Category: RITB

Covid-19 and Eating Distress

Eating Distress sits at the intersection of physical and mental health making us particularly vulnerable at this time. 

This blog piece is written by a member with their own experience of eating distress and uses quotes from Twitter followers (with permission).

Empty supermarket shelves. Text: Covid-19 and Eating Distress

Turns out that successfully managing a 30+ year eating disorder for years by shopping infrequently and buying multiples of the same few items doesn’t work in a pandemic with restrictions. The gradual erosion of parts of life that feel possible, in the absence of help, is a worry.

For those of us with current or former difficulties with eating this is a mental health nightmare. Some of us took years to painfully regain some health and we can’t replace ‘safe’ foods with just anything. 

I’m struggling to get my ‘safe’ foods. Dx anorexia many years ago and still feel in control if I eat certain things and certain times. Been going on for so many years. I feel uuurgh too when many have no food at all. Also with all other things in the world out of my control, my control is needed more… if that makes sense 

Covid lockdown has had enormous impact on our mental and physical health. Many of us are having to self-isolate and are having to rely on supermarket deliveries, friends and family and volunteers to deliver our food. 

We may be unable to access possibly the only source of viable food due to restrictions on the number of items supermarkets will allow customers to buy.

We may have to purchase expensive meal replacement drinks not prescribed. 

We may feel embarrassed by volunteers seeing how restricted our food intake is.

Does anyone else feel that if they asked someone to get some food for them that it must be ‘essential’ ie no junk food lol

The inability to obtain key items can unravel a finely balanced ability to eat. The constant fear of ‘where does the next X come from?’ or ‘when will a delivery slot become available?’ leads us to focus and obsess.

I finished CBTE for this a couple of months ago, and everything I worked so far for has completely unravelled (CBTE – Cognitive Behavioural Therapy for eating disorders)

Some of us have permanent health problems as a consequence of anorexia, bulimia or binge eating . These can include dental, bowel and/or bone conditions, which require permanent prescribed medicines and affect what we can and can’t eat. 

The Government registration covers limited physical conditions but not mental health conditions. Relevant charities could have made representations to the supermarkets – but it shouldn’t be based on BMI like services!

Food bank and government food parcels rarely contain fresh vegetables, fruit or dairy. Many of us struggle to eat a lot of rice, pasta, lentils or beans because of our health conditions. 

yes the food bank and Age UK parcels are very limited. The sad thing is many of us would be ok (enough £ permitting and yes it’s more expensive now), if we could access supermarket delivery slots. Some people I talk to in private need things like fortisip and are trying to get it online (fortsip – supplementary food)

Cooking is an issue for people who struggle with eating distress. Some of us can’t cook from scratch and many of us need ready meals which have the calories on the box.

Once you’re no longer seriously underweight and your eating has some semblance of ‘normality’, most people think that it’s all behind you. However, this is often not the case. 

Eating disorders in the context of a global pandemic are not easy. After a decade and a half of solid recovery from Anorexia nervosa, within days of the lockdown becoming inevitable I was under the duvet, barely eating and planning an exercise regimen to see me through being housebound. My appetite went AWOL due to anxiety and my weight started dropping.

Eating distress can often centre on issues of control  so finding ourselves in a situation where we are suddenly finding ourselves without the control over what food we can get hold of – and even allow into your home – can trigger more dangerous methods of control, methods we had once relinquished, such as the tyranny of the scales.

I felt really silly — I consider myself fully recovered from my ED. I never imagined I would be triggered like this. I started to speak out a little, expecting to be ridiculed. Many people do not know that I ever had an ED diagnosis. I suppose at some level I am ashamed of ever having had it at all. ED is a horrible illness that wrecked havoc in my life and seriously affected my family as well. I do not want a full-blown relapse. 

These issues are difficult to raise at a time when it is assumed that if you are in need of food help, ‘you will eat what you’re given’.

I think those feelings are heightened at a time of ‘we must be grateful for anything’ and there are sooo many people around us in dire circumstance

yes, and also related to feeling guilty about spending “badly” when income so reduced…sometimes feel my life is held together with bits of sticky tape (and this situation is pulling away some needed bits)

Mutual aid groups are doing brilliant work, but it’s not easy to say something like ‘I need 7-14 of these yogurts to live’ or whatever it is you need. So many issues – safe food no longer available, scarcity of food causing lots of ED. 

Thoughts and actions can get worse, getting used to having an empty stomach again because I can’t access the food I need which is a vicious cycle. 

And then there’s the impact of covid-19 on eating disorder services. 

For people who are at a clinically dangerous BMI some services have cut support or downgraded the BMI eligibility bar from 15 to 12. Some people can die at 15.

Have heard that eating disorder units are limiting admissions even more. You now have to be BMI 12 or under. People are dying because of this and it may not be listed as Coronavirus on the death certificate but it sure created the conditions to cause it.

Advice from members and followers who are dealing with eating distress at the moment.

  • Don’t beat yourself up for how triggered you are or how much you are struggling. This is the first global pandemic in our lifetimes. Give yourself time to freak out as you need to but keep this in check so that your ED cannot get a stronger hold on you. 
  • Speaking out about what you are struggling with helps. If you are ashamed to speak out publicly, discuss privately what problems you are facing and brainstorm solutions.
  • There is an enormous amount of exercise porn on the social medias, as if lockdown is an excuse for a fitness bootcamp. Acknowledge that this kind of messaging is not aimed at you right now and try to minimise exposure to it — unfollow unhelpful social media accounts, change the subject when talking to friends, figure out your own plan, check that out with friends, family or your treatment team and stick to that instead. Remember, Permitted Exercise takes place once per day! [Government guidelines at the time of writing.] 
  • Similarly there is a lot of productivity porn around. Cut yourself some slack. As someone said “The current era is crap enough without having to feel guilt that we aren’t learning Greek and painting watercolours of daffodils. If you brushed your teeth today and got showered and ate something and spent ten minutes not looking at the news then well done it’s an achievement.”
  • Keeping eating going is a priority, for all that your ED might tell you that it isn’t. Whether you’re finding it difficult to get hold of your safe foods, struggling to stick to a routine (like me), trying to work out how you can avoid binging when you cannot shop only for one day’s worth of food, or anything else, there will be solutions. ED loves rules. It’s time to make new ones, or adapt the old ones for these changing times. 
  •  Things will settle, they won’t be changing this fast for all time. Even if we are locked down for a while, the supply of foods will level out and new routines will be established. In the mean time it is about not getting worse for now. Reach out to your support networks both professional and informal and figure out what you can do today and this week. 
  • It is possible to buy nutritional shakes from Amazon (but it’s expensive) or ask your prescriber to prescribe them. They help me to reestablish a regular eating pattern without really thinking too hard; this might be an option for you, too.
  • Your ED makes you vulnerable to interruptions in the supply chain for foods. You need to work around this. Use family, friends and formal and informal support services as you find out how to keep your own nutrition going.
  • Accountability is an option. Make virtual lunch, snack or dinner dates and check in with each other. As the disability community, we owe it to each other to look out for each other. If you know your pal is struggling ask them how eating is going; respect each others’ boundaries though and back off if your pal would prefer not to talk about it for now.
  • Being underweight or undernourished will not be good for your immune system. Healthy immune systems are important. If you cannot eat for yourself, take care of your physical health for the sake of the rest of us. I’m not trying to guilt trip anyone but ED sits at the intersection of physical and mental health making us particularly vulnerable at this time. Hold onto your recovery, it is precious and a real asset in the fight against COVID-19. 

What has your experience been? Tell us on Twitter @RITB_ 

Useful links

An article by Radical Dietician, Lucy Aphromor Stress Eating is Life-Affirming and Can Help Us Cope in Troubled Times

A List of UK Community Aid Groups

 

3 Point Plan To Make DWP Support People During Covid-19 Outbreak

3 Point Plan to make DWP support people during Covid-19 Outbreak

1. Suspend all- assessments, reassessments, sanctions, conditionality jobcentre visits, training/work experience programs. Allow in claimants favour all Mandatory Reconsiderations and Tribunals. Default to granting awards until emergency over.

2. Introduce interim assessment phase payments equal to statutory sick pay for people making new claims of PIP, ESA, UC for reasons of illness or impairment. 

3. End any delay in payment, begin with advance payment on day one of all benefits. As UC does not give enough to live on, it must be increased and all rent (LHA) and personal allowances increased to real world living amounts.

DWP- Pay people so they can stay in their homes, Help don’t Hinder the fight against Covid-19!

Note: This is a brief 3 point set of demands, it is a work in progress but the message is clear, the DWP as it is currently organised will hinder and harm people during the Covid-19 Outbreak unless it radically changes its policies and disposition.

“I could justify your death to the coroner”: The Misuse of Positive Risk Taking in Mental Health

I had attempted suicide, and been brought in against my will by police officers.  They were kind and empathetic, and told me they couldn’t and wouldn’t let me die.  They assured me they were taking me to get help.  Imagine my shock when the psychiatrist sat in front of me showed no such empathy or concern for my life. 

If you’ve ever been sectioned you’ll know it’s a pretty humiliating and distressing experience for one already so distressed. I had a Mental Health Act Assessment and was probably the most suicidal and hopeless I had ever been.  I expressed that I intended to end my life and that I was not willing to engage with the crisis team in the morning because I would be dead by then. 

From the assessment the psychiatrist came to the conclusion that I had Borderline Personality Disorder, and thus was probably not truly suicidal.  He accused me of trying to manipulate my way onto a further section of the Mental Health Act, and I later found out had told the nurse at the 136 suite that I was ‘not treatable’. He courteously offered a referral to the home treatment team who would phone me in the morning, which as I mentioned above, felt was pointless as I intended to die. 

I was told repeatedly that if I wanted to kill myself it was my decision to make. He stated very matter-of-factly that his only priority was to ensure that his back was covered legally, and that if I were to kill myself, he felt he could justify his decision to allow me to do so in a coroner’s inquest. I was told that ‘some psychiatrists would play it safe and section you to keep you alive’, but he felt that wasn’t best for me because he wanted me to ‘take some responsibility’. Because of the Personality Disorder label?  Discharging me expecting me to either die or ‘learn my lesson’ and never dare to be suicidal again, as if my actions were bad behaviour symptomatic of a fault in my personality rather than severe and genuine distress, as if it’s a risk worth taking, as if the latter is a realistic outcome. If we are living in a world where doctors whose explicit responsibility it is to care for us are happy to let us die, something has gone drastically wrong.  

Within 30 minutes I was sectioned by the police again after making another attempt on my life, exactly as I had told the psychiatrist I was going to. I was lucky the police got to me in time, had they not, my parents would have lost a child, my sister a brother, and I’d have become another suicide statistic and it would have been completely preventable.

This isn’t an anomaly when it comes to ‘care’ for those of us with enduring mental health problems; it’s not even an anomaly in my own life, I could give you a multitude of other examples. So many others have similar stories of being told their suicide would be justifiable, that they can kill themselves if they want to, being discharged with immediate suicidal intent, in the name of taking some responsibility. As if telling someone their death would be justifiable is providing them some kind of great empowerment rather than disgusting, abusive treatment of those for whom you’re supposed to care. Those of us here to tell these stories are the lucky ones, the deaths of so many mentally ill people go this way and are so easily presentable if those responsible for our care had a little more regard for our lives.

I understand that resources are scarce, and austerity has a huge role to play in the shifting of mental health trusts towards these kinds of approaches, but that will never make it okay. Discharging someone with expressed suicidal intent is the equivalent of discharging someone in the middle of a heart attack, there is nothing positive about positive risk taking, you’re gambling with people’s lives.

Neorecovery, Neoliberalism and Enforced ‘Positive’ Risk Taking

This is the first in a series of blogs we are publishing about ‘positive risk taking’ in mental health. The Department of Health published its guidance, Best Practice in Managing Risk, in 2007 as part of the National Mental Health Risk Management Programme. It describes positive risk management as a collaborative process with the service user and their carers, which emphasises the importance of building on the service user’s strengths, while recognising the responsibility of individual clinicians and organisations as a whole. Positive risk taking is meant to be about collaboratively weighing up potential benefits and harms, with the aim of taking a risk for a positive outcome. As you will read in the blog below, this couldn’t be further from how it is being used in practice.

At a time of continued austerity, and neoliberal and neorecovery agendas, I see a worrying trend. NHS mental health services are covertly enforcing positive risk taking as a way to justify neglect, lack of care and exclusion. As long as services can defend their actions it seems they can avoid blame. I can’t help thinking that it’s something else; decisions are made due to diagnostic discrimination, financial reasons and lack of resources – not of clinical need. But there is no honesty or transparency when it comes to discussing risk with me.

“Positive risk taking needs a person-centred approach, where staff take a positive, recovery- oriented view of the service user and investigate what is important to keep them and others safe as they move towards better health and more independence. Positive risk taking is based on finding creative solutions rather than simply ruling out options for recovery based on fears and worries of what might go wrong”

from ‘Therapeutic Positive Risk Taking’ by Greater Manchester West Mental Health NHS Foundation Trust

I was forced to wear the Bullshit label of Borderline Personality Disorder and remain unrecovered for many reasons, despite being under the so called care of secondary mental health services for almost three decades. I have already written about this here. 

Having the BPD label is not conducive to a therapeutic and trauma informed relationship with professionals. Clinical judgement is biased and I have mainly been treated like shit on a shoe. Written throughout my clinical notes and said verbally so many times is; attention seeking, manipulative, complex, demanding and difficult. This has never changed. I’m sure I’m seen as someone who is taking up valuable resources. My severe distress seems to provoke negative reactions and less empathy from most professionals although it is not fake!

I have often found the mental health system to be coercive and controlling. In the past there have been times when I don’t think I needed to be detained under the Mental Health Act. Yet other times, I have no doubt that being locked up saved my life. I have recently tried to take back some control regarding risk, and whilst there aren’t as many threats of Mental Health Act Assessments and police involvement, there seems to be no action taken when I take responsibility and ask for help in an emergency situation.

Whilst I know that risk assessments are not that helpful in predicting suicide, I see the push towards positive risk taking from mental health services also comes alongside aims of zero suicide and suicide prevention, ‘ask for help if suicidal’ narratives, and Time to Talk. There seems to be an increased focus on those with milder mental health difficulties, yet those with long term need and severe and enduring difficulties are not having their needs met. I’m acutely aware that many people don’t have a Crisis Plan or a Care Coordinator despite being under the care of secondary mental health services. Some can’t access secondary mental health services at all, despite their need.

Over the years I have seen support for people like myself decimated. Crisis services are failing. I used to have some hope that services could keep me safe if I asked for help. I remember in years gone by there was more care in the community and effective and collaborative crisis planning. I could access the day hospital and extra appointments with my CPN or visits from the Home Crisis Resolution Team. I was offered short voluntary respite breaks in hospital as detailed in my Care Plan. Stays (even detained ones) in hospital were more therapeutic than they are now; nurses had more time to chat, there was not as much rush to be discharged and there was better follow up upon release.

Then came austerity, neoliberalism, minimisation of the State, the selling off of the NHS, social inequality and insecurity, and the move to a neorecovery based approach. This accelerated the emergence of individual responsibility and self-management, dependency and loss of productivity, all whilst ignoring the social detriments of health. Mental health services are now in crisis themselves and often struggle to provide even basic care. There is a lack of inpatient beds and more out of area beds. Emergency departments are under increased pressure. Community mental health teams are underfunded, under staffed and under pressure to discharge people who fail to recover. Staff seem to have become demotivated and detached and many of the better ones have left the NHS. Dual diagnosis services have been scrapped. There are long waits for therapy, which are often short term. Day centres closed and turned into recovery colleges, social care and welfare benefits cuts, peer workers are now often called recovery workers and bear no resemblance to grassroots peers. Police are taking up the slack for those in a crisis and some patients are even being prosecuted for trying to take their lives.

It’s difficult to get taken seriously when I’m desperate for help. Fears about my safety from my family aren’t taken into account and they no longer accept the responsibility forced on them by services to keep me safe when psychotic. There seems little point in having a crisis plan (now called a crisis recovery plan). Although I have had some input into my plan, it is very much led by professionals, with much less support on offer in a crisis situation than years ago. In any case the plan is no longer followed in acute crisis situations, despite it stating in capital letters at the top that if I do contact someone it will be an emergency. Professionals tell me that I have capacity to suicide but rarely provide any support. I feel like they just hope I don’t, and that if I do then I was actually telling the truth!

When I am detained under the Mental Health Act it’s often because of police involvement. Psychiatric wards are now hostile environments which I try to avoid at all costs. A recent CQC inspection of my Trust saw the safety of services had deteriorated and required improvement, and that acute inpatients wards were inadequate. Suddenly, it appears that only very short admissions to keep me safe are advised for people with my label and NICE guidelines for self harm are not being followed. Yet, the link between self harm and suicide is well known, with estimates of one out of 10 people with the BPD label taking their lives. Even coroners are issuing Prevention of Future Deaths notices after being alarmed at the lack of care that emerges during inquests.

For many years according to my clinical notes I was “at high risk of suicide.” This has now changed to “at high risk of accidental death.” In the last few years I have been left in high risk situations, because of the misuse of enforced positive risk taking. After a “near miss” serious incident a few years ago, whilst psychotic, three separate NHS mental health crisis services failed in their duty of care. Despite an internal investigation, which resulted in “lessons learned”, similar incidents have happened since (I will spare you the details). CPN stated that if I had died “the Trust wouldn’t have had a leg to stand on at a Coroner’s Court.” I am lucky to be alive! Others have sadly not been as lucky when asking for help and some simply gave up asking.

Neoliberal discourses attempt to position me as a responsible and active participant in my own care but also as blameworthy. I already feel like a failure, undeserving, worthless and ashamed. Am I not trying hard enough to be resilient, to be responsible and to recover? Am I too dependent? Have I not empowered myself enough? As a person with a severe and enduring mental health disability I realise I need to take some responsibility for reasonable risks in my daily life, but there are times that I simply can’t be responsible for my own safety. In these situations there is no joint decision making between myself and professionals. Being told it’s my choice to suicide when desperately asking for help in a life threatening situation as per my crisis plan is totally inappropriate and not one bit therapeutic. It seems to be shorthand for “We don’t give a fuck.”

Surely, services should not withhold support and care when I’m at serious risk of harm under the guise of it being in my best interests, to teach my badly behaved personality a lesson, as a way of tapering care to somehow facilitate resilience, or in a way to avoid blame. You’re actually gambling with my life. It’s scary! Positive risk taking – positive for who? It’s no good promoting recovery if I’m dead!

Written by G

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

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

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

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

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

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

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

How the hell have we got here?

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

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

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

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

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

By Hattie Porter

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

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

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

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

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

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

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

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

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

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

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

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

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

This is not an illness. It is an injury.

–

References

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

Gold, N., & Kyratsous, M. (2017). Self and identity in borderline personality disorder: Agency and mental time travel. Journal of evaluation in clinical practice, 23(5), 1020–1028.

Reich, D. B., & Zanarini, M. C. (2008). Sexual orientation and relationship choice in borderline personality disorder over ten years of prospective follow-up. Journal of personality disorders, 22(6), 564-572.

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

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

The Heartsink Professional: full blog coming soon!

Text reads:

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

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

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

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

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

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

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

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

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

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

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

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

The CALMED Trial: A call for ACTION!

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

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

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

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

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

Trial Sponsors: Imperial College London

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

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

We heard nothing.

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

“Dear CALMED Trail Sponsors,

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

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

We look forwards to hearing from you,

Rita.”

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

“Dear Rita,

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

Many thanks

[REDACTED]”

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

“Dear [REDACTED],

Thank you for your email.

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

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

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

Rita”

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

Health Research Authority (HRA)

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

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

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

“Dear Rita,

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

Yours sincerely

[REDACTED]”

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

“Hi [REDACTED]

Thank you for getting in touch.

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

Could you let us know the reasons for the delay?

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

Rita”

On the 28th of November we received this response:

“Dear Rita,

Thank you for your email of 27 November.

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

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

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

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

Kind regards,

[REDACTED]”

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

“Hi [REDACTED]

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

Rita.”

On the 12th of December we received this response:

“Dear Rita,

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

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

A call for action

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

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

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

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

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

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

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

Everyone can:

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

We cannot do this alone.   

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

SOLIDARITY

UPDATES: 17.12.19 & 23.12.19

  • Trial Sponsors: Imperial College Updates

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

  • Medicines and Healthcare products Regulatory Agency (MHRA) Updates

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

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

Dear  Rita               

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

  • National Institute for Health Research (NIHR) Updates

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

On the 19.12.19 we recieved the following response:

Dear Rita

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

  • HRA Updates

UPDATE 17.12.2019:

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

Hi Rita,

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

Kind regards,

REDACTED

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

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

We responded again at 4:07pm:

Hi REDACTED


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


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


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


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


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


Rita

UPDATE 23.12.2019:

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

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

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

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

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

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

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

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