The unRecovery Excellence Framework #uREF2019 – A request for peer reviewers.

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Recovery in the Bin would like to invite allies and peers to review a list Rita Bins has collated of publications that reference Recovery in the Bin!

What did Rita do? (Methods)

Rita collated a reference list after making a public request on Twitter and after systematically searching google scholar, google news and google search.  These tools were chosen as they are freely available to all on the internet – they are not hidden behind paywalls and do not need to be accessed via membership of an academic institution.

Rita decided that she would include all types of publications in her reference list, respecting and privileging all forms of publication democratically.  This included peer reviewed journals, books and textbooks, theses, reports, magazine and newspaper articles, blogs, presentations and posters.

To be included in this list, all publications were required to reference Recovery in the Bin OR explicitly name Recovery in the Bin (via a secondary citation or without providing a reference).  All publications by Recovery in the Bin were excluded.

What can I do to help Rita?

Please contact us via email recoveryinthebin@gmail.com or by Twitter DM @RITB_ if you notice that your publication has been omitted from Rita’s work.  Or indeed, if you have any corrections.  The full reference list can be found here.

What will Rita do next?

Once we have received feedback from our allies and peers, we will publish the unRecovery Excellence Framework #uREF2019 as a blog in due course.

We will also be working behind the scenes, under Rita Bins’ leadership, to synthesise and analyse what people are saying about us.  We will be publishing the methods and results of our survivor led scoping review in a journal.  Rita Bins is an unacademic with some impressive methodological and literary skills.

Rita would like to thank all translators who have supported this work:

Andreas Vedeler – Danish and Norwegian.

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Neopaternalism – New Wave Paternalism In UK Mental Health Services

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Artwork by: @JADEELIZB

Neopaternalism refers to the practice, often seen in MH services, of professionals imposing their versions of ’empowerment’ and ‘independence’ etc. on individuals in their care regardless of the individuals own views. Typically, ‘independence’ in this context is near synonymous with discharge or cuts to care provision.

Neopaternalism prioritises the professional’s worldview, agenda, values and goals. As such, it mirrors traditional paternalism, but the content and language used is different. Emphasis on independence in neopaternalism is often framed as contrasting to traditional paternalism in which providing care is perceived as restricting a person’s liberty and autonomy. However, this obscures the fundamental similarity in which both approaches impose the powerful’s agenda on the less powerful.

Neopaternalism is in some ways worse than traditional paternalism, which at least resulted in some care. Traditional paternalism involved helping by ‘doing to’ an individual in their perceived best interests, whether or not the individual found it helpful. Neopaternalism involves ‘helping’ by not doing anything (supposedly ‘empowering’), whether or not the individual finds that helpful. Neopaternalism is oppression skulking behind an empowerment façade.

Neopaternalism pervades the co-opted neoliberal recovery approach which is every bit as coercive as other models: there is an obligation to recover, find certain things helpful & failure to do so is pathologised by both services (PD) & alternative models (sick role). Underlying neopaternalism is pressure on individuals to fulfil neoliberal policy outcomes, conflating individual/citizen needs with government agendas.

 Example:

“We’ve decided for you that you must not be dependent on us. Your opinion doesn’t matter because we are doing this for you, in your best interests. We are empowering you by discharging you to promote your independence. You must take responsibility. Nb We will not admit it has anything to do with neoliberal ideology or cuts”

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The RITB-Warwick-Edinburgh Neoliberal Mental Wellbeing Scale

Building on the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), The RITB-Warwick-Edinburgh Neoliberal Mental Wellbeing Scale (RITBWENMWBS), is a 25 point scale that has not been validated on any population. We expect the scale to be used widely nationally and internationally in all recovery orientated mental health services.

It draws on the total lack of evidence base for the items it measures, to rate Recovery™ Dependency and Conformity. It is the individual’s responsibility to measure their Recovery outcomes so a score sheet will not be made available. This will empower individuals and ensure the scale forms a meaningful addition to their recovery journey. Or else…

Click to embiggen image HERE or download your own PDF copy to fill in>>>RITB-Warwick-Edinburgh Neoliberal Mental Wellbeing Scale

The RITB-Warwick-Edinburgh Neoliberal Mental Wellbeing Scale 1

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Problems With The ICD-11 Classification Of Personality Disorder @WHO #ICD11

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By Dr. Jay Watts, Social Psychiatry, Queen Mary, University of London,

The forthcoming International Classiffication of Disease, 11th revision (ICD-11), includes a reconceptualisation of the categorisation of personality disorders with an explicitly expansionist objective. The ICD working group assumes this is a positive step, yet the grounds for this assumption are unclear.

Personality disorders will no longer be classified categorically, but rather using dimensions of severity— mild, moderate, or severe.1 An additional category of personality difficulty will be demarcated not as a disorder, but as the equivalent of a z-code in ICD-10—ie, a non- disease factor that affects health status and encounters with health services. Following assessment of severity, clinicians will then have the option of specifying one or more of five domain trait qualifiers: negative affectivity, anankastia, detachment, dissociality, and disinhibition. ICD-11 will include new guidance for personality disorders to be diagnosed during childhood, albeit with caution, as they had previously been “inappropriately set at late adolescence or early life adult life”[1]. Additionally, the revision will include a borderline pattern qualifier that is not dissimilar to the symptom profiles outlined in ICD-10 and the Diagnostic and Statistical Manual of Mental Disorder, 5th edition.

In their proposals, WHO are neglecting to incorporate progress in alternative approaches. The Hierarchical Taxonomy of Psychopathology transdiagnostic system follows quantitative nosology to its logical conclusion, side-stepping construct validity problems by focusing on internalising, externalising, detachment, thought disorder, and somatisation, as they apply across the spectrum of psychiatric diseases [2]. The #TraumaNotPD movement reframes borderline as a form of complex trauma, evidenced not only by a robust literature connecting childhood trauma and the psychosocial environment with identity disturbance and interpersonal difficulties [3], but also patient testimonials supporting the benign face validity of such an approach.

With the publication of ICD-11, it is likely that more patients than before will be told they have a personality disorder. An explicit aim of the WHO remit for the ICD working group was to increase the diagnosis of personality disorder, on the basis that only around 8% of patients in the UK received this diagnosis, despite suggestions that prevalence of personality disorder is about 40–90% for inpatients and outpatients with psychiatric disorders [1]. The only eld study of ICD-11 diagnosis in practice looked at prevalence in 722 patients presenting with either health anxiety or anxiety and depressive disorders, or inpatients with psychiatric disorders. It showed not only that ICD-11 led to more patients being diagnosed with personality disorder (292 [40·4%] of 722) than did ICD-10 (244 [33·8%] of 722), but also that an additional 248 (34·3%) of the 722 patients were classified as having personality difficulties.2 Thus, 540 (74·8%) of 722 patients were diagnosed as having personality difficulty or disorder [4]. The assumption from WHO is that diagnosis using ICD-11 will prevent patients receiving treatments that they might not benefit from, introduce new treatments, and decrease the stigma that can be associated with personality disorders. However, no evidence as yet supports these assumptions.

In a systematic review investigating personality disorder diagnosis and different clinical populations, a diagnosis often procured negative effects on identity and hope(similar to a diagnosis of psychosis) and did not provide functional utility (such as access to treatments) [5]. This is because the idea of a personality disorder often prejudices clinicians to situate symptoms of distress as manipulative, attention-seeking, and wilful6 and enables disdainful, neglectful, and sometimes even abusive responses that would be recognised as gross misconduct elsewhere in the mental health system, such as ignoring or disbelieving suicidal ideation [7].

The shaping effects of labelling someone as having personality disturbance or disorder appear to be entirely absent from consideration in the revision of the classification of personality disorder, with little or no consultation with service-user led organisations best placed to comment on real-world implications. Clinicians see treatment outcome less optimistically if they are told that someone has borderline personality disorder [8]. Patients have regularly reported that being diagnosed with a personality disorder is the ultimate character slur [9], leading to realisation of every worst fear one has had about themselves, and often reinforcing messages from abusers that they are inherently problematic [10]. To impose this discourse on even more patients, including adolescents, risks setting up a self-fulfilling prophecy by which expectations of a negative trajectory are established, and subsequently met.

Expansionism becomes more dangerous still when we consider that an explicit aim of the WHO working group was to develop a proposal that could be used in low-resource settings by people who are health workers with minimal professional training [1]. Encouraging such a cursory approach to personality diagnosis not only promotes negative thinking regarding differences in mental health and problematic norms, but also gives clinicians in severely overstretched services worldwide a ready signifier to block access to care to anyone who makes them uncomfortable, challenges them, or complains [11]. This will exacerbate discrimination against those from low-income settings, or with a poor education, who are more likely to meet diagnostic criteria for a personality disorder [12].

Borderline pattern has also been included in ICD-11. There is no scientific basis for inclusion, with “noticeable absence of evidence it’s a uni ed syndrome”, and overlap with mood, stress, and dissociation, rather than personality disorders [1]. Indeed “when an assessment was made of borderline features” in the modelling of personality traits “the domain structure seemed to disintegrate, and examining the full implications of this involved a great deal of the group’s time and early studies” [1]. Retention of borderline as a so-called hand- me-down diagnosis not only undermines the scientific claims of the new dimensional model, but also ensures that even patients who find diagnosis legitimising are disadvantaged, being coupled with a diagnosis that is openly contested.

Borderline has only been included in ICD-11 because of relentless campaigning from lobbyists, starting with a letter from the European Society for the Study of Personality Disorders in 2016, followed by campaigning from both the International and the North American Societies for the Study of Personality Disorders [1][13]. This led to a separate working group, though the Chair of the ICD-11 committee chose to exclude himself [1], having written “nothing about it is driven by personality. The very name borderline personality disorder betrays an abrogation of diagnosis” [14]. The discourse from WHO is that the pragmatic compromise of including a borderline pattern to assuage these lobbyists is now unanimous [1]. Unanimous for whom? Certainly not patients, the majority of whom are traumatised women who remain largely unheard and ideologically restricted (coshed) by this most misogynistic of classifications [7] and who cannot take refuge in a narrowly de ned new diagnosis of complex post-traumatic stress disorder, as so many had hoped.

1 Tyrer P, Mulder R, Kim YR, Crawford MJ. The development of the ICD-11 classiffication of personality disorders. Annu Rev Clin Psychol 2019; published online Jan 2. DOI:10.1146/annurev-clinpsy-050718-095736.

2 Kotov R, Krueger RF, Watson D,et al. The hierarchical taxonomy of psychopathology (HiTOP): a dimensional alternative to traditional nosologies. J Abnorm Psychol 2017; 126: 454–77.

3 Giourou E, Skokou M, Andrew SP, Alexopoulou K, Gourzis P, Jelastopulu E. Complex posttraumatic stress disorder: the need to consolidate a distinct clinical syndrome or to reevaluate features of psychiatric disorders following interpersonal trauma? World J Psychiatry 2018; 8: 12–19.

4 Tyrer P, Crawford M, Sanatinia R, et al. Preliminary studies of the ICD-11 classiffcation of personality disorder in practice. Personal Ment Health 2014; 8: 254–63.

5 Perkins A, Ridler J, Browes D, Peryer G, Notley C, Hackmann C. Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings. Lancet Psychiatry 2018; 5: 747–64.

6 Black DW, Blum N, Pfohl B, et al. Attitudes toward borderline personality disorder: a survey of 706 mental health clinicians. CNS Spectr 2011; 16: 67–74.

7 Phillips S, Stafford P, Turner K. Personality disorder in the bin. 2017. http://aspd-incontext.org/wp-content/uploads/2016/11/PDintheBin- London-PS-KJT-3.5.17-1.pdf (accessed March 28, 2019).

8 Lam DC, Poplavskaya EV, Salkovskis PM, Hogg LI, Panting H. An experimental investigation of the impact of personality disorder diagnosis on clinicians: can we see past the borderline? Behav Cogn Psychother 2016; 44: 361–73.

9 Shaw C. The most savage insult. Equilibrium Magazine 2012; 46: 23–26.

10 Gary H. A diagnosis of ‘borderline personality disorder’. Who am I? Who could I have been? Who can I become? Psychosis: Psychological, Social and Integrative Approaches 2018; 10: 70–75.

11 Recovery in the bin. A simple guide to avoid receiving a diagnosis of ‘Personality Disorder’. Clinical Psychology Forum 2016; 279: 13–16.

12 Coid J, Yang M, Tyrer P, Roberts A, Ullrich S. Prevalence and correlates of personality disorder in Great Britain. Br J Psychiatry 2006; 188: 423–31.

13 Reed GM. Progress in developing a classiffication of personality disorders for ICD-11. World Psychiatry 2018; 17: 227–29.

14 Tyrer P. Borderline personality disorder and mood. Br J Psychiatry 2014; 205: 161–62.

First Published in The Lancet

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Neoliberal Mental Health Rating Scale

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0-29: Totally inadequate life, which does not address the requirements of capitalism. Shows extensive understanding of how to be a productive worker but wilfully resists. Pervasive political engagement on the Left, including direct action. Rejects A-B marches (the only state-sanctioned form of quasi-protest). Has a bustcard tattooed on arm.

30-39: Mostly inadequate life which involves some mildly productive labour, but does not show much evidence of embracing capitalism or working towards improving economic productivity.

40-49: Poor life, which shows some evidence of economic productivity and understanding of what needs to be done, but lacks conscientiousness. Frequent A-B march attendee.

50-59: Satisfactory contribution to capitalism, showing an awareness of the need to make bosses rich and belief in the constructs of “meritocracy” and “social mobility”. However, shows some evidence of political engagement on the Left and dissent.

60-69: Good work, which treats capitalism with the respect it is due. However, still some mild political engagement, including attendance at A-B marches.

70-79: Excellent work, which displays exceptional contribution to bosses’ salaries including developing novel approaches to economic growth. No political engagement beyond laughing at socialist ideas expressed on BBC Question Time.

80-100: Outstanding economically productive work in virtually all areas of life. Married. Straight. Two children. Owns north London house. Donates to established neoliberal parties and corporate charities – in line for OBE for doing so. Has enabled multiple chief execs to buy yachts. Has a tech startup which will revolutionise mental health in corporate environments, seed capital for which came from remortgaging house. Vocal advocate of mindfulness in schools initiatives. Did a TED talk on helping others achieve their potential.

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What is Recovery? Who defines it? Why am I unrecovered?

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What does recovery mean to me? Well, after thinking about this for many days, the simple answer is that I have no idea. I don’t know what it might be like or feel like. What am I supposed to be recovering from? How do I recover? I’m not sure I can recover from some of the things that have happened and are happening to me. Neither am I sure I actually want to. I realise that the reason it’s hard for me to define recovery in my own terms is because the word has been so trampled over. Recovery has been sold to me by the MH system and other organisations. I’m bombarded with positive affirmations and stories from those who have recovered. I’m regularly told that I can recover but not how this is actually possible. Care Plans are now called Recovery Plans, Peer Support Workers are called Recovery Workers. I’m expected to fill in a Recovery Star before and after a MH crisis. I’m told I should go to the Recovery College. I see that being employed is linked with recovery.

I feel sick! I feel that I haven’t tried hard enough and that I am to blame. The oh so familiar feelings that I can’t label and that I have had since I was a kid return. Uuuurgh. I don’t choose to be unrecovered. Yet, I long for this thing they call recovery and am pleased for those that have recovered. It’s complicated and confusing. I think it has something to do with power, privilege and opportunities. I wonder whether to delete this sentence as I don’t want to offend anyone. I decide to leave it in for now.

I decide to look for a definition of recovery online. I look at a Trust Recovery Strategy:

“Our purpose is to create a culture and context in which people can recover: to provide interventions that enable people to take back control of their lives, to believe in the potential of everyone we work with so that they too can feel hopeful about their futures. We give access to opportunities so that people really can live the lives they want to lead.”

“Recovery can be seen as a process and can be most helpfully defined by three core concepts: hope, control and opportunity.”

I start laughing out loud to myself. I have none of these three things. One of the reasons that I’m unrecovered is because of the mental health system itself. This hostile environment is not a culture conducive to recovery. In my experience it has actually got worse and I don’t see it improving any time soon. How can I recover from having the shit and sticky label of ‘Bullshit Psychiatric Disorder’ slapped on to me two and a half decades ago. A label that is tantamount to saying that my difficulties come from within myself? I can’t get it changed or updated to CPTSD. I’ve tried. I’m told I’m lacking insight and that I’m failing to accept my diagnosis. My anger and complaints are pathologised as so called traits of a disordered personality. The label and all that comes with it is are the complete opposite of helpful and has led to neglect, abuse, and cruelty. I need a diagnosis to enable me to get support for my difficulties and for the best chance of getting welfare benefits. It’s MH services themselves who decide when to discharge me and this could happen at any time for failing to engage or for not recovering.

The childhood trauma I suffered has been ignored and in many ways I’m seen as a walking diagnosis and a set of symptoms which limits the choices of therapy I can access and how I am perceived as a human being. The group therapy I have had so far (DBT and Therapeutic Community) did not help. It made me feel worse. The few professionals that do understand say they are as frustrated as me about the MH system. How could they be? How do I recover from an illness I never had? How do I recover from childhood trauma when I have had no specific meaningful help to do this, and still feel like a victim and not a survivor? There is no specific trauma therapy as standard in the Trust and I have been turned down for funding by the CCG because of my ‘BPD’ label. I think about what recovering from incest would feel like. I don’t know. I wonder whether if I did recover, would this mean that I had forgiven my abuser? I don’t want to. I wonder how I can recover from the suicide of my little bro. Does anyone recover from something like this? If I did recover would that mean that I never think of him?

How do I recover from ongoing iatrogenic harm? The powerful, coercive, and controlling nature of the mental health system has caused me to be locked up many times against my will, sometimes I now realise illegally. I’ve been on a cocktail of drugs with no informed consent for decades that are contrary to NICE guidelines. I have had no support to taper and stop these drugs from services despite asking for many years. I’ve been restrained several times. Threats of MHA assessments, threats that if I don’t turn up for appointments that the police will come looking for me. My daughters have been contacted on several occasions and told to look after me 24/7 until a bed can be found and to call the police if needed. Our relationship has been ruined. I can’t recover from the continued loss of my human rights. How do I start to be kind to myself when the people who were and are supposed to care for me have and still do hurt me so badly?

How do I recover from transphobia? I’ve been told by professionals that I have ‘BPD’ because I am transgender or that I am transgender because I have ‘BPD’. The Trust do not follow their policy for Transgender Patients and I am doing my best to inform the professionals I see about transgender issues as I have not met any who understand. They need more training especially surrounding the way gender dysphoria and transphobia can affect my mental distress. I was outed as being transgender to my family by a MH professional who thought it a good idea to change my name on the system without thinking to ask my permission. My daughter was contacted as my nearest relative when I went AWOL from a locked up place. My family knew that I was transgender I’m sure, but I was gently and sensitively leading up to telling them in my own way and in my own time. They now equate a mental illness and a time they thought of me as completely crazy to my being a trans guy. They do not accept that this is who I am and always have been. Our relationship has been further ruined.

How do I recover from the coercive welfare benefits system and the doom filled feelings that come with this? DWP assessment processes, the fear of the brown envelope through the letter box, the sanctions, being investigated for fraud. Trying to prove to them that I am not able to work and that my difficulties are severe enough to get enough social security to survive on. The push I see from the Government to get everyone back into employment whatever the cost and that apparently work is good for my mental health and aids this thing called recovery. The fear that I may lose some of my disability benefits at any time which may force me into work when I simply am not able. This would lead to sanctions and debt and possible homelessness. How do I recover from the fact that I can’t afford to pay for therapy that may well help me? How do I recover from the fact that the Personal Budget I receive to employ a Personal Assistant to support me has decreased to almost nothing? The one thing that has helped me to be in control of having some sort of quality of life and social inclusion?

I still have no idea what recovery means to me or what it might be like or feel like. This I realise is because I am unrecovered. I can’t see that changing anytime soon. I do know that I have given up on the idea that I should live up to the definitions of recovery from others and the false ideals of what people think I should be and should do. I’m sometimes asked by professionals “what do you think would help you?” My answer remains the same as it always has been “To be dead”. But I’m not dead and I’m here aged 58 writing this blog. It’s painful this thing called ‘life’. I realise that I am privileged because I can and want to write down my own story of unrecovery and I think of the many that don’t want to or can’t. I think of how other people’s stories will be different to mine. I think of those who are not alive to tell their stories, some whose blogs I have read and some who didn’t get to write down their words.

I think it’s important that the stories of those that are unrecovered are heard. People like me are not invited to do keynote speeches at conferences or events and to be honest I feel too unrecovered to do so if asked. I can’t attend events to get my unrecovered voice heard unless they are free and travel expenses are covered in advance. I’m not the kind of service user who is included in co-production. Does anyone actually want to hear from the unrecovered? Could they learn anything from us? The drive towards this thing called recovery by the many powerful ones that don’t help me to recover is catch 22. I’m fighting to take back some power hope, and control but it isn’t working and this leaves me feeling suicidal. I wonder whether the words I have written will make sense to any of you reading them? I wonder whether people will comment to say how I should define recovery and how to work towards it? I don’t want my story misrepresented or twisted to fit into someone else’s narrative. It’s my story not yours.

By G

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Service User Experience From Mental Health Act Review

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This is the section of the Mental Health Act (MHA) review final report reflecting the views and input of service users. The MHA review involved, consulted and sought input from service users on an unprecedented scale and whatever happens to the final recommendations the feedback, perspecive and findings from service users should be widely shared not buried on some shelf at the department of health. Also people can link to it when they are getting #notallprofs lines from professionals or ‘that’s just your experience’… Well no, according to the MHA review it isn’t:-

SERVICE USER EXPERIENCE Pages 53-58 MHA Review

Service users have been at the heart of this Review, and we want to make sure their voices are clearly heard in this report. This section pulls together some key themes from the patient experiences that have been shared with us through our service users and carers survey, individual and group submissions, focus groups, engagement events and service user and carer group. We would like to thank those who contributed to debates, shared views and opinions and often revisited difficult or traumatic periods of their lives in order to help us. We should also like to thank any who facilitated feedback or made their own contributions as relatives, carers and friends. And in particular, we would like to thank our Service User and Carer Group which has been invaluable in helping us to shape our recommendations. Patients and carers have told us it is vital that their experiences, and their knowledge of what works best for them, are recognised and acted on, by this Review.

Overall, we have been disturbed and saddened by what we have heard from patients. Only 30% of respondents to our survey of service users and carers felt that they had been treated with dignity and respect, and whilst we accept that surveys like ours can sometimes have a bias towards recording experiences at the extreme ends of the positive/negative scale, this is clearly very worrying. Too many people are detained in wards that are far below the standard anyone would want for themselves or their loved ones. We are also aware that there is sometimes a disconnect between how staff perceive the care they give, and how it is experienced by patients. We agree. Too many have found that when they have previously voiced reasonable concerns or complaints, or spoken of the trauma detention and treatment has caused them, they have been ignored, or their accounts have been dismissed as being due to symptoms of disorder (an example of epistemic injustice, see box).

Epistemic injustice occurs when a person’s capacity as a person with knowledge is wrongfully denied. It is a phrase that some service users feel represents elements of their experiences during the detention process. Epistemic injustice could be when a person’s credibility is challenged for no good reason and their testimony is not believed. An example might be when a person’s treatment preferences are dismissed because the individual’s mental health diagnosis suggests that they are unable to think clearly or rationally about their options.

Some patients have reported neglect, both of physical and psychological health, and the experience of receiving impersonal care, leaving them feeling processed rather than cared for:

  • Many patients report being disparaged, disbelieved or ignored and have been subject to judgemental and paternalistic behaviour from those caring for them.
  • Some patients report coercive mistreatment such as the use of access to leave, or contact with families, as levers in order to achieve compliance, for example making ward leave or access to the telephone dependent on behaviour. Forced compliance can lead to institutionalisation which can delay recovery.
  • Hierarchical ward structures can mirror the negative experiences patients have had with other authority figures.
  • Lack of privacy is a problem – about 1000 inpatient beds are still in multiple bedded rooms. People face arbitrarily imposed restrictions such as being shut out of bedrooms during the daytime, or locked in bedrooms at night. This can increase levels of mental ill-health.
  • Many find it hard to retain links to their social networks and communities whilst detained and many lose contact with family and friends, as well as losing home, employment, or access to education. This can lead to patients being much worse off than before they were detained, for example being unable to work, homeless38 or worse.
  • Parents and carers of children, and those with learning disabilities or autism, told us that professionals do not always take the time to understand how best to communicate with a person with a learning disability, autism or both to try and understand what is causing their distress, or have the necessary skills to do so. We also heard that their attempts to share information and to remain supportive and involved when someone is detained have led them to be ignored or excluded because they are seen as ‘too dominant’, ‘overbearing’ or ‘over-involved’.
  • We have heard repeatedly of the distressing and unacceptable experiences from people from ethnic minority communities and in particular black African Caribbean men. Fear of what may happen if you are detained, how long you may be in hospital and even if you will get out are all widespread in ethnic minority communities. Addressing the issues facing this group of people is a central priority for the Review.
  • Patients detained under the criminal justice system suffer from even longer delays to access the care they need.“A new patient kept ringing the police. They told us that if she didn’t stop then they would take the phone away. It was the only way we could talk to our families.” 39 – Service User“In my Trust they have adopted the tactic of explicitly framing complaint- making by patients against staff and services as an indication that the patient is a risk to others, and formally recording this ‘risk’ in the risk assessments they use to make decisions regarding leave and discharge, etc.” Service user.

Patients also reported harassment and abuse on inpatient wards, both physical and sexual. A CQC review41 reported 1,120 sexual safety reports from Apr-June 2017, of which more than a third of the incidents (457) could be categorised as sexual assault or sexual harassment of patients or staff. Data collection is inconsistent on this, and could be improved as it is for restraint. From the date that is available we know that restraint continues to be a routine occurrence on many wards, affecting disproportionately those from ethnic minority populations, women and girls. Restraint, and particularly pain-based restraint and prone restraint, can be frightening and life threatening. Not surprisingly, sexual assaults and restraint can lead to lasting trauma for those affected.

Ward physical environments have become increasingly cold and unwelcoming with an emphasis on physical safety. A few people have even told us that the way they are treated by staff, the levels of threat and violence, the physical environment and the sound levels make hospitals seem little different to prison.

We are acutely aware that this will be an uncomfortable read. It will be difficult for some of those who provide care, or those reading this report, to comprehend and accept the poor experiences that many patients suffer. But it is essential that they find the courage to acknowledge what patients are saying has been their experience rather than what their care providers believe they provide, if care and treatment are to improve. Many of the issues we cover here have been highlighted repeatedly in CQC reports and by service users and their families. Other problems have slipped below the radar, in some cases because of low expectations of what constitutes good care, and in others because of poor quality assurance of the care provided on wards. The CQC inspection criteria should also be strengthened, for example to have a greater focus on therapeutic environments and person centred care that meets the needs of people with a range of equality characteristics. Day-to-day reporting of incidents is inconsistent and numerous and complex complaints processes prevent patients and relatives from obtaining redress. Those that do complain have told us that care can be negatively affected. All of this has allowed everyone, from local ward staff to national system leaders to overlook or even normalise poor practice.

We are also aware of the huge dedication and compassion of thousands of staff across the NHS, Local Authorities and other agencies, and how services and staff suffer when they are over-stretched, feel overwhelmed and unsupported. High bed occupancy, rapid turnover of patients, higher levels of detention, regulatory pressures, and increased administrative work and inefficient processes can all reduce time spent therapeutically with patients and reduce job satisfaction for staff. Lack of staff and high levels of temporary or ill-equipped staff contribute to wards with high levels of coercion and conflict42. Increasing vacancies (14.3% for MH nursing43, 9% for consultant posts44, 2017) and high turnover suggest the current culture and environment do not support either staff or patients and that this is becoming normalised. Improving ward culture would improve support for staff and help potential problems to be addressed before they escalate. In addition, pressures upon community NHS and social work services can lead to problems in appropriately discharging people.

Solutions to these problems must be multifaceted, addressing the needs of patients and considering how best to encourage and maintain wards that are therapeutic and respect patients’ rights. The Convention on the Rights of Persons with Disabilities (CRPD) 45requires that no decisions about disabled persons should take place without them, so those with relevant lived experience should be involved in decision making across the system, including co-design and production with patients at ward level. Patients should be treated in a way that respects them in the context of their own lives, recognises their strengths, needs, values and experiences and provides equality of outcome regardless of any disabilities or protected characteristics. It is not enough to merely ask that people detained under the Act are listened too, nor can we achieve our goals, of fair treatment for all, if detained patients continue to have so little say in their care and treatment. Many of the legal and regulatory changes recommended in this Review are essential to driving culture change, to ensuring shared decision making becomes routine practice, and that patients’ own expertise is acknowledged and valued.

“ Being sectioned was one of the most traumatic experiences of my life. Sadly, as a result of being sectioned I developed PTSD as the direct result of the way I was treated ” – Service user

“ I did not view the act of sectioning in my case as something that should be avoided, if you are physically exceptionally unwell you are placed in intensive care – the same arrangement applies to your mental health when in crisis ” Service user

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