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.

When The Cure Is Always Worse Than The Complaint…

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 )

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

On Admission To Wrekin

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.

By Jason Lewis @ag0ny_in_vain

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