Service User Experience From Mental Health Act Review

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

SERVICE USER EXPERIENCE Pages 53-58 MHA Review

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

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

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

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

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

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

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

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

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

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

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

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

RITB Position Statement On Borderline Personality Disorder

HysteriaBPD

RITB are neutral on diagnosis – we support people to self define in the way they choose that best enables them to live. However we consider Borderline Personality Disorder a special case and object to anyone’s personality being diagnosed as disordered.

We respect that some people find the diagnosis useful and would not want to see people not getting good support, but our position is that we do oppose BPD diagnosis.

We view the BPD diagnosis as a special case because of its specific and politicised use as;
•a diagnosis of reprisal in response to a complaint or a failure to ‘recover’ or to respond to medication,
•a misogynistic diagnosis given to women, transgender and non binary people mostly due to its links with childhood trauma, childhood sexual abuse or to the sole action of self-harm.
•a diagnostic reclassification to expedite discharge for financial and ideological reasons.

We view it as the worst diagnosis in terms of professional stigma and hateful attitudes and believe it is different to all other diagnoses in its utility so we prefer it was never used unless a service user requested it.

We object to psychological formulation enacting a BPD diagnosis version in its description but without using the diagnostic words, as this is no different. We also oppose diagnosis creep of Personality Disorder encompassing more and more service users.

We also acknowledge that a diagnosis & deficit based description is still required for in-work and out of work benefits PIP, ESA, & Universal Credit regardless of whatever models are in vogue or preferred.

I Have Never Been In A Place More Indifferent To Suffering Than A Psychiatric Ward

I have never been in a place more indifferent to suffering than a psychiatric ward. People walking around in great distress must be so much part of the furniture that mental health nurses can walk past them with barely a glance.

A few nights into my stay a nurse found me crying in my room. “It’s good to cry” she said matter-of-factly, “But sometimes it can go on too long”. She got up and left, promising to return later when I’d calmed down. I wondered what point there would be for her to return when I was no longer in distress, but ultimately it didn’t matter, because she never came back. I had a similar experience a few days later. While I was crying in my room, two health care assistants entered and began to carry out a room search. They didn’t ask if I was OK or acknowledge in any way that I was sobbing. After they finished they smiled and said “Thanks!” brightly, before leaving the room as quickly as possible.

In both these encounters I believe my historical diagnosis of borderline personality disorder (BPD) was at play. My crying was attention seeking, manipulative and proof that I was unable to regulate my emotions. Had they spent time to get to know me, they would understand that I rarely cry, let alone sob in front of people. As someone who OVER regulates their emotions it was upsetting to have my vulnerability responded to in such a callous way.

These experiences reminded me how dangerous the ‘All Nurses Are Heroes’ narrative is. There were some amazing, stand-out individuals working there, whose kindness were the true bright spots of my admission. But there was a culture of indifference which allowed behaviour that was everything from incompetent to genuinely cruel. I saw staff roll their eyes or laugh behind the backs of perceived ‘difficult’ patients. The psychiatrist referred to me in the third person during ward round in a way that should only be reserved for “Does she take sugar?” disability satire. Safety did not seem to be a priority, despite the fact there have been multiple deaths at this hospital. When a patient collapsed in the corridor after taking her nighttime medication, it was other patients who helped carry her to bed. The nurse who’d dispensed it simply shouted after her, “It just means they’re working”.

Two days into the admission I got given somebody else’s medication. I had been given my own meds about an hour before so questioned the nurse whether I really needed them, but she insisted. It turns out they were a different type of benzodiazepine to the one I had just taken and were intended for a woman with a similar name. The last thing I remember clearly from that night is them frantically trying to get a doctor onto the ward when the door to the ward wouldn’t open, but after that is black-out.

The same thing almost happened again two weeks later, but this time I was well enough to refuse and ask them to double check (once again, it was for the woman with the similar name). I was also given the wrong version of my medication on three occasions – an instant release type that left me more sedated and with more side effects. As someone who struggles to take medication, these mistakes left me mistrustful and scared to continue accepting the meds.

It didn’t help that the basic environment was not taken care of. The bathroom was filthy and not cleaned for two weeks, with a blocked drain that meant it flooded every time I took a shower. When I reported these things, the message never seemed to get to the right people. They were unable to find curtains for my room for the first week, and the floodlight outside the window meant I was unable to sleep properly.

To add insult to injury, the hospital I was in has a strong social media presence, where they use buzz words like “quality improvement”, “compassionate care” and talk about being HASHTAG “humbled”. It’s a self-serving denial of reality that’s almost cult-like in nature. It allows them to construct an image of life on the ward that is pure fantasy, all the while keeping genuine conversations about patient’s experiences at bay.

Perhaps most distressing, I was treated as a detained patient throughout the admission, despite being there ‘voluntarily’. This included being prevented from leaving multiple times. On one occasion, I tried to push past a member of staff entering the ward, and a nurse shouted at me, “Hey! You’ll be getting a Mental Health Act Assessment if you’re not careful!”. Her tone was that of a parent threatening a naughty child, not a nurse informing a patient of their rights. Weaponising mental health legislation in this way leaves patients with the experience of being detained without any of the legal safeguards. I was not allowed any ‘leave’ until near the end of my admission and even then, it was hit and miss as to whether the decision to let me out had been handed over. If it hadn’t, I would be left waiting until a member of staff who HAD been informed was on shift, sometimes days.

Despite being ‘de facto detained’ I was told by multiple members of staff that they didn’t think being there would help me. Once again, I’m sure this was related to my historical BPD diagnosis. To tell a patient simultaneously that they aren’t allowed to leave, but that they won’t be helped by staying, is both confusing and cruel. I had lost all hope for myself and saw this hopelessness reflected back at me by the people who were meant to be in a position to help. All of this is contrary to the National Institute for Health and Care Excellence (NICE) guidelines for hospital admission which recommends an “atmosphere of hope and optimism” for service users, with “a clear focus on their emotional and psychological needs”. I was never assigned a primary nurse during my stay and never saw a copy of my care plan, if indeed one existed.

Ultimately, this means I’ve left hospital without a clear plan of care, and with only the side-effects of a traumatic admission. It’s an impossible situation to be in while trying to keep yourself alive through a mental health crisis. The ‘choice’ between being totally unsupported or poorly supported is a catch 22 I’m still scared I might not survive.

Words can always break me.

By Maggie Zolobajluk @22magoo, anti-austerity activist. This article first appeared on her blog Telling it as it is

Until two years ago I was a very high functioning Heroin addict and had been self-medicating with heroin since the age of twenty-seven. I had been battling anxiety, depression, anorexia, and addiction from the age of seventeen, all related to physical, psychological and sexual abuse in childhood.

Those of us that function at this level are invisible because from the outside we look like you. Look around you; we could anyone that you see, a friend that you have known for years or a work colleague that you admire and work alongside or the person you chat to at the school gates.

Addiction was not a life style choice; it was a psychological and physical need, like taking a deep breath and exhaling a very long slow deep long sigh of relief, where there is time and space while the drug lasted. The need for these spaces sometimes have lasted for years, other times days, weeks or months and outwardly no-one knew anything was wrong.

After three years of counseling and fast approaching my sixty-seventh birthday, I have been clear of Heroin use for two years.

When I have told people about my past, so far I have come across three different reactions:

One is “Oh wow, that’s amazing. I would never have known, Look at you. Look at what you’ve achieved with your life.

Others unconsciously glance down at my arms to see if I have tract marks, which I don’t. My arms look exactly the same as yours as I have never injected heroin.

And others unconsciously clutch their bags closer to them for a split second, just in case I’m going to snatch it away from them and run off with it.

Words can define how people look and treat us. They create pictures, which are able to shape our beliefs, prejudices and actions.

What picture do you see in your mind’s eye when you hear the words “Dirty Junkie.”

I can guarantee you it won’t be an image of a high functioning addict like me, as I am invisible to you but a stereotype that dehumanises and devalues us, that is very pale looking, often having dark circles around their eyes; they are skinny and always a little bit sweaty. Their clothes look worn-out and unkempt, as if they have not been changed in days.

By judging and reacting to us like this on top of the mountain of pain, fear, isolation and shame we feel already, maybe for things we have done to survive, you give us more shame.  Shame founded on a Puritan belief, where belonging and connectivity comes from hard work and perseverance,

You see us as not deserving, a drain on society, not worthy to be part of your community which reduces your responsibility towards us, as you feel we bought this on ourselves. Your judgement excludes us, when what we need most of all is to feel that we belong and feel connected

This attitude is again reinforced by the media in films like “A street cat called Bob” and “Trainspotting” and perpetrated further by the newspaper in negative reporting.

The media makes a fortune out of it. Its big news, it sells papers, so woe betides a celebrity who falls to pieces due to addiction, as in the recent case of Amy Winehouse.  Images of a public meltdown sell papers. This public scrutiny brings additional pressure at a time where the world was crashing in on her, where she had no space.  Yet we followed and waited for her every move.

The deserving and undeserving is again perpetuated by Government policies of trying to force us into “treatment programs” that we are not ready for, with the threat of sanctions if we don’t or can’t comply.

“DRUG addicts and alcoholics who refuse to have treatment could be stripped of their sickness benefits in a new “tough love” approach to be unveiled by the Government” proclaimed The Express in 2012 It went on to say “From next year in pilot areas, drug addicts will be required to attend discussions about treatment and agree a rehabilitation plan to address their drug problem and other barriers to work that they face, or they risk losing their benefits”

Coercing people into therapy is dangerous as our consent is negated if it is given under duress. Punitive measures have no place in therapy. A safe environment is needed.  Trust needs to be established.  Asking questions about traumatic experiences can be extremely stressful or damaging for us as already traumatized individuals. Subsequent “re-traumatisation” could occur.

Then, when we enter counseling, where words and physical movements, just like music or smells can take us back to a particular event in our past flooding us with the memories and emotions of the trauma we have experienced and suppressed, we are faced with the expression,  “Do you feel dirty?”    A phrase so commonly and thoughtlessly used to describe people that take Heroin. This also perpetuates the stereotype image that’s been around for a long, long time.

These words are also said without thinking by many from the Psychology profession who use them without question. When you stop to think about them they imply that a person who has self medicated with an addictive drug, especially heroin, is dirty.  If you want to use a “d” word think about despair, desperation and dehumanisation.

Yet, after recovery, when we have finished counseling, ready to face the world on our own, we stigmatise ourselves by use the word “clean” to describe our remission. Every time we use the word “clean” to describe our state of health, we reinforce the stigma that once we were “dirty”

Once we stop associating with the word “dirty” we can see ourselves as in the “clear” We have recovered from the trauma of our childhood and are in remission.  We have forged new pathways in our brains that we now follow but just like any remission the old pathways are still there, so relapse is possible.

So finally, I would like you to picture a blank piece of paper. Take a pencil and write the word clean. Then take a rubber and rub away the downward stroke of the letter “n”, the downward stroke that is the stigma that society places upon us.

Many, many thanks to Dr Jay Watts @Shrink_at_Large, jaywatts.co.uk for her support, kind words and comments.

 

Worry Tree in the Bin

The Worry Tree is a complex Psychological Intervention which has led to a paradigm shift® in mental health care.

It works like this:

  1. Write down your worry.
  2. Work out if there is something you can do about your worry.
  3. If there is, then do it and LET WORRY GO, change your focus of attention.
  4. If there isn’t then… just LET WORRY GO, change your  focus of attention.

You can download a free Worry Tree over here.

(This is ACTUALLY USED in IAPT services.)

Case Example 1: Chronic pain and illness

The mindful worry tree cure for all chronic pain and illness, disability and anything non-surgical known to humankind. Basically – DON’T WORRY.

About to die or be killed – LET WORRY GO.

Case Example 2: Imminent austerity death

I am worried I will freeze to death on the street because I have nowhere to live after I was evicted due to Universal Credit… let it go you silly worry head, the nice lady from the government was on TV and said it’s all going really well, Merry Christmas!

Case Example 3: Worrying about worry

I am now worried about whether I worry too much.

Should I let this worry go and refocus my attention?

I am now going to stop worrying about worrying too much, I am going to let that worry go, and refocus my attention on the things I am legitimately worried about.

Case Example 4: Domestic violence

Nearly killed by your husband? All the refuges closing? LET WORRY GO, change your  focus of attention.

Case Example 5: The Worry Tree Worry

I am worried about this Worry Tree™. Is it a hypothetical situation or a current problem? I like that the solution in all cases is change focus of attention. This therefore requires “not thinking about The Worry Tree™”. Problem solved. QED.

Mental Health Resistance Network Protest 20th Nov #WeDemand

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#WeDemand
Please share far and wide
Westminster Health Forum Keynote Seminar
20th November 2018
Registration Time: 8:30 am
Start Time: 9:00 am
Venue: Royal Over-Seas League, Over-Seas House, Park Place, St James’s Street, London SW1A 1LR

Meet outside the venue at 8am. Bring whatever banners you want to bring. Be loud and be proud.

The whole thing is rotten to the core, so MHRN will be protesting this event which will bring together some of the people who have had a hand in preventing us from receiving appropriate care and a secure income.

In response to the abusive agenda of this government, MHRN has produced a document that outlines our demands. It is a living document and will be updated from time to time.

PDF MHRN

We will be launching our demands at the protest and presenting it to Claire Murdoch, National Mental Health Director, NHS England and will be sent to Cabinet and Shadow Ministers, MPs and anyone else we see fit to send it to and it will form the basis of our campaigning.

It will be an early start but it is an important protest and we want everyone who can make it to be there. And of course, it’s off to the pub/coffee shop after we have made our point.

Facebook event page

Mental Health Peer Workers: Our lived experience. Part 2

If you are a peer worker (or work in a similar role) and want to share your lived experience, please submit a blog for consideration:
recoveryinthebin@gmail.com

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Being a peer support worker is an occupational health nightmare. Luckily I tend to think of myself as a bit of a martyr, so I managed to stick it out for a couple of years. I worked in the NHS in an employability setting. The main issues I had could be categorised under the following:

  • Conflict around my identity as a mentally ill person, my diagnosis and my legitimacy as a peer to people who were accessing services I had not yet accessed

When I was a peer worker I had never been with the CMHT as a patient. I has a brief stint at CAMHS when I was 15 where I was mostly told to take baths and sing Belinda Carlisle. I had face to face CBT when I was 19, and had been on and off SSRIs for the 4 years or so since then. Despite having clear barriers to work and education, my own doctors didn’t think I needed help when things were at their worst. I was encouraged to quit jobs rather than find the right support to sustain them, which is in itself a sign of the massive gap in societal privilege between healthcare providers and those they support. That is why I was drawn to being a peer in an employment setting, as most of my barriers had been due to negative attitudes of educators and employers. 

Despite these clear barriers I was facing, I did not share the experience of those in the service I worked in as a peer. I had never come close to being admitted to an inpatient ward. At the time, I had never seen psychiatry. I had a very vague diagnosis of Generalised Anxiety Disorder, but now I am aware that I am actually autistic. There’s a lot of overlap in experiences, but looking back it was very difficult for me to relate to many of the people I was working with. I felt like a fraud, albeit a well intentioned fraud. When I went for the role I had no idea how mental health services worked. I very quickly realised that my legitimacy as a peer would be questioned, but I was always honest about my background and the fact I was still “actively unwell”.

There’s a definite resentment in the survivor movement to “entryists” or people who have had moderate mental illness. It can feel like gaslighting. I’d like people to be mindful of stories like mine when they criticise individual peer workers, because I have experienced trauma my whole life from being boxed into neurotypical expectations. Add to that the notion of “recovery”, and how unattainable that feels to an undiagnosed autistic person who has internalised guilt and mental health stigma on top of the autism. I can’t speak for the “recovery” prospects of specific mental illnesses but with autism the way you are wired will never change. 

  • Triggering myself and those I was working with, as the boundaries of peer support were (and likely still are) ill defined

The NHS love professional boundaries. They are very rigid with them. The idea is that having strict boundaries will reduce dependency from service users, and that the individual staff are protected. What then are the boundaries for someone whose very job description mandates that their lived experience be used? There are attempts to develop codes of working for peers, but at the time these were in their infancy. Also, we are all human, and those of us who have experienced trauma and exclusion have a tendency towards empathy and protectiveness of others we relate to. This is really where the idea of peer support comes from. It is this dynamic that is entirely opposed to how the NHS operates, and why it is difficult to define boundaries in peer roles. Authenticity is one of the core values of peer working, as defined by the Scottish Recovery Network. How does one be “authentic” while maintaining boundaries? 

  • Being recruited on the basis of having lived experience, but still being subject to the same HR sickness absence trigger points and inaccessible sickness absence reporting procedures

Reporting absence was always a struggle for me, because by the time I had realised I needed to be off there was no pulling myself out of the hole I was in. I’d be zoned out, realise I was late or that I couldn’t move, and then be expected to make a phone call to work. Sometimes I’d be howling my eyes out. Sometimes I was literally on the front doorstep, leaving for the train and I’d stop and go back inside. The expectation was that I would call in. I’d get round this by texting, calling and not staying on the line long enough to be picked up (so they’d at least think I tried), or I would get my husband to call as a last resort. In the case of the latter I would hide under my bedcovers with my fingers in my ears until the call was done. 

The NHS is as rigid in its HR procedures as it is of professional boundaries, if not more so. Most big employers are. When well-meaning managers and teams are bringing in peer workers, they might overlook the potential implications of this. They probably hope for the best case scenario, or feel that they can support the peer worker to stay on the right track. We all know this isn’t how mental health works, and inevitably I ended up being pulled up to HR for sickness absence. Given the nature of my meltdowns I recover very quickly, so any absences were a day long, two at the absolute most. Usually all I would need to do would be to go back to sleep for a bit and reset. The frequency of my absences meant that I hit the trigger point, I believe it was 4 episodes in 12 months. (This is kind of appalling when you think about it, even for non-disabled people).

  • Being encouraged to act as inspiration porn embodied, while still struggling to cope in work 

When I had the inevitable HR review I was referred to occupational health. I told the nurse about my role and what was triggering me. She was very understanding, and had ran a peer group for depression herself. She seemed baffled by the fact my role explicitly required me to air my trauma on a daily basis. I floated the idea that I be allowed to withhold my story in work for a while so I could patch up my mental state, or that I be put on redeployment. She said that those two options could basically result in me having no job and it would be too risky. I’ll always remember her comparing my role to Pudsey Bear.

I felt awful telling service users that things would get better while I was struggling so much. Some of them knew I was struggling, given that I cancelled appointments at times. I even had a panic attack in front of one because the space we were meeting in was too noisy. She instantly turned to caregiver mode, and she did a good job of it. That said, when we are expecting to be the recipients of support, it can be quite jarring to suddenly be the provider of said support. I debriefed with my manager and she reminded me that we are all human. It was nice because in other roles I have been threatened over much less.

  • Watching individuals be encouraged to become peer workers despite the trauma it was causing me, and the lack of jobs or progression in this “profession”

People in services like the sound of peer support work. They want to give something back and help others like them. That is admirable, and no one can deny it. However, they also might long for a safe working environment with colleagues who understand their situation. When this is promoted as a benefit of peer support work, it lets society and employers off the hook. ALL workplaces should accommodate people with mental illness. People should not be encouraged to use inclusive workplaces as a crutch at the expense of their own hopes and dreams. I worked with people who were highly skilled and qualified who had somehow decided to become peers, despite peer working being capped at a band 3 salary with no progression route. 

When I did interview for a band 4 in a similar but non peer role, I was asked a very uncomfortable question at the end of my interview. “What is your own personal recovery goal?” I can assure you that no other candidate was asked that question. I fumbled through some response about how my career development was my next goal, and that was why I was sitting in front of them. No I did not get the job, and I was given no feedback despite asking several times. 

Luckily the health board I was with had really good staff development opportunities. I was able to access a bursary to do a postgraduate qualification. My manager was also really good at giving me opportunities for networking, taking ownership of developing processes around the work, some creative projects and also leading on development sessions for colleagues. Doing this enabled me to rebuild my confidence and learn more about the mental health movement. I think peers need to be given the freedom to learn from people across sectors so they can really understand the bigger picture in terms of inequalities. 

  • Witnessing the trauma people were experiencing at the hands of employers, health professionals and the welfare system, yet following a biopsychosocial approach

When people are being bullied out of their jobs and being denied the financial or social support they are entitled to, they need practical support. They either need lawyers, or the systems themselves need to change. The biopsychosocial approach waters down what makes the social model so effective and bold. Had the barriers never existed, the individual disabled people would not have the confidence issues the biopsychosocial model claims holds us back. We can do all the WRAPs and graded exposure we like, if society itself does not change then we are pushing individuals to potentially retraumatise themselves. These approaches are no doubt effective on some level, but we need professionals to advocate for us in the face of austerity and discriminatory practices. Unfortunately, professionals seem to have more clout than we do when trying to influence change, and they need to recognise this and step up. 

  • Work as a health outcome and rigidity to the IPS (Individual Placement and Support) model

One of the benefits of peer support is that it is largely born from wanting what is best for the other person. The service I worked in followed the IPS model, and sometimes this got in the way of doing the right thing for the individual. Some jobs and internships were passed over because they were not permanent, as IPS fidelity scales rate permanent employment above all else. In a precarious job market which becomes even more challenging with specialist fields, sometimes people need to take temporary work to build professional experience. This is a fact for anyone looking for work. Again, people with specific interests, experience and qualifications were somehow finding themselves down the care worker or sales assistant route. IPS is not delivered to a payment by outcome model like welfare to work programmes, but caseloads are restricted to 20-25 people per worker. This leads to a considerable waiting list, and the job retention service was in even higher demand. 

The IPS model is controversial in the survivor movement due to its focus on work as a health outcome. It is often seen as a smokescreen for DWP agendas. (The service I worked in had zero involvement with the DWP or welfare to work unless the service user asked for it). I genuinely feel that work can be a health outcome for those who want it to be, and only when the work is good for that person and what they want to achieve. Work has been a massive part of my own wellbeing, but it has also caused me heartache and stress. It is important to recognise that work itself can be the cause of mental illness. Again, any approaches to helping the individual need to be matched or outweighed by pressure to employers to make positive changes. 

IPS guidelines state that if someone says they want to work they should be encouraged to find work in a timely fashion, no questions asked. What if people are not well enough to work, but they feel they need to because of family pressure, financial difficulty, or societal expectation? How do we know when someone is actually ready? IPS is good for countering the attitudes from professionals who tell disabled people they can’t work. Specialised job retentions support is crucial for people who are struggling, rather than letting them just walk out of their jobs. Having the correct support to help people who want to work should absolutely be part of a package of services available to those who need and want them. The survivor movement should champion approaches that work well for us, and cast a critical eye over those that do not serve us or could do so in better ways. Writing off services altogether on the basis of the wider context around welfare to work does not help the people who want this type of support, and they do exist. In any case, there needs to be more services to support mental health in work. 

  • The use of peer work to plug gaps in services which are being stripped to the bone by cuts 

While I know that my role was created out of a genuine desire to do the right thing, I can see how easily peer roles could be used to plug gaps in services. At times I was doing the work of the band 5 staff in helping people with job applications and interview preparation. I had no training in this, everything I knew I learned through my own job searches. (If that is enough to qualify someone to be an employability worker, then there is a massive talent pool of disabled people out there who could do these roles! Employability services often hire sales people because they have experience of working to targets.) 

Employability overall is a lower risk area than inpatient services. I had a degree in healthcare, but not mental health specifically. I knew confidentiality, boundaries, active listening and working with vulnerable people. I did ASIST training and mental health first aid training. I was fairly well equipped for working with the public, peer angle aside. At times I was likely seen as an infiltrator to the peer movement, because I was equally equipped with lived experience and professional training. 

When peers are being used to support inpatient services, I would be a bit more concerned about how prepared peer workers are. We know how to support each other, we have always had to. The support we give those we know as a peer is very different to how we would support someone within the confines of the NHS. 

  • Do those who recruit peers truly value their lived experience as a matter of principle? 

There is a conflict of interest between being a good peer and being an obedient employee. When I was a peer it was in my job description to challenge the status quo. I did my best to do that, aided with my brutal autistic honesty. I actually had to blow the whistle at one point, and luckily wasn’t written off by managers. I would hope that would be the case for any peer. My line manager was very encouraging of me voicing my views on behalf of service users. Not every team who has a peer worker will be this welcoming of dissenting voices. Again, the identity of the worker is in jeopardy. Do they appease, or do they fight, risking their livelihood and reputation as an employee? 

Overall, my own experience of peer work led me to where I am today. I feel that I can better advocate for people in distress and I have a much wider understanding of the barriers we face to being included in society, namely the workplace. I was very lucky in that the service I worked in was staffed by good people, there were development opportunities and I had a good deal of autonomy. However, I can’t vouch for entering peer working as I don’t feel like enough research has been put in to the potential negative impact of the role on the worker and service users. More has been done on the latter as far as I can tell, but both are equally important. Good intentions do not always result in what is best for people, and the scenarios we are talking about here are far more complex than tea and sympathy.