Dear Mad in the UK and the British Psychological Society, We are writing in regards to the article ‘Prescribing Rights for UK Psychologists – Should We Be Cautious?’, written by prominent psychologists who are members of the British Psychological Society. Whilst we recognise that prescribing rights for psychologists is a complex issue, we are contacting you specifically about a passage in the article that appears to express transphobic views.
We refer to the following passage, which we also note is the only section without any references, suggesting strongly this is a work of personal opinion by the authors:
‘Gender services The prescription of hormone blockers for people who identify as transgender is a highly controversial trend, raising profound issues, both conceptual (about the validity of a diagnostic category of ‘gender dysphoria’; about the relationship between biological sex and gender roles, and so on) and ethical (the long-term effects of these drugs is untested and unknown). We do not believe that prescribing rights should be extended to psychologists working in these areas unless and until these wider issues achieve some degree of resolution and consensus.’
Hormone blockers are a legitimate and common treatment for those who are transitioning to their identified gender. It is unclear why the authors view hormone blockers as ‘controversial’ or a ‘trend’. No references are provided to support the use of these words. Both words are value loaded, and on reading, appear to undermine the legitimacy of the process of transitioning with hormone blockers to one’s gender identity. It should be noted that taking hormone blockers does not by itself imply an irrevocable commitment to transition, but merely leaves open the option to do so with less dysphoria and potentially less exposure to societal prejudice. Undermining and describing the process of transitioning as ‘controversial’ and a ‘trend’ is transphobic.
We also note that the passage refers to the ‘profound issues’ ‘about the relationship between biological sex and gender roles etc’, again without references to support these statements. We note that the authors use the phrase ‘gender roles’ rather than ‘gender identity’, however, we read this as a veiled statement referring to the opposition by some to the very idea of transitioning, emphasizing biological determinism over trans people’s lived experience as a different gender to that they were assigned at birth. This is a transphobic view, and by including these controversies in their article, the authors legitimise these views.
To provide a context to our concerns, please see the current Stonewall definition of transphobia: The fear or dislike of someone based on the fact they are trans, including the denial/refusal to accept their gender identity.
We are therefore, writing to you as publisher (Mad in the UK) and professional body (British Psychological Society) to request that you investigate these statements. We would also like to highlight that this is not the first time some of the authors have expressed transphobic sentiments.
Recovery In The Bin Manchester Disabled People Against Cuts The London Bi Pandas Mental Health Under Capitalism Leeds Sisters Uncut
Service User Research Enterprise (SURE) team: Diana Rose Stan Papoulias Akriti Mehta Ruth Silverleaf
Alison Faulkner Jayasree Kalathil Len Demetriou
CliniQ CIC Michelle Ross (founder cliniQ CIC) Vincent Turner (psychotherapy lead cliniQ CIC) Martha Dunkley (director cliniQ CIC)
National Union of Students Piers Wilkinson, NUS Disabled Students’ Officer Eden Ladley, NUS Trans Officer Rachel Watters, NUS Women’s Officer Liam McCabe, NUS Scotland President Robert Murtagh, NUS-USI President
Daira Hopwood Shabaaz Mohammed Dennis Queen Mx J.M. Welch Dr Sally Morgan, Clinical Psychologist Ms Sali Owen, LGBT+ Group Facilitator for Forensic In-Patients Sally-Anne Beverly (University of Leeds) Sue Sibbald Dr Joanne Edge, survivor Robin Edwards, Notts Trans Hub Stephanie Allan Sue Phillips Josephine Sirotkin Edie Boon Dr Aylwyn Walsh, Associate Professor, University of Leeds Clare Bonetree Dr Alexandra Richards, Clinical Psychologist Rachel Rowan Olive, service user / survivor Karen Pollock GRSD specialist counsellor Dominic Davies, Pink Therapy Jamie Draper Sam Hope, MBACP (Accred.) Neil Loffhagen GSRD therapist / counsellor Esther Kaner Nāgakuśala Frugal Sam Feeney, Dip Coun, Dip Gender/Sexual Diversity, Reg. MBACP Dr Mari Greenfield Ronete Cohen, GSRD Psychotherapist, The Rainbow Couch Debbie Helen Wood, trans and talking therapies lead with Outreach Cumbria Rachel Yates, Counsellor Jules Haley, GSRD Therapist / Counsellor Hannah Ryan, Trainee Clinical Psychologist Gary, patient and activist Tony Roberts, Director, Fostering Change Ltd. North Yorkshire Charlie Rodgers
If you wish to add you or your organisation’s signature to the open letter please email firstname.lastname@example.org
Workplaces blame or punish individuals for madness, exclude mad people from work, and fail to recognise the role of work in making people mad in the first place. This is true even of measures supposedly designed to enable accessibility or promote mental health. Sick of this, I asked some members of radical and peer-led mental health groups, along with some friends and fellow weirdos, what they think would make it better to be ‘mad at work’. I collected all the responses, merging duplicates and re-writing stories into demands, to make the list below.
Of course one of the best things workplaces could do for mad people would be to improve their economic conditions. Many folk brought up precarious employment as especially harmful, including short-term and zero-hour contracts, as well as people having to re-apply for or apply for funding for their own job. As long as there is capitalism there will be suffering for mad people at work, exclusion of mad people from work, and madness as a result of work. Although this list is not primarily about economic conditions, is not intended to justify wage labour or erase the harm it causes.
Yet many of the suggestions made below are perfectly compatible with the logics of capitalism. Some mad people just want to get through the day however they can. They want to have a nap sometimes, dress more comfortably, mask less, not get lied to and – perhaps most of all – be subject to less surveillance. These things are cheap, straightforward, and would even enable mad people to ‘more productive’ workers within the grim logics of capitalism. So why are most items on our list still completely unimaginable?
No glass walls or doors for maximum privacy and minimum surveillance
All toilets to be accessible and all-gender
Provision of private nap cubicles
Abolition of gaps around toilet doors to allow for privacy for purging and panic attacks
Provision of luxury harm reduction rooms, including beautiful soft furnishings, safety equipment (wipes, clean needles and razors, sharps bins), and gold boxes for everyone to keep their individual stuff in
No dress codes or norm of dressing gowns, blankets, pyjamas, slippers, bare feet
No more defining mental health as the ability to work
Abolition of counselling as gatekeeping for jobs
End of the use of health and safety and risk assessments to punish and restrict autonomy of disabled people
Abolition of small talk (replace with standard red/yellow/green communication badges every door)
Police uniforms for Human Resources & Occupational Health staff to make their roles clear
Paid time in all workload models for collective organising (including but not limited to trade unionism, direct action, feminist consciousness raising and zine-making)
Free workers’ canteens (with no coercive ‘health’ or ‘normal’ eating)
All contracts mandatorily available as job share
All workplaces to circulate and commit to Recovery in the Bin principles
Worker feedback forms to be located over the shredder for clarity around purpose
No more macho pretend-its-fine culture
Actually flexible working hours
Recognition of workers as humans for whom work is only one part of life
Abolition of workplace communication by whatsapp, ‘fun’ group chats that include bosses and all social media (except personal or political social media use at work)
Time in all workload models for private, skilled, on-demand clinical supervision for anyone who works with ‘vulnerable’ groups
Recognition that learning, not-knowing and lack of enjoyment are inevitable elements of work and not signs of unprofessionalism
Resources to support working from home (e.g. printer and scanner)
Option to get paid based on hours or on task, your choice, with no reduction in pay (maximum 25 hour work week either way)
A sensory room with sensory toys AND integration of those things into rest of work place
No forced disclosure ever
Sound proofed screaming cubicles
Screaming normalised everywhere, ear defenders supplied at all entrances
Employers to pay employees’ union membership
No more suffering as a rite of passage
Education for all employees about madness BY mad people
Abolition of the idea of ‘professionalism’ (otherwise known as ableism, racism, misogyny, etc)
Abolition of ‘reasonable adjustments’, replacement with actually accessible workplaces including accessibility budget for all workers with no monitoring
Wages for housework, care labour and all social reproduction
No more rest or breastfeeding areas in stationary cupboards
Repurposing of ‘common room’s for crafting, animal therapy, prayer, dart boards and punch bags with bosses faces on, meditation, etc.
No more token wellness activities or ‘pledges’
More sharing of unsantized stories (NOT ‘it all got a bit tricky but I’m totally better and promotable now’)
Abolition of requirement to perform trauma and healing for job
No more blaming our mental health for impossible working conditions
By Darcy Leigh.
The making of this list was inspired by the Mad Love Designer Asylum project, in which mad people design their own asylum.
The following is a preamble for Blog as a memoir of sorts – not a rant – to hopefully go towards improving things for BAME survivors (victims?) of psychiatric torture…and to also, hopefully, help to prevent atrocities of this nature from being so free to occur in times future for others.
Racism in the Bin !
I thought it would be useful to start by writing about my own years long ordeal…and I would advise others not to share their stories at this stage in the game or to comment either using your real name…fear of reprisal and/or guilt by association is well founded/understood.
I am informed and aware enough (I think) that there are some good psychiatrists out there but unfortunately we cannot assume that they have enough humility, autonomy or freedom from the herd/autocracy/hierarchical forces to not otherwise be what I call ‘psychiaracists’ such as the ones who said to me years ago :”you do know that you have a black gene, don’t you, which is causing you to be mentally ill”…Glory!
Whatever a person’s colour or tribe might be this doesn’t automatically stop him/her from subjecting a person to ‘cruel and unusual punishment’…the so called nurses who physically tortured me were/are also ‘black’…
My ‘psychiatrist – elect’ is a Jungian analyst. Carl Jung was a Swiss psychiatrist and founder of analytical psychology. Jungian analysis isn’t so accessible unless a person pays privately here in the UK. His opus or great work was/is dismissed by so called normal people who put so much store by ICDeologyconformity/mediocrity/ignorance (?).
Furthermore, I was very surprised to hear that the consultant psychiatrist who diagnosed me as Bipolar when I was about 39 years old hadn’t even heard of Jung – the same psychiatrist who said that I ‘have a different kind of brain’ which according to him ‘lacks the foundations of an ordinary building’…whatever next ?
“Show me a sane man and I’ll cure him for you” – Carl Jung 🙂
No one knows everything there is to know about the mind – fortunately ! – just as no one can predict the future in life. Jung was a gnostic – didn’t fight shy of the ‘mystical element’ …and his writing – as with anyone else’s – has to be seen/evaluated fairly with respect to time of writing and so on…
He was slated by the herd recently enough, too, for being racist…my late former Jungian analyst who was a Jewish woman said he was not ‘racist’ – that he was exploring the collective unconscious, the shadow and his own. Jungian analysts have to know themselves – including deeply understanding prejudices, projections and dark side or shadow – very well before and as part of being/becoming an analyst. I have sampled other schools of psychotherapy/psychoanalysis and found the Jungian school suited me best – not because I am a racialised human being…more to do with having such an expanded consciousness – propensity for ‘manic phases’ – and/or my falling into the unconscious and the ‘numinous’ or ‘mystical’ realm, even, which was initially triggered by my drink being spiked unawares with an hallucinogenic drug at a party many years ago. I also read quite a lot of his writing in my early twenties…beginning with his autobiography titled: “Memories, Dreams and Reflections”…
There would appear to be little or no room for the ‘mystical element’ here in the UK..ICDeology is so reductive – limited/limiting, isn’t it?
“All thought is limited” – Jiddu Krishnamurti
I experienced ‘flashbacks’ which can look like hypomania but is not the same thing…it would appear that drug -induced psychosis and the damage to /impact on the brain of this isn’t actually very well understood. It’s highly dishonest to claim that an hallucinogenic drug triggers an underlying condition…this writer was ‘normal’ or ‘neurotypical’ enough beforehand.
My current analyst has a different approach…he recommended reading “The Drama of the Gifted Child” by Alice Miller…and has helped/helps me to see and understand enough to confront the cruel and unusual position I have found myself in…he said that therapy is about feelings. And. yes, unlike state – funded biomedical psychiatrists whose preoccupation is about control and limitation, really, he gave me a tissue for my tears…instead of dismissing my feelings as ‘lability’ and a reason or excuse to give me even more drugs.
“There’s a fine line between genius and madness”
Psychiaracists don’t acknowledge a person’s intelligence…or care about it either and hence the disproportionate labelling and over-medicating of black folk…a self-fulfilling prophecy perhaps ? Not possible to be or sound intelligent when a person has had a chemical lobotomy !’They’ have also inherited a shared delusion that ‘black’ people are dangerous as y’all know already I’m sure…when I recover the ability to act or appear dumb enough in a chemical straitjacket they’re happy to discharge me. Actually, this isn’t quite so since what typically happened was that they visited a section – legally or otherwise – on me for 6 months and then would discharge me just before the tribunal hearing date …in order to avoid the hearing no doubt.
The one and only tribunal hearing I have had in 20 years – a few years ago – I won…and against the odds if a person was to believe what is written in my psych notes… White female Judge; “Are you saying that although Katy who is now in her mid fifties – has no criminal record and clearly respects the law – is a danger to others?”
Black male psychiatrist: “Yes”
I hope that I never lose the ability to cry – respond to sorrow and to care deeply about people and all the needless suffering arising from and caused by the psychiatric system in particular- even though my tears have been labelled and dismissed /diagnosed as ‘lability’ – where’s the humanity/compassion in that ?
Some of the cruel and dishonest things the psychiatrist said about me at the tribunal even though he’d only just met me made me cry. He then said : “Look, see – she is labile !”
More to say about this encounter/travesty …later…
My analyst said that he knows how dangerous it is for me to feel things…and yes it is such – I am a psychiatric torture survivor after all. I am not ‘free’…apart from being free to be a virtual recluse – free from the ‘usual reign’ as TS Eliot would put it at this great age…
Freedom of expression and/or speech is not a given or honoured as a human right – especially if a person is psychiatrised and/or happens to be from a racialised group – is a black or grey (mixed race) woman with no ‘tribe’ to protect and support her like this nobody-writer…and/or who like me has/had a ‘precocious intellect’ – I was a gifted child…I am not a precocious person though – attitudinally-speaking…am ‘little-headed’ /self-effacing (usually)…very good at humouring people who have/had the power to torture me and decide my fate. However, my grey matter and ability to think critically has been extinguished more or less by all those needless chemical lobotomies and prolonged hospital admissions though now…and all for what ?
“It’s you my love you who are the stranger” – Leonard Cohen
My psych notes made for dark and humiliating reading…and opened my eyes…misrepresenting and demeaning a person in writing is always deliberate. As is/was totally covering up the one and only planned serious suicide attempt on my part during those ‘torture years’- (1998 – 2014) – Not only did they omit it from the notes they didn’t write anything about the reason for my trying to take a fatal overdose either…! The reason/cause being that I didn’t think I could/would ever be free from the haunting/damage of being subjected to total deprivation/solitary confinement (in 2012)…(or free from the fear of further torture given what took place the following year ).. A policeman in the hospital said quite angrily that “Katy is not the problem – the hospital is the problem!”
What a cruel thing to do to a person who started to break down – couldn’t sleep for a number of days – a few months after losing her mother who died very suddenly…I was in that terrible seclusion room just terrified for so long that I lost track of time and hallucinated* for the first time which is a common reaction to this form of torture – it also triggered suicidal feelings and caused me to lose the abilty to connect with and/or recognise others… The psychiatrist worried that she couldn’t ‘bring me back’ and thought I would have to go into a care home…she also changed my diagnosis which I have since rebutted. There were/are many other forms (of torture) which I have been subjected to as an inpatient – ‘behind closed doors’ – which I will write further about later…
As my solicitor said to me years ago :”unlike most people , Katy, the cure for you has always been worse than the complaint”…and then …an inevitable/inescapable revolving door scenario…a person who cannot escape physically can only do so mentally at the end of the day – living in constant fear of a hospital of all places is/was no mean chalk…needing asylum from the asylum now ain’t that absurd !
I used to also have laughter in me too – was not short of a sense of humour…the joke is on me though or so it would appear. (Laughing is perceived as being high for a person who has been diagnosed as Bipolar).
As a worker in what was a kind of unofficial Soteria house or ‘retirement home’ for people who’d survived God knows what in the back wards in Friern Barnet hospital, I /we argued the toss with the survivors’ psychiatrists; questioning the usefulness of medication per se whilst respecting the right on an individual level of the people living there to take medication if they did or did not wish to do so – of course, people need(ed) the right attention and care in life – not just drugs.. .
I was naive about my being ‘tokenised’ essentially or ultimately by a local Mind group which was at the time the most ‘politicised’ arm of National Mind – mostly and openly ‘anti-psychiatry’ and committed, too, to SU involvement as a must…
How could I know that this good work would/could cause me to suffer so greatly later on as an inpatient myself? The house was the first place of its kind and served as a pilot for others…(before the Care in the Community Act)
In 1998 I broke down following a huge bereavement…before being transferred from a good hospital to Satan’s Inn (anagram of Saint Ann’s) where I was repeatedly physically tortured by the male so called nurses, a woman who worked in the Mind advocacy office in the good hospital said she had a note about me which said : “we have to look after this one”…but they didn’t or perhaps couldn’t when I was transferred. I had never before had to enlist a solicitor’s help to get out of what was supposed to be a hospital!
Taking a break from writing now…Thanks for reading, Katy
I’ll write further about what I mean by ‘hallucinated’ later on perhaps… (Whilst it is not necessary or possible to include everything, some elements – especially those which illustrate the extent of iatrogenic injury – do deserve/need highlighting )
My admission was probably one of the lowest points at this time, I was pulled into an ambulance, by police officers who obviously had no idea how to handle a psychotic person. I was put in a small room with only my boyfriend there, three psychiatrists/psychologists came in and assessed me, I don’t remember much of the conversation apart from when one of them told me my parents didn’t want me and couldn’t take care of me. I was to be sectioned over the weekend. The first night I wandered around the ward crying, begging every nurse or doctor I could see for a second opinion. I just wanted to go home.
They gave me Lorazepam to keep me quiet and I didn’t sleep at all, I was on 1 on 1 for the first two days which meant I couldn’t be on my own, not to sleep, not to go to the bathroom or shower, not to cry or express the emotions I wanted to express. I felt helpless and the nurses would only tell me “they won’t let you out while you act like this”. When I couldn’t sleep I told the nurse watching me that I couldn’t sleep and all she said was “you slept”. So I got a coffee at 4am and waited for the day to pass. When your days start at 4am and you don’t get to go to bed until 9pm the days are pretty long and shitty. I’d been managing to quit smoking but when I got in there it was the only thing that allowed me to go outside for 5 minutes.
I was too anxious to shower with someone watching me and I was told me not showering would go against me and I would be made to stay longer. On one particular night they gave me Lorazepam, Zopiclone and Quetiapine all in one night and it made me hallucinate. My birth/dead name was used quite frequently until my named nurse took notice, however that didn’t stop some of the nurses from being ignorant. I was found crying by a nurse who had been extremely harsh and blunt with me from the start of my time there, she gave me no sympathy or advice, just another broken record “do you really think they’ll let you out while you’re acting like this?”. I was saddened to hear that it would go against me to portray my emotions.
I made friends on the ward, they were very good people and I still contact them to this day, I’ll always be grateful for them. One occasion that stood out to me was when I was taken into the office and told “some patients” were “unhappy” with me being on the male bedroom corridor, I was given a rape alarm but wasn’t told who would potentially be attacking me. I was offered food but was too anxious to eat in front of the other patients, the nurses refused to let me eat alone and I had to sit in between two armchairs in the corner. I declined food for the first 3 days and lost weight drastically, I was malnourished, dehydrated and tired, but yet again I was told this was all going against me. I wasn’t offered any advice. A nurse came to me asking about what I wanted to eat, asked me if I wanted a vegan meal and I accepted, she then looked at the list of things and replied “oh well, we don’t have any” and I was forced to choose something else. I was even given meat at one point that I refused to eat.
On my last night I was kept up until nearly midnight because they were late doing night medications (meant to be given at 9pm), my friend and I were the last two to get ours. My review session was 5 days after I was sectioned, I was in the room for 15 minuets, lied through my teeth about feeling great and not wanting to die; I was let out immediately after. They told me I was going to be kept inside this place for all the times I fucked up that I couldn’t help because I was mentally ill. Then I was let out within 15 minutes of lying.
Recovery In The Bin are joining forces with Disabled People Against Cuts (shoutout to Manchester DPAC, Sheffield DPAC, and GM Coalition of Disabled People) to offer assessment compliant recording kits for people to borrow to record their PIP assessments. We are doing this because there is overwhelming evidence that when assessments are not recorded and there are no witnesses, the assessment reports are persistently and fraudulently inaccurate, and are then used to deny people the support they need. Recording the assessment is a solid step in ensuring more transparency in assessments and they also give you good grounds should you need to appeal a decision, although by recording, you reduce the likelihood of getting a bad decision in the first place. Recording acts as a deterrent to the DWP, Atos, & Capita (and Maximus).
As of now there are recording kits available in: Manchester, Sheffield, London, and Cardiff.
The next stage of this project is to encourage others to purchase the components and make assessment compliant kits themselves to offer to people in their locality. Crowdfunding to do this is possible, you’ll need about £120, but be careful who is named, as DWP can be nasty to people on -means tested especially- benefits.
So first- Atos and Capita insist upon certain conditions if they are to accept people recording their assessments, they are here and here (DWP guidance here). What this means in reality is the best way to record assessments is with dual audio cassette recorders. These produce identical contemporaneous recordings that at the end of assessment you date and sign, give one cassette to the assessor, and keep one for yourself.
1 five metre extension cord with double sockets in order to power the recorders, such as this.
A case or bag for the recorders and the cable, for robustness we recommend a large equipment case such as this or this.
Blank unopened audio cassettes (it is important they are sealed/unopened, some assessors will refuse to allow already unwrapped out of their plastic seal audio cassettes)such as these.
PAT (Portable Appliance Testing) stickers, it is important for you to ascertain the electrical equipment is safe, see HSE guidance, that it is undamaged and functioning correctly, once you have done this, fill in the sticker and attach to each plug of the kit (that’s the two cassette power lead plugs and the plug of the extension cable). Such as these.
NB. We are not endorsing any retail provider but for ease of showing people what they need to get we have used commonly available links. Ebay is also useful, but any second hand electrical device must be PAT tested.
So that is your assessment compliant recording kit. But there are also basic procedural steps you have to make to record your assessment:
Contact the assessment centre and tell them at least three working days before your appointment of your intent to record, giving them more time is even better. Three working days is the bare minimum (this is because a lot of assessors refuse to be recorded, make of that what you will, so they need time to find and schedule an assessor who is willing to be recorded).
On the day it is best to attend with a friend, family member, advocate, or witness. You will need to sign a recording agreement form that the assessment centre will provide. Your accompanying person can take care of operating the kit and then also during the assessment it is ideal if they can also make contemporaneous written notes of the assessment.
Taken together: Recording kit, giving them notice, attending with an assistant. Gives you a better chance of gaining a PIP award that more accurately reflects your support needs and narrows the freedom that Atos, Capita and the DWP have to make false assertions to deny your PIP award. None of this is fair, the fact remains the assessment system, legislation, and corporations implementing it, are all part of a deliberate hostile environment towards disabled people, survivors, services users and people with lived experience. None of this is right, we should not have to jump through these tortuous hoops and have our health made worse by a system that is meant to support us. But we are where we are and this is about surviving an abusive system and taking self defence measures to mitigate the harm it causes. Together with continuing campaigning to change the regime and end the hostile environment. And also, make sure you are registered to vote and in case the Tories try to suppress votes, if you can, get photo ID (Passport or driving license or Citizen Card).
A note on ESA/Universal Credit: the Work Capability Assessment- in theory the DWP contractor Maximus should be letting you record and providing the equipment to do so. However this is not reliable and is often begrudgingly done, so these kits are also advised for use with the WCA. Overall the government has repeatedly mooted the use of bodycams for video and audio recording of all assessments, this is not an ideal solution (fundamentally the problem is the legislation and the assessment model, and control of recoding lies with the assessors and use of video should only be done with consent of client) and as yet does not appear to be a functioning provision beyond limited pilot programmes.
There is a lot of poor advice and gossip floating around the internet about how to record and what to do. This guide has been made by activists who have been building recording kits for the past three years and have accompanied and recorded numerous assessments. This advice and these specifications are tried, tested, and proven to work, safely, reliably, and repeatedly. The point of doing it openly and in this approved way is that it acts as a deterrent towards the assessors, so they know they have less room to make misleading assessment reports. While covert recoding is your right, it does not act as a deterrent and is only of use if a tribunal is persuaded it is admissible (they may allow if there is genuine complaint the assessment was misleading, but you will have to argue that forcefully). Also if you are discovered to be covertly recording the assessment they will ask you to stop and may also halt the assessment entirely. The function of recording as deterrent is to get the right award first time and thus avoid the stress, poverty, and potential year plus wait for a tribunal. Please also see our Advice Links page, getting the ward you need starts from the very first contact with the DWP and having reputable battle tested advice from qualified experts is essential.
To arrange to borrow a kit these are the contact details:
London email@example.com or firstname.lastname@example.org
Note: we are fellow disabled people, service users, survivors, people with lived experience, we are not funded service providers, so we will do our best but please be patient and appreciate we have our struggles too.
If you create a kit and want your locality added to this list please email
Call To Action: We Ask
Community Mental Health Teams
User Led Organisations and Disabled People’s Organisations
And any other organisation that professes to care about the health and wellbeing of people.
To purchase and build kits immediately and provide them to people undergoing assessments. If you do, please email us so we can add you to the list. The Grassroots are already engaged in this struggle, so we ask- Where are you? Let us know at email@example.com and we’ll put you on the map!
RITB are delighted to be able to share a recent keynote delivered by Raza Griffiths (above), lead author of the Kindred Minds Manifesto. Here’s what Raza said about the keynote:
I used the powerpoint as part of my opening keynote at a conference entitled “Psychological impacts of racial discrimination for both clients and practitioners”. The event was organised by practitioners from the British Psychological Society – which, as a professional body, has had a patchy history when it comes to addressing racism.
For this event, I looked primarily at the impact of racism
on BME service users, drawing on my work in authoring “A Call for Social
Justice” (2018). This is a manifesto written with contributions from 200 BME
mental health service users, and spells out the changes they have said are
needed to bring about a reduction in BME communities’ poor experiences within
The manifesto underlines the need for action against
structural and institutionalised racism. It gives an overview of the current
political climate and then identifies the changes in policy and practice across
a range of interlinked life areas, including in education, policing and mental
health, that BME service users have said will bring about an improvement in
their mental wellbeing.
In mental health, this includes a move away from an
exclusive focus on bio medical understandings of mental distress and towards
support underpinned by a plurality of understandings of distress that BME
communities can relate to; a move away from involuntary detention and treatment
which are disproportionately used against BME communities; and foregrounding
some of the good practice identified by the extensive writings of BME service
user led initiatives over the years which are all too often ignored by
campaigning groups and policy makers.
The conference took place on Friday 11th October 2019 at the
De Vere Grand Connaught Rooms in Holborn, London
DISCLAIMER: RITB holds a neutral position on medication – we support people to make their own freely informed decisions based on their preferences and circumstances – this includes taking medication and also includes not taking medication (and anything in between!). RITB has produced a position statement on Borderline Personality Disorder (BPD), which we encourage everyone to read. RITB has used publicly available information to compile this blog.
CONTENT WARNING: This blog describes the serious and potentially fatal side-effects and risks associated with clozapine.
Update: 23.10.19: RiTB has recieved confirmation from the Health Research Authority (HRA) that they are investigating the concerns raised in this blog. You can contact the HRA and Trial Sponsor yourself: HRA: firstname.lastname@example.org Sponsor (Imperial College): email@example.com
There’s been a lot of twitter noise recently about the CALMED Trial – a Randomised Controlled Trial (RCT) of Clozapine for people diagnosed with Borderline Personality Disorder (BPD). 111 people will receive clozapine and 111 will receive a placebo for 6 months. A number of concerns have been raised online about this trial, particularly by service users. This blog will focus primarily on the trial population (the people invited to take part in the study) and associated ethical concerns, particularly in relation to the risk vs benefit principle.
To understand the risk vs benefits involved with this trial, we must start with an introduction to clozapine – the medication being prescribed….
Clozapine: An antipsychotic with 4 ‘black box warnings’
Clozapine is an antipsychotic licenced for people who have been diagnosed with ‘treatment resistant’ schizophrenia, and you can read more about it here. Clozapine is associated with severe and fatal side effects. The FDA have issued 4 black box warnings (the UK and EU do not have an equivalent system) in relation to Clozapine for those under 65, which include:-
Black box warnings are reserved for medications with severe and life-threatening side-effects. Antidepressants typically have 1 black box warning, which pertains to increased suicidality in children, adolescents and younger people. Clozapine’s black box warnings are echoed in the BNF (the UK medication bible), which also highlights an additional potentially fatal side-effect:-
Given clozapine’s potentially fatal nature, it requires extensive routine monitoring, particularly in the first 6 months (when most severe adverse effects are likely to occur), which includes: –
Weekly blood tests for the first 18 weeks
Fortnightly blood tests after 18 weeks up to 1 year
Monthly blood tests after 1 year.
All people taking clozapine in the UK must be registered with one of three authorised clozapine monitoring services, one of which includes the Clozaril Patient Monitoring Service (CPMS). A satisfactory blood result must be approved by a monitoring service before another prescription is issued. For the first 18 weeks this prescription is typically weekly, after 18 weeks fortnightly, and after a year monthly. Patients must collect prescriptions from a designated clozapine dispenser in their locality, which is typically not their local pharmacist.
No other medication used to treat mental health conditions in the UK requires such extensive monitoring and infrastructure. Agomelatine (an atypical antidepressant) and some mood stabilitsers including lithium and carbamazepine require on-going monitoring, but this is not as frequent, and they don’t require a national monitoring infrastructure.
In addition to extensive monitoring and potentially fatal side-effects, clozapine has also been associated with other significant side-effects, including rapid and substantial weight gain, sedation and sialorrhea (excessive saliva pooling especially at night). Long-term side effects include diabetes and cardiovascular diseases. These side-effects are more severe compared to medications like antidepressants and compared to other antipsychotics. Caution must also be taken when stopping clozapine: the BNF recommends a 1-2 week withdrawal period and like all antipsychotics it is associated with a high risk of relapse after long-term use on discontinuation.
Clozapine: A special case
To sum up – Clozapine is in a class of its own when we look at medication in the mental health world. No other drug has this many black box warnings, monitoring requirements and significant side effects. It is a special case.
As a special case, clozapine prescriptions are typically limited to people diagnosed with ‘treatment resistant’ schizophrenia, who have tried at least 2 other antipsychotics, one 1st generation and one 2nd generation (the generations aren’t too important here). Some studies indicate that for people with this diagnosis, clozapine reduces suicide rates (this is disputed by others); and is more effective than other antipsychotics on outcomes including relapse rates and hospitalisaiton. In clinical practice, prescribing clozapine for ‘treatment resistant’ schizophrenia is still a short and long term risk vs benefit balancing act: if it does reduce suicide rates, relapse and hospitalisation, short and long term side-effects may still be fatal.
Borderline Personality Disorder (BPD)
Let’s move now to Borderline Personality Disorder (BPD). It’s important to note that BPD is a highly contested diagnosis, probably more so than any other mental health diagnosis, and for good reason. Unfortunately, this blog cannot do justice to the plethora of concerns about this diagnosis, but you can read more about them here and you can read RITB’s position statement on BPD here.
For the purposes of context setting, the NHS website states that:
“Borderline personality disorder (BPD) can cause a wide range of symptoms, which can be broadly grouped into 4 main areas. The 4 areas are:
emotional instability – the psychological term for this is “affective dysregulation”
disturbed patterns of thinking or perception – “cognitive distortions” or “perceptual distortions”
intense but unstable relationships with others”
BPD: Medication “should not be used”
Psychosocial interventions are considered the most successful and clinically appropriate interventions for people diagnosed with BPD. Reflecting this, NICE guidelines state that medication (any mental health medication) should:
“not be used specifically for borderline personality disorder or for the individual symptoms or behaviour associated with the disorder (for example, repeated self-harm, marked emotional instability, risk-taking behaviour and transient psychotic symptoms).”
NICE specifically emphasise that antipsychotic drugs (clozapine is an antipsychotic):
“should not be used for the medium- and long-term treatment of borderline personality disorder.”
During a crisis, NICE asserts that short-term use of medication “may be helpful”. However this statement comes with a number of caveats, including: avoiding polypharmacy; using the minimum effective dose; ensuring that a drug is not used in place of other more appropriate interventions; and arrangements for discontinuing medication after short-term use.
National Institute for Health Research (NIHR) Commissioning Brief (2016)
To date, ‘low quality’ research investigating clozapine for people with a diagnosis of BPD primarily derives from a specific ‘sub-population’ – those diagnosed with severe BPD who are inpatients, typically in long-term secure units. This ‘low quality’ evidence, coupled with routine off-label prescribing for this ‘sub-population‘, was used by the NIHR to justify their 2016 commissioning brief for a RCT to investigate the effectiveness of clozapine for BPD. They outlined that the following ‘problem’ should be addressed by the trial:
“A significant proportion of psychiatric inpatients in secure hospitals meet the diagnostic criteria for borderline personality disorder (BPD)…..even though there are no drugs licensed in the UK for the treatment of BPD, and despite guidance, many patients are treated largely or entirely with medication. This routine practice of prescribing psychotropic medication to manage personality disorders has recently been confirmed in UK secure psychiatric hospitals where it was found that clozapine is the antipsychotic of choice for a significant proportion of inpatients with BPD.”
The CALMED Trial: Addressing a ‘problem’ in the wrong population
In response to the NIHR commissioning brief, the CALMED Trial was funded. Its study protocol (a large document that tells you everything about a study) references the same ‘low quality’ evidence and routine off-label clinical practice in its introduction. In addition to the two studies described, which involved inpatients diagnosed with severe BPD in long-term secure units, it references an evidence review conducted by Beri and Boydell (2014). This review found 12 ‘low quality’ studies (no RCT’s), 6 of which involved people with a diagnosis of BPD who also had psychosis (psychosis is most frequently experienced by people who have a diagnosis of schizophrenia, but can be a diagnosis in itself and can be a symptom of severe BPD and Bipolar Disorder). Of the remaining 6 studies: 2 were conducted in secure units, and 4 consisted of case reports, reporting on a total of 7 inpatients, who had a diagnosis of severe BPD and had not responded to a plethora of psychosocial and pharmacological interventions. For these individuals, clozapine was used as a last resort.
BUT (and this is a big BUT), the CALMED trial is not limiting recruitment to this specific ‘sub-population’ of people diagnosed with BPD (see trial protocol inclusion / exclusion criteria):
BPD severity is not listed as an inclusion / exclusion criteria.
Psychosis is not listed as an inclusion / exclusion criteria.
Inpatient setting type is not listed as an inclusion / exclusion criteria.
People with a diagnosis of mild, moderate and severe BPD, who are admitted to non-secure, short-term mental health wards, including general acute wards, are currently being invited to take part in this trial in multiple NHS Trusts. All publicly available information about the study confirms this, including (but not limited to): the study protocol, a recent presentation at the 2019 Royal College of Psychiatrists Forensic Faculty Conference and reports from people using services on social media.
However, a RCT has not yet demonstrated that clozapine is effective for the original ‘sub-population’ for whom the trial was deemed necessary by the NIHR (based on available ‘low quality’ evidence and off-label prescrubing practices): people who have a diagnosis of severe BPD, who have not responded to all other evidence-based interventions, and who are typically long-term inpatients in secure units.
Clozapine is not being used as a last resort intervention
Perhaps of most concern is that the CALMED Trial is not using clozapine as a last resort intervention. Inclusion and exclusion criteria do not ensure that participants (whatever their setting or BPD severity) have been offered and have declined, or have failed to benefit from, NICE recommended individual and group psychological therapies. Neither do they ensure other NICE recommended assessments or interventions are provided or offered to those known to have experienced trauma (frequently associated with a diagnosis of BPD).
Furthermore, lower thresholds are being used for inclusion in the CALMED Trial than what NICE and the BNF recommend when prescribing clozapine for ‘treatment resistant’ schizophrenia (at least 2 antipsychotics have failed). The CALMED Trial requires only 1 antipsychotic to have been tried for at least 3 months, and the trial protocol does not justify this lowered threshold. This is significant, particularly when examining studies comparing the effectiveness of clozapine to other antipsychotics for people diagnosed with ‘treatment resistant’ schizophrenia. Studies using higher thresholds to define ‘treatment resistant’ report larger effect sizes compared to with those that fail to define ‘treatment resistance’ (some of which report no difference in overall effectiveness).
Secure settings: “Challenging for Recruitment”
It is unclear why the CALMED Trial is not limiting recruitment to people who have a diagnosis of severe BPD, who have not responded to all other evidence-based interventions, and who are typically long-term inpatients in secure units. Diversions from the original NIHR commissioning brief’s ‘problem’, ‘low quality’ evidence, and off-label clinical practice are not justified in the study protocol. However, the NIHR highlighted in their commissioning brief that…
“The setting, whilst challenging for recruitment, would allow close monitoring of any adverse effects”.
It is unclear what “setting” the NIHR were referring to, however, this statement follows a paragraph (quoted above) which makes multiple references to secure inpatient settings only.
Secure settings may indeed be challenging for recruitment. However, such challenges do not render it ethically justifiable to expose a different vulnerable population to a medication that poses multiple monitoring burdens and potentially fatal risks. For this population, NICE clinical guidelines recommend no medications, standard clinical practice does not constitute the off-label prescribing of clozapine, and psychosocial interventions are the firstlinetreatment. The CALMED Trial’s inclusion and exclusion criteria significantly diverges from standard clinical practice for this population and the existing evidence base.
Managing risks and burdens: Close monitoring of adverse effects
The 2016 NIHR commissioning brief outlined that the “setting” (which we can only assume refers to secure units) “would allow close monitoring of any adverse effects”. However, by broadening the population eligible for this trial, the “setting” and the safeguards relied on by the NIHR have diminished. Staffing numbers on general acute mental health wards are significantly less than those in secure units, and people do not typically stay long-term on acute mental health wards, with pressures to discharge increasing continuously.
It is important to acknowledge that clozapine is often initiated on general acute mental health wards for people diagnosed with ‘treatment resistant’ schizophrenia. However, this is congruent with standard clinical practice and clozapine licencing. Risk vs benefits thresholds are higher for clinical trials, particularly for a population for whom clozapine is not being used as a last resort and who may not have received NICE recommended therapies.
Outpatients: Evidence of further recruitment challenges
The trial’s initial publicly available protocol (Version 2.0) specified that people who were due to be discharged within 2 weeks would be excluded from participating. This meant that you had to be an inpatient for at least 2 weeks after starting the trial. On the 21.8.2019 exclusion criteria were amended to enable people to take part as an outpatient if they are due to be discharged within 2 weeks, with a caveat about monitoring in the community.
The original safeguards anticipated by the NIHR’s commissioning brief, associated with secure long-term inpatient ‘settings’, have been further eroded. The most serious adverse and fatal side-effects often occur within the first few weeks and months of taking clozapine. Clozapine requires extensive monitoring up to 18 weeks and then indefinitely. This doesn’t just include bloods – it includes monitoring to ensure constipation is treated quickly and to respond to signs of infection or cardiac problems, all of which can be fatal.
Someone who has a diagnosis of BPD, who is acutely unwell and in crisis frequently, may not be able to manage this extensive monitoring in the community for a drug they would not normally be prescribed, contrary to best practice guidelines. Who will monitor these participants in the community at a time when community resources are already stretched too far? The most recent publicly available trial protocol (Version 3.0) does not outline what additional measures are being put in place to manage these increased risks in a community setting.
Freely given informed consent
Whilst there are ethical issues relating to the ability of people in secure settings to provide free and informed consent to a trial (e.g court orders and the MHA), similar issues pertain to those on general acute wards. People using services have recently spoken openly on twitter about their experiences of being approached to participate in this study, which have been deeply distressing.
We cannot examine all potential factors that could limit freely given informed consent here. But, it’s important to note that people with a diagnosis of BPD are often considered the most stigmatised and poorly treated patients by mental health professionals. They are frequently not provided with NICE recommended psycho-social interventions in the community or as inpatients, and may be desperate for any potential intervention to alleviate their suffering.
Participant Information Sheets (PIS) (a long document that tells people everything about the study) are essential in ensuring consent to any research is informed. Like most studies, the CALMED Trial’s patient information sheets are not publicly available online (at the time of publication: PIS have been requested from the study team but have not been received). Therefore, it is not possible to determine if the CALMED Trial’s PIS ensures that participants will be informed about clozapine’s significant risk profile and about the trial’s diversions from standard clinical practice and existing ‘low quality’ evidence. Information publicly available for potential participants on the ‘Be Part of Research’ website states:
“As with any medicine, side effects are possible with clozapine, however, not everyone who takes the medication will experience problems”
This severely underplays the reality.
The risk vs benefit tipping point
All people conducting clinical research in the UK must adhere to The Declaration of Helsinki (2013) (a set of ethical principles used across the world for research involving human subjects). The Declaration is intended to be read and understood in its entirety, however, for the purposes of understanding the CALMED Trial’s tipping point, it states that:
“Medical research involving human subjects may only be conducted if the importance of the objective outweighs the risks and burdens to the research participants.”
This principle has a higher threshold for ‘vulnerable groups and individuals’ who receive “specially considered protection” under the Declaration. People diagnosed with BPD who are currently inpatients or outpatients – in whatever mental health setting meet this criteria. As such, they:
“…should stand to benefit from the knowledge, practices or interventions that result from the research.”
Whilst it could be argued that clozapine prescribing as a last resort may benefit people who have been diagnosed with severe BPD, typically in long-term secure settings (based on ‘low quality’ research and off-label prescribing practices), this does not extend to others diagnosed with BPD.
The Declaration also has a specific section on the “Use of Placebo”, which the CALMED Trial is comparing to clozapine. It’s worth reading this section in full:
“The benefits, risks, burdens and effectiveness of a new intervention must be tested against those of the best proven intervention(s)….
The best proven intervention(s) for BPD, as recommended by NICE, are long-term psychosocial individual and group interventions. These are not being compared to clozapine in the CALMED Trial. However, the declaration offers 3 exceptions:
1.“Where no proven intervention exists, the use of placebo, or no intervention, is acceptable”
As outlined, proven interventions exist and the CALMED Trial is not using failure to respond to, or accept, recommended psychosocial interventions as an inclusion / exclusion criteria.
2.“Where for compelling and scientifically sound methodological reasons the use of any intervention less effective than the best proven one, the use of placebo, or no intervention, is necessary to determine the efficacy or safety of an intervention”
The CALMED Trial protocol does not provide compelling and scientifically sound methodological reasons for conducting a trial in a population for which it was not intended, and for which clozapine is not supported by existing evidence, best practice guidelines, and current practice.
3. “…patients who receive any intervention less effective than the best proven one, placebo, or no intervention will not be subject to additional risks of serious or irreversible harm as a result of not receiving the best proven intervention. Extreme care must be taken to avoid abuse of this option.”
This criteria cannot be met for participants who are not receiving clozapine as a last resort intervention.
The gold (standard) does not always glisten
In the quest for ‘robust’ evidence, and what appears like attempts to overcome recruitment challenges, the CALMED Trial is conducting a RCT in a population for whom the trial was never intended. Clozapine is not being used as a last resort intervention, it is not being prescribed in accordance with best practice clinical guidelines for both BPD and ‘treatment resistant schizophrenia’, nor in accordance with existing ‘low quality’ evidence. It therefore places vulnerable people who would never normally be prescribed clozapine at risk in the quest to generate knowledge for a very different population. Hierarchies of evidence are not ethically neutral or without bias. The gold (standard) does not always glisten.
Conflict of InterestStatement: RITB’s financial disclosure can be found here. RITB has never and will never receive funding from any pharmaceutical company. RITB is not affiliated with any academic institution or pharmaceutical company.
Amendments: 18:54 on the 22.10.19 – The article originally stated that all people prescribed clozapine must be registered with the CPMS. It now states that they must be registered with one of three authorised services, which includes the CPMS. 8:15 am on the 23.10.19 to remove a factual inaccuracy about the exclusion of people who have psychosis.