Discussion of note writing in Recovery In The Bin

Help needed! I am a trainee therapist with prior lived experience of the mental health system including forced treatment and serious iatrogenic harm. There were lots of reasons I decided to train as a therapist, partly because I believe in the power of storytelling, meaning making, witnessing and a providing a safe space for someone to speak their truth, and partly because therapy was the core thing that helped me reclaim my sense of power and allowed me to heal.
Also, I guess because as a peer-support worker I got fucking sick of not being taken seriously or given any support by mental health services in my work with people, and my comments about the injustice of the system being constantly discredited as me having a ‘chip on my shoulder’.

Things are going well in my training thus far. I’m now in my first placement, but have hit a roadblock. I am finding it extremely hard to write notes about clients (which I am legally and ethically obliged to do) in a way that I’m comfortable with, and sits right with me from a power and social justice perspective.
I am finding just the simple act of sitting down and writing *about* my clients to be an act of objectification and it feels like a huge power imbalance. Why should I be the one who defines how things are going, what progress is being made? Why am I the one who gets to record our journey together, who gets to write history? I also remember how much anxiety I felt about my own case notes when I was in the MH system, and how acutely powerless and voiceless that big brown file made me feel.

So… I am mulling over the idea of co-writing my case notes with my clients at the end of each session, rather than writing them alone once the session has ended as I am being trained to do.

My thinking in how to do this practically, is that I will keep the amount of therapeutic time exactly the same so people don’t feel they are losing out on time to talk, but to extend the session to 55 minutes rather than 50 in order to write a brief summary of the session together in the final 5 minutes. I imagine the process being quite informal, but me just asking the person I’m working with what they felt the key themes or ideas of the session were, that felt important to them, and then for me to share my take on things, and then we collaboratively agree a way of wording this that we are both comfortable with as a written summary of the session.

I am a bit concerned about what I would do if a client is upset or experiencing a strong emotion at the end of the session (which currently seems to happen about 10% of the time) where switching to reflective mode could be counter-productive. I was thinking that in those instances I might call a ‘raincheck’ on the note-writing for that week, then do my side of the notes alone and then share those at the start of the next session, when things have settled down, and ask if there was anything they might add before we begin.

I am genuinely interested in what people in this group think about this as an idea. How would you feel if your therapist, (or CPN, support worker, psychiatrist etc.) asked you to be an active participant in writing your case notes with them? Would this feel helpful or overwhelming? A burden or empowering? What would be your hopes, as well as your fears or concerns?

I am interested in hearing genuine reactions as I am not attached to this as an idea yet (nor the way I’m thinking about going about it) I’m just exploring this as an option right now.
What do you reckon? Feedback would be so much appreciated!

– I would want a therapist to take notes. As a patient I would find it overwhelming to help with this, usually just wanna leg it and have space. Had a million therapists and only one was good.

– I totally get this. I think in my own journey there would have been times when I would have found the process of co-writing empowering and times I would not have been able to cope. Would you like to have been given the option to co-write them, even if you ultimately turned it down as not being right for you? Or would even being asked feel like too much?

– I think I would just see it as the therapists work.

– That’s really helpful. I appreciate you sharing your perspective.

– For example, I had a therapist who obviously couldn’t remember our last session, he tried the best he could to manipulate it into a weird thing where he wanted to understand why I couldn’t remember, little did he know that I can very rarely rember conversations. Then finally I just asked him if he could tell me, and he couldn’t, as he didn’t take notes. Didn’t pay him and left.

– I am not surprised you did not pay him. I can understand a therapist not remembering a specific detail from a session because even with taking notes you can only record so much, and many people are loathed to put too much detail about the content of the session in their notes because of concerns about confidentiality and also therapeutic notes are increasingly being called on for use in court cases, so many therapists are anxious about writing too much in case it is later used against their client. If you have 20 clients it is hard to hold lots of detail in your head, it’s not an easy task to remember so many names, events timelines etc.

Also the nature of memory is that in a conversation of 2 people, both will remember the elements that felt most important to them, which are very rarely the same (one of the reasons that co-writing feels interesting to me) So I have found that that in my own practice I am prone to sometimes forgetting specific details, or if a client starts a session with something like ‘what you said last week was really interesting’ it is amazing how often I assume they are talking about something different to what they remember as important.

However when this happens I try to be honest and just apologise that I can’t always remember details as clearly as I would like in an ideal world. However all too often I have seen professionals try to avoid seeming ‘incompetent’ by doing something like your therapist did and turn their lack of recollection into a problem with the client. Also your story demonstrates why notes are important. I’m not anti-note taking I feel they’re essential so that important information isn’t lost. I guess I’m trying to get the spirit right in the way I go about writing them.

– Is the problem not that you are working with too many people? Ratios is a difficult thing to manage…. I remember once upon a time being a play worker and our ratio could be 40-1 at times, for an adventure playground. Safe to say it was manic. Problem is that it was state funded and it was affected by austerity, which had adverse effects on both our well being as workers and the kids quality of fun and attention and safeguarding.

– Wow that does sound manic! No currently I am only working with between 2 to 4 clients at any one time as I am training, but even at that ratio a HUGE amount of information can get disclosed in the average therapeutic hour. I do think that ratio becomes a problem for qualified therapists though, especially those working in the NHS. The average caseload for a therapist who has qualified is around 15-20 people weekly, and I can imagine even from working with 2-4 people that after a while that must become impossible to hold so much detail in your head.

But I think my problem here is less about memory recall and more about the power-politics of the situation. I’m genuinely interested in moving away from institutional, medical-model driven approach in the finer detail of my practice, and so often case-notes are written in this spirit. I’m also interested in exploring ways of working which don’t assume the therapist is the ‘expert’ in the situation or the only one with the power to interpret, plan and record information. Of course I have professional skills and of course the power imbalance is also a reality I can’t escape from, but I do want to work in a way that sits well with me and does the least harm.

– I think it’s a good idea to give people a range of options, I’d really like that from you doing notes and the person not seeing them, to joint writing, or the person seeing your notes at different points and adding or amending. I think you’re being thoughtful and I like your thinking.

– That sounds great. If that kind of reassurance could be portrayed in the sessions it would be ace, I agree with what ….. says above

– I really love the idea of a range of options. That hadn’t occurred to me and seems a lovely potential solution to me. I’ve found your feedback so helpful, thank you.

– Think ……has a good idea in the therapist writing notes that a person has the option to look over together with you at intervals… Depending on the person that may be set increments of time when you ask if they’d like to reflect because you feel it has been a significant period of change and you want to check in with if the sense you have is shared so the records are accurate, or if a person is in a frame of mind to be more proactive in the process then it could be left up to them when these intervals occur. I’m just thinking out loud. I love that you are asking these questions.

– Thanks your thinking out loud is very helpful and it’s good to hear so many different perspectives on this issue, I’m finding the feedback I’m getting so valuable. I think balancing the administration with the therapeutic process (which by definition constantly changes) is going to be the challenge, but it just feels like flexibility and good communication will be the keys to navigating this. It is going to be an interesting learning curve for both me and my clients and I’m sure in the beginning I’ll make mistakes and be a little clumsy in my handling of all this, but I find people are remarkably forgiving of mistakes if I can own them and just apologise when I get it wrong. I am excited by people’s feedback and excited about the possibility of a slightly different way of working. Feeling grateful to RITB right now!!

– Definitely, people appreciate the effort

– Best therapist I had made notes throughout our session, photocopied them and put them in the mail to me. Getting them a couple of days later at home where I could read them when I was ready to, reflect, work through anything I needed to and bring back anything it raised or I wasn’t sure about. Absolutely brilliant and I still have some of them over 10 years later!

– I do not feel qualified to comment on any case but my own, but if I was lucky enough to have someone like you as my therapist I would be pleased to be involved in the write up. In my case what talking therapy I have had has not been painful or even a chore. Perhaps it is significant that I have had no serious professional help for some 20 years when I looked forward to my visits with an excellent psychiatric nurse. SRMN. Your approach as you describe it reminds me of these sessions. All the talking help I have had or feel I can get now is likely to be a student or zero hours unqualified worker reading exercises from mindfulness books or the ridiculous online CBT. Perhaps at the moment though I do not need any help as I am functioning OK in the ESA support group being left entirely alone (for now). I do want to wish you well and tell you that I found your post refreshing and encouraging.

-Thank you for your thoughts & feedback. I too had a CPN with an amazing perspective who made a big difference to me. I worked with him for 4 years when I was in my 20’s and before I was remotely ready for therapy. It is sad to me how much CPN time is being cut back and how the therapeutic aspect of the CPN role is being reduced and reduced and reduced into being a box ticking exercise in micromanagement.

Also agreed about the current state of therapy, the idea of an online self-help website being ‘therapy’ is a nonsense to me (not that self help can’t be helpful but that is what it is!) and yes the mindfulness bandwaggon grates on me too. I am lucky enough to be practicing in a placement which provides free therapy for trauma survivors but such services are few and far between and our waiting lists are too long. I also have zero idea how I will manage to work with the people who most need it once I have qualified and need to earn money from at least some of my work, there are so many issues around the power structures of access to therapy that need addressing!

– Giving the client options sounds good. I like this idea but know at the end of some psychotherapy sessions I was desperate to leave, or needed to hold on to my feelings so stopping for notes wouldn’t have worked. Equally at the beginning of sessions there may be a burning issue, which notes would distract from. I think though that having an appropriately timed ‘admin’ session with advance notice where the client has the option to add to / amend notes would be helpful – for me that would’ve helped stop that fear that I was falsely represented in my file. It may have also been too overwhelming though. Difficult to gauge and everyone will be different but it’s reassuring that you feel this way.

– Yes, I think that it would be a more accurate or honest reflection of each encounter/session if you were to write notes with the clients…not all therapists write notes as far as I’m aware. If you do write notes I think it is better not to speculate! All the best in your work.

– You’ve got to watch that false info doesn’t make it into your notes. My ex-husband maliciously made a false allegation of domestic violence against me and that ended up in my notes as a “fact”.

– Notes should only be about and from the person in my view. Another suggestion would be if the person wanted to have input but not every week, that a monthly or whatever frequency could be on offer for a read through

– Yes, inaccurate notes can be hurtful – damaging…

– Ritb group rules! sooooo anti therapy due to all the crap ones, ace to read this thread and it sounds positive.

– I’ve just realised that I put my faith in someone as a therapist who is a nice enough person but…zzz…my mental health is no better for seeing him. People are very limited and it is a mistake sometimes (often) to do as I did.

– It’s really important therapists have good social awareness it’s just not good enough when they see claimants/people in poor conditioned low paid work and don’t get what that means, “I don’t know much about that”, maybe that should be part of training

– Yes, some therapists would appear to be in ivory towers (of sorts)…I read a book ages ago titled: “Therapy Means Change”. The writer argued that society needs to change, not the individual.

– Yup the ivory tower thing is a very real problem. I think there are huge equality issues about even accessing therapy training, especially in the humanistic or psychoanalytic traditions. Mine costs £10,000 each year for 4 years, the total costs of my training including foundation diplomas will be close to 50 grand. There are no loans or bursaries available which makes it systematically impossible for people in difficult financial circumstances to qualify as a therapist. Not to mention barriers because of health, disability, having kids, or other factors.

Counselling training is a little more doable because loans are available for some courses and the training is a bit less intense / lengthy but even that is too much for many people with lived experience. I am very unusual in my training group not only because of my MH history (quite a lot of therapists will have had some form of MH issue but I am unusual in having more longstanding issues and experience of psychosis etc) also I am from a reasonably working class background, comprehensive school education etc when many of my peers are both very southern and private / public school educated. I lucked out because my husband who I’ve been with since my teens did a PhD and now works as a lecturer and we don’t have kids. If it wasn’t for his salary training simply would not have been an option for me. I’m still having to work 2 jobs to pay for it but it is actually possible where as for many other skilled peer support workers and SU activists I’ve worked with it simply wouldn’t have been even though they had skills in abundance. I am so aware I’m in a very privileged / fortunate position. The ivory tower thing is a reality as much to do with the class/social backgrounds of most therapists rather than something inherent to the role. It makes me so angry it is this way and it needs to change!!

– Need more like you

– Trainee therapist with NHS?, because if you practice privately you don’t have to write notes.

– Need some surely unless you have a photographic memory

– My therapist never does, and we both feel liberated about it.

– Wow impressive

– It depends on whether the therapist is accredited and who they are accredited by. Because I am registered and being trained it is part of my ethical code that I am bound to that I need to keep some form of record of the sessions, and if I did not keep them I could face being de-registered. However not all therapists are accredited and there are different accrediting bodies, with different rules and expectations on this issue. Also, I personally have slight memory issues due to damage from meds and my own trauma history so I personally wouldn’t be comfortable going entirely note free, although I know some people who would not work any other way.

I think it really depends on your own skills and capabilities, and your stance on this sort of thing. A nice thing about therapy in general is that we do still have freedom to be flexible in our approach to these things. It’s nice to be able to ask a group like RITB and get feedback I can actually utilise in my practice. Not many professions have the same flexibility.

– Writing notes could actually breach confidentiality/confidence/trust…it all depends upon who else reads them (if anyone).

– I don’t disagree. It’s why it’s so important to me that I give this maximum thought and careful attention. Because so much damage is done by carelessness even when there are good intentions, and through not considering the impact on the person.

– I remember when Bradford Home Treatment team gave Survivors the option of writing and keeping their notes at home.

– I did not know that – was this something you had direct experience of? Did it pan out well in practice? I would be so interested to know the impact it had.

– No, I didn’t have direct experience but knew it was something team offered. The service won a beacon award back in the day and Service User satisfaction was high.

– Thanks for the info I will investigate more about this 🙂

– Oh yes I remember that

– I would like the option personally, though I wouldn’t always take it. Even just being given the option would make me feel safer and more respected and seen and empowered.

In terms of the content of the notes, I agree that sticking to what actually comes up and is discussed in session without speculation is best. One of the most triggering things for me in seeing past clinical notes was my psychiatrist taking careful notes on how I looked/ nonverbal actions and speculating (wrongly) on what they meant in terms of my mental state. I’m autistic and being perceived as more anxious or depressed or “worse off” because of not making eye contact or stimming more, which for me are actually signs that I feel more comfortable and trust the person I’m with, felt super invalidating. I wish she would have asked what my actions meant for me as opposed to just assuming. I was also really bothered by the demarcation of notes into “subjective” (my narrative) and “objective” (my psychiatrist’s interpretations). I was really offended that her often wrong or incomplete interpretations got to be classified as “objective”. She was the first psychiatrist I had that I actually liked and trusted so seeing those notes at the end of our relationship felt like a betrayal and it made it harder for me to trust therapists/ psychiatrists.

– This is such helpful feedback and touches on so much I’m afraid of in the potential harm of writing notes – that a pretty healthy relationship can become invalidating by this kind of practice, and I’m sorry to hear that an experience that was previously positive got tainted by the experience of reading your notes. I too would have felt betrayed in that situation, and your experiences are at the very heart of the issue for me.

The form of notes you refer to are generally called SOAP notes, which split between objective and subjective and they are just so dangerous in the implicit idea that the therapist has the ability to be objective and to step in neutral position of defining what is ‘fact’. I’m training as a therapist, which at its heart rejects the idea there is such thing as objective truth or that any one person can possess it. So the idea of writing SOAP notes (which are becoming increasingly popular as a format and used by many placements) is not only counter to my ethical principles but all the theories at the heart of my therapeutic training, so I refuse to use that format full stop.

– Such good points

– There’s no such thing as objectivity with human distress and relationships no one can be in possession of an unquestionable truth

– Yep. This is my entire stance and to me is at the heart of this issue. The idea that having done a bit of training and got a certificate that I can suddenly be objective whilst my client can only ever be subjective is ridiculous. We are both absolutely bound by our own subjectivity in that situation, as you say human distress and relationships are so complex they can never be fully pinned down, and both therapist and client will be profoundly influenced by their culture, personal relationships, their own history, social and spiritual background and world view when making meaning of a situation and it can never be any other way. It is my belief that neither client nor therapist can ever be anything but subjective, but what we can do is try to understand the other’s perspective as fully as we are able.

– Of course ……..is right about objectivity being a misnomer…

– The aim is to have “unconditional positive regard” isn’t it? Some people have this ability but most people are more prejudiced than they would feel alright about admitting/acknowledging…Jiddu Krishnamurti talked a lot about “can there be an ‘I’ free from prejudice”…

– Therapists probably worry about failing their clients – especially those who have more serious MH problems. So most people who have the benefit of long-term individual analysis would appear to be the “worried well”. I am in the position right now of feeling that I have failed my therapist…a difficult position to be in really. My tendency is to put people on pedestals and not see that failure in those terms involves 2 people – the analyst and the analysand.

– …An interesting conv. Thanks. I hope y’all are having a good day in spite of this highly oppressive ‘political’ climate…more later. ‘bye 4 now, 🙂

– Always good to try and quote Survivors in notes as much as humanely possible.

– Might be useful to have a few key facts from person, note of something tough coming up so to remember to enquire

– Yes, as a memory aid I can see the value for some people of keeping notes.

– Keeping notes is deemed an ethical requirement, the organisation who govern the course I am training on, so for now at least I am bound to their code of ethics in my training contract and therefore ethically obliged to keep records. Once I have qualified I will have more freedom but for now it’s the system I have to work with. Thank you for your input that’s really appreciated.

– I just had my last session (over 8 months) with my therapist yesterday because she is being redeployed. I don’t think I would like to write notes at the end of a session because I am always shattered and have lost focus at that point. I would have liked to see notes from the previous session maybe halfway through the next (after exhausting the current burning issue and before moving on to other stuff) to comment on or revise them

– This is great feedback, thanks. I think what is becoming clear is that it will vary from person to person what works best in practice, but that the option of co-working and transparency feels helpful to people.

– My instincts are you will make a very good therapist because of your determination to try and get things right between you and the people who you support.

– Thank you that has made me smile so much. 🙂

– I think that notes written by a therapist working outside the NHS particularly a CMHT would bother me far less than those produced by the system. If I was working with a therapist I respected I would trust them to write what notes they wanted and not enquire. I also think 5 mins at the end of the session could feel like the mandatory questionnaires iapt use to demonstrate outcomes. What if a client didn’t want any notes to exist at all as that could then feel coercive. Being flexible over the 50 minutes would be more worthwhile as otherwise it just feels like we should sod off and not take up a minute longer of the therapists time

– There is no FOI when it comes to therapists in the private sector. I’ve had some unhelpful therapist encounters but mostly put them down to experience. I think it depends on how the notes are to be used as that is where power comes in. I also used to feel a bit uneasy at times re any prospect of my case being discussed with a supervisor in case that was due to being perceived as difficult. I know that’s just professional practice though

– When I was in practice, I put almost nothing in the notes. Literally. This was for the protection of the individuals I was seeing. If my notes were ever subsequently subpoenaed, the court wouldn’t get much. I let folks know I did this and why. Sometimes they did co-write notes with me if it felt right to do it at the particular time. In those cases, I continued to keep it minimal but included things they specifically requested, letting them know the risks of including same if I thought there were any. No one ever complained and no one was ever convicted of anything based on anything I wrote either. It feels like a good day’s work in retrospect.

– Very

– Thanks means a good bit coming from a ……..

– Ruff

– What a great thread this has been

– I was not in a position to contribute to notes during my last rounds of therapy, but feel totally disempowered that professionals are issuing their opinions about me to each other and i have no recourse as it was decided I wasn’t able to handle reading my notes (fair, but I’ve moved on a bit). From those notes I might not agree with may come a treatment plan which will cause harm to me in the long term as misinterpretation is rife.

“Suicide is outside me”

From the Blog – http://www.dariuszgalasinski.com

“Suicide is outside me. Life is sometimes is unbearable. “A week or so ago, I received an anonymous email from someone who introduced themselves as a fellow academic. They told me that they hoped the letter would become a post on this blog. I was also told that my response would not be received.  On some reflection, I have decided that letter is important, though it is likely to be controversial. And so, what I present below is a slightly edited (I was asked to do it) version of what I received. I offer no comment – Dariusz Galasinski.

***

Some time ago you wrote about the ‘It’s OK to talk’ campaign. My blood boils when I hear this. Have all those people telling me it’s OK to talk considered who exactly I’ll be talking to? Family, colleagues, doctor? Family (and friends) will freak out, colleagues will look at me like I was an idiot, the doctor will do risk assessment and call the crisis team. Been there, done that, bought the T-shirt. Well, I haven’t tried with colleagues as I don’t think I have the right to burden them with my problems. Talking in fact only creates more problems, either in your relationships or through escalation of ‘care’, assuming that they will take it seriously (been there too).

So, whenever I hear someone say ‘It’s OK to talk’, I can’t decide whether I want to head-butt them or ask ‘Who the f…to exactly?”.  Talking anonymously to a stranger over the phone? Give me a break.

The other side is no better. Do you really believe that just because you talk to me, somehow I will be fine? I’m sooooo sick and tired of these well-meaning idiots who encourage others to talk to me. Do your words have healing powers? And do you really think that just because you talk to me, I will reveal my most intimate experiences? Experiences I don’t reveal even to people I love. Really?!

How about thinking that suicide is not in me? This is where the talking comes from, doesn’t it? I’m just not coping or have something wrong with my head.  It’s not!! It’s outside me. If you must talk, talk to my life. Life is sometimes unbearable, you cannot talk it down, so you respond, sometimes the response is ultimate. Tough shit – that’s life.

It’s very easy to tell me I need to continue. How about continuing for me? Want to swap? Don’t patronize me with your advice and your suicide prevention strategies. Just f…off.

What stops me?  Love, actually. My children, my partner – my suicide would cause them so much pain. Too much pain. At the moment I can’t imagine myself causing them all this suffering. I love them.  I love them. They are part of me and if I commit suicide…it’s unthinkable. But let’s make one thing clear, though. If I do decide to commit suicide, nothing will stop me. Nothing. It’s only my decision. No, not every suicide is preventable.

 

Schizophrenia

I don’t know what schizophrenia is. They say I have it, but I think “they” don’t understand what it is.

I don’t “hear” voices, I have eloquent and well founded anxieties about the society I live in. My mind is active, sometimes I feel the thoughts of what seems like most humanity. The feeling of we’ve been here before, and that we can still make some sort of difference.

I watch the manner in which the society enslaves everyone to minimum wage while cunningly suggesting we are ‘free’. We aren’t free. I watch as the currencies inflate, and the foundations of the nation’s get flirt with the border of war. I live in the echo of some mid west enlightenment that seems to have eluded it’s descendants. I studied the history and discovered that they’re making us dumb.

I see how people are controlled through culture, language and more importantly slang. What I’ve noticed about the English language is that there are all these words being thrown around by people who clearly don’t know what they mean. Like we have a bunch of people crying about fascism now because there’s now a buffoon as president, completely ignoring the actual fascism that has existed here since Reagan.

See I believe there is a cabal of sick evil fuckers that run the world. And I know that people say shit like that’s a conspiracy theory and you’re crazy. We know I’m not crazy, but we also know they want people to think about people that talk about this stuff as crazy, and you know why? It’s so that eventually when you burn out on trying to get through to your zombie-fried friends, you’ve burned enough social bridges that they can easily slap a diagnosis on you, like I don’t know, schizophrenia, drug you into submission and self doubt to the point where they break you, and you say to yourself, “maybe I am crazy”. Maybe these drugs that turn me into a zombie, fry my brain, dull my moods, poison me, kill my soul, maybe they’re good for me. Maybe life is just this shit for everyone and they know how to deal with it better.”

Then you stay on the drugs, you are co-operative. You buy into a whole mountain of bullshit about brain chemistry. (There is no evidence to the chemical imbalance theory, there is however a mountain of evidence for trauma)
I guess what I’m trying to say is, I’m not a mental patient, I’m a political dissident (you might be one too). We live in a facist country already. If we want freedom we must first acknowledge that we lack it, and then peer into the fright filled darkness and take in the full horror of what is.

– Thomas C Zaugg – Schizophrenia Group

Do you have lived experience? Charity Body have a priceless opportunity

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Researchers with lived experience – opportunity!

Do you want to help shape a new national strategy for physical health research?

Do you have experience researching anything in physical health? Anything at all. Salmonella. Botulism. Tuberculosis of eye. Ingrowing toenails. Flatulence.

Do you have personal lived experience of physical health problems? Rabies. Man flu. HIV. Death?

We can pay travel expenses and you’ll receive £50 to thank you for your time solving all problems in physical health.

We aim to recruit participants who will formulate a holistic strategy in three hours.

– Communicated by RITB Intern and Dog Walker

Discussion of harm minimisation for self-harm in Recovery in the Bin

http://www.independent.co.uk/life-style/health-and-families/health-news/allow-self-harm-mental-health-patients-researcher-patrick-sullivan-reduction-university-of-a7572136.html

“Harm-minimisation is about far more than clean blades which has a place but I can’t support what Sophie Corlett of Mind says about DBT being a method of harm-minimisation. Cessation of self-harm is often the overt or covert aim of DBT, harm minimisation was never pioneered through service user/survivor activism as a professionally devised behavioural treatment as DBT is.
Professional allies such as the late Chris Holley (fab mental health nurse) also didn’t promote harm minimisation via DBT. She led the Royal College of Nursing debate on ‘safer self-harm’ 11 years ago and consulted activists who had initiated harm minimisation work, their thinking was in unison”.

“For me harm minimisation about recognising that it’s not a standalone approach, it’s not a substitute for emotional/psychological/social support. It should never be forced but offered, as no approach suits everyone. It can cover a wide number of areas such as; exploring our own ways of how we look after ourselves, what constitutes care to us (self/others). What presses on us to SH. Plain language & diagrams of anatomy & physiology – to attempt damage limitation you have to know what you’re looking at & basic function ie tendons attach muscle to bone. ‘Safer’ SH such as direction (deep latitudinal injuries can be riskier than longitudinal), blunt implements on leather-like scar tissue can be more dangerous with increased pressure, slowing down, being sober.
Knowing the limits of harm minimisation i.e. with overdoses there’s no ‘safe’ amount, sometimes people are not aware of cumulative damage or lack of symptoms & potential life changing/threatening damage occuring. First aid, wound care, blood loss, infection, temporary makeshift dressings, knowing when it really is advisable to get medical attention”.

“Scar minimisation with wound care, after care, scar minimising products, Skin Camouflage makeup (making it clear that the option doesn’t mean we shouldn’t feel OK about and wear our skin however it looks), creative dressing for scars for people who want options for concealment. Managing others reactions to scarring in social situations and especially with health profs as they tend to be the most judgemental. Scarring in relation to further injuries and the options & limits of surgical scar revision. Crisis planning (for A&E, MH), the use of harm description and treatment and needs proforma’s, and exploring potential personal compromises with one’s self-harm ie placing blade other side of visible structure which if damaged could mean surgical repair or worse. These are a few example areas”.

“For professionals, harm min is not throwing dressings at people and telling them to get on with it, everyone has the right to have their wounds (regardless of surgical severity) to be medically attended to”.

“Harm min has no age or diagnosis limit, the principles are the same whether a person has a diagnosis of depression, BPD or psychosis. Self-harm occurs in people of ALL diagnoses (or none). Obviously with a child it has to be age appropriate. A psychologist once referred to the need to ‘give permission’ to a boy under 10 who was harming his genitals which is of course very dangerous, to harm elsewhere.
I remember her also referring to changing a teenagers ligature to stretchy socks & support workers being taught how to cut them down, so she was not prohibited from harming but assisted to stay alive with practical and psychological support”.

“Even with suicide, harm minimisation has a place, most people whether they’re self-harming or attempting to die don’t typically want to be left with life changing disability such as loss of mobility”.

“No self-harm is risk free but harm minimisation can assist some people in having increased choices without prejudice or judgement as to where they are and where they want to be. Demanding cessation is unhelpful because unless we have something better to offer what right do we have to make that demand. The lifesaving function of self-harm is often overlooked, as in self-harm can prevent suicide, but equally people who self-harm do die by suicide and can be left with no support despite the high correlation between experience of self-harm and suicide. There’s also ‘overlap’ between self-harm and suicide, and there is often ambivalence even with the most (expected) lethal methods”.

“Harm minimisation is NOT the holding of ice cubes or Dialectical Behaviour Therapy (DBT). DBT is a spurious diagnosis specific behavioural intervention which can seek cessation as a goal.I resent DBT being framed as a form of harm minimisation, and mental health services are now driven by an approach of endless ‘distraction lists’ as a ‘therapy’, standalone intervention, or in the name of harm minimisation. This has influenced service user groups”.

“Harm minimisation also isn’t ‘method sharing’ or promoting self-harm as a ‘lifestyle choice’ or ‘sitting in a sick role’. There are examples of harm minimisation within addiction services although I wouldn’t personally define self-harm as addiction, be that psychological or endorphin provoking (which makes unevidenced assumptions about intent and experience of pain)”.

“Thank you I really appreciate your sharing this. It’s empathetic, de-shaming as far as possible ,if that’s a word, fact-based and responding in detail to people’s actual needs. What I got from the article was business-as-usual, but replacing confrontations with offers of clean blades. Not acceptable clearly”.

“Yes I think just dishing out clean blades is a travesty. That has a place (secure services/prisons notably) but WITH an awful lot more around it!”.

“To me harm minimisation is a very personal and progressive process where someone is supported to think about what they want to change/stay the same and then time taken to explore what self-harm means for them and what if anything they would like to do differently and can this be done more safely. Only agenda to support and validate, no mention or aim of stopping”.

“Yes, that’s it!
I really hope we never go back to “no self-harm contracts” ever again where support was withdrawn or forced if the service user self-harmed”.

“Treating the person with respect and never making them feel ashamed might help reduce harm escalation?”

“Most definitely, I’ve always felt that poor or punitive responses actually increase the risks”.

“I think this is so important – providing information so people can make informed choices which might be to SH, to SH more safely or not”.

“A&E tend to see cutting as performing some kind of hobby. I think as well as the physical wound care we also deserve to have the psychological support that tends to be withdrawn where there is repetition of self-harm. The original article and research paper doesn’t make clear that self-harm, and to a severe extent, does happen outside of inpatient settings and there is next to no support for this let alone an admission where anyone stops or allows self-harm”.

Some further reading:

https://www.selfharm.co.uk/get/staying_safe/harm_minimisation

Click to access Harm-Minimisation-Teaching-and-Learning-Guidance.pdf

http://journals.rcni.com/doi/abs/10.7748/ns.20.28.8.s9?journalCode=ns

http://news.bbc.co.uk/1/hi/health/4942834.stm

Click to access 02-Cutting-the-Risk-Practical-Harm-Minimisation.pdf

Click to access 01-The-Hurt-Yourself-Less-Workbook-Self-Harm-Self-Management.pdf

LOOKING FOR ADVOCATES FOR ADVOCACY

Guest Post by Lucy Costa

What does advocacy mean? Advocacy is about speaking or acting on behalf of a disadvantaged person (or group), defending their wishes or rights, and remaining loyal and accountable to them despite pressures to do otherwise. Advocacy is also about changing systems for the better by influencing policy, practices, or laws in ways that will benefit people in our community and protect their rights. It requires commitment, focus, and skillfulness.

Advocacy is about speaking or acting on behalf of a disadvantaged person (or group)… Advocacy is also about changing systems

If you are a person with “lived experience,” a “peer,” or a “consumer” then please understand that this, in and of itself, is not valid enough

Photo: Marchers carrying signs, walking down Queen Street. Text:
Mad Pride Bed Push 2017

criteria to be a good advocate. While your identity and your experiences (especially as related to mental health) matter, they alone are not sufficient to challenge some of the tricky and complex institutional and governmental powers influencing our understanding of psychiatric disability and the distribution of resources (e.g. housing, services).

If you are a person with “lived experience,” a “peer,” or a “consumer” then please understand that this, in and of itself, is not valid enough criteria to be a good advocate.

I start with this controversial point because over and over again, the most popular advocacy “line” people offer at consults, focus groups, proceedings, etc. for ethical dilemmas and problems with the mental health system is to ask whether “peers were included,” or if, “peers gave feedback.”

Lately, I have challenged this knee-jerk response, because it is predicated on an assumption that if “lived experiencers” were involved in complex systemic issues, they would somehow be offering substantive or innovative feedback for change. Sometimes yes, but often no – not without research into a problem, or speaking with people most impacted, or developing relationships with supportive allies.

In fact, sometimes the very problems occurring in the system are reproduced via individuals who identify as “peers” or people with “lived experience.” Sometimes these peers adopt excessively cheerful or optimistic views of healthcare system delivery as opposed to critiquing it.

They contort themselves to accept clinical or policy justifications and in so doing become extensions of the system through their actions, words, and ability to be socially acceptable and conformist. I have seen examples of peer workers counselling hospital patients on their “best interests” as opposed to listening or following a patient’s instructions and hearing what would allow them to feel they have more control over their lives. There are very few advocacy and human rights campaigns being spearheaded by peer labourers though I think there is powerful potential for organising for change if community capacity were prioritized in this direction.

Thankfully, there are however a number of individuals and small organisations doing collaborative and innovative work to improve the lives of people who are on the margins and addressing advocacy issues related to violence, housing etc. There are smart, organized, coordinated and focused efforts that work to change and improve specific problems thanks to thoughtful planning, thorough research, and earnest selflessness.

We need more strategies like this which are focused on understanding how the system makes economic and policy decisions and directions. It would be great if younger activists and individuals interested in advocacy would create support groups looking at how to better understand the system, what ethical principles we should collectively adopt going forward, and more importantly how to meaningfully evaluate what has worked and not worked in the past for us – by us.

…create support groups looking at how to better understand the system, what ethical principles we should collectively adopt going forward, and more importantly how to meaningfully evaluate what has worked and not worked in the past for us – by us.

I also suggest that our community develop an extremely inquisitive appetite for scrutinizing anything that sounds like “inclusion.” The system knows it is supposed to be “inclusive” – that is not news to people in power, but what kind of inclusion is happening? We consumer/survivors advocated for inclusion years ago, and now we (to some degree) have it, but at what cost, and what kinds of identity and ideas are being included? An advocacy issue that currently needs attention is the Ontario government’s recently passed Bill 41, also known as the Patients First Act on December 7th, 2016.

This Patients First Act aims to ensure patients are at the centre of the health care system. Are there any consumer/survivor groups organising around this? Probably not. Who will monitor advocacy and the new discussions about accountability in a changing landscape within healthcare? The Psychiatric Patient Advocate Office, which is no longer at arm’s length from the Ministry of Health, is going through re-evaluation of its services to better align itself with Ministry initiatives such as the Patients First Act. What will this mean?

If we are to re-invigorate a movement that believes in justice, advocacy, and the protection of rights, we need a new approach that understands that while some gains have been made, there are many other losses we have not even begun to process—let alone respond to intelligently. The landscape of advocacy is changing and the fire of the past has dwindled.

We have fewer advocates. This is true amongst different groups and social movements looking for change.

The pendulum has definitely swung in disturbing directions, but it will swing back. In the meantime, we must be more aware of the losses of certain rights and be more resolute in our efforts to critique “inclusion,” especially the ways it has been used by neoliberal agendas that expend with both advocacy and individuals who cannot thrive in capitalism.

Written by Lucy Costa

This article was originally published on Toronto Mad Pride  http://www.torontomadpride.com/article/looking-for-advocates-for-advocacy/