Posted to the Self Harm UK Inquiry

I am putting here what I have sent to the National Inquiry into Self-Harm in Young People. They were calling for evidence from anyone at all it seems. Closing date was 31st May 2004.

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My name is Laura. I first self-harmed aged 15 and am now 27 and have been free of self-harm for almost one year. I also belong to two internet support groups for people who self-injure, namely BUS which is a large international web board, and Britbus which is a smaller, invitation-only email group based in the UK. I am a forum moderator on BUS, and have served on the advisory group of Britbus. Further, I belong to a group seeking to raise awareness and understanding of self-injury and have made both individual and group efforts in that regard. The following is my individual response, although I draw on my wider knowledge of self-harm as well as my own experiences.

I'll begin by giving my "history", then talk about some of the attitudes and misconceptions about self-injury that I think need to change, and then finally I will discuss some practical ways in which I think things could be improved. In particular, and in view of the recent negative coverage of online self-harm support groups, I will discuss the BUS web board as an example of good practice.

If you have any questions or if I can assist the Inquiry in any other way, please contact me by email.

About me

I first began self-harming aged about 15, usually by biting myself to produce bruises, occasionally scalding myself. I also avoided food and exercised a lot. I didn't think of myself as "a self-harmer" back then—I'd never heard of it and didn't know that anyone else did these things. I did know about anorexia, of course, but I don't believe I was anorexic: rather, I was having suicidal thoughts and saw self-starvation as a more "acceptable" way to kill myself that would cause less pain to my family. My reasons for self-harming were to relieve feelings of guilt and worthlessness and depression. My brother had died the year before, but I didn't see that as being connected, and still don't.

I told nobody back then, and nobody noticed (nor did I want them to). When I went to university I felt a lot better, although occasionally still used bruising to get through times when I felt down. After getting my degree I became a postgraduate at another university. That's when it got worse and I began cutting myself. I vividly remember the first time: I had got home from lectures and just collapsed in my chair and sat motionless for hours, while lots of thoughts of self-hate and despair and pessimism got louder and louder in my head. Then suddenly I got up and drew my razor across my arm. A few minor cuts and I felt immediate relief, sat down at my desk and calmly began to work, writing my assignments while my left arm was outstretched on a towel to dry.

By that time I had heard of self-harm, although I didn't know anyone who did it. On realising what I had done, I was rather shocked, so when a friend I knew well came to visit me I blurted it out to him. He was sympathetic but insisted that if it happened again I must tell someone, probably my Director of Studies. It did happen again, several times, but I didn't tell him or anyone else.

At the end of that year I moved to yet another university. There was a period of two years when I was fine and had no need to self harm. Then it gradually came back; I began to cut to relieve low moods or to get through difficult social situations. When I had to go to a conference abroad I "trained myself" to cut a less visible place—this then escalated the cutting since I no longer had to worry about the scars and long sleeves. That summer I joined an internet support group, BUS, and with their advice and support decided to get help.

So, at the beginning of my 3rd year of PhD study, I told a few trusted friends (two from work and two from church) what was happening. One accompanied me to see a GP about it, and I was referred to a psychiatrist. Within four weeks I saw a consultant, who was very kind, diagnosed depression and put me on Paroxetine.

The first few weeks of that were dreadful. I cut more often and worse, finally giving up on my hope to keep my arms scar-free. I was visiting family over Christmas but told them nothing, hid my medication and self-injured in secret.

At my 2nd appointment the psychiatrist didn't ask about the cutting, just said I looked better and that the drug was working. He gave me another appointment 3 months away and said he would probably discharge me back to my GP then.

I hoped he was right, I tried very hard to make it true, but just got worse and worse and could see no hope. Saw a GP but she just said there was nothing they could do except send me to a psychologist, which I didn't want. I got more despairing and began to have suicidal thoughts. To stop those thoughts I harmed myself using another method: chemical burns. A couple of days later I decided to go and see a different doctor, who was kind. He looked at my burn and sent me to the Burns Unit at a hospital some distance away.

That was the first time I had ever shown an injury to a doctor, and it resulted in 5 days in hospital and a skin graft. I was 25. The six months that followed consisted of further such injuries as well as more minor cuts, and two suicide attempts, both by self-poisoning (not with drugs but household chemicals). I began seeing a clinical psychologist but didn't find that helpful. The SHO psychiatrist I was seeing kept increasing the Paroxetine until eventually, not because it wasn't helping but because of side-effects, he changed me to Venlafaxine.

Within a few weeks of starting the new drug I was feeling better, sleeping more and self-injuring a lot less. Two more appointments and I asked to be discharged, having only self-harmed once—minor cuts—in two months.

I continued to do well and was self-injury-free for a few more months, but then (for no reason I could see) I got worse and worse pretty rapidly. I resolved to tell my GP at the next visit, but before that came I burned myself again, badly, and had another inpatient stay and skin graft.

Fortunately this time I was referred back to both clinical psychology and psychiatry quickly. Again I didn't find the psychology helpful, but my medication was changed to Amitriptyline, which again proved effective in a matter of weeks. I was then discharged and have remained on the drug and am still self-injury free nearly one year later, now aged 27. Probably I will try to come off the Amitriptyline soon.

Attitudes and misconceptions about self-injury

I know a lot about self-injury and the stereotypes surrounding it, both from my own dealings with the system, and from BUS, which is an internet support group with several thousand members, to which I have belonged for 3 years, and helped to moderate for about one year.

• It is not just young people who self-harm.

  Although I did some minor acts of self-injury in my teens, I was 24 before I ever sought help of any kind, and 25 before I first injured severely enough to require treatment. Moreover, the internet groups I belong to include many people who did not begin self-injuring until much older than 25.

• More generally, there is no "typical self-harmer".

  I hope the respondents to the Inquiry will reveal this. Me—I am female, 27, a PhD graduate and university lecturer. I do not come from a broken home, neither of my parents were alcoholics, I'm not sure if I was sexually abused but if so, nothing like as bad as some things one hears of. I am an evangelical Christian, have never taken illegal drugs and do not drink alcohol.

  Of course, research has shown that there are some characteristics that many self-harmers have in common. While I welcome such research, it should not lead to doctors and the public assuming that every case is the same. In particular, the assumption that all self-harmers have a history of abuse or trauma can be very invalidating to those who have not.

• Self-injury can have a wide variety of functions.

  From what I have read, and learnt online, people's purposes for self-injuring vary widely. Examples include
  • Snapping out of a depressed mood
  • Reducing anxiety
  • Relieving some other intense feeling
  • Stopping flashbacks
  • Stopping hearing voices
  • Slowing down racing thoughts
  • Stopping suicidal thoughts
  • To feel real
  • As proof of being alive
  • Self-punishment
  • Releasing anger
  • Releasing frustration
  • Expressing inner pain to oneself
  • Inducing a dissociative state
  • Asserting ownership over one's body
  • Releasing tension
  • Self-soothing
  • Cleansing away a sense of being "bad".
  This list is not exhaustive, and in addition there are some who are unaware when they self-injure. But it does illustrate that there is wide variety, so that professionals should not just pick one (often "releasing tension") and assume that it applies to everyone.

  For me, the usual functions are self-punishment and snapping out of depression, but sometimes stopping suicidal thoughts; the latter invariably results in a much more severe injury.

• There is no single diagnosis that should be automatically applied to people who self-injure.

  Most notoriously, self-harmers are often automatically diagnosed with Borderline Personality Disorder, whether or not they fit the diagnostic criteria given in the DSM IV or ICD10. This is unhelpful given the negative connotations of this diagnosis, and also means that those self-harmers who are in fact suffering from other illnesses—such as schizophrenia, mood disorders or dissociative disorders—do not get the right treatment promptly.

  I found out quite by accident that I have been diagnosed with BPD by a previous SHO psychiatrist. Although my GP agrees that it doesn't really fit, and my consultant psychiatrist has said unequivocally that he believes I have a mood disorder not a personality disorder, it seems very difficult to get this erased from my records.

  Having this on my records disadvantages me, particularly when I have to see an unfamiliar doctor: my own GP is well aware that I tend to minimise my problems, will usually say I am "fine" and that if I say I am "not too good" then that is very unusual and serious indeed. But the stereotype of borderlines as manipulative and attention-seeking is so prevalent that when I see someone who doesn't know me and am in a bad way, then no matter what I say it will not be listened to or taken seriously.

  The NICE guidelines on self-harm were very welcome in the caution they advise regarding diagnosis of BPD. It is very unfortunate that a huge number of people are so diagnosed solely on the basis of self-harm, and yet doctors then go on to infer from it that the patient is highly unstable and unreliable, is likely to abuse substances, uses self-harm manipulatively to threaten others or to gain attention, and will never get better so there is no point in trying anything.

• There is no single treatment automatically indicated for someone who self-harms.

  Even when BPD is not diagnosed, there does seem to be a belief that everyone who self-harms has a psychological or social problem that will respond to "talking treatments" of some kind. This is simply not true: some people self-harm because they are mentally ill. It is well known that psychotic individuals can commit extreme acts of self injury such as amputating body parts, but this is not what I mean here. There are many I know who self-injure by cutting or burning in order to stop hearing voices, for example. To deny such patients anti-psychotic medication and instead send them to clinical psychology just because of a stereotyped view of self-harmers is irresponsible.

  In my own case, although I was put on antidepressants as soon as I first sought help, the first drug had little or no effect on my symptoms and yet was continued for 8 months. During that time I was being told that psychiatry had done all they could, and was coerced into attending clinical psychology from which I got no benefit. It was only when I finally complained about side-effects that the drug was changed, and the effect of a different anti-depressant was dramatic. Quite simply, when I am on appropriate medication my need to self-harm vanishes. Yes, sometimes thoughts of self-injury reappear, but they are easily brushed off. I am almost a whole year self-injury free now, and I don't feel that it has been a struggle either—I simply am feeling better and don't want to self-harm.

  My sessions of clinical psychology were frustrating, because the therapist (unsurprisingly) insisted on a psychological model for everything and refused to believe anything else. Even when looking back at times I self-injured and times I didn't, she insisted that there must be a "coping strategy", not medication, that had made the difference. I find this simply patronising: like any decent ordinary adult I know ways to cope, I don't need to be told to write a To Do list when I am busy, to take regular breaks when I am studying, to do something relaxing when I am feeling stressed; these are obvious. What psychologists refused to believe is that there are times when the incessant self-hating thoughts in my head refuse to go away no matter how I try to "challenge" them, the crushing despair won't lift no matter how many nice walks I go on, I simply can't function no matter how many self-rewards I promise myself. In those times self-injury works and nothing else. But put me on the right medication and not only am I able to resist the urge to self-harm, I barely feel the need in the first place.

  When I last saw my consultant psychiatrist he made it quite clear that he thinks I have a mood disorder (depression or perhaps bipolar II, not sure), and that should I relapse "it's a psychiatrist you should see, don't go to some kind of talking therapy". I do hope my doctors will take heed of this in future and save me a lot of unnecessary suffering.

  True, there must be many self-harmers who respond best to CBT, counselling or some other "talking therapy". But some people are just plain ill, and should be diagnosed and treated as such.

• The severity of an injury is not a good guide to the person's level of distress.

  In the case of suicide attempts it is well known that the degree of lethality and the degree of intent need to be carefully separated—and yet, my psychiatrist was far more concerned by the full-thickness burn I inflicted to stop suicidal thoughts, than by the potassium ferricyanide I swallowed wanting to die. The latter didn't have much effect, but I had truly thought it would.

  It is not helpful to over-react to severe injuries, nor to belittle minor ones. The severity of injuries varies not only from patient to patient, but also in the same patient over time and according to circumstance. As a teenager my injuries were only minor bruises—I waited until it was cuts before I sought help, and it was not until my first 3rd degree burn that I actually got an injury looked at. If I had considered asking for help all those years ago, would my bruises have seemed "serious enough" to warrant intervention?

  There have been periods when I have been self-harming daily, with deep burns every couple of weeks—in those times, staff reacting with extreme horror at my injuries and trying to have me sectioned really isn't appropriate.
  In other times when I have gone a long period without self-harm but the depression is returning, I might be trying so hard not to admit to myself that I am relapsing that I only inflict a minor injury, desperately not wanting to go back to how things were. In that situation, the feelings behind the minor injury are important and should be noted.

• The person's mental state can be very different before and after inflicting an injury.

  Often people self-injure to alter their mood state. If someone who has self-harmed does not seem visibly upset but is quite cheerful, this does not mean they inflicted the injury for no good reason: it could well be that they were in a dreadful state beforehand, the whole point of the injury was to make them feel better, and it has worked.

  Personally I sometimes find that when I have self-harmed to snap out of a lengthy depressed state, I then swing pretty quickly the other way so I might even seem euphoric afterwards. If the injury is serious and requires hospital treatment, staff find my happy mood hard to accept and can quickly become angry.

  Also, it should not be assumed that someone who has just self-harmed is still a danger to themselves. This requires more careful assessment: commonly the person feels better afterwards and will not feel the urge to self-harm again immediately. In those cases, offering more support in the future, rather than immediate admission on a section, is appropriate.

  Questions like "How were you feeling just before you did this?", "How are you feeling now?" and "How long will this last, do you think?" are essential.

• The "attention-seeking" myth is a very dangerous one indeed.

  This cannot be stressed enough. I suppose there may be people whose motive is attention, and perhaps by definition they are the most visible, but they are nevertheless a minority. In fact, self-harmers are those who so strongly want to manage their feelings themselves that they are willing to self-injure, in secret, if it helps them keep functioning.

  This myth discourages people from seeking help, either for their mental symptoms or for the injuries themselves. It also adds to the stigma in society—few people know much about self-injury, but what they have heard usually has "attention seeking" in the same breath. It validates all the mistreatment that self-harmers receive from misinformed professionals—if we are "only doing it for attention" then it's alright to rant at us about how much we are costing the NHS.

  It is particularly dangerous when someone who self-harms is suicidal. Although most self-injurious acts are not done with suicidal intent, that person may well attempt suicide at some other time, and if they have grown used to being dismissed as an attention-seeker, how will they dare to tell anyone that they are planning to die?

  One major effect of this myth is that professionals are very keen not to "reinforce" the self-harming behaviour. This is good — I certainly don't want anyone making it harder for me to stop. But the right way to avoiding reinforcing it is to pay more attention to what I say, rather than less attention to what I do. If no-one will listen when I tell them how dreadful I am feeling, then I am bound to resort to self-harm, not because they will then pay more attention (they might, they might not) but because it is the best way I can self-treat my depressive symptoms.

  If I manage to resist the need to self-injure long enough to see a doctor and tell them how I am feeling and what is likely to happen, how can that be attention-seeking when I am simply and directly stating the facts? Doctors can feel that this is somehow manipulative, that I am "threatening" to self-injure in order to—I don't know, be admitted to hospital perhaps? This is clearly false: for one thing, I am notorious for refusing admission and for discharging myself as soon as I can; and another, my usual practice is to injure without telling anyone, care for it myself and only seek assistance if it becomes infected, so asking for help prior to the injury took a lot of trust. (And yet, when I finally present with a month-old full thickness burn that has become infected, I am usually lectured on how I should have brought it for treatment sooner!)

  In fact, it is hard to see any way of engaging with the system that will not count as "attention-seeking". Often it feels as if the more directly you ask for help, the more doctors take delight in ignoring you, so you find yourself injuring daily to keep the thoughts at bay, doggedly turning up at medication appointments saying you are fine, and just hoping that if you never ever ask for anything that someone will one day notice what you need. This is ridiculous—to avoid reinforcing self-injury, staff should commend and act upon any attempt by the patient to express her needs directly in words, and be careful not to assume that she is doing fine as soon as the self-harm has lessened.

Changes that could be made

• Communication within the NHS needs improvement.

  Self-harmers are in the unusual position of receiving care not only from a GP and mental health services but also from A+E staff, and perhaps from other hospital departments such as toxicology or burns. These various people need to talk to one another!

  An example where this did not happen was my first hospital admission. I went to my GP with a severe burn, he sent me to the Burns Unit. Although my GP knew the injury was self-inflicted, and I told the doctors in the Burns Unit that I had done it to stop suicidal thoughts, I did not see a psychiatrist in hospital. After being discharged I continued to feel pretty unsafe, but forced myself to "hang on" 8 weeks until my next psychiatric outpatient appointment. When I got there, I found that he had not been informed of the incident at all, even though it was the first time I'd needed any treatment for an injury, let alone 5 days inpatient and a skin graft. When I told him, he didn't seem to believe me and changed the subject. It seemed that nothing had been added to my notes since last appointment's "Laura is doing fine, probably discharge her next visit" and so with some reluctance, the SHO increased my medication a little and gave me another appointment two months away.
  I attempted suicide the following day.

  This is just one example—it is quite usual to arrive at psych appointments finding that nobody knows all that has happened since last time. On another occasion (an electrical burn) A+E staff felt I needed to see my psychiatrist sooner, or maybe a CPN. However this didn't happen and in fact at my follow up appointment the next day my notes were missing and the doctor examining my wound didn't even know that it was self-inflicted.

  Another example: I tried to strangle myself during the night while I was in the toxicology ward after a suicide attempt. I was discovered, and after they had cut the noose etc I overheard nurses discussing what should be written on the "Adverse Incident Form". So the incident was recorded somewhere, but not in my notes it appears: nobody has ever referred to the matter, not even the psychiatrist who decided I was safe to discharge the following day.

  Because my injuries sometimes take me to the Burns Unit some distance away, I end up in the care of psychiatric services there as well as in the city where I live. And they don't talk to each other either. Even when I was sectioned, somehow the fact that I was discharged not to the outside world but back to the Burns Unit meant that my GP received no notification that I had been detained. Fortunately he did believe me when I told him—being sectioned is significant, if nothing else because it affects how I will or will not trust doctors in future, and not informing my GP seems remiss.

• Patients should always be given full information about their medications.

  This is particularly important where drugs such as SSRIs have been known to increase self-injury. I experienced this with Paroxetine, but at the time I had no idea that the drug could be responsible. Had I been prepared for this I might have been able to plan some way to be safer.

• Doctors need to learn how to deal with the whole person.

  Sometimes it can happen that my physical need for treatment of my injury conflicts with my mental health needs, and vice versa.

  For example, a plastic surgeon may want to admit me for surgery to fix a burn. But I know that being in hospital is enormously stressful for me and usually causes a worsening in the disturbing thoughts and thoughts of suicide. So I try to negotiate to attend outpatient clinic rather than be admitted—surgeon insists "No, surgery is needed or else scarring will be worse". I point out that given the number of scars I already have, one more isn't so upsetting to me, and that for me the priority is to spend as little time in hospital as possible. But as I try to explain why and how the thoughts get worse, rather than trying to find a way to make admission easier to cope with, he decides I should be sectioned.

  Ironically, once sectioned I am taken to a psychiatric ward, where none of the aseptic procedures of the Burns Unit are followed, I am not allowed to irrigate the wound as often as I was instructed, and I am even allowed to go outside which I was told would certainly cause infection! And my operation is further delayed because of some administrative error to do with changing wards. Moreover, the injury worsens during my stay in the psych ward—it's a circumferential burn, and it tightens a lot as it dries out. I know only too well the risk of loss of circulation to the arm and keep trying to explain that to the nurses and ask to be seen by a doctor. But they are psychiatric nurses, they don't know much about burns and they aren't going to fetch a doctor for me. Fortunately night staff took a bit more notice and I had an escharotomy at midnight—but it was very frightening to be that close to losing my arm and to have nurses taking no notice.

  So, psychiatric nurses need rudimentary knowledge about injuries, or at least the willingness to fetch someone else. And physical doctors need to be less afraid of "psych patients" and more willing to listen and negotiate what is best for the person as well as for their injury. They also should know to what extent the Mental Health Act can and cannot be used to force treatment for self-inflicted injuries.

• Steps should be taken to make A+E, Burns Units, Toxicology wards etc easier for mentally distressed patients to cope with.

  Often when I have been in hospital my mental state has quickly worsened. This is partly because of negative attitudes I encounter among staff—I will discuss this below. But also, in most hospital wards there is absolutely nothing to do. This is especially true in wards where patients have all their belongings confiscated. The result is that I spend the entire day sitting still and thinking. With nothing to distract me my paranoid thoughts and thoughts of self-hate, self-harm and suicide increase until I either discharge myself or harm myself further while on the ward.

  So something should be provided to help me to occupy myself. Last time, my own attempts to do this were misinterpreted by the Burns Unit nurses—my looking round at the equipment in the room led to comments of "What's she doing now? Is she trying to find something she can use?", and my looking out of the window was interpreted as a prelude to jumping out, something I had no intention of doing. But the nurses fetched a psychiatrist and gave their version of events and had me sectioned.

  Liaison psychiatry can be very helpful in this regard. Once I was off section and back in the Burns Unit, a psych liaison nurse visited me every day to chat about things. She brought me a wall map (in lieu of a window, apparently!) and a Rubik cube and some reading matter. Also, she managed tactfully to arrange that one particular nurse with a very bad attitude toward self-harmers should not be involved in my care at all.

  Another thing that makes hospital wards difficult is the amount of social interaction. In the course of one day the patient is expected to chat smilingly to a vast army of doctors, nurses, orderlies and other patients, which takes huge effort when feeling depressed and withdrawn. Even just the need to "act normal" so that the nurses don't get worried and try to section me again is a strain. Although I resented being sectioned, one advantage of the psychiatric ward is that, unlike in any other part of the hospital, one is free to sit on the floor curled in a ball crying and no-one will bat an eyelid. So if staff in other wards could be persuaded (by liaison staff, perhaps) to just leave patients alone when they don't feel like talking or need to cry for a bit, that would help.

  A+E is a particularly stressful place for anyone, but especially for someone who has self-harmed. Again, the long wait with nothing for distraction is hard—and leads many to leave again without being seen. The A+E where I live has a very helpful policy in this regard: patients who tell the clerk that they have self-harmed are fast-tracked, avoiding a long wait. I have also found that they will let me wait somewhere quieter than the main area.

  Another part of the policy is that self-harm patients (including those whose physical injuries are not serious) will be offered a night's admission and be seen by a psychiatrist the following morning. I think this is an excellent policy, at least in theory. In practice however, I have never actually taken up the offer of admission because of bad attitudes I encountered in the ward on a previous occasion when I did physically need to be admitted. But given better trained staff this idea could work very well indeed. Information on this policy is at http://www.scotland.gov.uk/library5/health/lfpr-05.asp.

  Another difficult issue in hospitals is privacy. Many people who self-injure feel embarrassment or shame when someone sees their scars, which is made much worse if the scars are seen by large numbers of staff and even other patients. If possible, a long sleeved garment rather than a hospital gown should be allowed, or better still, the patient's own clothes. And it is never appropriate to allow a crowd of people to stare, no matter how unusual the injury or situation is.

  Psychiatric evaluations should, if at all possible, be done in private and with the patient fully clothed.

• Patients should be enabled to treat their own injuries as far as possible.

  This is clearly in everyone's interests: it would reduce the amount of time spent by staff dealing with wounds, it saves the patient from the emotional strain of frequent dressing-change appointments (which are difficult to cope with for the reasons just described above), it removes the whole "attention-seeking" charge, and gives the patient a sense of control and responsibility about the whole process.

  Yet the same staff who complain that we are "a drain on the NHS" continue to insist that we turn up for umpteen appointments at wound clinics and see practice nurses every day to change bandages. Self-harmers who have sustained frequent injuries quickly become expert in how to deal with them, often knowing far more than the practice nurses anyway.

  One problem is finding somewhere that will sell the necessary wound dressings. I have resorted to the internet for this, since pharmacists tend to refuse, saying things like "If you have a burn that large you should go to a doctor"—yes, and be called a time-waster and an attention-seeker. Pharmacies and nurses could be a bit more pragmatic about this: surely it is better to provide supplies so that the patient can self-treat than to refuse and have the injury untreated altogether?

• Leaders of face-to-face support groups should receive training, help and supervision.

  I had a very bad experience with a group I attended. Although it was recommended by my GP, it seemed to be run by service users without any support from professionals. In fact, the group seemed to entirely consist of the leader and her friends who had met while patients in the local psychiatric hospital. So when I joined, having never been admitted there, I was immediately an outsider. This was made worse when the group—all of whom were living on benefits, most of whom had left school with few qualifications—learnt that I was at university studying for a PhD. I felt rather awkward as the oldest and most educated, as well as having no body piercings and no understanding of goth culture!

  During the week prior to the second group session, the leaders arranged to meet me alone. At this meeting they asked me to leave the group, saying that members had made complaints against me. After asking for details and managing to establish that these allegations were false, I was allowed to remain in the group, but of course the matter left me considerably shaken, and in fact I attempted suicide soon after (although I never told the leaders of that).

  Other things I found difficult about the face-to-face group were

  • The sight of others with scars and fresh wounds on view.
    I keep mine covered at all times. Perhaps if I had been warned to expect this it might not have been such a shock.
  • Members comparing injuries, number of stitches required etc.
    This is forbidden on the internet groups I belong to. I didn't want to engage in this kind of competition, even though by the sounds of things I would "win" it hands down.
  • People eating chocolate, people lighting cigarettes and leaving their lighters and matches lying around.
    I was the only group member to self-injure by burning (not the only one with eating issues, though). I asked the leader if she would get them to keep these things out of sight, but she refused.
  • The rule that members must not self-injure during the group meeting.
    This is not as sensible as it sounds: the meeting content can be very stressful and even "triggering" (especially if, as I did, one feels attacked by other group members), and delaying the urge to self harm can result in a worse injury later. A better rule might be "Any self-injury during group meetings must be done discreetly and privately so that nobody is aware of it". Had that been allowed, a few minor cuts during the first meeting might have been enough to avoid the full-thickness burn I inflicted on returning home afterwards.

• Safe, well-managed online support groups should be encouraged.

  There has been recent negative publicity about some online groups, saying that they encourage self-injury or suicide in a similar way to the "pro-ana" groups that encourage eating disorders. While it is true that some groups may be like that, many others are enormously beneficial. I belong to BUS, which is a very safe and healthy group. The group is very large—some 5000 members—although only a fraction of these are actively posting. A team of around 25 moderators (of which I am one) ensures that discussions are not developing into something unhelpful, and generally oversees all that goes on. There are strict guidelines, which the moderators can enforce by editing messages or in extreme circumstances by banning users. Some of these guidelines are:
  • No posting about new methods to self-injure.
  • No posting of pictures of injuries, nor links to pro-self-injury sites.
  • Sensitive subjects, such as self-injury, suicide, sexual abuse etc., should carry a warning (known as a spoiler) in the subject line.
  • Suicidal feelings may be discussed (with a spoiler) but threats and suicide notes are not permitted.
  • No posting of weights, numbers of pills or dimensions of wounds etc—this is to avoid the type of "competition" which I encountered in a face-to-face group as described above.
  • Journalists and researchers wishing to approach members for their work must obtain approval from Deb, the group owner.
  The moderators are also able to step in to ensure that nobody gives medical advice that should be got from a professional (for example, if someone posts saying they have ODed, regardless of the amount we will advise them to get help), and if disputes arise. Having said that, the community is a friendly one, and the vast majority of members never have any problem adhering to the rules.

  It has been suggested in the media that people who themselves are having problems with self-injury are not fit to help others. This is clearly false: all of BUS's moderators (with the exception of those dealing with the Friends and Family forum) have had direct experience of self-injury, and many still struggle with it. But because there is not just one leader, but rather a team, we are able to help one another and be accountable to one another in the decisions we make. In fact, all members usually give other people the best, most sensible and caring advice, and this in itself can help them learn how to apply these principles in their own situation. To use an example from CBT: being able to spot negative slants in others' reasoning can give us practice that will help us to correct our own thought patterns. Also, the experience of helping others boosts self-esteem, and also gives us an insight into how our friends, family and doctors feel when trying to help us.

  Online support has many advantages over face-to-face support. These include:

  • We cannot see one another's wounds or scars.
  • Support is available 24 hours a day, since members live in many time-zones.
  • Support is still available when away from home.
  • The anonymity of the internet makes it easier to talk openly about very personal things.
  • The large size of the group means that the burden of support is shared.
    If someone I know in the group posts needing help, but I don't feel able to respond, that's OK because someone else will. Similarly, if a group member is missing, perhaps in hospital, and we are worried about them, we can share that concern together rather than one person having to feel responsible.
  • The large size of the group means there is a wealth of knowledge, and nobody is the odd one out.
    Self harmers are diverse, and in a small group there might still not be anyone who understands me or is similar to me in any way, as I found in the face-to-face group, described above. But in a huge online group anyone can find kindred spirits, and anyone asking questions like "Does anyone else ever feel....?" or "Has anyone had experience of...?" will almost always find answers.

  BUS is run by Deb Martinson and borrows (with permission) the name of the seminal book "Bodies Under Siege" by US psychiatrist Dr Armando Favazza. I can confidently say that it is respected internationally in both grassroots and clinical circles as a best practice example of an online client-run support community. Rather than discourage all online support groups because of a few bad ones, it would be more appropriate to encourage invaluable communities such as BUS through infrastructure, training and funding. I would encourage members of the Inquiry panel to visit the BUS Web board (http://www.buslist.org/phpBB) and Deb's site (http://www.selfharm.net) themselves, to see how healthy and beneficial this kind of group can be.

• Training is needed, to begin changing attitudes in the NHS.

  Overworked staff in A+E, Burns units and toxicology wards do understandably feel frustrated by self-harm, but taking that out on us only makes matters worse. Several organisations (such as Basement Project, Bristol Crisis Service for Women, Project Spear and the Self Harm Alliance) offer training that might help.

  Improving the NHS generally will also help: if there were more beds, staff would be less inclined to rant at me for requiring one. More generally, I do not believe staff truly intend to be hurtful, rather that they are often overworked and under-resourced, so that having to deal with an act of self-harm can seem like the last straw.

  Even among mental healthcare workers, self-injury carries a stigma. Psychiatric nurses can be overheard making unkind remarks, or laughing at injuries which are not deemed to be serious enough. This has to stop.

• Self Injury Charter.

  This was drawn up for National Self Injury Awareness Day 2003 by UK service users (mostly those on the nsiaduk@yahoogroups.com list, with the final version written by Chris O'Sullivan of See Me Scotland) and was also published by SAMH (see their article). A copy of the charter is attached.