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

 

What Is ‘Really’ Required To Incorporate The User Narrative In The Changing Health Systems?

by Nagina Khan

The concept of recovery emerged from the service user movements in the 1970s, most notably in Anglo-Saxon countries, challenging traditional medical approaches to treating people with mental illness and how services for these individuals are organised and delivered (1).

Over the last decade, the recovery movement has attracted widespread interest and as a result, has become part of broader change and improvement processes across mental health systems in many industrialized countries (1). However, recent debates suggest that such narratives are often used by mental health and educational systems to promote their own agendas (2). In this context, user narratives are no longer considered a transformative act of co-production or resistance and they are a commodity servicing primarily the interests of these systems (2).

Co-production has become a way of talking about service-user participation in mental health services (3). Co-production relies on a seemingly ‘simple definition—people who use services collaborate in the production of services’ (4) and is generally presented as a ‘valuable element of quality and service improvement’ (5). However, the concept of co-production is also known for its ‘excessive elasticity, evident in the various ways in which it has been defined and interpreted’ (4). Not surprisingly, co-production has been described as a paradoxical space (6), with a potential to both reinforce and transform existing practices and systems (7).

Needham and Carr (2009) provided a helpful distinction between three levels of co-production, however Sapouna (2020) argues that the contribution of user-narratives can only be meaningful in the context of pursuing the third level of transformative co-production as described by Needham and Carr (2);  

At its most effective, co-production can be transformative, requiring a relocation of power and control, through the development of new user-led mechanisms of planning, delivery, management and governance. It is important to be aware of these levels when claims are made about co-production in professional education(4).

In that sense, transformative user narratives have the power to become a ‘gap-mending strategy’ between expert and experiential knowledge as well as to disrupt dominant narratives of professional knowledge and expertise (7). This requires professionals to shift from a tradition of paternalistic attitudes of helping or being the expert, to working in meaningful alliances and working to re change; 

● The new individual pathology approach, and focusing on individual responsibility to recover whilst excluding a consideration of contextual factors 

● Privileging certain types of knowledge through narratives that are considered ‘inspirational’ and/or ‘insightful’ (celebrity status), at the expense of other (e.g. incoherent and overwhelming) expressions of distress 

● Overlooking the diversity of narratives constituting people’s experience 

● A co-production process encouraging compliance with, rather than transformation of, mental health systems (2).

What can the user narrative offer? 

The value of user-narratives is well documented, highlighting the contribution of service-user involvement (SUI) to both the micro-level of practice skills and the macro-level of transforming current practice and culture (2). The user narratives of psychiatric survival have been central in organising resistance toward dominant constructions of ‘mental illness’ and user narratives have also created spaces for co-production with a transformative potential, as traditionally silenced voices can be heard and affirmed (2).

Equally, personal authentications and accounts can enable health and social care professionals to cultivate an understanding into the experiences of distress, of being at the receiving end of services (8) of feeling trapped, not listened to (9), promoting a dialogue (10) and therefore affect professionals’ ability to be more empathetic. User narratives, and SUI have been found to facilitate communication, partnership and advocacy skills (11) to reduce stigmatising attitudes (12) to enable practitioners to be more conscious of and reflective on the implications of their practice (13).

The changing climate of health systems and mental health services 

Ideally, at the core of this undertaking is the shift from services based on the clinical meaning of recovery (i.e., treatment and symptom reduction as manifested by clinical assessment tools such as the PHQ-9) to recovery as defined by the service user’s view of what is needed or desirable in the care s/he is encountering to help him/her resume a meaningful life and valued roles (1).

This shift is seen in the elements of the Five Year Forward View (14) most relevant to the delivery of primary care are: 

· Holistic care – promoting care that considers multiple morbidity and the social context of the patient 

· Integrated care – promoting seamless care between different types of care i.e. primary, secondary, mental health and social 

· Patient-centred care – promoting patient self-care and informed choice 

· Primary prevention – promoting prevention of disease in healthy people.

In 2016 the Shared View of Quality was published (15) and set out the broad areas of quality that would again support high-quality person centred care for all, now and into the future (15).

Yet, person-centredness is often directed as the counter-narrative to medicalisation, it argues for a critical and reflexive standpoint that considers what happens though the inclusion and use of person-centred narratives and in particular what may be lost in this pursuit of ‘voice’(16). The current policy emphasis on ‘voice’ apprehends the discourse of activism colluding ‘in this shift toward individualism, albeit under the guise of participation, collaboration and co-production’(2). This is not an argument against inclusion, it is rather a call to problematise how ‘inclusion unfolds for survivors when suddenly invited to work for systems that have long been sites of systemic discrimination’ (7).  

In the UK, the NHS Long Term Plan is also mandating ‘integrated care systems’ (ICSs) to develop and deliver locally relevant 5-year plans (17). Integrated care is proposed as a more efficient client-oriented health model, building services around local populations (18). However there is concern that mental health has not been sufficiently considered in ICSs and integrating organisations need frameworks and tools to describe their integration model – and how it will be evaluated (18). It is further suggested that engaging not only staff but also patients is essential to the process and a necessary starting point for developing methodologies to evaluate organisational changes and outcomes (18).

Hence, patient centredness needs to be explored not only in the context of recovery but service development needs to be aware that they might inadvertently end up perpetuating patterns of knowledge exclusion by privileging certain narratives over others. The relationship between the narrator and the audience is important here and if the audience decides on the value of narratives, this value is no longer embedded in the power of the story, rather, it lies in the perception of the audience (2). As a result, the ‘Recovery Narrative can, like other narratives, also silence and exclude, by privileging and valuing certain kinds of reasoning and knowledge’ (19). With narratives becoming increasingly mainstreamed in mental health systems and social networking sites, offering celebrity status on social media, it is important that services recognizes the critical voices as essential components of transforming and humanising mental health services (2).

Reconciliation of the broader political implications and validating user-generated knowledge

Tracy et al., (2019) report that details on integrated care systems are intentionally non-prescriptive, however they encourage localism and adapting resources to community needs and such there have been few examples incorporating mental health (18). The Royal College of Psychiatrists and the King’s Fund noting such opportunities have not yet been maximised (20); so it may be the precise time for valuing user-generated knowledge and influencing the direction of service change, which may reinforce health and social care service to rethink traditional assumptions about credibility and legitimacy of knowledge formation (21)and incorporating unsettling questions, for example dealing with people whose value systems are challenging our own and people with whom we struggle to empathize or engage with (2). So as to develop services where co-production is primarily framed in a helpful manner supported by a model of service delivery and management, rather than an approach challenging power structures and transforming services then by exploring ways of being with complexity, ambiguity and confusion; by recognising silenced, chaotic stories, and by challenging systemic injustice (2). Now might be the time for services to re-align with person orientation and person involvement (22), which are some of the guiding principles of recovery oriented practice (1). Instead of voyeuristic approach to narratives and their potential reduction to a tick box in the management of mental health and educational institutions (2). So that the narrator is actively claiming power (23) in the contexts where their story is shared. Woods et al. (2019) argue, the political effects of narratives are ‘only as benign as the context in which they are materialised, will allow’ (24). For that reason, an awareness of power relations in the context where narratives are shared, heard and valued is pivotal to change (2). This could prove to be a  significant challenge to the mental health services and the current marketised culture (25).

Nagina Khan, Ph.D, PGCert, BHSc Twitter: DrKhan_do

References 

1.        Pincus HA, Spaeth-Rublee B, Sara G, Goldner EM, Prince PN, Ramanuj P, et al. A review of mental health recovery programs in selected industrialized countries. Int J Ment Heal Syst. 2016;10:73–83. 

2.        Sapouna L. Service-user narratives in social work education; Co-production or co-option? Soc Work Educ. 2020; 

3.        Gillard S, Simons L, Turner K, Lucock M, Edwards C. Patient and public involvement in the coproduction of knowledge: Reflection on the analysis of qualitative data in a mental health study. Qual Health Res. 2012;22(8):1126–37. 

4.        Needham C, Mary Q, Carr S. Emerging evidence base for adult social care transformation [Internet]. Social Care Institute of Excellence. London: Research Briefing 31, Social Cers Institute for Excellence; 2009. Available from: http://www.scie.org.uk/publications/briefings/files/briefing31.pdf

5.        National Service Executive. Co-Production in Practice Guidance Document. 2018. 

6.        Poursanidou D. Critical reflections on paradoxes and unsettling relations in the politics of “co-production” in university-based mental health research. In: Ryan SC& P, editor. Insider, outsider, impostor? Perspectives of mental health service user and survivor researchers and teachers on co-production in academia. London: Middlesex University; 2016. 

7.        Voronka J. Researching the Politics of Inclusion. Vis Passion Action [Internet]. 2016;2018(21/05/2018). Available from: https://radssite.wordpress.com/tag/inclusion/

8.        Fox J. Being a service user and a social work academic: balancing expert identities. Soc Work Educ. 2016;35(8):960–9. 

9.        Hughes M. What difference does it make? Findings of an impact study of service user and carer involvement on social work students’ subsequent practice. Soc Work Educ. 2017;36(2):203–16. 

10.      Sen R, McClelland N, Jowett B. Belonging to the library: humanising the space for social work education. Soc Work Educ. 2016;35(8):892–904. 

11.      Duffy J. Looking out from the middle: User involvement in health and social care in Northern Ireland. London: Social Care Institute for Excellence; 2008. 

12.      Cabiati E, Raineri ML. Learning from service users’ involvement: a research about changing stigmatizing attitudes in social work students. Soc Work Educ. 2016;35(8):982–96. 

13.      Higgins A, Maguire G, Watts M, Creaner M, Mccann E, Rani S, et al. Service user involvement in mental health practitioner education in Ireland. J Psychiatr Ment Health Nurs. 2011;18(6):519–25. 

14.      NHS. Five Year Forward View. Https://Www.England.Nhs.Uk/. NHS England; 2014. 

15.      Field S, Keogh B, Leng G, May R, Mclean K, Reid W. The National Quality Board. 

16.      Pascal J, Sagan O. Cocreation or collusion: The dark side of consumer narrative in qualitative health research. Illn Cris Loss. 2018;26(4):251–69. 

17.      NHS. The NHS Long Term Plan  https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan/ [Internet]. 2009 [cited 2019 Feb 12]. Available from: http://www.longtermplan.nhs.uk

18.      Tracy DK, Hanson K, Brown T, James AJB, Paulsen H, Mulliez Z, et al. Integrated care in mental health: Next steps after the NHS Long Term Plan. Vol. 214, British Journal of Psychiatry. Cambridge University Press; 2019. p. 315–7. 

19.      Fitzpatrick SJ. Ethical and political implications of the turn to stories in suicide prevention. Philos Psychiatry Psychol. 2016;23(3–4):265–76. 

20.      Naylor C, Taggart H, Charles A. Mental health and new models of care. The King’s Fund and the Royal College of Psychiatrists; 2017. 

21.      Videmšek P. Expert by experience research as grounding for social work education. Soc Work Educ. 2017;36(2):172–87. 

22.      Valderas JM, Gangannagaripalli J, Nolte E, Boyd CM, Roland M, Sarria-Santamera A, et al. Quality of care assessment for people with multimorbidity. J Intern Med [Internet]. 2019 Feb 5 [cited 2020 Mar 25];285(3):289–300. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/joim.12881

23.      Brosnan L. Service-User Involvement in Irish Mental Health Services: A Sociological Analysis of Inherent Tensions for Service-Users, Service-Providers and Social Movement Actors. Vol. PhD, Department of Sociology. University of Limerick; 2013. 

24.      Woods A, Hart A, Spandler H. The Recovery Narrative: Politics and Possibilities of a Genre. Cult Med Psychiatry. 2019;(1–27). 

25.      Rooney JM, Unwin PF, Osborne N. Gaining by giving? Peer research into service user and carer perceptions of inclusivity in Higher Education. Soc Work Educ. 2016;35(8):945–59. 

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 practice23(5), 1020–1028.

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

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

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

The Heartsink Professional: full blog coming soon!

Text reads:

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

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

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

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

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

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

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

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

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

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

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

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