) Psychiatry and the politics of the underclass. British Journal of Psychiatry. 169, 401 - 404.

Wilkins T M Warner S (2001) Women in Special Hospitals: understanding the presenting behaviours of women diagnosed with borderline personality disorder. Journal of Psychiatric and Mental Health Nursing 8, 289-297