Harm-Minimisation: limiting the damage of self-injury,

Louise Roxanne Pembroke

Reprinted with the kind permission of the publishers and editors Helen Spandler and Sam Warner of their book 'Beyond Fear and Control'.

 

My own experience of realising the concept

As a teenager I knew nothing about first-aid, anatomy, physiology and wound care, I never studied science at ĎOí or ĎAí level. At 17, I attempted to kill myself and took a Paracetomol overdose believing I would fall unconscious and quietly die in my sleep escaping the intolerable pain of living. Within months of my unsuccessful attempt I was injuring myself, initially superficial scratches, then the cuts became deeper.

Psychiatric hospitalisation only compounded my need to harm myself and the response from staff was frequently angry and hostile. Back at home as my distress and isolation deepened I would go to my local GP surgery with wounds but was frequently referred to Accident & Emergency. There, I learnt what good and bad care meant. One doctor would stitch wounds to the bone of my arm with just a skin suture, not bothering to repair the underlying layers. As the verbal humiliation and hostility increased with each visit to A&E I became increasingly reluctant to attend for fear of the response I would get.

At this point in my life I was struggling with reduced eyesight due to a rare eye condition, was too depressed to continue with a college course I had worked hard to get into, and had very little in my life after psychiatric admissions. Friends were scared of the loony girl who was rumoured to be carving herself up. In short, I lost hope, and didnít think that anyone else believed in me either. Loss of hope jettisoned my need to self-injure and as I became more depressed by the responses to my self-harm this turned into what Gethin Morgan refers to as 'malignant alienation'. I became increasingly alienated and withdrawn from everything to the point that I felt death was preferable to the responses to my self-injuring, so I attempted to die again.

Not only did I not know how to look after myself, I didnít care to. My general state of health deteriorated, the ophthalmologist could see this in my eyes and I stopped going to A&E, but my inability to look after myself resulted in septicaemia. The social service run day centre wouldnít accept me on grounds that I was too much of a danger to myself and my GP told me that I risked losing the use of my arm. He might as well have said that my head would drop off because I didnít understand how I could lose the use of a limb.

Ros, was my ophthalmic nurse, she had known me since I was 14 years old and seen this bright outgoing girl turn into a slumped shadow of herself. She also grasped just how traumatised I was with the deterioration in my eyesight and the ongoing difficulties and how this must have impacted on someone who was in full-time dance training which requires good sight. Ros knew I was harming myself and during one appointment she asked "Whatís wrong, are you hurt?", I said I was but that I couldnít face the humiliation of Accident & Emergency so she calmly asked to see the wound. I was adamant there was no way I was going to A&E even if I did get septicaemia again, so she offered to me help look after it so that didnít happen.

It was a bad wound, down to the bone again which I didnít realise because I expected a bone to appear bright shiny white, I didnít realise that bone is covered in a yellowish layer of connective tissue called periosteum.

Ros gave me my first lesson in anatomy & physiology when I was 18 years old. She explained what each layer of tissue was called, what itís function was and what could happen to it if damaged. I learnt that the yellow globular stuff was fat, the purplish-brownish bit underneath that which looked like meat at the supermarket was muscle. That the white cords which join the muscle to the bone were tendons and they were really something I didnít want to damage because thatís what could have resulted in loss of mobility [now the GPís warnings made sense].

I learnt the difference between veins and arteries and that it was easy to not see a nerve before cutting it. At least most of my serious injuries were longitudinal, that afforded me slightly more safety, but that had been luck not judgement on my part.

Ros taught me how to recognise the symptoms of infection and how to minimise the risk of it occurring such as by using clean blades, washing my hands, pulling the wound together with steristrips or tape and dressing it with appropriate dressings. Although wounds to the bone really should be repaired properly with each layer of tissue sewn together, she understood that at that point I couldnít face going to A&E and that it was more important to give me the necessary basic knowledge so that I didnít put my life or limb at risk.

This non-judgemental and practical approach was imparted without any lecturing or catastrophising and had a profound impact on me. Ros was the first person who didnít recoil in disgust or be angry, negative or distressed about my need to self-injure. She understood that was where I was at in my life and she accepted me whether I harmed or didnít harm. I didnít have to hide it, justify it, or make bargains or promises I couldnít keep, it was such a relief, and, I could ask her for straightforward advice about any aspect of first aid and wound care.

For the first time I had some control over my circumstances. I had choices, I could choose to stop cutting at a certain point, I could choose to position the blade the other side of the vein to avoid a major bleed, I could choose to make it cleaner and safer. It might not seem like much of a choice but it is when you are striving to stay out of the psychiatric system, cope with extreme experiences and failing eyesight, itís a big deal. Having some physical control over my self-injury was my first step towards engaging more actively with the need to injure and negotiating with that need. Just as IV drug users having access to clean needles is life saving [not that I am in anyway suggesting that self-injury is an addiction, I donít subscribe to that idea].

Likewise good sexual health services would not dictate abstinence to people having multiple sexual partners but promote safer sex by the use of condoms to prevent the contraction of HIV. Some Alcohol Dependency services also address limiting the damage that heavy alcohol consumption can result in.

These services have debated and practised the concept of harm-minimisation.

Contrary to popular psychiatric myth that women Ďgrow outí of self-harm on their 30th birthday for me the opposite was true, my worst self-injury occurred during my 30ís.

The following description might be difficult for some readers to look at as it describes in detail how harm-minimisation can be also be applied to surgically serious self-injury.

I am a voice hearer, I hear voices both inside and outside of my head and some I can see and feel. One group of my voices are snakes and at times parts of my skin would be changed into snake skin. This was unbearable for me and the only way I could relieve my distress and to halt the transformation from spreading was to remove the skin.

This was quite a different form of self-injury and required a different

approach to minimising the damage. I attached artery clips to the edges of the flap to be removed so that I could pull it back and see where I was cutting as skin doesnít fall away from the body until itís a sizeable area and scar tissue makes it more rigid. I know this sounds horribly surgical but I didnít want major blood vessels to be severed by effectively cutting Ďblindí with a blade under a flap. I couldnít get to hospital quickly, I understood the risks of applying a tourniquet, and I knew I would have been unable to call for an ambulance in those circumstances because I couldnít have placed enough value on myself to do so.

The use of artery clips with those injuries saved me from severing major blood vessels and worse damage than needing a skin-graft to repair it.

 

Being Practical

Iím not suggesting that people who self-harm should have to look after their injuries, far from it, Iím a firm advocate of advocacy for people who self-harm in Accident & Emergency, Crisis Cards, Advance Directives and ĎConsultant lettersí, to enable clinically appropriate and respectful treatment of self-harm.

'Consultant Letters'

Consultant letters are something really useful that psychiatrists can give their patients to take to A&E [or even better, get it placed in the notes], this is pertinent to those with a long history of self-injury who are more likely to be subject to the worst excesses of medical and psychiatric violation. My previous consultant drafted a letter for A&E/surgeons outlining just what I was having to deal with in my life and that negative approaches and traditional treatment made matters much worse for me. He suggested that the best thing they could do was to treat me according to clinical need, with dignity and respect, with the minimum fuss and without any psychiatric dramas being imposed on me. Phil understood that when I harmed myself, the train had hit the buffers. He knew that I did everything I could to prevent that from occurring and that when it did happen, it really was my last option He understood that psychiatric assessment made me feel homicidal and that even the slightest threat of admission could potentially result in attempted suicide as he knew I would rather die than be medicated. Phil acted as my Monopoly get out of jail free card.

In the latter years of my worst self-injury, my friend Dee Dee became my advocate and what a wonderful advocate she was! With no experience or training she was naturally gifted in the art of not being threatening to staff but calmly assertive when necessary. She reassured me and made a difficult process as painless as it could be. Her presence removed an entire layer of anxiety for me so that I could concentrate on holding it together.

Crisis Cards and Advance Directives

Peter Campbell [a founder member of Survivor's Speak Out ] describes what Crisis Cards are and how they came about;

"Crisis cards are a grassroots idea. They were launched at the Survivor's Speak Out AGM in 1989. Crisis cards can be carried on the person and used in a mental health emergency, particularly if the individual is having trouble communicating. Their prime purpose is to enable the bearer to nominate an advocate but they also have the room for short notes on what support the person most wants in a crisis. At the time of their introduction there were few if any advocacy projects so crisis cards highlighted the need for advocacy provision. Some agencies took up the idea but added space for further information like details of GP and medication the bearer was taking".

Crisis cards are a useful tool for outlining what helps/hinders and if staff are open to this, it can make their jobs a lot easier and maybe more rewarding. All of the above aids communication.

Building on this, I have argued the case in the nursing press for advocacy services to be extended to Accident and Emergency for people presenting with self-harm, and I was part of research team that undertook the first study to explore the acceptability and practicality of such a service.

Peter Campbell further describes what Advance Directives are;

"Advance statements enable service users to write down in advance what care and treatment they do and don't want. They can also include information about themselves to inform mental health workers who do not know them well. Advance statements become particularly important if treatment decisions are being taken and the individual is deemed not to have the capacity to make such decisions. Advance statements are also sometimes called Advance Directives but in fact they cannot force mental health workers to follow them but are only advisory. Interest in advance statements grew in the 1990's and are likely to play a role in the new Mental Health Act".

I did successfully use an advance directive within a liver unit to prevent treatment I would not have wanted from happening following self-harm.

I believe that consultant letter, crisis cards and advance directives can all be used to outline a persons preferred choice of injury repair, dressings and strategies for harm-minimisation.

The concept of Harm-Minimisation: application and promotion

What is meant by harm-minimisation?

It is about accepting the need to self harm as a valid method of survival until survival is possible by other means. This does not condone or encourage self-injury, itís about facing the reality of maximising safety in the event of self-harm. If we are going to harm it is safer to do so with information. Information on basic anatomy, physiology, first aid, wound care, correct usage of dressings and safer ways to harm.

By Ďsaferí self-harm Iím referring to how we injure, what with, where, and minimising the risks. The risks of harming with no information are far greater than the risks of harming with information.

If we have no information we have no choices. Harm minimisation, the act of making injuring as safe as we can, in itself can result in a reduction of the severity or frequency of the harm, or at least help to prevent life or limb threatening damage. It promotes thinking about limiting the damage, attempting compromises with oneself, and prevention where that is possible. It promotes self-management, which is pretty crucial in the area of self-harm because many people do not find appropriate support within NHS services.

For some professionals harm-minimisation is not an acceptable idea to them if their only definition of progress or recovery is total cessation of the harm. I would argue that total cessation is not the only measure of progress; if we do less damage, take better care of ourselves, or feel better about ourselves, that can constitute progress too.

DBT [Dialectical Behaviour Therapy] trainers who have stated that "A happy self-harmer is not progress" is missing the point!

Recovery can mean learning to live with enduring and complex problems and developing a range of coping strategies that donít exclude self-harm but over time with appropriate psychological and social support [as defined by the individual] can mean that self-harm is not the sole method of coping. This can then lead to cessation.

Harm-minimisation is just one part of the equation; accepting the need to self-harm [self and supporters], developing an explanatory frame of reference to understand the origins, evolution, meanings, functions of our self-harm within the context of our life histories so that finding a range of strategies for survival will reflect our definitions and experiences. Engaging with our distress means that we move from being managed by others to self-management.

My experience of developing and promoting harm-minimisation

I was the founding member of National Self-Harm Network [NSHN] and the first Chair between 1994 - 2000. During that time I led a project to promote the concept of harm-minimisation. NSHN received a MIND Millennium Award for us to organise two ĎRisk Reductioní conferences in London and Manchester [1999]. These came about as result of listening to members experiences of dire treatment noteably but not exclusively within Accident & Emergency Departments. Some survivors experiences of A&E appeared to increase the risks per se, increase the risks of further self-harm, and increase the risk of poor wound management resulting in worse disfigurement.

The Risk Reduction conferences were ground breaking, nothing like this had been attempted before and it felt like a risk to do it, but we knew we had to!

The conferences addressed a very wide range of issues from as many angles, involving as many experts by experience and profession as we could fit in although the conferences were only open to people with first hand experience of self-harm as we didnít want to get hooked into debating about the concept, we just wanted to get the information to the people.

We started with a nurse and medical student who talked about anatomy and physiology in plain English with easy descriptions and clear anatomical drawings. They explained simply what structures looked like because in order to limit the damage you have to know what youíre looking at!

We talked though how and what damage can occur and difficulties with repairing some structures, this is because most people who self-injure donít actually have a desire to end up with reduced mobility.

We detailed the principles of First Aid [specific to cuts and burns] and what to get for a First Aid kit, along with wound care principles.

We stressed the areas of the body to try and avoid, and safety points such as cutting along the direction that structures grow ie longitudinal, as this reduces the risk of cutting completely through tendons and is easier to treat if medically repaired. We looked at how the direction and way cutting occurs, along with aftercare and dressings can influence scar minimisation. We looked at controlling blood loss and stopping burning along with assessing the damage and sign posts for when to seek medical help.

Other areas we detailed included; recognising the signs of infection and further safety tips such as looking at what youíre doing, slowing down, not harming whilst under the influence of drugs/alcohol, and sharper implements being safer than blunt ones because of the degree of pressure that has to be applied, especially regarding scar tissue which is much tougher.

We were very clear that harm-minimisation principles did not apply to any internal damage such as overdoses because internal damage cannot be seen nor assessed except by medical testing at hospital. Likewise, the effects of eating distress, such as low potassium cannot be assessed except by medical tests.

At one of the conferences a plastic surgeon talked about surgical procedures to reduce or change the appearance of scars and at both events we had a Red Cross skin camouflage practitioner talk about and demonstrate this excellent free service available to anyone who is scarred. In the subsequent book we produced after the conferences Cutting the Risk [NSHN 2000], I added to the surgeons contribution in a section about what to consider if seeking surgery for scars as this is not a straightforward issue. It was gratifying to see the book reviewed by the British Journal of Plastic Surgery [Parry-Davies 2000) .

One member of NSHN gave an excellent talk about the psychological aspects of living and coping with scars. This took the conference more into the emotional side of harm-minimisation.

I was very much influenced by the work of the charity Changing Faces which primarily works with people affected by facial differences/disfigurement. They assist people to feel proud of their appearance, to present confidently, and to manage effectively negative responses from others. My idea of empowerment is that people would feel that they have the right to wear their skin however it looks.

The workshops during the conferences were truly inspiring. Participants came up with a ream of creative suggestions on a range of issues; practical, general, emotional, body image.

Hereís a few examples from each workshop, taken from the book ĎCutting the RiskĎ though I must stress that we all experience different things as helpful/unhelpful and it depends on the context. This is not the definitive list of what people 'should' find helpful as we all need to find our own strategies and 'alternatives' which are unique to us. These are merely examples;

Practical:

Use of cling film as a temporary dressing.

Friarís Balsam helping steristrips to adhere better.

Recognising substitution of different forms of harm to prevent greater harm.

Having a Ďno goí for professionals

Writing down feelings on paper

Emotional:

Feeling your feelings - trying to find support which acknowledges them.

Go through experience in your head.

Keep one body area free and sacrosanct.

Scars and Body Image:

Look at body image separate from scars.

Stare back!

Going sleeveless in some places, having a cover for other less safe areas.

Positive contact with our bodies ie Indian henna painting.

 

General:

Setting boundaries with others raises self-esteem.

Harm just one facet of a person - identity not just a person who harms/doesnít harm.

Feeling strong to hear of others harming less.

 

 

I think the Risk Reduction conferences and the resulting book Cutting the Risk, were important milestones in the history of self-harm activism, not least because they were the first of their kind but clearly the issue of harm-minimisation remains important to people who self-harm and supporters, given Cutting the Risk which is also available via MIND has been one their best selling books.

I have seen increasing acceptance of the concept by mental health professionals and I think this helps to sideline the more unproductive interventions such as "No self-harm contracts".

I would like to see A&E, practice nurses, and mental health nurses joining survivor activists in using this in their work, these two professional groups are particularly well placed to do so, so hereís hoping activists and nurses might come together for Risk Reduction events for professionals. If we can take the risk, so can you!

Can harm-minimisation be done with young people or children?

In my travels Iíve heard foster parents talk about doing so but obviously adapting the principles to the age group. As for teenagers and young adults I think it is essential. I feel sad when Iíve seen young people with severe scarring caused by a lack of wound care or even reduced mobility. I look back to when I was a teenager and think how lucky I am to still have all my limbs intact, Iíd like to think that future generations of young people who turn to self-harm will have more than luck on their side.

 

References

 

Bryant, L & Beckett, J (2006). The practicality and acceptability of an advocacy service in the Emergency Department for people attending following self-harm. University of Leeds, Academic Unit of Psychiatry & Behavioural Sciences.

Campbell, P. Unpublished paper [2005]

DBT [in conversation with health professional]

NSHN (2000) Cutting The Risk: Self-harm, Self-care & Risk Reduction. London: NSHN.

Pembroke, L. Damage Limitation [2000] Nursing Times, Volume 96, No 34, August 24, p34

Pembroke, L. Speaking for Ourselves [2000] unpublished conference paper, first Dutch self-harm conference with survivor speakers, Netherlands.

Pembroke, L. (2004) Medical Pornography. Openmind, 130, Nov/Dec, p. 12.

Parry-Davies, M. (2000) British Journal of Plastic Surgery vol 54 no 2 page 185-186.

 

 

Dedication

I dedicate this chapter to my dear late friends Ros and Dee Dee.