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: email@example.com Sponsor (Imperial College): firstname.lastname@example.org
We published a follow up blog documenting the complaints and concerns process on the 16.12.2019, which you can find HERE.
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.
I am furious with the mental health awareness campaign. I am seething at the lie that if we put our mentally ill heads above the parapet and reach out, we will be seen and heard and given help. I am livid about the fact that mental health seems to be the great issue of our times, yet for those of us with severe and enduring mental illnesses, cuts to vital services mean that dreams of even the most basic long term care are the reality of a bygone era.
I want to force public attention away from the well-meaning awareness campaign and towards the lack of crisis care available, towards the state of our seriously ailing social services, and towards the effects of austerity measures which have put the lives of the most vulnerable in society at the most risk.
But there is absolutely nothing I can say which hasn’t already been said. The statistics are clear and damning and public. Writers have won awards for their criticism of the mental health conversation. Yet we continue to be blasted by a message of awareness which skates over the truth in a way that puts us all at risk. So I am going to shout about the reality of the situation, of my situation, in an effort to redress the balance of the conversation we so desperately need to be having.
The reality is urgent referrals getting lost or delayed on numerous occasions. It is being in a life-threatening situation and put on hold for hours by a specialist crisis line whose voicemail message reveals that the mental health ‘team’ patients are encouraged to seek help from is in fact a single Nurse serving the entirety of South London.
The reality sees risk assessments refuse patients access to services until they are more likely than not to attempt suicide. We are pushed to the brink before we are worthy of treatment. And then there is the grand irony that we are all encouraged to reach out for help which exists only for those who can afford to pay.
I am tired. I am exhausted from living with a condition that often sees my emotional state vary from ecstatic to suicidal multiple times a day. Recently I have started to hallucinate. I am terrified of slipping back into crisis because I know that when I call for the help that I need I will not get it. I know that the more ill I become, the harder I will have to fight for my basic right to mental healthcare.
I am burdened with an unbearably cruel illness which tells me that I am wrong to write this and wrong to expect any help because I am not worth a breath of energy from anybody. And I am starting to wonder if my experiences of the system have fuelled my belief that nothing I go through could be bad enough to warrant serious and thorough treatment. This is all making me sicker.
Countless stories like these are already in the public domain. It often feels like I’m screaming into an echochamber filled with other mental health service users who too are facing year-long waits for help with conditions that are life threatening now. We have been shouting from the rooftops while well-meaning ideas of awareness and resilience are banded about like they will solve everything. Of course #EveryMindMatters. But shining a light on mental ill-health and failing to acknowledge the grossly inadequate systems which exist to deal with it often just serves to exacerbate the issue.
I don’t want you to respond with sympathy. I want you to be angry. I want you to share my outrage, the outrage I felt when I was sent away from more than one health provider, suicidal and alone, because I was not on the right list to qualify for help. I want your awareness to be centered on the situations that thousands of us face daily as we continue to keep our heads above the water while fighting a battle that should not exist.
The chances are that you’ve already read something like this. My experience is not unique. Please, if you are mentally healthy, take my anger and do something productive with it, because I have run out of energy and this crisis is growing. Please share the fight with me.
On the 13th September 2019, Recovery in the Bin delivered their keynote talk at the 25th International Mental Health Nursing Research Conference. We are publishing the text of the talk, in full, here.
To reference this transcript, please use the following:
Recovery in the Bin, Edwards, B. M., Burgess, R., and Thomas, E. (2019, September). Neorecovery: A survivor led conceptualisation and critique [Transcript]. Keynote presented at the 25th International Mental Health Nursing Research Conference, The Royal College of Nursing, London, UK.
You can also watch the video from the conference which was live streamed:
And! After the presentation André Tomlin, The Mental Elf interviewed the RITB presenters for a podcast, we may even occasionally have made some sense!
Acknowledgments: Thank you to @jadeelizb, @RRowanOlive, & Vince Laws for artworks. @maddoggie2, Nell Aitch, Anne O’Donnell, Andi Fugard, Alan Meudell, and G, for their support, feedback and advice during the keynote’s production, performance and aftermath. And to all the survivors whose voices have contributed to this critique over the years, Thank You Binners!
We hope the term neorecovery will help professionals involved in your care understand.
And we hope we have done you proud.
Click Slide images to embiggen!
Neorecovery: A Survivor Led Conceptualisation And Critique #MHRN2019
The Voices of Lived Experience
Recovery in the Bin is a user-led critical theorist group, who have spent half a decade at least critiquing recovery and making jokes in order to survive. We are not academics, we are ‘Binners’, and we come from beyond academia, from a mysterious place you may have read about, known as ‘Reality’. ‘Anecdotal’ is not a dirty word in our world, and our hierarchy of evidence has lived experience right at the top!
Our focus and critique is therefore based on our user-led collective’s experiences, which are grounded in the way recovery is understood, researched and implemented with people who have severe and long-term mental health conditions. We are today’s ‘grassroots’ – the very people from whom the recovery vision originally emerged.
In 2014, we began as a small Facebook support group for people who felt “abandoned by recovery”. The group was founded by three mental health survivors who remain integral to our work today.
Since then, we have grown beyond our founders’ wildest dreams! We have a twitter account, and a blog which has been referenced more than 138 times, including by some of you here today. We even have our very own spokesperson, Rita Bins, who likes to make an appearance every so often. We have listed some of our most notorious blog posts which you may want to check out later, they include our Unrecovery Star and our Stepford Recovery College Prospectus .
Unsurprisingly, we have come to speak to you today about Recovery. However, we aren’t going to repeat our familiar critique which can be found on our internationally renowned blog Today we aim to build on this critique by conceptualising and describing what we call ‘neorecovery’.
This will be the first time we have presented these ideas, therefore, please reference this presentation so we can be recognised for our original contribution to knowledge.
As this is a mental health nursing research conference, we are fairly confident that you all know about the existence of the ‘recovery’ approach, concept, notion, vision or model- please pick your preferred description -and you should know about some of its faults and flaws, trials and tribulations. So, we’ll skip the basics of recovery so we can spend more time on our critique!
Recovery’s Emergence in Policy
Recovery appeared in English mental health policy in 2001 and shortly after in the rest of the UK. It reflected Anthony’s (1993) frequently cited grassroots user-led definition, which originated from people with severe and enduring mental health conditions in the United States in the 1980’s and early 1990’s. You’re probably well versed in Anthony’s quote by now but for anyone who isn’t here it is:
Despite recovery’s prominent place in policy in 2001, little was known about what recovery orientated services would look like or the contextual barriers to implementation in the UK. And, importantly for a research conference, there was no robust UK evidence base to support its prominence in policy.
It is also extremely important to note here, and perhaps this is glaringly obvious, that Recovery’s prominence in policy in 2001 was highly political and to be more specific, neoliberal.
Neoliberalism and the Emergence of Neorecovery
We will return to the word neoliberalism multiple times in this presentation, so briefly for those of you who are not familiar with the word:
“Neo-liberalism values individual interaction in free markets. It argues for welfare state cutbacks and greater individual responsibility and stresses the importance of opportunity.
This in turn underscores particular themes in public attitudes (deservingness, obligation and choice) and downplays others (solidarity and community).”
Neoliberalism is the dominant ideology of many major governments around the world. It’s ‘holy trinity’, is deregulation, privatisation and the cutting of social provision, such as welfare and social care.
Recovery was therefore, enacted in policy and services had to implement it. However, they had little idea if or how it was possible and were perhaps unaware of its politicised nature and the potential harms that this may cause. In this context of confusion and politicisation, Neorecovery’s seedlings emerged.
‘Recovery’ in the Real World
Fast forward to the present day, the ‘Recovery Approach’ has not been an astounding success for service users.
At one time, we thought we were radical, but it seems people are catching up with us! Like recovery itself, our critical stance on recovery has become mainstream!
Eighteen years later and we are suffering the consequences of a politicised, poorly defined and understood ‘recovery’ in policy.
We still don’t have a shared understanding of what recovery means in practice or what it should look like.
It is widely acknowledged that recovery’s implementation in the real world is inconsistent and suboptimal. In fact, the REFOCUS trial suggests that a UK context poses considerable barriers to ‘recovery’s’ effective implementation.
We still do not have a robust evidence base for widespread ‘recovery’ interventions including Recovery Colleges. That’s 18 years AFTER ‘recovery’ entered policy! As the Mental Elf likes to remind us, it takes 17 years for research to enter policy, but after 18 years in policy we still don’t have the evidence we deserve as service users.
And ‘recovery’ has continued to be politicised, or as some people say, politically co-opted.
As one of our members Robert Dellar put succinctly in 2014, “Recovery has always only ever been an empty word that refers to whatever agenda or ideology anyone chooses.” Robert didn’t specifically mention neoliberalism but given his other notable survivor works, we are confident that the agenda and ideology of neoliberalism were firmly in his mind.
In the context of 18 years of confusion, ‘sub-optimal implementation’ and political co-option and corruption, we propose that a new and distinct ‘recovery approach’ emerged, which has so far remained unarticulated.
We call this neorecovery.
The word “neorecovery” was coined around 2017, by a co-founder of Recovery in the Bin.
We want to make explicit for you this unarticulated and often unconscious approach that significantly influences research, practice and policy in the UK, and is now even packaged and branded for global export.
Our conceptualisation or description of neorecovery is in its infancy, however, we propose that neorecovery is distinct from the recovery vision which originated from grassroots survivors. We’ve created this table to explain what we believe are neorecovery’s key departures from the original grassroots’ recovery vision:
We hope services aren’t ALL delivering neorecovery and we hope not all interventions currently being researched and evaluated are neorecovery based.
We hope that there are informed researchers and services, where recovery is being implemented in accordance with its grassroots vision and ethos.
We recognise that there may be services where only some practices resemble neorecovery and there may be researchers and clinicians who don’t realise that they are implementing neorecovery.
We’ll now move on to describe these key departures in more detail, paying attention to the differences in Recovery and Neorecovery’s population, theory, values, beliefs, politics and power dynamics. We’ll also talk about the impact these departures have had on mental health services and people who live with severe and chronic mental health conditions – the target population of the original recovery vision – many of whom feel, and are, abandoned and excluded by neorecovery.
Differences in Population
It is well known that grassroots visions of ‘recovery’ were firmly rooted in the lived experience of people living with severe and enduring mental health conditions. However, neorecovery is typically applied in a blanket fashion to all people who use mental health services or experience a mental distress. We have seen this blanket application in policy and we also see this in the Eight Principles for Recovery Colleges and the REFOCUS intervention which is described as “suitable for various diagnoses and all types of community-based adult mental health teams”. Service users are also aware of this, as this quote from a service user highlights, “The approach…has been co-opted by mainstream mental health services as a one-size fits all but it doesn’t fit everyone & it’s clearly not working” (@Girl_Interrupt_)
This shift in focus is not problematic if the needs of all are met. However, combined with neorecovery’s additional departures, we argue that there has been a shift OR ‘REFOCUS’ from services and research that meet the needs of those with severe and long-term conditions, to those that meet the needs of the majority with mild, moderate and time-limited conditions.
Departure in Theory
Reflecting grassroots recovery’s grounding in the experiences of people living with severe and enduring mental health conditions, it was deeply embedded in the theories and ideas of the social model of disability, with its emphasis on the ‘total’, long-term impact of severe mental illness. This included functional disability including our ability to get our daily living activities completed, how we are treated by society, including discrimination and stigma, and the inequalities we face, for example economically and poor housing.
Neorecovery, on the other hand, is not grounded in a social model of disability. Its key proponents view disability, like symptom reduction, as a facet of ‘clinical recovery’. Neorecovery interventions, including REFOCUS, are founded on psychological theories about attitude and behaviour change, while Recovery Colleges are based on educational approaches.
It seems that recovery’s grounding in a social model of disability is something lost to history like the asylums. It’s throwing the baby out with the bathwater!
So, what’s wrong with the shift in focus? By forsaking a firm grounding in a social model of disability, and not fully acknowledging psychosocial disability, neorecovery interventions do not actively address the substantial long-term societal barriers and social disadvantages that people with mental health conditions experience day to day. Rights-based approaches that lack firm grounding in an understanding of long-term psychosocial disabilities, will, like the REFOCUS intervention, be no more effective than usual care for us.
Our Unrecovery Star highlights our social reality.
So, we ask: Where are the ‘recovery’ orientated interventions, conceptual frameworks, campaigns, marches and demonstrations that address the socio-political injustices that people with enduring mental distress experience?
We acknowledge there are some initiatives, addressing this but they are far from widespread. No amount of REFOCUSSING, or re-education at Recovery Colleges will remove these injustices. Talking about the social determinants of mental health is insufficient – actions speak louder than words.
Departure in Values and Beliefs
Reflecting its grounding in a social model of disability, grassroots recovery was heavily critical of oppressive mainstream “American” values, including “rugged individualism”, competition, personal achievement, and self-sufficiency. They advocated for a wide variety of services based on alternative values such as collectivism and co-operation.
However, glancing at the heavily branded and marketised ‘recovery stories’, interventions, service innovations and transformations, it is clear that Neorecovery embodies the mainstream values of individualism. We see individualistic buzzwords everywhere, like ‘self-management’, ‘independence’ and ‘responsibility’.
What’s wrong with this departure?
As Deegan eloquently stated in 1988:
“For some psychiatrically disabled people, especially those who relapse frequently, these traditional values of competition, individual achievement, independence and self-sufficiently are oppressive. Programs that are tacitly built on these values are invitations to failure for many recovering persons. For these persons, “independent living” amounts to the loneliness of four walls in the corner of some rooming house. For these persons, “individual vocational achievement” amounts to failing one vocational program after another until they come to believe they are worthless human beings with nothing to contribute. For these persons, an alternative type of rehabilitation program, and even lifestyle, should be available as an option.”
Deegan could have been writing today. 31 years later, the oppression, failures, feelings of worthlessness and loneliness continue.
Like we said, we live in the real world. In the real world, some people may never be capable of competitive employment. Some people may always need intensive support to remain independent. Conflating ‘independence’ with self-sufficiency and then demanding chronically disabled people be self-sufficient is unethical and cruel.
Disabled activists never intended ‘independence’ to be understood as synonymous with a self-sufficient neoliberal ideal.
As Disabilities Rights UK succinctly explains: “… the essentials of independent living… the right to choose how your support needs are met, control over your day-to-day life, that you are your own expert on your life, that you should have choice in deciding how your support needs are met, and that you should be able to play a part in society.”
Words like independence, personal responsibility and choice may sound empowering and self-actualising, but in the context of neorecovery, these humanistic versions of individualism have been distorted to fit the ideals of neoliberalism. Phrases used in everyday clinical practice, like ‘reducing dependency’ and ‘taking responsibility’, now reflect government neoliberal attitudes, particularly in relation to economic efficiency, welfare reform and welfare to work.
We have developed some artwork to protest – Take your responsibility pill!
We are now blamed for our failure to recover within prescribed timescales and our inability to conform to the neoliberal ideals of self-sufficiency that are embodied in neorecovery. We are called dependent, discharged from services and re-diagnosed with personality disorders for not getting better. It is individualism at its most cruel.
The Rise of Positive Psychology
Closely connected to neoliberal individualism, and another key departure from grassroots recovery, is Neorecovery’s over emphasis on positive psychology, or as Woods and others say “compulsory positivity”.
It’s important to remember that grassroots recovery maintained that negative thoughts, emotions and experiences like anger, failure, despair, denial, anguish, were key features of the recovery process, alongside positive thoughts, emotions and experiences like hope and optimism.
In contrast, Neorecovery places positive psychology centre stage and success and positivity appear compulsory. CHIME, the most cited ‘recovery’ conceptual framework which has significantly influenced practice, neglects these essential processes in favour of hope and optimism. The REFOCUS intervention formulaically prioritises individualised, future orientated goals and seeks to assess and amplify strengths.
Little room is afforded for our real struggles, difficulties, failures and our past.
So, what’s wrong with this departure?
Optimism, inappropriately administered, was seen by grassroots proponents as a significant hinder to the recovery process – and we agree. Deegan advocated for flexible services that don’t ‘abandon’ those of us who need long-term support in our suffering. Sometimes we need time to be mad. We need support when we – like Deegan – feel anger, denial, anguish, failure and despair. But we are still abandoned for days, weeks, months and years. Far too often, we remain alone.
A quote from our co-founder @Maddoggie2 highlights the invalidation inflicted by inappropriate optimism.
“There’s no limping along recovery now… there’s celebrity recovery. There’s no room for madness anymore – people used to be actively psychotic and in emotional pain on stage at conferences…. now we must be sanitised ‘normals’. We reserve the right to be in a state of unrecovery.”
Differences in Power Dynamics
Our next proposed key departure centres on who controls or leads mental health services, research, or the alternatives to these. As everyone by now should be aware, recovery originated from the grassroots – people living with severe and enduring mental health conditions or distress who advocated for user-led, democratic and collective alternatives to medicine and professional dominance.
However, it is undisputable that mental health services remain controlled and led by professionals. On a concrete level, resources have not been redistributed to user-led alternatives. The National Survivor User Network’s 2019 Campaign, ‘The Value of User-led Groups’ highlights that many user-led alternatives struggle to survive with lack of funding, and often go under. Peer worker roles are becoming more prevalent but traditional power imbalances remain, with a lack of equality of pay, influence or career progression for peer workers and researchers. Ask yourselves, are peer workers paid as much as you? Or are they on zero-hours or temporary contracts?
Neorecovery pervades the ‘recovery’ research industry, just as it does clinical services. Where are the democratic, user-led studies on ‘recovery’ interventions or services? How many have the NIHR funded?
We couldn’t find any.
Randomised Controlled Trials and systematic reviews led by professionals, reporting on primary studies led by professionals, dominate hierarchies of evidence, and complex interventions proliferate and facilitate professorships. Yet, this is in direct contrast to the democratic nature of grassroots recovery and its stance that ‘recovery’ is an elusive phenomenon that evades, psychiatric, psychological and scientific language or measurement – it is an experience that cannot be quantified or manualised. We know what it is because we experience it. Listen to us.
So, what’s wrong with this departure?
It’s clear that the traditional power imbalances that grassroots recovery strongly opposed continue to exist:
Neorecovery services and research are based on psychological theories of attitude and behaviour change, as well as educational theories. They are not embedded in our theories or values, or those of grassroots recovery, which are collectivist and use the social model of disability. Democratic and collectivist services are virtually non-existent. Services are not emancipatory.
Neorecovery prioritises professional policy, and service driven aims and outcomes. These include discharge, ‘reducing dependency’; work as a health outcome and return on investment. These are not our outcomes or aims. Like grassroots recovery, we firmly believe that subjective experiences of ‘living well’ should be the primary outcome and concern of all mental health services. We will tell you when we are ‘living well’.
We talked earlier about how neorecovery distorts and misuses language. In neorecovery, recovery becomes an obligation, and sometimes an aggressively promoted demand from professionals. It’s the same old, paternalistic attitudes of ‘professional knows best’, but now couched in the language of empowerment and independence.
A significant consequence of neorecovery’s professional status quo, is the emergence of what Bridgit McWade calls ‘key figures’ and their spheres of influence. These key figures have access to “material and institutional power”. Their dominance, as she states, has led to the marginalisation of grassroots definitions of recovery and the exclusion of mad people. This material and institutional power is prominently seen in the various ‘recovery’ consultancy services on offer and in the recovery research industry: The REFOCUS trial is the most widely known and cited Randomised Controlled Trial of a so-called recovery intervention. It received £2 million from the NIHR, but it was no more effective than usual care on all service user outcomes.
Let’s repeat that. The REFOCUS intervention was no more effective than usual care for service users.
Differences in Political Bias
The final departure we will discuss today is neorecovery’s political bias. Whilst we have spoken about the influence of neoliberalism several times so far, we need to examine this feature in a bit more detail.
It’s important to remember that grassroots recovery, emerged as a critical response to political and practice failures in the aftermath of deinstitutionalisation and medical / clinical recovery. It was highly critical of social injustices inflicted by politics and policy which neglected people with long-term mental health conditions in the community. However, neorecovery does not critically respond to, and perhaps unconsciously colludes with, policy and political injustices that impact on mental health services and people with mental health conditions.
Welfare Reform and Austerity are some of the biggest political injustices of our time for people living with mental health conditions. Like recovery’s original grassroots proponents, we too are being neglected in the community by policy and politics.
Yet, Neorecovery’s silence is deafening.
So, what’s wrong with this departure?
As Bridgit McWade eloquently asserts, grassroots recovery ‘has been politically neutralised’ by the very institutions it sought to challenge.
We ARE the grassroots and neorecovery has neglected our calls for social justice and collectivist action.
Since recovery emerged in policy, key figures and influencers were quick to align their visions of social inclusion, and later ‘recovery’, to government policy. This alignment with neoliberal policy, particularly welfare to work and work as health outcome policies have continued. A current example of such complicity is the continued emphasis placed on our ‘right’ to work, above other ‘rights’, that are by far more important to us and in fact to non-mad people too!
This is not an isolated quote. Key influencers frequently promote the importance of work, often alongside neoliberal statements about ‘Making a contribution to society’ and portrayals of work as the most significant way of achieving personal fulfilment.
We ask this team of key influencers to reconsider their statement and continued emphasis on our right to work above all else in light of the mounting evidence from, amongst others, the Equality and Human Rights Commission, the United Nations Rapporteur on Adequate Housing, the United Nations Rapporteur on the Rights of Persons with Disabilities, the United Nations Rapporteur on Poverty, and the High Court Rulings that found people with mental health conditions are actively harmed by punitive welfare reform and its catalyst, austerity.
The Work Capability Assessment process has been associated with: 590 Suicides; 279,000 additional cases of self-reported mental health problems and 725,000 additional prescriptions for anti-depressants in areas where higher reassessments were reported. People with a mental health condition are 2.4 times more likely to lose their existing Disability Living Allowance entitlement when transferring to its replacement, Personal Independence Payment, compared to physical conditions.
The deaths of our peers, colleagues and allies continue to escalate through lack of appropriately resourced services under austerity and punitive, coercive and degrading welfare reform.
The number of people out of work is not OUR fundamental injustice.
Neorecovery’s Cumulative Impact
So, before we conclude, it’s worth reflecting on the cumulative impact Neorecovery’s key departures, which we have discussed today, have had on the original population for which recovery was intended – those with severe and enduring mental health conditions. Sweeping ‘recovery’ policies and interventions ‘for all’, which are underpinned by educational, attitude and behaviour change theories – in the context of neoliberal individualism and compulsory positivity – have meant that neorecovery caters for the norm, the socially acceptable and the majority who have mild to moderate difficulties.
This departure is confirmed by the endless redistribution of resources from inpatient and secondary care to primary care, and the prioritising of low intensity, short-term, low-cost ‘interventions’. The closure of wards and day centres in the name of recovery is commonplace and is rightly identified by Slade and others as an abuse of ‘recovery’. Where has the money for Recovery Colleges been taken from? Who is not getting a service now? Who’s needs are no longer being met?
Short-termism, low cost and standardised interventions for all, reflect neoliberal individualistic ideals of self-sufficiency and its mantras that ‘everything is within your reach if you just try hard enough’. This sets people with long-term psychosocial disabilities up for failure. These services and interventions mimic the prescriptive, linear, mechanistic process from A to B that grassroots recovery opposed because it does not afford flexibility for complex and long-term needs.
Grassroots recovery, including Deegan in 1988 and Anthony in 1993, actively advocated for a comprehensive community support system and an increase in long-term support. 18 years since recovery became policy in the UK and 31 years since Deegan spoke about her experiences. We’d like to ask:
Where are the long-term, flexible alternative services and support, based on collective values?
Where is the increased investment and comprehensive community support systems that Anthony spoke about?
Where are the democratic, truly user led services?
We can’t point to Victorian crumbling buildings to symbolise our confinement, ill-treatment and exclusion from society today. Neorecovery is much more insidious. Like grassroots recovery, our confinements, are ideological and politically sanctioned BUT they are hidden and illusive. Neorecovery promises to uplift and protect us, while simultaneously taking away our dignity, support and safeguards in the name of ‘independence’ – an independence we are not allowed to self-determine.
If material and institutional power remains with key professional figures, grassroots notions of recovery will forever be side-lined. Affording very little voice or room to those of us who are mad, and also mad about the way recovery has been co-opted, hijacked and distorted beyond recognition.
So, as mental health nurses and researchers, we ask that you stay true to the original recovery vision. Remember the grassroots, those of us with severe and enduring mental health conditions. Don’t abandon us to neorecovery. By the time Recovery Colleges are crumbling buildings, it will be too late.
After the presentation we spoke exclusively to the Mental Elf! You can listen below:
(A PDF of the Keynote
with inserted references will be made available separately).
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Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16(4), 11-23. http://dx.doi.org/10.1037/h0095655.
Hannigan, B., Simpson, A., Coffey, M., Barlow, S. and Jones, A. (2018) Care co-ordination as imagined, care coordination as done: findings from a cross-national mental health systems study. International Journal of Integrated Care 18 (3) article number 12 (10.5334/ijic.3978).
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It’s World Suicide Awareness Day. Or week, or month – I forget how long this empty virtue signalling exercise goes on. And I thought to myself, as a survivor of more than one serious suicide attempt, what do I really want people to be aware of?
I want people to be aware of how scared I am of getting ill again.
Some background: I was in a severe mental crisis for about 16 months of my life, from January 2016-April 2017. I have severe episodic depression, which makes my obsessive-compulsive disorder get very bad. When it flared up in January 2016 I thought I was a child murderer or molester. It is hell on earth, and I did not see a way out of it. Everything was just a black hole of despair, the joy fell out of everything I was interested in. I didn’t want to do anything. Anyone who knows me knows how up for a laugh I am, smutty, sweary, irreverent, BUSY. When I was ill I was just a humourless void, a bit like a walking corpse. Lads, I was fucked.
Things got very bad at the end of 2016 and I was admitted to the bin three times – on two occasions attempting suicide due to various factors, but being weaned off opiates too quickly was one, and going onto antidepressants that didn’t suit me was another. These medication issues led to very bad akathisia (an inability to stop moving) which often leads to suicide attempts.
After the second attempt I ended up getting sectioned and spent over three months on an acute ward. You can read parts of my story over on my blog.
Anyway so I was really ill, right? And you’d think it’s the worst thing about being in recovery, that fear of getting that sick again?
It is, but not in the way you think.
The symptoms of the illness, as bleak as they were, are not the thing I’m most worried about if things go south.
[DISCLAIMER: I had a lot of help compared to some people I know, but the bar is extremely low. I am also super privileged: I’m white, educated, intelligent, with a stable family and partner who can provide for me. I have lots of good friends around me. I had work I enjoyed and valued to go back to. I’ve never had to deal with the DWP. I’m cisgendered, straight and physically abled. In my case I also won the postcode lottery in terms of getting access to the Centre for Anxiety Disorders and Trauma at the Maudsley Hospital, one of the only specialist centres for treating OCD in the country. AND IT WAS STILL ABSOLUTELY BLOODY AWFUL FOR ME.]
Here is why I’m really worried about getting ill again:
I’m worried about getting ill again because I might have difficulty even persuading my GP to refer me to the CMHT. I might end up with absolutely no help for a severe crisis where my brain is trying to kill me.
I am worried that if I am referred to the CMHT, I might only be able to see a patronising CPN once a week for three months, with very occasional psychiatrist meetings. Things the CPN said to me have included ‘Well, if you’re going to kill yourself it’s your choice’.
I am worried that if I present at A&E because I feel unsafe and I’m fighting an almighty battle in my head to try and not kill myself, I will likely be sat there for hours before a condescending member of staff comes and tells me to go home because I am attention seeking. Damn straight I’m attention seeking. I’m fucking poorly.
I am worried that if I get referred to the Crisis Team, they will probably come to my house once a day for a month for about 10 minutes at a time. They will tell me to do a crossword or have a bath when I tell them I feel unsafe and suicidal.
I am worried that if I go into an acute ward, I will be treated like a child, punished for harming myself, and patronised beyond belief. I will be assumed to have so-called ‘Borderline Personality Disorder’* and ‘punished’ by staff accordingly. I will be completely at the mercy of whichever staff are on the ward on a given shift, and whatever patients are in at the same time as me. Patients I developed real beef with while in there last time might also be there (you end up falling out over stuff like ‘who gets the jacket potato for lunch’ and ‘who gets to choose which channel the telly is on’, because you revert to being a toddler). Staff I complained about after I left might be there. It scares me shitless.
I am worried that if I need to access my specialist treatment centre again, there will be a six month plus waiting list even after I am accepted on assessment. This nearly killed me last time.
I am worried that if I need to go off work again, I will have to deal with Occupational Health. This has been both a positive and terrible experience for me at different times.
I am worried that if something happens to my partner and/or parents, I will have to deal with the DWP in order to be able to eat. This is unlikely, but possible.
All these worries are actually scarier to me than the symptoms of my illness.
Please stop telling us to ask for help, and start thinking about how society and the psychiatric system needs to change in order for people to receive the care and help they need.
I ‘recovered’ despite the system, not because of it.
The imperative to be positive, to have what is lauded in the workplace under neoliberal capitalism as a ‘Positive Mental Attitude (PMA)’, has seeped into every area of human life, and it is terroristic. The obligation to wrap up one’s distress in a gift box with a pretty ribbon, to mask the absolute horror show that can be bestowed upon some of us in the form of mental torment, is nothing less than a violence. As we have learned from those who are subject to racism and intersecting oppressions, it is what these things do to the psyche, the way they get under the skin, into the marrow, and woven into the very fabric of our selves, that does the most damage. It is a colonization of the mind.
The positive police have set up shop in every mental health service. We should write gratitude lists, mindfully eat raisins, HOPE (help other people every day), list our strengths on care plans, and think about where we might want to be in five-year’s-time when the next hour feels unsurvivable. My current care plan asks me to document my long term goals and how I will achieve them; the boxes to fill in read like an appraisal form, or something to put in a personal statement in which I try to convince someone I deserve a particular position. The form used to be about the difficulties we experience, what help we need – not an instruction to account for oneself and how we might materialise the things we want out of thin air, driven by pure (and probably literal) hunger for it.
I run a writing group for people who experience ‘psychosis’. Last week one of the members was trying to write something based on a prompt I gave them and said, apologetically, that she had nothing positive to write. I was a bit startled because I have never asked them to write in a particular way, and certainly not to write with their positive pants on. I said that the group wasn’t a space that demanded positivity, but was a space in which to be real with yourself and others, to the degree with which you are comfortable. Her reply? “That makes me want to cry”. Her response made me want to cry. And shout. What are we doing to people that we feel that unless we can speak positively we shouldn’t speak at all, particularly about the reality we experience? This violence rips words from throats; puts a sterile spin on the diverse range of human experiences; whittles us away to silt; isolates; individualises; and expects us to swallow patronising platitudes in the name of ‘recovery’ so that we may be deemed worthwhile (read: productive) subjects.
I don’t want to go all John Lennon on you, but imagine if we let people be. Imagine if we accepted that it isn’t wallowing and being resistant to treatment to be honest about how we feel? Imagine if we were willing to hold that space for people with care, and to sit alongside them in it. Imagine if we decolonised the narrative, stopped asking people to superficially cover wounds that need suturing and healing from the bottom up. Contrary to neoliberal propaganda, of which the recovery discourse is fast becoming a sacred part, this doesn’t cause people to be stuck in a sick role and too dependent (whatever that means given we are all dependent on others), but allows for the possibility of being seen, being accompanied, and possibly moving through it with help.
Interestingly, the group member I mentioned above, though speaking of her fears and upset of the previous two weeks, wrote a very positive poem. I am not convinced this is because she miraculously felt that way, but because the obligation to be positive has hijacked her from the inside. Violence isn’t always bloody.
– Eleanor Higgins
Recovery In The Bin (RITB) is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International(CC BY-NC-ND 4.0)
One of the things I’m feeling a lot at the moment is the massive divide being successfully constructed between:
1. Those of us who are long-term dependent on state disability benefits to live.
2. The rest of society.
This is absolutely deliberate.
People who aren’t dealing with the DWP for disability benefits have no idea how traumatic and violent and all-encompassing it is. It is an ongoing trauma for a lot of us.
Pretty much everyone I know who, like me, relies on disability benefits for rent/food/bills/life money, has had multiple traumatic experiences. And that’s on top of the GIGANTIC amount of work that the assessment process involves: do to it successfully requires a lot of specialist knowledge, writing skills, capacity for loads of admin, having to contact people, arrange medical appoints which are a total waste of patient and NHS resources, attend horrific ‘assessments’ , try to find advocacy etc
And being forced to do this all to the tightest timescale possible.
We deal with a level of surveillance and arbitrary punishment that, rightly,
has been judged by multiple independent analyses to be a state driven deliberate breach of the human rights of disabled people who have the fucking gall to be poor and/or unable to work.
Loads of the techniques of psychological pressure were developed first in one of the home office/ foreign office/ DWP, and then exported to the others. Nice, huh?
If you’ve a strong stomach and/or are not directly affected, more on that here.
Basically the gist of this is, in which we discover until recently there really was a controversial government department which researched and tested “behaviour modification techniques” for implementation in aggressive state policy:
“Conservative anti-welfare discourse excludes the structural context of unemployment and poverty from public conversation by transforming these social problems into individual pathologies of “welfare dependency” and “worklessness.”
The consequence is an escalating illogic of authoritarian policy measures which have at their core the intensification of punitive conditionality. These state interventions are justified by the construction and mediation of stigma, which is directed at already marginalised social groups that the policies target. The groups, which include sick and disabled people, people who are unemployed, are painted with a Malthusian brush, as a “burden on the state” and a drain on what are politically portrayed and publicly seen as scarce resources in an era of austerity.”
Political processes of scapegoating, stigmatisation and outgrouping have been amplified by a largely complicit UK corporate media. Examples of its work are all over the DWP. PREVENT. The whole Hostile Environment project. There’s plenty more, I’m sure.
Which is why I’m not exaggerating when I name this as state terrorism.
A bunch of disability and civil liberties activists/campaigners/lawyers discovered the existence of the ‘nudge unit’. So they made Freedom f Information requests to try and find out what the hell government money is being spent on.
Government solution? To privatise the department and turn it into an ‘institute’ to avoid scrutiny. And to drain more state cash into private pockets.
Anyway, back to us, trying to survive in an increasingly violent and reactionary society with the vast machinery of the right wing state bearing down on us.
This shit and much more stuff like it = many of us are scared to leave the house, post any pictures of us looking happy on social media, be photographed at events/protests.
We’re cut off from participating in civil society.
It’s absolutely deliberate: the more surveillance, the more the DWP poke their nose and disclosure agreements into every area of our lives, the scarier it is to be out in the world even when we aren’t disabled by society.
And – for many of us – there are multiple other oppressions we’re dealing with too. Disability is inextricably entwined with race, class, gender, gender id, immigration status, sexuality and poverty.
Our lives are FUCKING HARD.
The surveillance/sanctions regime is a deliberate tactic to put extra pressure on already vulnerable people. It’s punishment for being vulnerable and in need. It’s also eugenics: it’s about disabled people being regarded as disposable/barely/not human. It’s an idea with deep roots in British society.
And they’re only just getting started. Looking at Bloody Boris’ fucking cabinet terrifies me, eg right now the DWP is trying to get its hooks into NHS files. The proposal is dressed up in fake nicey language but basically it would mean that if you claim disability benefits, you have no privacy or confidentiality during medical appointments. It would be horrific. I know that there’s a lot of pushback against this from loads of NHS groups, thank fuck.
I don’t have much hope, and I feel a lot of the time the clock is ticking on how long I can survive before they break me, or make me homeless again or otherwise fatally fuck me up. That worry never leaves me. Which is another reason for stopping dealing with them for now.
Because I realise now: I’ve become institutionalised. I live inside an invisible cage built by the DWP (and social Scare, of course. Let’s not forget them. Bastards)
By institutionalised, I mean, for eg – I anticipate and strategise against DWP sanctions automatically whenever I think, open my mouth, and especially if I leave the house. Any time I think about doing anything out of the house that might improve my life, (eg an art class, or an event that a photographer is at) I freak out over whether it will trigger sanctions.
Because although it’s not likely, it does happen.
It’s a perfect panopticon. They fuck over just enough people to make all of us realistically terrified about it.
And it’s a deliberately and increasingly asymetric system.
Ie: getting the benefits takes huge amounts of work, and can take years. But the state can take them away in an instant.
There’s also the alienation: I deal with this monster that infests every area of my life. People who don’t deal with it mostly have absolutely no idea how hard our lives are. How we don’t go a week on social media without hearing about yet another death caused by the system we’re reliant on.
A system that is our right.
And it should be the right of anyone living here, btw. And isn’t anymore – that’s a whole other pile of DWP fuckery that’s been happening over the past decade or so.
Fuck borders and fuck nativist politics always.
But my one hope is that I see so many grassroots people/groups/organisations/communities doing mutual aid, advocacy, support, skill sharing etc. A lot of it is very informal and grassroots and it’s amazing. So you get people on random fb forums putting hours into helpful /detailed/informed responses to questions. You get people sharing often traumatic details of the assessment process because they care about someone else going through the same thing. It’s fucking amazing. But we shouldn’t fucking be going through this shit in the first place.
More specific stuff re the ”invisible cage’/panopticon:
CW: moar DWP ranting. Also, tho, theory.
Which isn’t actually fucking theory for me. It’s my daily life.
The DWP is absolutely a panopticon. I’m living in a fucking panopticon. Except it’s invisible. And specifically designed to marginalise already vulnerable people.
So most people don’t even know it exists. And often don’t believe you when you tell them. And it fucks you up so sometimes* you forget that you’re living in a panopticon and just blame/hate yourself.
I’m living in a panopticon in twenty fucking nineteen in a rich White Western country that likes to think of itself as:
1. Liberal (it isn’t. There are important traditions of liberalism in this country. Traditions f radical internationalist anti colonial/anti racist socialism, communism, anarchism. Powerful histories of working class people of all races doing practical radical political work. And loads more. Britain’s dominant character as a ‘nation’ in general, in practice ends up defaulting to English norms’ . Which prize conformism, hierarchy, subtle powerful coded signals.
Its all about us ‘knowing our place’.
Riz MC nails it in ‘Englistan’:
“God save the queen
Nah she ain’t mates with me
But she keeps my paper green
Plus we are neighbours see
On this little island
Where we’re all surviving
Politeness mixed with violence
This is England”
2. Modern. Modernity isn’t inherently good – in English, it’s a category inseparable from white supremacy and capitalism and patriarchy and and and.
But my main issue is that the idea that the UK is modern is fucking laughable. UK = basically feudal neoliberal empire-hangover capitalism. Doesn’t that sound just GREAT?
If you think I’m exaggerating – bear in mind that our new Prime Minister is related to the royal family. in twenty fucking nineteen.
Thinking about the DWP as a panopticon also usefully reminds me that there’s a reason that a fucking White English public school-and-oxbridge man came up with with the panopticon. These same people still largely run the country OVER TWO HUNDRED YEARS LATER.
“Jeremy Bentham, an English philosopher and social theorist in the mid-1700s, invented a social control mechanism that would become a comprehensive symbol for modern authority and discipline in the western world: a prison system called the Panopticon.
The basic principle for the design, which Bentham first completed in 1785, was to monitor the maximum number of prisoners with the fewest possible guards and other security costs. The layout (which is depicted below) consists of a central tower for the guards, surrounded by a ring-shaped building of prison cells.
The building with the prisoners is only one cell thick, and every cell has one open side facing the central tower. This open side has bars over it, but is otherwise entirely exposed to the tower. The guards can thus see the entirety of any cell at any time, and the prisoners are always vulnerable and visible. Conversely, the tower is far enough from the cells and has sufficiently small windows that the prisoners cannot see the guards inside of it.
The sociological effect is that the prisoners are aware of the presence of authority at all times, even though they never know exactly when they are being observed. The authority changes from being a limited physical entity to being an internalized omniscience- the prisoners discipline themselves simply because someone might be watching, eliminating the need for more physical power to accomplish the same task. Just a few guards are able to maintain a very large number of prisoners this way. Arguably, there wouldn’t even need to be any guards in the tower at all.”
“Michel Foucault, a French intellectual and critic, expanded the idea of the panopticon into a symbol of social control that extends into everyday life for all citizens, not just those in the prison system (Foucault 1970). He argues that social citizens always internalize authority, which is one source of power for prevailing norms and institutions. A driver, for example, might stop at a red light even when there are no other cars or police present. Even though there are not necessarily any repercussions, the police are an internalized authority- people tend to obey laws because those rules become self-imposed.”
* ie almost all the time.
A final thought:
The tories are trying to kill me.
And a LOT of other people.
And they’ve already killed so many.
Black people. Muslims. People of Colour.
Migrants, particularly guess what, black people, muslims, people of colour.
Disabled People. Mad people.
The ‘wrong kind’ of women.
Working class people
Think about what it’s like for those of us who tick most or all of these boxes.
Try to conceive of the firestorm that we’re living in.
Ella and I were patients on the same psychiatric ward. We were both detained under section two of the Mental Health Act. She was perhaps the quietest and most withdrawn patient on the ward at the time. She seemed deeply depressed.
We all felt very protective towards her, because she seemed so young and vulnerable. Indeed, on the day I was discharged, I recall hugging her tightly and wishing I could take her with me.
A few weeks later, Ella took her own life. She was still sectioned in the psychiatric hospital at the time.
Ella had been allowed to gain access to items which she used to end her life. At her inquest, the psychiatrists said they had not restricted her access to them because they wanted her to “take more responsibility” for her own safety. But surely the state had taken responsibility for her safety at that point – she was detained under the Mental Health Act.
I run a Suicide Crisis Centre which is independent from mental health services. Clients often tell us that mental health teams are emphasising that they need to take personal responsibility for managing their own crises. Perhaps the teams feel that this will discourage service users from becoming dependent or expecting that a service will “save” them.
It’s possible to argue that we should all take responsibility for trying to stay as mentally well as possible and use as many strategies as we can in order to do that. Indeed, that can feel very empowering. But we may all reach a stage when our strategies no longer work, and we need significant help. When we reach that point of crisis, it may be the least appropriate time to expect someone to be able to “take responsibility”.
When a person is in mental health crisis, their ability to think clearly is very often impaired. That’s the nature of crisis. Our thinking may be chaotic at that time. It is not always going to be possible for someone to think clearly enough to take steps by themself to start to navigate their way out of the crisis.
At the point of crisis, it is the time when you are least likely to be able to see a route forward, without support and care to do so.
There are ways to help empower people who are under the care of a service so they do not become dependent on it. These alternative methods do not involve telling someone in crisis to “take more responsibility.” Giving people more control over their care at an earlier stage, when they are not in crisis, can be an effective way of doing that.
Requiring someone in crisis to “take more responsibility” may heighten their despair, because they simply cannot do so at that point.
They have taken the step of asking for help, but have been told instead that they need to find their own resources. Surely they need to feel reassured that if they seek help, there will be support, kindness, empathy and care.
I know that the other patients on the ward continued to wrap Ella in care and kindness. They watched over her and alerted staff to the fact that they were extremely concerned about her suicide risk. But that responsibility of watching Ella should not have fallen on other patients.
Ella’s death should make us question to what extent the emphasis on service users “taking responsibility” has gone much too far, and risks causing a failure to adequately protect life.
As Ella had died while under the care of the state, in a psychiatric hospital, there was a jury at her inquest. The jury concluded that her death was a suicide which was “contributed to by her ability to gain access to items to aid suicide”. They took a very different view from the coroner, who in my opinion accepted too readily the mental health service’s justification for not restricting access to certain items. The coroner commented that such restrictions would be “draconian.”
Did you know that psychiatric wards run their own Twitter accounts now? What’s next, Instagram? Perhaps we can lose the Care Quality Commission and start carrying out reviews of hospitals on Trip Advisor instead.
Sussex Partnership Foundation Trust has an extensive Twitter network, with official ‘ward twitters’ and multiple ward staff running their own accounts. They call the patients ‘service leaders’ – language that denies the actual status of patients, often detained against their will, on psychiatric wards. The staff are referred to as ‘leader leaders’, trained through the ‘Leader Leader Academy’ which promises ‘quality improvement through Clarity, Competence, Control and Courage’ (is satire dead?). These ideas are taken from an American naval captain, turned public speaker, who suggests every business should adopt a ‘leader-leader’ model of management rather than a ‘leader-follower’ approach. The aim is to push responsibility as low on the organisational hierarchy as possible and for all employees to take ownership of leading the business. I somehow don’t think he was talking about patients detained under mental health legislation when he came up with that.
Am I really a ‘service leader’ while locked on a ward with little say about when I leave, whether I take medication and what belongings I have access to? If we flatten hierarchies to the point that we deny their existence, aren’t we just gaslighting those at the bottom? My own experience in a Sussex Partnership hospital was not one of a ‘service leader’. The problem with using such dishonest language is that it obscures the power and responsibility of those who can actually wield it. For example, a Sussex Partnership nurse tweeted a debrief form that had been filled in by a ‘service leader’ after they’d been restrained. What led to such poor judgement? Perhaps an unintended consequence of this language change is that staff begin to actually believe that patients have equal power, and that it’s OK to share their private, medical information on Twitter.
One of the wards using these terms is a psychiatric intensive care unit at Mill View Hospital. I was appalled to see multiple pictures of ‘service leaders’ posted on their Twitter feed, with smiley emojis superimposed on their faces. One of these pictures was posted by the ward manager, then ‘liked’ and retweeted by the CEO of Sussex Partnership, Samantha Allen. The patients would be clearly identifiable to anyone who knew them and the photos were humiliating, degrading and in clear contravention to multiple data protection laws (not least, that staff had the original, unedited pictures of patients on their phones).
Who are these Twitter accounts serving? Every kind of ‘professional’ Twitter sphere can come across as self-congratulatory, but the stakes are so high here. While I can understand the value in mental health professionals using Twitter to share best practice, it should never be at the expense of dignity and confidentiality. The tone of these ward accounts is all wrong – happy, smiley emojis covering the faces of those detained, talk of infantilised fun with the ‘service leaders’ – it paints an idealistic picture of life on the ward that is pure fantasy. I don’t go into hospital looking for ‘fun’. I hope that I receive timely care, that my human rights will be upheld, and that my dignity and confidentiality will be respected. Sadly, none of this has been the case in my own recent experience of Sussex Partnership hospitals.
The emoji pictures of patients have since been removed, after an uproar from professionals and service users alike. However, data still remains that could be used to make a jigsaw identification of a patient. The ward ‘newsletter’ includes a patient blog section where details about patient’s care and life stories are shared, and so-called ‘service leaders’ are still visible in some pictures.
It is all the more galling because the problems at Mill View Hospital have been well documented in recent years. There was a death on one of their wards as recently as December last year, that resulted in a coroner ordering an immediate investigation into safety. She described the ward involved as “mismanaged and chaotic”, and accused Mill View staff of giving the subsequent police investigation “the run around”. I am left wondering how the families of those who died there would feel about this kind of gratuitous self-promotion on social media.
Another problem on Twitter is that the ideas shared can be lost in their repurposing. One ward in Leicestershire, posted a picture of postcards with motivational quotes on, stating they were writing a personalised crisis plan on the back for each of their patients being discharged. A nurse from Sussex Partnership took this idea and recreated it, but instead of a personalised crisis plan, they listed generic crisis numbers on the back. What was a nice idea – personalised crisis plans on more than just hospital stationery – lost all it’s substance and became just another opportunity for ‘likes’ on Twitter. I left a Sussex Partnership hospital earlier this year without a proper care plan. If they had given me a motivational postcard with generic crisis numbers taped to the back, it would have felt like a punch in the face.
There are real people in vulnerable situations behind these Twitter blunders, that are having their human rights totally disregarded by Sussex Partnership staff – just for some ‘likes’ on social media. It suggests a culture where PR is valued over anything else. Until Sussex Partnership take raising their standard of care seriously, we should watch their Twitter rebrand with caution.
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Patients with Emotionally Unstable Personality Disorder expected to “take responsibility” for their safety.
It appeared that a level of responsibility was being given to patients with Emotionally Unstable Personality Disorder (Borderline Personality Disorder) to keep themselves safe, even when they were detained under the Mental Health Act or “sectioned” in psychiatric hospital. “Keeping safe” was used in the sense of refraining from self-harm or suicidal acts.
However, it was not apparent what preparation or help they had been given to enable them to “take responsibility” for their safety.
Having spoken to family members, there are indications that there will be more evidence of this being repeated in other cases, in inquests to be heard in 2018.
In terms of the inquests already attended:-
AF was detained under the Mental Health Act in psychiatric hospital. AF had been given a diagnosis of Emotionally Unstable Personality Disorder/Borderline Personality Disorder.
The psychiatric staff giving evidence spoke repeatedly about the need for AF to “take more responsibility” for maintaining her own safety. The coroner asked if she had “the tools” to do this.
AF had not been provided with therapies such as those referred to in the NICE guidelines for Borderline Personality Disorder e.g. Dialectical Behaviour Therapy (DBT). NICE refers to DBT as “an intensive psychological treatment that focuses on enhancing a person’s skills in regulating their emotions and behaviour. The therapy can help a person gain control of behaviours such as self-harm and substance abuse”. Psychiatric staff gave no indication of what they had done to prepare and support AF to be able to “take more responsibility” for her safety.
Therapies are particularly important as there is no specific medication. Indeed the NICE guidance (Clinical Guideline 78) states: “You should not usually be offered medication specifically to treat Borderline Personality Disorder or for any related symptoms or behaviour (such as self-harm, unstable moods and risky behaviour).”
SH had been given a diagnosis of Mixed Personality Disorder (Borderline Personality Disorder and Antisocial Personality Disorder). His family told us that they felt he had been given too much responsibility for maintaining his own safety and refraining from suicidal acts. SH was not provided with mental health care and support (such as the Crisis Team) after suicide attempts or self-harm incidents during the last few months of his life.
There was no indication at inquest that SH had been provided with therapies referred to in the NICE guidelines for Borderline Personality Disorder, including DBT which NICE states can help a person “gain control” of self-harm. There was also no indication that he had been given the recommended treatment for Antisocial Personality Disorder.
The NICE guideline on Antisocial Personality Disorder recommends psychological therapies for managing and treating the symptoms and behaviours associated with Antisocial Personality Disorder. “Group‑based cognitive and behavioural therapies help to address problems such as impulsivity, interpersonal difficulties and can help to reduce offending”.
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