I'd like to submit my response to this consultation.
I'm afraid the survey wasn't a suitable way for me to respond. My response is below.
I'd really appreciate if you could read my views. Thank you.
Best regards
Arj Subanandan
______________________________________
Part 1
Disability rights and coercion
The vision of humane and ethical healthcare present in the draft document is laudable and welcomed however my sincere opinion is it does not go far enough to protect people with psychosocial disability from harmful medical practices.
The UN Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment has evaluated forced treatment, forced drugging, restraint and other nefarious mental health practices as torture and something to be banned. They are a fundamental violation of human rights supported and enforced by healthcare professionals.
People with psychosocial disabilities should not be forcibly treated or abused, a standard of human rights with is clearly - from the draft document - an alien principle to today's and the future's nurses. Healthcare harm will continue regardless of the awful impact it has or the obvious and unconscionable violation of human rights.
Forced treatment is the ethical nightmare for the medical profession. It is inhumane, degrading, torturous and punishing to the patient. This is the diametric opposite of humane and ethical healthcare. I'm afraid this sense of the severity of the rights abuse and, even worse, the clear and present harm done to the patient and their relationship with healthcare providers isn't sufficiently stated and appreciated in the draft consultation document.
The document states something like "health professionals should not use restrictive practices to harm, humiliate or punish the patient" and this too is a welcomed statement but it contains a conceptual oxymoron: forced treatment is fundamentally harmful, humiliating and punishing to the patient and healthcare professionals should be aware of this damage and bear responsibility for harming their patient, violating their rights and bring the noble profession of nursing into disrepute every time they forcibly treat anyone. A nurse's state of mind while forcibly treating a person does little to ameliorate the visceral harm to the victim. This needs to be elucidated in the document lest staff forget the immorality of this necessary evil, an elucidation which is clearly required given Mind's evidence.
Rather than wasting words on relaying my own traumatic experiences of forced treatment and illegal detention to communicate the victim's visceral horror caused by restrictive practices - I'm sure the mental health charities will collect those and communicate them in the consultation - I'd like to use an image.
.
http://en.wikipedia.org/wiki/File:The_Scream.jpg
The Scream by Edvard Munch, 1893
I feel this is a communicative image, one which victims of forced treatment could identify with. It conveys to me the horror of the victim and the feeling of a distorted sense of reality - or "lack of insight" as psychiatrists call it - when their healthcare suddenly becomes forced. I hope it conveys the urgency of the harm done to an individual but if not I hope the following text does.
It's simply awful and it shouldn’t happen to anyone because it is so awful. The goal shouldn't be limited by "minimisation" which should instead be "elimination" because - I hope - the nursing profession recognise the immorality, trauma and harm of forced healthcare so they set their vision to be a future where it never needs to happen.
Given this radical interpretation - one which should be heard and is, in my opinion, valid - the explicit goal should be the elimination of forced healthcare. This is the human rights standard however the Human Rights Act was a pragmatic document written at a time of significant mental health prejudice. This and other human rights legislation aren't comprehensive in the rights they guarantee to all because people with psychosocial disabilities - addicts, vagrants or other people of unsound mind (I believe this is the HRA 1996 definition or close to it) - are denied the same protections and freedom from torture and forced treatment as free citizens.
These inadequacies in disabilities and human rights are why the Convention for the Rights of People with Disabilities (CRPD) was established and it is as essential a tool for disability rights as the HRA 1996 (or 1998…) is for other citizens.
In the draft document the ideology and implementation of the CRPD are absent and this dramatically affects the value of a document written to validate restrictive practices on people with disabilities without considering our inalienable human rights not guaranteed by antiquated legislation but enshrined at the core of modern disability rights instruments like the CRPD.
The vision must be aspirational to the goal of elimination of forced treatment. With this suggestion that the RCN choose a vision so pure and unlikely to be achievable given current constructs of mental health/psychosocial disability and medicosocial imperatives I would likely be labelled manic or delusional for even suggesting that nurses must adhere to a high ethical standard of judgement about when to use restrictive practices on a fellow human being.
Hmm…they might be right too. Regardless, I can't reinforce my point enough. All restrictive practices are a terrible wrong when used against anyone but their use in the treatment of people with psychosocial disabilities is a fundamental wrong. It's the product of prejudice, not science or legal jurisprudence. It can only be used in the absence of alternatives but this isn't good enough and the CRPD - the landmark disability rights convention - is being disregarded.
Suicide, criminal justice jurisprudence and humane nursing practice
Here’s the rub. Suicide is no longer a crime because a compassionate society realised it was stupid to punish suicidal people with imprisonment. The mental health system took over but it sort of forgot the principle of genuine compassion for the suicidal. Forced treatment is inhumane but it is wrought upon suicidal people today and is encouraged in this draft document but this is another rights violation which is a product of mental health pseudoscience used to subjugate an individual's free will.
Let me explain. I don't think I've met a mental health professional or any person who's legitimised or validated my desire to die (there was a homeless guy who I tried to persuade to kill me but I think he wouldn't have and would just take my money). The pervading mind-set is suicide is only ever wrong. It's assumed no one would rationally think of killing themselves.
I'm afraid this is wrong and the mind-set is the antithesis of that which decriminalised suicide. I'm radical enough to consider forced treatment of people who would likely murder someone else shouldn't lose their liberty purely on their dangerousness because that's the guarantee the criminal justice system gives criminals: they will not be imprisoned without due process (jurisprudence) and guilt must be proven rather than the estimated risk judged solely by a psychiatrist or nurse with restrictive powers. Certain nefarious amendments to the Mental Health Act 1983 introduced dangerous powers of forced treatment and deprivation of liberty based on the risk of "people with dangerous personality disorders" committing a serious crime. (Reference available)
What is infinitely worse are the experiences of those who are not committing a crime but are victims of the mental health hegemony's abuse of forced treatment powers regardless of the fundamental human rights violation. What I'm talking about is the chronically suicidal (which I define as someone who experiences at least three months where there are more days associated with considering or wishing for death than days without) and what the mental healthcare system does to us.
Suicide is not a crime but the mental health system still incarcerates people who are chronically suicidal and fail an attempt. Psychiatrists will seek to label us to pathologise our desire to die and dismiss the validity of our desire to die using psychiatric diagnosis and the associated construct of madness to dismiss our free will.
I'm well aware that some people attempt suicide in the heat of the moment, impulsively and usually shortly after a triggering event which drives them to a lower state (e.g. becoming unemployed, becoming single, bereavement). The mental health system's mode of suicide prevention has delivered significant progress in ensuring these 'virgin' (first time) suicide attempts are unsuccessful. Making effective methods harder to acquire ensures people don't make a regrettable decision to kill themselves. I remember trying to kill myself after splitting up with my first girlfriend. It was a pathetic attempt under pathetic circumstances and I would have regretted succeeding shortly afterwards.
What the RCN may be unaware of are the wishes of those who have wanted to die for a long time and what constitutes humane and ethical treatment. We live a hell of a life made only worse by the unavailability of effective, painless methods with which they can escape a reality we no longer want to live in. The imperative to protect people from committing a suicide they'd regret has ignored the rights of those who rationally choose death and would not regret their death.
This other state of suicidality is not an illness and it is not an insane or unreasonable or spurious desire. It is what happens when a psyche is harmed too much and there is little the mental health system can do (in my decade or so of treatment) to help the chronically suicidal. The evidence base necessary to know what treatments will work for suicidal ideation doesn't exist. High quality psychiatric research uses complex measures and I'm not aware of any reviews or meta-analyses which investigate the single dimension of effect on suicidal ideation alone reported in high quality trials; this is one of the problems of the current syndrome approach for meeting patient expectations of treatment.
Too few mental health professionals know that there are those who rationally and consciously want to die and have felt like that for a protracted period, at least in my experience. Nurses will make all sorts of arguments which disregard the validity of my emotional experience in a way which only makes me angry at being oppressed. The worst nurses have tried to make me feel guilty for wanting to die, as if that's the silver bullet which will slay the werewolf of suicidality?!
My recent experiences might help me communicate this difficult point. Last year I took a serious paracetemol overdose. I had an advance directive refusing treatment but this was overridden. I'd been acquiring paracetemol for a while and mental health services were aware of my desire to die as well as that I was acquiring the methods to do it. I want to die and it is not a spurious product of biological difference which makes me feel this way nor some whim of an over-emotional suicidal ideation virgin. I am a veteran of suicidal ideation and my rational, contemplated decision is suicide. I commit no crime either. Nonetheless I was the victim of coercive treatment and loss of liberty: I could not rationally want to die in the opinion of the 'care' staff who forcibly treated me. I woke from a chemically induced coma then shortly was dumped in a psychiatric ward where my misery at being trapped in a psychiatric ward was symptomatic of depression and needed my confinement and - had I not complied with treatment - could be a reason used for prolonged incarceration without having committed a crime.
There is no consideration of the rights of those who consciously choose to die in this RCN draft document or what our lived experience of 'healthcare' feels like but there should be because it's nurses who fuck up my life and make me want to avoid mental health services. I want to die. My happy thought is my death and I pray for it. And then, to add insult to injury, I get forcibly treated which is an additional harm to all the other ones which have made me so certain that my death is my only salvation.
Part 2
Measurement and oversight.
My first criticism is the absence of national monitoring of the use of restraint and other harmful, dehumanising protocols used in mental health crisis settings. Mind's evidence which highlighted the abject failure of mental health professionals to use restrictive protocols as a last resort should be collected as a routine statutory data return by the government to ensure the public's faith in ethical and compassionate mental health services is justified. They can provide the evidenced-based oversight which is sorely missing from NHS mental health and social care to protect victims from abuse.
Without national standards robustly enforced by a national performance management framework there will always be regional variations which constitute abuse. Local level monitoring is clearly not enough to protect patients from abuse of their rights.
It must be recognised that restraint is a breach of human rights and is harmful but is deemed a necessary evil by psychiatrists. It is clearly open to abuse but it required an independent mental health charity to collect the data which clearly demonstrates that the rights of people with psychosocial disabilities are being flagrantly ignored. The response to the problem is a welcomed move but psychiatric rights are easily ignored as has already happened. Without Mind's protection the human rights catastrophe would have continued. I'm concerned some of the abuses which have happened to me (illegal detention, inappropriate seclusion and downright immoral acute tranquilisations) will continue to happen given the quality of the RCN draft document as it stands.
Robust protection will only be established by using the same standard of national performance management used in children's social care for a decade. It's a system I've worked in and my experience is without stringent management social care professionals fail in their (albeit difficult) duty. Large systems such as the mental health and social care system desperately need proper performance management with standardised systems and a national performance management framework because without it the proposed system will undoubtedly fail patients just as it does now.
Getting the government to collect the data through a statutory return means much better detail can be seen and more calculations of performance done on the data. National-level monitoring offers the best protection which is the primary reason children's services use it. Mandating the data be submitted to the government also ensures data qualities - veracity, completeness and timeliness - are guaranteed to be high otherwise local reporting could result in poor quality data and therefore poor protection against abuses already evidenced by various sources.
Cracks in the cracks
Mental health and social care exist to fill some of society's cracks which some people would slip through much to their detriment. The system isn't perfect and some people end up falling through the cracks again.
This is something I saw in the management information data which didn’t get sent to the government when I worked in council children's services. The government wanted averages and so the council only looked at averages. Obviously the average doesn't quantify the outcome of those worst off.
A Key Performance Indicator (KPI) measured the number of placement changes in a year with 2 as the target and the council I worked at scored well on this important KPI. What wasn't reported was the story of the child with the worst placement stability. She had 14 recorded changes in one year and was being failed by the social care system because of her social worker's nihilism (something which naturally happens but doesn't get acknowledged enough) which meant her life was ignored.
Once the information got to the management team they acted quickly and this was possible because I told them about the worst case, the one who fell through the cracks in the cracks.
I don't know how frequently local performance management frameworks include this sort of measure today but I would strongly encourage their use. It could save lives and if it were also included in national performance management frameworks it would ensure all mental health and social care organisations also record and report their greatest failures so they can be solved.
In terms of restrictive practices, those with the highest number of repeated forcible interventions would be one description of those getting the worse experience and one which needs special attention to ensure it doesn’t turn into a human rights catastrophe. There are undoubtedly other measures which could be created as part of a national balanced scorecard which, given the constraints, would guarantee worse case and average case scenarios improve.
The alternative is an anarchic system which continues to abuse patients' human rights and fails in its protection role while, of course, denigrates the nursing profession every time a patient is abused by the use of restrictive practices.
Reporting victims' experience
An essential part of the protection framework should be the documentation of the victim of restrictive practice's version of events. This should be done by someone independent like an advocate to ensure it is properly transcribed wholly and accurately. I'm afraid that it is a reasonable possibility that some NHS mental health staff may not be able to guarantee this as well as an independent person might.
This information would provide census-level data for all people subject to potential human rights breaches by the NHS mental health and social care system and thereby be the channel to protect victims of restrictive practices from abuse and from errors in reporting.
This may be difficult and time-consuming but it must exist alongside incident reporting by staff because a mental health professional's experience of using and justifying restrictive practices can be very different to the victim's experience.
Part 3
Miscellaneous
- Behavioural Support Plans (BSP) and proportionate to the potential harm to the patient. What does "harm" mean? This feels like a mental health best interests valuation but truly no patient gains value by being drugged forcibly to make them calm or even unconscious. My first experience of chemical and facedown restraint was deeply traumatic and still haunts me when I've seen it done to other people.
This harm-by-healthcare professionals needs to be stopped if at all possible. The sense of the distress, psychological harm and trauma experienced by victims does not feel like it has been fully appreciated in the NHS and, unfortunately, in this consultation document too. Restraint is so very awful on the victim and this needs to be impressed on the reader throughout the final document. I believe as many victims of restrictive practices believe: the harm outweighs the benefit.
- The caveat that unforeseen circumstances can be dealt with using an unplanned restrictive practice makes the point of the Behavioural Support Plan somewhat less effective. Unplanned contingencies potentially offer healthcare professionals carte blanche. Surely it would make better sense to have bespoke last resort or contingency solutions included and agreed upon in the BSP. It may mean it takes longer to compile the BSP but it ensures a patient's right to agree to the healthcare interventions which can be used on them.
Unforeseen circumstances must not allow mental health staff carte blanche in the use no restrictive practices however I don't know how this important rule could be turned into something practical, especially for the restrictive practices which could be used on someone without a BPS (e.g. someone brought into hospital for the first time and is deemed without sufficient capacity to agree to a BPS before they are the victim of forced treatment.
- Effect on prescribing practice
I don’t trust most psychiatrists but this prejudice can be useful. When presented with the problem of a vision to reduce their powers of coercion (which is implicitly delegated to subordinate staff) some might opt to use high dose antipsychotics or polypharmacy to get the reward of a zonked out, docile patient. Measures might misrepresent the harm assessment weighing up the harms of restrictive protocols versus the harms of overmedication and multiple medication which - if memory serves me - was assessed to be high enough for the Royal College of Psychiatry recommended against this prescribing practice in their consensus statement on the use of antipsychotics.
I'm not sure how this effect could be measured easily. It is vital to prevent against any prescribing changes caused psychiatrists compensating for restrictions (no pun intended) to restrictive practices. On reflection it probably isn't something for the RCN but I hope nursing staff could report it if it happened. It would be a awful if one harm was simply swapped for another, wouldn't it?
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