Peer Support Worker Competence Framework: co-option in the name of co-production

This week The National Collaborating Centre for Mental Health (NCCMH) – a partnership between Royal College of Psychiatrists and University College London – released a draft of their proposed Peer Worker Competence Framework for Mental Health. It brought together various groups and departments, including Health Education England, to develop and expand peer support work with the aim “to support the mental health workforce, as outlined in the NHS Long Term Plan”. 

It is an insult to the survivor movement and everything we value in peer support.

It would be impossible to sum up this 56 (!) page document – along with its 30 page supporting document – in a few sentences, so I won’t be going into the finer details in this blog. But among other recommendations, peers would “offer a recovery-oriented perspective” while carrying out coaching, group work, psychological interventions and contributing to care plans. This is something that’s become increasingly normalised in peer support work. A recent job description for a senior lived experience practitioner included the expectation that, “after a period of skill-swapping with their clinically trained colleague” they would provide psychologically-informed assessments, care-planning and treatment.

The framework also talks about embedding peer workers in specialist services, such as acute and forensic. An acquaintance who worked briefly as a Peer Support Worker at a mental health hospital had to undergo Prevention and Management of Violence and Aggression (PMVA) Training. PMVA training includes how to ‘safely’ restrain someone. Peer support work increasingly is asking those with lived experience to be nurses, psychologists or therapists in everything but name. It blurs the lines of responsibility about who provides care and why.

My most recent personal insight into NHS peer support was while I was under the care of the crisis team last year. I find the crisis team incredibly stressful, but because I was being threatened with the Mental Health Act, I accepted their involvement as the “least worst” option. The person doing the assessment suggested I see the Peer Support Worker in their team. I refused. They tried to persuade me. Apparently this person was “really special” and “could really get through to me”. I refused again. They tried to persuade me some more. I refused, more forcefully this time, and they finally got the message.

How is any of this staying true to the values of peer support? Is it really an offer of support when it’s an aggressive demand by an overstretched team? How can a peer stay true to the values of peer work when they are embedded in a team that by it’s nature sometimes uses detention and coercion? How often are NHS staff using Peer Support Workers to gain trust where they’ve previously lost it with patients, instead of addressing their own failures directly? Am I a peer worker if the majority of my job description is focused on ‘interventions’  and ‘treatment’?

How the hell have we got here?

The move to bring lived experience into mental health may have begun with noble intentions, but it’s been horribly exploited. I do not blame peer support workers themselves for these failings and believe they are just as in danger of being exploited as the patients they serve. But we are now feeling the effects of a system that actively refused to think through the implications of having lived experience in mental health, while ploughing ahead with embedding them uncritically in their services. This was done by design, not by accident. Too often peer support work in the NHS is used to plug gaps in overstretched and underfunded teams. Equality and mutuality, central to the values of peer support work, gets lost in a relationship that by it’s nature can never be equal. Are we really peers if you have access to my notes? How do peer workers deal with a conflict of interest between peer support values and the values of their employer? Why have divide and conquer techniques become a central tenet of peer support in services? It is co-option in the name of co-production.

In contrast to this version of peer support, I’ve received a great deal of brilliant ‘peer support’ through my involvement in the survivor movement, grassroots organisations and (despite their national mass-closure) at local drop-in centres. We don’t use the phrase ‘peer support’ much anymore – it has already been so co-opted by mainstream services that it often feels beyond repair – but that’s what I understand these experiences to be. 

In this version of peer support we arrive at the conversation as equals. Recovery is neither a requirement nor an obligation – for either of us. I do not ‘coach’ or offer ‘interventions’ and am safe in the knowledge that they will never do the same in return. I can talk about experiences I wouldn’t share with mental health workers – peer or otherwise – because I don’t fear it being documented in my notes and shared amongst people I’ve never met. I am able to learn about the history of the survivor movement spanning 50+ years from people who have lived it. I gain strength from our conversations about this history, and about how we can use our collective knowledge to heal ourselves and, perhaps, society. I learn new ways of coping with my own struggles through understanding other peoples. Sometimes just having someone alongside me in my distress has made me feel less alone. Other times peers have been able to provide practical support and advice, for example, about benefits and navigating services. When I’ve faced mistreatment from mental health services, they have understood implicitly the trauma this can inflict. We are able to set boundaries and do our best to resolve conflict or disagreements authentically, without intermediaries. We are not a homogeneous group and we embrace that – our diversity is our strength. 

Why are these voices no longer important in the debate about what a ‘Peer Worker Competence Framework’ should look like? Why is this the first we are hearing about a document that must have been meticulously planned for a considerable period of time? Peer support has been so badly co-opted by the establishment that it is no longer recognisable. If any of the major health and academic establishments currently claiming to be carrying out peer support work/consultancy really want to hear about what we value, the grassroots are here and ready to tell you. 

The politics of an unstable sense of self: on being a slightly mad queer

By Hattie Porter

Some days I don’t recognise myself in the mirror. The longer I look, the more I see a stranger staring back at me with an expression I can’t understand. Some days I don’t recognise any part of me, even my mind, like I’m a tourist in my own skin and I feel homesick. 

I was diagnosed with borderline personality disorder at the age of eighteen; which was around the same time I came out as gay, to myself at least. Both of these experiences involved a lot of questioning and uncertainty about who I was and who I may become. I hadn’t yet found a language that made sense to me. I was afraid and I thought I was broken. 

One of the core diagnostic criteria for borderline personality disorder, and my personal least favourite, is “a markedly and persistently unstable self-image or sense of self (DSM-5). Or as the ICD-10 describes “the patient’s own self-image, aims, and internal preferences are often unclear or disturbed”. These words feel sharp. The language that taught me I was disturbed for being who I was, echoes to tell me I am now disturbed for not knowing who I am. 

Is it that I don’t know who I am, or is it that I’m not who they want me to be? 

Research around sexual orientation and borderline personality disorder identifies a far greater prevalence of lesbian, gay and bisexual people given this diagnosis. Unfortunately, this research is not only extremely limited but highly offensive through convoluted attempts to depict this correlation as further evidence of our unstable personalities; both pathologising homosexuality and neglecting to consider the impact homophobia has on people. That speaks volumes in itself. 

I want to know how you develop a stable sense of self. What a stable identity would look like? Can anyone’s sense of self be truly stable when our identities move at the same pace we do? These questions are too big to have answers that fit on paper. But what I do know, is that we can never begin to understand the experience of self, stable or otherwise, without considering the politics of identity. 

Our identities carry weight. They are shaped by our experiences of stigma and discrimination, and the ways we have to survive that. They are shaped by the way we’ve been moulded to be. But we don’t all fit into that mould; we carry the pain of trying. We carry the pain of living in a climate where our identities are often socially sanctioned, denied and weaponised. And that is instability. 

As a child, the only resources I had to learn about queernesswere the heavy words carved into the toilet doors and the language of playground bullying. That’s how I learnt being gay was synonymous with being flawed. That’s how I learntto hide this part of me in complex folds of origami, bury it deep inside and seal it with my shame. That’s how I learnt tosurvive. And it came with a price. 

My unstable sense of self is this unravelling. It is me unpicking the stitches of the clothes I never grew into, working out what parts are me, and what parts are the costumeI created to protect myself. This is me relearning the language I was taught as a child, and it is hard work. Some days this is messy. Some days everything is a lie. But I am finally learning how to let myself be myself and to love myself for whoever that may be, even if I don’t really know yet. 

I am proud to be queer, but it is not always easy. People are not always kind. I am always ‘other’, and this demands that I navigate the process of coming out and ‘admitting’ to being who I am. This is in itself instability. This is an experience of having to declare to the world that my identity is incongruent with their default assumptions. This is a continuous process of opening yourself up again and again to everyone you meet, allowing yourself to be vulnerable, never sure how you’ll be perceived. And that is instability. 

It is not just my own sense of self that is unstable, it is the world’s sense of me.  

Borderline personality disorder is a diagnosis which carries its own weight of stigma and judgement. For a long time, I thought this meant my personality was disordered; that I am fundamentally broken, beyond any hope of repair. And I thought it was my fault. 

But I am learning that this diagnostic label is part of something much bigger. It cannot be separated from the systems which hurt us and then pathologise us for the wounds it caused. This is not our fault. We are not broken. 

This is not an illness. It is an injury.

References

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.

Gold, N., & Kyratsous, M. (2017). Self and identity in borderline personality disorder: Agency and mental time travel. Journal of evaluation in clinical practice23(5), 1020–1028.

Reich, D. B., & Zanarini, M. C. (2008). Sexual orientation and relationship choice in borderline personality disorder over ten years of prospective follow-up. Journal of personality disorders22(6), 564-572.

Reuter, T., & Sharp, C. & Kalpakci, A., & Choi, H., & Temple, J. (2015). Sexual Orientation and Borderline Personality Disorder Features in a Community Sample of Adolescents. Journal of personality disorders, 30, 1-14. 

World Health Organization. (1992). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organization.

The Heartsink Professional: full blog coming soon!

Text reads:

“You’ve been in mental health services a really long time, haven’t you?”

Have you ever sat down in a health appointment and within minutes, your heart just sinks? You immediately know it’ll be a struggle to get your needs met. We have started calling these people ‘heartsink professionals’. They might not even say anything particularly awful straight away, but small tell-tale signs betray their whole attitude to patients.

The last one I saw started the conversation with, “You’ve been in mental health services a really long time, haven’t you?”. 1)  Have I? 2) Does it matter? 3) Do they send professionals to lessons specifically on how to make hopeless people feel more hopeless?

Hi, I’m a Heartsink Professional! Here are some things you might notice about me…

  • I make statements of opinion posed as questions
  • I say ‘I’ve been a [insert profession here] X years’ in response to perceived criticism
  • I’m constantly late or don’t say what I agreed I would doI treat you like a naughty child
  • I say “everyone gets anxious/depressed/has pain”I tell people they need to “think themselves better”
  • I don’t follow politics or believe in socio-political causes of distress
  • I rewrite your narrative before you’ve even spoken to me
  • I blame you for being mad / fat / disabled
  • I repeatedly insist on how well you’re doing, even if you’re telling me otherwise
  • I say, “I can’t comment” after a patient speaks about devastating secondary medical trauma 

The Care System Is Broken; Here’s How We Fix It.

The social care system is broken. This is a branch of our welfare state that is propped up by a mixture of local authority funding, the NHS, private agencies and service-users who are hit with huge bills for their care. This system relies on a workforce of low-paid, zero hours workers who leave the job more rapidly than the positions can be filled. At any one time, there are 77,000 vacant care positions. This is a system in which gums are left to grow around dentures and rubbing Sudocrem onto the dermatitis of an 85-year-old becomes like second nature, because the last carer forgot to change their incontinence pad. 

I was a carer for an agency, and now work privately as a carer and PA. I have helped someone pass through this life, unable to help them move into a more comfortable position, because my agency had not been given the funding by NHS end of life care to provide two carers. I have had to get an elderly service-user with dementia get dressed, eat breakfast, wash, take their medication and have their pressure sores tended to within 15 minutes, because that is the funding the local authority would provide. I have been to the houses of adults with no furniture, undressed wounds and dirty living conditions because community care as we know it is coming apart at the seams. 

In my job I have been sexually harassed, inappropriately touched by service-users and cornered by their family members. I have worked fifteen-hour shifts knowing I would only get paid for ten of those hours, alongside single mothers who had been bullied by our managers into taking on extra service-users because there had been another wave of carers quitting. Investing in the care system will ease a few immediate pressures temporarily, but it won’t solve the heart of the problem. Capitalism and neoliberalism have no space for care, for disabled people, or the elderly, or those it deems not productive. Capitalism and neoliberalism do not ascribe value to care work because it is affect labour; it is labour primarily delegated as ‘women’s work’ and is treated as such.  

We have 77,000 spare posts because zero-hour contracts with unpaid travel time and the promise of a rewarding job do not pay bills. Splitting up people’s care needs into 15-minute time slots remove their needs from the equation entirely. Care becomes a clock watching 20km trek every day, chugging water and eating a cereal bar on your way to your 15th service-user that day for a 15-minute, £2.50 worth of work. Working in care becomes fitting sex work in at night after you’ve finished your shift, because your wages aren’t enough to make ends meet and never would have been in the first place. 

The reason institutional abuses occur so frequently within the adult social care system is as such; squeezed enough, stressed enough, people no longer see the impact or value of their work. Crucially in this context, carers are squeezed enough they can no longer afford to care. We do not have a care system which is fit for purpose, because the people who ascribe value to labour have not deemed the people we care for as being valuable beyond the potential pay check their vulnerability offers. A privatised system run by business managers with no lived experience of care absolves the government of responsibility and feeds into a wider trend of disabled people being increasingly at the mercy of private service providers. 

Sometimes care work is the simple act of helping someone drink when they themselves cannot. Sitting next to someone who knows they’re dying and just sitting. Sitting with each other staring out the window at the sea, knowing you can’t move them into a more comfortable position because the care agency couldn’t get the long-promised second carer approved by funders. Care work is vital and it is indescribable. I love my job, and I know it can be different. 

The CALMED Trial: A call for ACTION!

Recovery in the Bin published a blog on the 22nd of October highlighting significant ethical concerns about the CALMED Trial, which you can find here.

We contacted both the Health Research Authority (HRA) and the Trial’s Sponsors (Imperial College London) to notify them about our concerns on the 22nd of October. 

It is now the 16th of December and the study is continuing to recruit.  No study amendments have been submitted to the HRA for approval in response to the concerns we raised.  

This means that patients, who would never normally be considered suitable for clozapine, who are not in long-term secure settings, and who have not received psychological therapies in the first instance, are being prescribed clozapine at a lower ‘last resort’ threshold than recommended by NICE and the BNF for Schizophrenia. 

We publish here, for transparency, the responses received so far from Imperial College London and the HRA.  We conclude with a call to ACTION.

Trial Sponsors: Imperial College London

Trial Sponsors are the primary organisation responsible for a study – every study will have a ‘Sponsor’.  The CALMED Trial is sponsored by Imperial College London and we contacted their Office for Research Integrity, who were listed as the Sponsor contact.

We notified Imperial College of our concerns on the 22nd of October.  We received a confirmation email that our concerns would be investigated.

We heard nothing.

We contacted Imperial College on the 10th of December for an update:

“Dear CALMED Trail Sponsors,

We notified you on the 22nd of October about our concerns regarding the CALMED Trial.  We have not heard anything since, other than an acknowledgement that you are investigating our concerns.

We are now emailing to request an update about what actions you have taken in response to our concerns and the outcome of any action you have taken.

We look forwards to hearing from you,

Rita.”

We received this response on the 16th of December:-

“Dear Rita,

Thank you for getting in contact, the concerns raised have been investigated and further engagement undertaken with patients and the public, updates of this will be presented in March at the national personality disorder conference. An amendment to the study will also be submitted to provide further clarification on the inclusion criteria of the study.

Many thanks

[REDACTED]”

We responded to this email on the 16th of December:

“Dear [REDACTED],

Thank you for your email.

As requested in our initial email, and for transparency, please could you provide us with an account of all the actions you or the research team have taken to address our concerns.  This includes how our concerns were addressed through your complaints procedures and Standard Operating Procedures.

It is not acceptable for us to wait until a conference in March to hear the outcome of your investigation.

We are concerned that an amendment has not yet been submitted.  Please could you inform us why there has been a delay?

Rita”

We are extremely concerned that an amendment to protect participants has not yet been submitted to the HRA for approval after 2 months.

Health Research Authority (HRA)

The Health Research Authority is the overall organisation that oversees ethical approval for studies that recruit patients through the NHS.  The CALMED Trial was approved by a HRA Research Ethics Committee.

We notified the HRA about our concerns on the 22nd of October.  We received a confirmation email on the 23rd of October to state that our concerns had been received were being investigated in line with their Third Party Concerns Procedures.  We were told that it would take 25 working days to investigate and the reasons for any delay beyond 25 working days would be explained to us.

On the 27th of November (the 25th working day) we received the following email:

“Dear Rita,

I advised you in my email dated 23 October 2019 that we would provide you with an update on progress today. We are continuing to work on this investigation, and will be in touch with you again within the next two weeks.

Yours sincerely

[REDACTED]”

We responded on the 27th of November to request further information about why there was a delay.  

“Hi [REDACTED]

Thank you for getting in touch.

In your email dated the 23rd of October you stated that: ‘Where the investigation cannot be completed within 25 working days we will keep you informed about the reasons for the delay and the expected timescale for completion.’

Could you let us know the reasons for the delay?

Also we would very much appreciate some information about what actions have been taken to address the concerns we raised.  We are concerned about patient safety and we have already waited 25 working days and have not received reassurance that something is being done to protect vulnerable participants.

Rita”

On the 28th of November we received this response:

“Dear Rita,

Thank you for your email of 27 November.

The issues you raised about the CALMED study are being investigated in line with our standard process for Third Party Concerns.

This process includes establishing which of the issues raised with us are within the remit of the Health Research Authority. Once we have done this, we identify senior staff who were not involved in the original study review. These staff collate relevant documentation and review the study in light of the concerns raised to decide on any action that needs to be taken. In some cases this may include a review of the original ethics opinion.

This process can be time consuming. The CALMED study was reviewed by a Research Ethics Committee in Wales and we are working with our colleagues at Health and Care Research Wales (HCRW) to ensure that we have all necessary documentation to consider the concerns you have raised with us. We expect to have completed our investigation within the next two weeks and will write to you again when we have done so.

It is important to point out that whilst in some exceptional cases the HRA can withdraw the ethical approval of a study which is in progress, it does not have the power to halt a study when concerns are raised. Please be advised the Medicines & Healthcare products Regulatory Agency (MHRA) has the primary responsibility for the safety of medicinal trials. Under the Clinical Trials Regulations, the decision to suspend or terminate the Clinical Trials Authorisation and therefore to halt a trial lies solely with the MHRA.  

Kind regards,

[REDACTED]”

On the 10th of December we contacted the HRA to obtain an update as we had not heard within the 2 weeks time frame. 

“Hi [REDACTED]

We are emailing to get an update about the progress of the investigation.  If you could let us know the current stage of the investigation that would be great.  We have waited now for nearly 2 months, which is an awfully long time given the significant concerns we have raised.

Rita.”

On the 12th of December we received this response:

“Dear Rita,

My apologies for the delay. I am meeting with the individual investigating your concern tomorrow and will provide an update after this meeting.”

At the time of publication (16.12.19) we have not had a response from the HRA.

A call for action

2 months have passed since we blogged about our significant concerns about patient safety.  2 months ago we notified the Trial Sponsors and the HRA of these concerns.

After 2 months, we have not received information about what actions both the HRA and the Trial Sponsors have taken to address the concerns raised in our blog.  The trial sponsors have not yet submitted an amendment for approval to protect patient safety – this is unacceptable. 

We have been patient – we have waited 2 months.  We will not be patient any longer – patient safety is at stake.

Current systems available to the public to raise concerns about studies are woefully inadequate.  They do not act in a timely manner to protect patient safety and they are not sufficiently transparent. 

Accountability can be deferred to other organisations and approving bodies, for example to the MHRA by the HRA, or to the HRA by the Trial Sponsors.  This makes it very difficult for any concerns about studies to be addressed quickly.

We strongly urge our allies to support our campaign for a swift and transparent resolution to our concerns about the CLAMED Trial. We are a grassroots service user group and do not have paid members of staff.  We do what we can.

If you have influence, we urge you to use this so our concerns can be addressed swiftly and transparently.

Everyone can:

  • Sign and share a Change petition that we have created HERE
  • Contact the HRA and express your concerns to Stephen Tebutt, Head of Corporate Governance and Risk, quoting the reference 19.TP.09: hra.complaints@nhs.net 
  • Contact the Trial Sponsor (Imperial College) and express your concerns to Ruth Nicholson, Head of Research Governance and Integrity: r.nicholson@imperial.ac.uk
  • Contact the MHRA (Clinical Trial Regulators): Jennifer.Martin@mhra.gov.uk. Reference: GCEP-00140808.
  • Contact the NIHR (Funders): Stephanie Garfield-Birkbeck: stephanie.garfield-birkbeck@nihr.ac.uk

We cannot do this alone.   

We are not prepared to wait for a conference in March 2020 to hear what action has been taken.

SOLIDARITY

UPDATES: 17.12.19 & 23.12.19

  • Trial Sponsors: Imperial College Updates

We are yet to recieve an answer to the questions we asked Imperial College. We have recieved no further correspondence from anyone at Imperial College since our blog was published.

  • Medicines and Healthcare products Regulatory Agency (MHRA) Updates

We notified the MHRA of our concerns relating to the CALMED Trial on the 16.12.2019, which also included the way in which our concerns have been addressed to date. The MHRA regulate clinical trials which involve medication.

On the 20.12.2019 we recieved the following response, notifying us that an amendment to the trial had been expidited and approved by the MHRA. No further details pertaining to the amendment were provided. They notified us that they are conducting their own review into the study.

Dear  Rita               

Thank you for your email of 19th December.We are aware of the CALMED trial and are conducting a review. MHRA has received an amendment to update the protocol and this has been expedited and approved. An initial review of safety undertaken at the same time has not highlighted any significant concerns that would require us to take urgent regulatory action. Patients are appropriately monitored and all patients are treated in the trial on top of standard of care interventions, including psychological interventions and occupational activities.

  • National Institute for Health Research (NIHR) Updates

We notified the NIHR of our concerns relating to the CALMED Trial on the 16.12.2019, which also included the way in which our concerns have been addressed to date. The NIHR funded the CALMED Trial and wrote the commissioning brief for a RCT to investigate the effetiveness of clozapine for BPD.

On the 19.12.19 we recieved the following response:

Dear Rita

Thank you for your email which I acknowledge. Your request to investigate your concerns has been noted. In the meantime please note we will not be able to comment on investigations by other organisations.  Yours sincerely

  • HRA Updates

UPDATE 17.12.2019:

We received the following email from the HRA on the 17th of December:

Hi Rita,

I have now spoken with the individual investigating your concern who has advised the research team is in discussions with the funder regarding making an amendment to the study. We anticipate confirmation shortly and will provide an update as soon as possible.

Kind regards,

REDACTED

We responded on the 17th of December at 11:50am:

Thank you for letting us know.
Could you let us know if your investigation has concluded that the original ethics decision requires amending or withdrawing?
Best wishes
Rita

We responded again at 4:07pm:

Hi REDACTED


Could you let us know when we will receive your answer to our question?


We are concerned that we are not being provided with all information relating to the investigation in a transparent and timely manner.


Our complaint was submitted to the HRA (not the study team), in order to ensure that an impartial review of the original REC approval was conducted.  We therefore expect to hear how this REC decision has been impartially appraised by the HRA as an independent body in light of our concerns.  We also expect to hear what actions you will be recommending through the HRA and timescales for these actions. 


Negotiations with the study team and discussions about a future amendment with the study team are not a substitute for an impartial, independent review by the HRA regarding the original REC approval.


We have notified the MHRA and NIHR of our concerns about the trial today.


Rita

UPDATE 23.12.2019:

We received an update report from the HRA on the 22.12.2019. This is a 3 page document which consists of a number of quotes from the HRA’s Standard Operating Procedures. It is too lengthy to include here in full, but you can access it here. They notified us that an amendement was submitted to the HRA (REC) and MHRA on the 17th of December, (this blog was originally published on the 16th). In their report they state that this amendment relates to specifying BPD severity.

“HRA can confirm that an amendment was submitted on 17 December to both the REC and MHRA. NIHR have confirmed that at the end of November 13 participants had been recruited.

The HRA has approached MHRA who have the expertise and responsibility for reviewing the safety of the study. Following a number of exchanges, MHRA have noted that the patient population is restricted to inpatients and therefore the study population would be limited to patients with sever[e] Border[line] Personality Disorder. However, they note that the protocol was not explicit in relation to severity, and that less severe patients could have been included. The new amendment is therefore regarded by MHRA as a clarification.”

On the 22.12.19 we provided an initial response to the HRA, it can viewed in full here. We will work with our allies to draft a complete response in the New Year – if you would like to assist with this, please contact us at recoveryinthebin@gmail.com.

In our initial response we welcomed an amendment to ensure BPD severity is an inclusion / exclusion criteria (pending further information about how this will be assessed). However, we highlighted that many of the concerns raised in our initial blog had not been addressed. We asked the HRA two questions in our initial response which need answering at the earliest opportunity:

QUESTION ONE: Why is Clozapine being prescribed in this study at a lower ‘last resort’ threshold than the BNF and NICE recommend for treatment resistant Schizophrenia (the only mental health condition which Clozapine is licensed for in the UK)?

QUESTION TWO: Why is a failure to respond to, or decline, NICE recommended therapies for BPD not included as an inclusion / exclusion criteria?

Our response to the HRA was sent to the Trial Sponsor’s, NIHR and MHRA, to enable them to respond within their own remits.


Transphobia at Mad In The UK and British Psychological Society, An Open Letter

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.

Signed

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
Lorna McArdle, Support U
Alyssa Henley, Support U
Zoe Ereni, writer, training psychotherapist

If you wish to add you or your organisation’s signature to the open letter please email recoveryinthebin@gmail.com

Mad At Work

Madlove Designer Asylum project madlove.org.uk

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?  

OUR DEMANDS

  1. No glass walls or doors for maximum privacy and minimum surveillance 
  2. All toilets to be accessible and all-gender
  3. Provision of private nap cubicles
  4. Abolition of gaps around toilet doors to allow for privacy for purging and panic attacks
  5. 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
  6. No dress codes or norm of dressing gowns, blankets, pyjamas, slippers, bare feet 
  7. No more defining mental health as the ability to work
  8. Abolition of counselling as gatekeeping for jobs
  9. End of the use of health and safety and risk assessments to punish and restrict autonomy of disabled people
  10. Abolition of small talk (replace with standard red/yellow/green communication badges every door) 
  11. Police uniforms for Human Resources & Occupational Health staff to make their roles clear
  12. Paid time in all workload models for collective organising (including but not limited to trade unionism, direct action, feminist consciousness raising and zine-making)
  13. Free workers’ canteens (with no coercive ‘health’ or ‘normal’ eating) 
  14. All contracts mandatorily available as job share 
  15. All workplaces to circulate and commit to Recovery in the Bin principles
  16. Worker feedback forms to be located over the shredder for clarity around purpose
  17. No more macho pretend-its-fine culture
  18. Actually flexible working hours
  19. Recognition of workers as humans for whom work is only one part of life 
  20. 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)
  21. Time in all workload models for private, skilled, on-demand clinical supervision for anyone who works with ‘vulnerable’ groups
  22. Recognition that learning, not-knowing and lack of enjoyment are inevitable elements of work and not signs of unprofessionalism
  23. Resources to support working from home (e.g. printer and scanner)
  24. Option to get paid based on hours or on task, your choice, with no reduction in pay (maximum 25 hour work week either way)
  25. A sensory room with sensory toys AND integration of those things into rest of work place
  26. No forced disclosure ever
  27. Sound proofed screaming cubicles
  28. Screaming normalised everywhere, ear defenders supplied at all entrances
  29. Employers to pay employees’ union membership 
  30. No more suffering as a rite of passage
  31. Education for all employees about madness BY mad people
  32. Abolition of the idea of ‘professionalism’ (otherwise known as ableism, racism, misogyny, etc) 
  33. Abolition of ‘reasonable adjustments’, replacement with actually accessible workplaces including accessibility budget for all workers with no monitoring
  34. Wages for housework, care labour and all social reproduction 
  35. No more rest or breastfeeding areas in stationary cupboards 
  36. Repurposing of ‘common room’s for crafting, animal therapy, prayer, dart boards and punch bags with bosses faces on, meditation, etc. 
  37. No more token wellness activities or ‘pledges’
  38. More sharing of unsantized stories (NOT ‘it all got a bit tricky but I’m totally better and promotable now’)
  39. Abolition of requirement to perform trauma and healing for job 
  40. 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.

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.