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CG133 Self-harm: service user podcast with Gareth Allen

Gareth Allen discusses his personal experience of self-harm, access to services and harm minimisation.

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This podcast was added on 23 Nov 2011

Podcast transcript

Podcast with Gareth Allen: NICE clinical guideline on ‘self-harm: longer-term management’ CG133

Interviewer: Hello and welcome to the NICE podcast about the NICE clinical guideline; Self-harm: longer-term management. This podcast focuses on a service’s user’s experience and access to services. It will also discuss harm minimisation.

I am Alexa Biesty, implementation lead for this guideline and with me is Mr Gareth Allan who represented service user and carer interests on the guideline development group for this guideline.

Interviewer: Gareth, could you please start by telling us about your experience of self-harm?

GA: Certainly, Well I’m 35 years old now and it probably goes back to when I was at college so 16, 17 years old, and I began cutting myself on the arms and it was several years after that really, probably 3 or 4 years later that I was first diagnosed as suffering from depression. Obviously in hindsight, I was suffering from depression at the time it’s just that I didn’t get it diagnosed, I didn’t get in front of the right person, I didn’t get it treated. And then a few years later when I did get that treated, as I got better, the self harming stopped as part of that process.

Since then, as an adult, I’ve suffered a couple of times, probably 3 times, what you might call a bout of depression and, not on all of those occasions but on 2 of those occasions I’ve started to self harm again as a symptom of that. But I think it’s interesting, having gone through the process of this guideline and analysed my own background a little bit, it’s interesting to think, why do I self harm? Because it’s never a conscious thing, you know, I’m doing it because of this, I’m doing it because of that but with a little bit of hindsight you can try and analyse these things and I think there are two different phases that I can identify. One was what I just talked about, when I was at college and it was very visible, you know, I was cutting my arms so that people could see, look what I’ve done sort of thing. But then, at other times it’s been more private and I’ve done it in places where people can’t see it, and I think that kind of speaks to a very different motivation as to why it was happening.

I suppose everyone’s different really, but it’s not just that everyone’s different but that, even one individual can have different motivations to self harm. I think that’s quite important to try and identify what those motivations are before you start trying to treat what the problem is.

Interviewer: Ok thank you for sharing that. What was your experience of access to care and services and how should this be improved according to the guideline?

GA: Well, I think if I go back to the beginning, as I say, at first the experience was pretty bad simply because I didn’t have any access to care, and I think there’s something there about perhaps the teachers that I had, you know at the time, the other people around me, nothing to do with the medical profession but  perhaps them having a little bit more awareness of what was happening and knowing where to point me which didn’t happen for a few years.

But bringing it more up to date since then, I’ve been very lucky, I’ve got a really good GP who has been very supportive and I’ve got a good relationship with her, you know I’m not one of those people that are in and out of the doctors all the time and until I started suffering from depression a couple of years ago, I didn’t know my GP. I’d been registered there for several years but obviously then started to build a relationship with her and like I say, she was very supportive and she referred me on to a couple of different kinds of treatment.

I had CBT, there was a couple of different experiences I had there. There was a kind of group, I don’t know if you’d call it a group therapy, it was more like a classroom if you like. There were 10 or 12 people and then one instructor.

Then I also had some one-to-one CBT therapy as well, and there was a really big difference between the two because one-to-one was obviously a lot more interactive and she was asking a lot of questions and tailoring it to my lifestyle and she was kind of giving me practical things: ‘go away and try this between now and next week’ and we set targets and goals and it was very effective, it worked really well whereas the classroom based therapy didn’t really work. And I don’t think it was anything against the guy who was doing it. I think he was doing a pretty good job but the problem was he was talking in more generic terms, it wasn’t really about me. It was theoretical really and so it was, sometimes kind of difficult to implement and convert it to my real situation.

But I would also acknowledge that those 2 experiences came in different points in my in my treatment. So the group therapy came earlier on in the treatment and perhaps I wasn’t as ready to listen at that point so I guess the point I’m trying to make is that, I think the more tailored a treatment plan can be to the individual, the better.

Interviewer: Ok so the guideline talks about access to all treatments for all people and I think that that’s...

GA: yeah, I can tell you about my experience but I know there are other things out there that I haven’t experienced and I guess it’s the job of the medical professionals to decide what is the most appropriate treatment.

There was another, another thing that I did after the CBT, which was kind of a book reading group, like a reading group basically. So it was facilitated by one of the community psychiatric nurses and there was seven of us and we would go away and read a book and come back and talk about it next week and that was really good, that helped me to get talking about other things, it helped me to start socialising again and it was absolutely appropriate for me. Again with hindsight I’m really impressed that they put me on that because they do all sorts of things, they do woodwork and all sorts of occupational type things, reading was right for me because I enjoy that so it was nice that there was those options available. So again, it’s not just about finding the right thing for the right person, but the right person at the right time as well.

Interviewer: Ok thank you. What should health and social care professionals do to ensure that they provide high quality care to people who self harm?

GA: Well, I think in one word, they need to listen really. And sometimes it’s very difficult for people to open up and start talking. They feel very vulnerable, often there is a lot of shame associated with self-harm and so I think healthcare professionals need to be very careful not to add to that shame by appearing to be judgemental and sometimes their words or actions can betray that a little bit.

I think there has to be an acceptance that self-harm is the symptom of a very real illness, it is not attention seeking behaviour. As I said, I did it in a more private way so that it wouldn’t attract attention so there are all sorts of different motivations. I know that there is a need for risk assessment, so if someone is presenting with self harm people need to be sure that there is not a risk of suicide or further self harm but I think you have got to be very careful with that risk assessment. It needs to be done in such a way that, you need to avoid doing it in such a way that might exasperate the risk. We saw a lot of testimonials from other services users who described a ‘tick box exercise’ or ‘the nurse was going through the motions’, that sort of thing. That same assessment can be done in a very sympathetic way, I think going back to my original answer: one word, listen, you have got to assess risk but you can‘t do that in a, well if you will forgive the phrase, you can’t do that in a clinical way, it has to be done in a very personal way.

Interviewer: Ok thank you. The guideline makes recommendations on harm minimisation. Could you discuss these recommendations and explain why the guideline development group made these recommendations.

GA: Yes this was an area of some delicacy, I suppose you’d say. We know that some people will self-harm as a release, not everyone, but some people will self-harm as a way of kind of relieving pressure, relieving emotional stress, and if you create a situation where you’re prohibiting that release it can sometimes have unintended consequences, sometimes fatal. If you are saying to someone, ‘you are not permitted to self harm anymore and if you do, then we are going to throw you out the ward or withdraw treatment’ then, people will either hide it, they will just hide the behaviour, then you break down that relationship that you’re trying to build up or, this is something I can relate to, instead of cutting myself with a razor blade I was drinking too much, I was driving too fast, you take other risks. You don’t always have to have a razor blade in your hand to be behaving recklessly. And ultimately people will kill themselves, if they do not have that release that they have become accustomed to having available to them then they find themselves in a position where they have got no other choice

The form of words we came up with was: ‘treatment always has to be working towards stopping self harm’, I think we were all agreed that self harm is a bad thing and we would rather people did not do it. But sometimes tolerating self harm in the short term, as part of a treatment programme towards that ultimate stopping, is not a bad thing and might be the best option and I think we have to be able to trust doctors to make that call.

Interviewer: Ok thank you for that. Is there anything else you’d like to highlight or discuss?

GA: Well just going back to the minimisation thing, there was quite a lot of literature of the non medical professionals type, the charitable sector, the self-harm network, that sort of thing, they produce quite a lot of literature on safer cutting and how to clean wounds and all that sort of thing and that’s, kind of difficult for someone in the NHS to say, ‘go and have a look at this website’, because they don’t want to be seen to be advocating that. But I really do think we need to make sure that people have access to those and to that sort of information and that we don’t have this absolute prohibition. I think that is really important.

I think to go back to how I started this, there is often a lot of shame and self-harm is the symptom of a very serious illness. I’m quite a healthy bloke now and I’m 35 years old, I have got no particular problems, I’m healthy and I’m happy. But there have been some times in my life when I’ve suffered from a really debilitating illness. We don’t just suddenly overnight go from being strong to being weak or from being clever to being stupid, we just get ill and we sometimes get really ill, sometimes we get so ill that we don’t even want to get better. And that’s when we really need medical professionals the most as there are people out there who are, literally saving lives every day. So I suppose I would just say, don’t get complacent and thank you for all your hard work and thank you for saving me.

Interviewer: And thank you very much for sharing your experience.

That was Gareth speaking about his personal experience of self-harm and the treatment he received. The choice of psychosocial intervention or other therapy should be based on the personal assessment taking into account both the episode of self-harm and any associate conditions, in line with the guidance.

We hope that you will find the information in this podcast useful in helping you to implement this NICE clinical guideline. For more information about the NICE clinical guideline on self-harm: longer-term management, including the NICE implementation tools which can be adapted for local use please visit our website www.nice.org.uk

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