September 2018 – Recovery in the Bin

‘Choice’ and wrong turns in the world of private therapy

therapist tinder

Note: Many people cannot afford private therapy or are not able to successfully claim PIP. We understand this as does the author. If however you are in this position of having an income or a PIP award this offers some very useful experiences and lessons. For advice on Benefits see these resources Here

I am not a user of NHS mental health services but I choose to be a client seeing a private therapist on an open-ended basis. I have no private health insurance cover. I live in a housing association flat on an estate with its share of anti-social behaviour and police attendances. Until this new financial year my income as a single adult was low enough to qualify for Working Tax Credits. I am employed by the NHS and believe in care available to all regardless of wealth. I value my GP surgery immensely and their endless care provided without complaint. I don’t seek transformational change through private therapy but ‘life support.’

Due to the scarcity of long-term therapy on the NHS there are more people with enduring mental health issues finding we need to look to the private sector. I must admit that in 2012 I did receive a year’s psychological therapy from a psychologist in the local Community Mental Health Team (CMHT) before being discharged back to my GP, no doubt to the relief of that service which had ‘held’ me for ten years. I have since been re-referred to the CMHT during crises where the practitioners triaging the referral have been astonished to meet someone who has received individual therapy from their psychological services. I have been discharged immediately after these ‘assessments’, told to use the tools that I was given in that therapy. I am seen as having used up all of my chances with mental health services and can be turned away as a time waster. I have exhausted what psychology input used to be available but is now a rarity.

Unfortunately, some problems still remain even though I had this one year’s therapy six years ago that should have converted me into a person who would never be distressed again. In 2014 I was granted some ‘top up’ sessions before being discharged and told that I wouldn’t be seen by the CMHT in future while I still had the ‘same presentation.’ I wasn’t able to explain to the mental health services then or now that the clumsy and final way in which I had been discharged exacerbated my difficulties, resulting in a sense of failure and tarnished ending.

With over seven years’ experience of seeking and receiving private therapy support I can share what I have learned here in case you also find you are abandoned by the NHS but don’t feel ready to go it alone yet. I appreciate that there will be many readers with counselling qualifications and years of practice who will find my account lacking. This will be subjective writing but that reflects how each unique individual will react differently to therapy and needs to find the right match of therapist. No therapist will be perfect, but where a therapist is open to thinking about walking in your shoes then there is potential.

I am conscious that for so many people private therapy is out of reach financially. The lowest price I ever paid for a therapy session was £40. I currently pay £90 a session but, as I will later explain, this experience has provided the best value. I receive Personal Independence Payment (PIP) which mostly covers the session fee. However, my first PIP claim has ended and I wait with trepidation as to whether I will be awarded PIP again. Though I am receiving weekly specialist psychology support, the DWP tend to only recognise medical evidence provided by an NHS service. I was turned down for PIP the first time I applied even though I provided a letter from a private counsellor who called herself a psychotherapist. The Atos report repeatedly stated that I received no specialist input. When I complained that most questions in the assessment were about what NHS services I accessed and not how my disability affected me, the written Atos response was that the DWP used secondary services as an indicator of severity. In practice, the DWP decision maker favours NHS or Atos evidence over that of a private psychologist even when that practitioner also does NHS work. If I lose PIP then my therapy will be at risk but I would still prioritise this investment over other living expenses.

Therapist Tinder

There are several online facilities to find a private therapist especially the BACP website and the Counselling Directory. Counsellors and therapists will pay to be included on these sites and can indicate the areas of counselling they deal with. I feel sceptical about the wide choice on the Counselling Directory where some, apparently newly qualified, counsellors will indicate they deal with all of the 93 categories listed. I doubt that a counsellor would have an interest in areas as diverse as Autism, Abortion, HIV, Personality Disorders, hearing voices and gambling. Since I object to my diagnosis of ‘borderline personality disorder’ I could make sure the therapist didn’t have an interest in this area by excluding that option, but then I may miss a practitioner who was critical of the label too. No therapist is likely to go public with a critical view of current mental health practice and so one profile is much like another. These bland profiles may say how the counsellor wants to help you to live a fuller life and will provide a safe space. There are photos of the practitioners, making the site feel like the therapists’ equivalent of Tinder.

There are some definite warning signs to look out for in profiles. I avoid therapists who are clearly looking to supervise trainees rather than troublesome clients and boast of their skills. A psychotherapist who comes up in my postcode search on the Counselling Directory describes himself as one of the leading psychotherapists in the field with a national and international reputation. He has written books on the erotic transference and countertransference within the therapeutic relationship, suggesting erotic feelings and fantasies can bring about transformation. Where a professional has a research interest or psychoanalytic focus then it is advisable to steer clear since they are likely to see you through their filter. I have negative experiences of therapeutic communities so would discount a therapist prepared to say he had worked in these places which would mean he had facilitated group cannibalism.

The fees of therapists may be another deciding factor. My experience is that psychologists charge a lot more than counsellors and psychotherapists, even outside London. A few years ago I worked close to a psychology practice where fees started at £130 for an associate psychologist. An assessment report by one of their psychologists would cost several hundred pounds. The average session fee for a counsellor or psychotherapist is usually £50-£60 though some offer sliding scale which may take it down to £40. There are charities such as local Mind associations where they offer free or subsidised counselling. Some employers provide an Employee Assistance Scheme though my experience is that these are call centres where any counselling offered amounts to six phone calls with someone who only gives their first name.

Most psychotherapists and counsellors operate a 50 minute hour. I have resented paying £1 for every minute and so £3 may go on a long pause or £10 on a pointless interpretation which I didn’t recognise. Given the high cost it is important that you find a therapist who allows you to direct the time and doesn’t impose a particular model on you that doesn’t make sense. I used to end sessions sooner than 50 minutes as I would worry so much about causing the therapist to overrun, though they kept looking at the clock so this was probably unnecessary. It has felt as though I was toxic and could only be handled carefully within the allowed slot before ceasing to exist once time was up.

With counsellors registered with the BACP you may want to look at whether they have worked to gain accreditation or senior accreditation. A person centred counsellor can be as skilled and able to deal with complicated issues as a psychotherapist. It can feel as though a psychotherapist’s training, with years of costly self-analysis, leads to them becoming less authentic as they are able to objectify and distance clients. There is a professional mystique around psychoanalysis and psychotherapy which now seems outdated. Don’t be afraid to ask the therapist about their qualifications and experiences. If they are defensive about this question then look for the door.

Therapy approaches (whether you like them or not)

I don’t wish to generalise, but my experience of therapists is that their style and demeanour is influenced by their training and treatment modality. The therapist appears to believe entirely in their single modality. I find CBT therapists dogmatic in their promotion of CBT with an insistence on it being evidence based, making sure they give you ‘homework’ and that you do not look to them for support. Last year I made an appointment to see a CBT practising psychologist willing to offer five sessions of CBT before we reviewed progress. The first thing she said to me was: ‘this is a business arrangement’. She made me justify why I wanted therapy again when I had tried other therapies in the past which obviously hadn’t worked. When I voiced my sense of rejection by local services she said that they wouldn’t be able to see me as: “they only have capacity to see those who are in the severe and enduring mental illness group which isn’t you.” I didn’t go back to her as why would I want to pay someone who made me feel as bad as NHS services did at the time of discharging me.

I had tried CBT before privately for around six sessions. The psychologist again acted as though she didn’t really want to see me. She challenged me during the assessment when I asked if she was only at the clinic on Fridays. The relationship ended since I emailed her after I collapsed due to bleeding out from a self-harm injury on the way to A&E. When we met after this trauma, she said that she wasn’t there for support, this was time limited therapy and asked why I had contacted her about the incident. I felt very dismissed and distressed by this response after an episode where I had to be revived by paramedics since I had gone into medical shock. The attitude of CBT therapists is that they want you to cope on your own, which is a great aim but ignores the realities of people’s lives which may involve poverty, loneliness, trauma and loss.

Bad therapy

My worst and most extended spell of therapy was with a psychoanalytic therapist for 18 months. When I ended with NHS psychology services I did ask my CMHT psychologist if he could make any recommendations. He told me not to use Increased Access to Psychological Therapies (IAPT) as they were only trained to a certain level and would not be used to seeing someone who had been through as much as I had been. At first he refused to make any suggestion because he felt this was my wanting him to provide for me after we ended. Eventually he did suggest two names (one being the therapist who writes books on erotic transference already mentioned) who also did sessions for the CMHT. I did opt to see the therapist without the interest in erotic transference knowing that as a self-identifying asexual I wouldn’t appreciate that imposed focus. His website was inoffensive though there were no real selling points or personality there. On reflection I chose him in order to keep some connection with the CMHT and the psychologist who I had liked working with. I remember when we first spoke on the phone and this new psychotherapist said that he did have ‘vacancies’ and gave me an address for his ‘consulting rooms’. He practised at his home though we never called it that. Everything was impersonal, robotic and guarded. He once came to the door on crutches and wouldn’t say what had happened to incapacitate him.

The psychotherapist’s fee was £50 a session which I had to pay in arrears once a month. I was not allowed to pay him any sooner or later than a week after he handed me the slip of paper. The ‘invoice’ said ‘for professional services’ and he signed his initials along with the dates of the sessions. I then would take a cheque to him the following week which he received in silence. I was earning around £16,000 a year and wanted to pay him weekly to help with my budgeting. However, any mention of a change in payment arrangement was refuted and analysed; his theory was that I needed to hold onto the payment for him as this was similar to my unwillingness to contain my emotions. It was another ‘boundary’ in the relationship which I had to keep or face heavy discussion. I was not allowed to email him except about practical meeting arrangements. If I missed a session, no matter how much notice I gave or how ill I was, then I would have to pay for it. This is in line with other therapists I have seen where even giving many months’ notice of cancellation meant I still had to pay at least half ie £25 in order to keep open my ‘slot.’

The relationship with the psychotherapist was rocky though he told me to give it no less than a year. If I emailed him saying I wanted to end he would ask me to come to the next session to discuss it. I wasn’t able to end as it still would have felt like a rejection and treatment failure, mirroring the botched ending with the CMHT. I felt beholden to his clever but empty interpretations, for instance whether eating sandwiches as a child meant that I avoided them now or was my mother not breast feeding me a cause of my eating distress. I felt too passive at times to say the obvious ie ‘what rubbish.’ We kept returning to the relationship and what was happening in the room even when my mind was elsewhere since not all of my feelings were about him. It is hard to feel much about a therapist who is deliberately a blank page. He found everything I said ‘fascinating’ while offering no warmth, humanity or ability to be real in return. Therapy felt like an intellectual exercise and not a therapist acting as a witness or helping me deal with expressed difficulties.

It was clear that the psychotherapist always had to be in control. When I decided to apply for a lay position on a committee of the UKCP he saw this as a direct attack on him. I felt that he would welcome my interest in user involvement but he felt that I was going for a job with his regulatory body to gain power over him. When I asked if I could start his first session of the day ten minutes early in order to catch a bus to work he said he needed a week to think about the ramifications.

After paying the psychotherapist over £3,300 he terminated the therapy due to my self-harm. He had given me an ultimatum, in effect a contract not to self-harm. When I challenged how this would help he said I was ‘playing games’. He only reacted to the self-harm when I had let him know I had been to A&E. It felt as though he was safeguarding his reputation rather than thinking about what happened to me once I was completely unsupported. He told me that if I felt I couldn’t stop self-harming then I should go back to the NHS, which was the same CMHT he worked for. Unsurprisingly the CMHT rejected the referral and expected me to go back to seeing him or another therapist who I should find in an instant.

It can be possible to be trapped in a therapy relationship like this and I imagine it to resemble domestic abuse in some ways. You hope for change in yourself and for the therapist to actually like you. You keep going back only to get the same cold, controlling treatment again. Paying so much to a therapist who stopped seeing me since I was distressed enough to self harm felt abusive.

Still not found what I am looking for

Needless to say, there have been many other therapists I have seen who felt unsatisfactory. I have often had to wait in the rain for my time to knock on the door of the therapist, as arriving even two minutes early was breaking a boundary and forbidden anyway since they had no waiting room. At times I wondered why I was paying £50 to a therapist with a house which must cost close to a million pounds when I was going back to a flat with neighbour problems. I have seen two well meaning counsellors who, while lovely, just seemed to agree with me as their way of validating everything. This agreement then entrenched my sadness and led to a sense of going round in circles. One of the counsellors said things that felt trite or weird, like describing us as ‘the dynamic duo’ as a way of compensating for the fact that no-one else, including the GP, was interested.

I have tried the only NHS therapy available to everyone through IAPT. This experience, while free, felt rushed since the therapist kept saying: “you know we only have six sessions.” Ten minutes of each session was spent filling out a self-assessment questionnaire for my anxiety and depression scores. This exercise was about her outcomes monitoring and had no therapeutic purpose. I gave up after the first session since I knew that my scores were unlikely to improve within such an irritating and imposed format.

A good match

I do now see a psychologist who treats me as a fellow human being. There can be misunderstandings, as in any relationship, but we discuss and repair. She is relaxed about me emailing which is important to me given my anxiety means I sometimes have to communicate in that moment. While she does have vast secondary care experience of working with clients with a label of BPD she views the underlying complex trauma and understands the prevailing discrimination. I prefer the way that she can draw on many different therapeutic approaches rather than deciding we must do DBT, MBT, Stepps etc because that is what is in a NICE guideline for BPD. I don’t see her as part of the PD industry, another expert who will get me to mentalise even though we can never truly know what someone else is thinking about us. I like that I don’t know much about her personally, though I guess we are not far apart in age. She is intelligent but not over intellectual and I can talk to her about the most intimate or embarrassing problem without shame. Most of all I see how she really wants to help and see me free of mental torment, while avoiding any rescue attempt when I do sometimes self-harm. I see her in a clinic where she hires a room so have somewhere to wait if I want to stay out of the rain and cold weather before an appointment. She puts up with me being gloomy at times without demanding I think more positively as she hears the life circumstances that make this challenging. I can take everyday issues to her such as work obligations and family relationships, looking for new perspectives and coping strategies.

I have spent tens of thousands of pounds getting to this point, too much to just put down to bad experience. At best I helped the psychotherapist I saw for 18 months pay for holidays for his secret family when he took the whole of August off. But I also think that all of the misses make me appreciate my current therapeutic relationship more, I feel grateful that there is someone who ‘gets’ me and that I can still benefit from therapy. As my therapist she listens and learns from me, whereas the analytic profession will search for unseen and hidden meanings which would cost me more money but answer nothing. It feels interactive and equal, a gift of therapy and not another missed connection.
I would always want long-term therapy to be available on the NHS. In the new real world though I am using what is available to survive, stay in work, gain insights, practise self-compassion and acceptance of what can’t be changed.
This isn’t an advertisement for private therapy as I know it will continue to come down to affordability for most people. If you want CBT then don’t pay a penny to a private therapist but go to IAPT along with perhaps buying self-help books. Private therapy can though lead to a special relationship but this is far from automatic. So much choice in the private sector and personal vulnerabilities can certainly lead you down wrong paths.

Note: PIP is awarded on functional descriptors about how your condition/difficulty/impairment AFFECTS you. Saying on a form ‘I need PIP to Pay for Therapy’ will get you zero points, you must phrase all answers in the form of how you are affected and with reference to the legal descriptors, see Advice Links

Ruth Davidson, Mental Health And Tory Policy

Screen Shot 2018-09-26 at 18.44.41

Thank you to Irene Sutcliffe @hotsexmadrigal and James Loxley @oldnorthroad for permission to repost their article here:

On 16 September, the Sunday Times published an interview with the leader of the Scottish Conservatives, Ruth Davidson. The piece was both about Davidson’s private and public lives (the two can’t really be separated, not in her line of work): her pregnancy and the importance to her and her partner of starting a family, her political career to date, and her desire not to be Prime Minister (despite strong rumours to the contrary). The interview was trying to be a refreshing take on a Conservative politician – as the interviewer points out, on the surface, Davidson is hardly your archetypal Tory, ‘…a working-class, winningly informal, cheerfully profane 39-year-old lesbian former kick boxer…’. The piece even begins with Ruth dancing for the photographer, apparently unembarrassed. She is portrayed as frank, amusing and charming. She has an autobiography coming out, called ‘Yes She Can’, and a lengthy extract from this book, which deals with her breakdown aged 17, is printed at the end of the interview.

It should only be a good thing when well-known figures, especially those in positions of political power, are candid about their mental health issues, for several reasons. Firstly, and perhaps most obviously, it shows that the black dog strikes indiscriminately – sure, Davidson is a lesbian from a working-class background, but she is also an educated cisgendered white woman who can’t fairly be called working-class these days. Secondly, it demonstrates that mental health difficulties needn’t be a barrier to doing such a demanding job. And thirdly, such people are actually in a position to change the way the state provides for those with mental illness – which it does woefully badly at the moment. Woefully badly. We cannot emphasise this point enough. English NHS services are laughably understaffed (for example, when one of us was under section in a psychiatric unit in a hospital with 6+ wards, there was ONE doctor covering the whole hospital outside of 9-5 Monday to Friday hours). Waiting lists for NHS therapy are horrifically long, and even private therapists are stretched. The postcode lottery is a huge factor in terms of what is available to those suffering with mental health problems. While the NHS in Scotland is devolved (in fact, it has always been separate) and hasn’t had to cope with a drive towards marketisation, years of real terms cuts to the Scottish government’s budget and increasing demand mean that there is still huge pressure on resources, and services are certainly not where they should be. The recent allocation of additional resource to mental health care in the Scottish budget is a very welcome step, but will not go far towards solving the problems. Stories of people not getting the care they need will continue to proliferate.

The interview proved points 1 and 2 pretty well, and there’s not much need to go into those here. But let’s take point 3. As an MSP, the leader of the second largest party at Holyrood and an aspirant to the position of First Minister (if not, as she claimed in her interview, that of Prime Minister), Davidson has a prominent platform from which to advocate for significant improvements in this system and – just as importantly – to will the means required to make such improvements happen. One of the most crucial things that mental health services require for improvement is, essentially, a huge injection of cash. But we also need meaningful changes in the way the state – and society – view mental illness in all its various forms: not as the fault of the individual, but as a difficult and unfair thing that could befall anyone. It’s also not the responsibility of the individual alone to recover from their unwellness: it’s society’s duty to help everyone, and to make necessary adaptations for those with mental health problems so that they can operate within society and not on its fringes.

So, what does Davidson have to say about all this? Here is the extract in full, with our commentary:

I went to university at 17 years old. If I’d known then that knowledge was not the same as intelligence and confidence no substitute for ability, I might not have struggled so much. But another event crashed into my world. A boy from my home village committed suicide. I’m not a psychologist and I don’t know why his death affected me as much as it did, but I went into a total tailspin.

I started hurting myself: punching walls, cutting my stomach and arms with blades or broken glass, drinking far, far too much and becoming belligerent and angry, pushing people away. I was punishing myself and hating myself for it at the same time.

So Ruth really was unwell, for whatever reasons – biological, psychological, social, whatever. She showed her interviewer the scars on her arms: One of us, too, has these scars. We know the urge to self-harm, to drink to make the noise in your head shut up, and an awful lot about existing as a ball of sheer anger. Despite the political and personal gulf between ourselves and Ruth, we share that in common. And it resonates.

At 18, I was diagnosed with clinical depression and put on antidepressants. I was frightened, confused and worried that I might be going mad — that this was what a mental breakdown was. After starting medication, I had desperate, dark, terrible dreams that were so vivid, I couldn’t tell what was real. I became anxious and paranoid. I started having suicidal thoughts. Every time I went back to the university health centre with a fresh set of injuries, the doctor on duty just doubled my dose and things got worse.

In the end, I was on the maximum dosage allowed and became so scared of sleep that, in my second year, I spent a whole term living nocturnally. I stayed up through the night and only went to bed once my flatmates had left for lectures. As an arts student with very little structured time — we were in charge of our own required reading and making sure essays were handed in — nobody much noticed or cared if classes were missed.

Here’s the thing. Antidepressants can cause mad, adverse side-effects that do often diminish with time. They can be really horrible. We ourselves, and plenty of people we know, have suffered side-effects that range from the unpleasant to the truly horrible, and we have all had the experience of waiting and wondering if things will improve. We feel really bad for Ruth in this situation. Because it’s horrible, obviously. No-one wants to suffer this way. The problem here is that Ruth doesn’t seem to have been tried on any other types of antidepressant when whatever she was put on was having adverse effects, and doesn’t say whether or not she was offered any therapy. Really, those are the issues here, not antidepressants in themselves. It is easy to stay stuck on meds that don’t work for you if you’re depressed and not really in a place to argue with doctors. What might really have helped Ruth here is psychiatric monitoring, and pathways into therapy. Essentially, providing both those things boils down to money.

But then, things get tricky.

Intellectually, I know that drug therapy helps millions and that in a different time, or with a GP who knew me, instead of the revolving door of a university health centre, I could have received treatment that helped me get better, instead of making things worse: the manufacturer of the drug I was on has since paid out millions following class-action lawsuits after evidence of increased suicidal behaviour in adolescents.

Davidson doesn’t say which drug she was taking, but there have indeed been concerns about the risk of increased suicidal behaviour among young people taking SSRIs, and lawsuits have indeed been settled by manufacturers. Some drugs are no longer prescribed for children and young people because of such concerns, and practitioners are much more alert to the dangers. Serious side effects of this sort were and remain rare, however, and it doesn’t help anybody for a senior politician to make statements that could prove unnecessarily alarming.

But the key point here is actually not one Davidson meant to make. The experience she describes is of being prescribed a drug and then not receiving the consistent help and support she needed when it didn’t work for her. That is what happens to far too many people suffering mental ill health in this country. And it happens precisely because overstretched health care providers are not able to give people the time and attention they need, because the resources aren’t there to pay for them. So we come back to money, and the problem for Davidson here is that she has consistently supported the austerity policies of a UK Tory government since 2010 which have led to so much increased pressure on health services and devolved government budgets. And when the Scottish government increased income tax on the well off in order to address some of the budgetary shortfall, who led the charge against it? Why, of course, it was Ruth Davidson. She’s happy to will the end of better mental health care, but totally opposed to willing the means.

There’s only one way that Davidson can escape the implications of her statement, and that again comes down to what she can will – or thinks she can, at least.

I had mocked the leaflets I was given on the diagnosis — NHS instructions to do light activity, like housework or clearing out my cupboards. But eventually I made a decision to will myself better. I resolved to build a structure to my days and weeks, to set short- and medium-term goals, to engage in purposeful activity that had a measurable outcome, to take regular exercise, moderate my drinking, go back to church and be kinder to myself.

This is where the wheels really start to fall off in an alarming way. Firstly, you simply cannot will yourself better from depression. Fact is, Davidson structuring her days was a very good idea and probably took immense strength of character, but she did not will herself better. That is something we’re told to do when we’re unwell, which we can’t do, or fail to do, and end up beating ourselves up when going for a run or doing meditation or being somehow more mindful doesn’t work. This is where dogmatic Conservative ideology rides in to rescue Ruth from the real lesson of her story. Now she can assert that YOU have to get better ON YOUR OWN and it comes FROM YOU. Yes, there’s an element of truth to that, but it’s also, as we’ve said, something we do in collaboration and something for which we are collectively responsible as a society.

Most importantly to me, I threw away my pills and promised myself that, whatever happened, no matter if I slipped back, I would never take them again.

I couldn’t go back to a place where I didn’t know what was real and what wasn’t, where my emotions were hollowed out but my anxieties heightened.

Well, obviously those particular meds weren’t working for her. I think we’ve established that. But this is just the sort of ‘get on with it yourself with no support’ attitude that Tories standardly resort to and take pride in. It’s also worth noting that her diagnosis was depression. Thing is, not all mental health problems are the same. Schizophrenia, bipolar disorder and psychosis – these are things for which drug therapy is usually the norm, and inpatient stays are often necessary. Ruth’s bootstraps approach certainly wouldn’t do the trick here. All this, what’s more, in a society where both work and welfare are being re-engineered in ways that increase the chances of people – especially those without privilege or capital of any kind – getting ill.

And this inevitably colours her somewhat solipsistic account of where things are at now:

More than 20 years later, the ways in which we understand and respond to mental-health issues are unrecognisable from what they once were. The stigma is much reduced, and depression is something that far more people feel able to talk about. There’s a long way to go, but it helps when more people in more fields open up — when sports stars, royalty and business leaders say publicly that they have a condition they manage, and can demonstrate that it doesn’t stop them achieving.

I am still frightened of going back to the psychological place I once inhabited. When I have periods of heightened anxiety, or I can feel the weight of the black blanket start to descend, I go back to what I know works for me: structure, exercise, forward momentum, measurable outcomes.

Well, yes, openness is important, and great to see. But this is much too rosy a picture. Twenty years on, we don’t actually understand all that much more about the workings of the brain than we did. The Diagnostic and Statistical Manual of Mental Disorders (DSM) is still an evolving document, and there is a huge debate underway about the usefulness of any diagnoses in mental health. We’re also not sure stigma is reduced – the fact we talk about it is one thing, but when we’re told to talk to someone about our mental health – who exactly do we talk to? Many Community Mental Health Teams are now not taking patients unless they have attempted to commit suicide already. That’s the criteria for getting help in some places – try and off yourself. And again, this is down to an already-underfunded mental health system in England being gutted by the Tory government to which Davidson offers her unwavering support. So it’s great that she has her techniques to stave off depression and they work for her, but the idea of pulling yourself up by the bootstraps and getting on with it when you are unwell is simply laughable. The vast majority of people involved in mental health care know this. While Davidson and her supporters comfort themselves with their self-affirming story of self-reliance, out in the real world more people will die.

The UK Government Has Been Killing Disabled People, A New Government Must Stop This And Make Things Right

Screenshot 2018-09-25 16.45.40

Ok, I wrote this a couple of weeks ago while thinking about the roundtable meeting with John McDonnell and saved it away, I think it needs putting out there now, because clearly even people supposedly aware of what is going on seem to not understand what it is like to be a target of government hostility. This is what a future new government needs to do to make things right and respect disabled people’s rights and lives and to move forward.

1. People have a form of trauma from their dealing with the DWP and contractors over the last decade, we are survivors of state sponsored abuse, that needs recognising and help given.

2. To that end there needs to be a formal state led process of truth and reconciliation and part of that will entail key senior command people face trial, thousands of lives have been taken here and that trauma cannot be dealt with without redress, forgiveness can only happen after an oppressor accepts what they have done and that it was wrong. There is no place for sanctions in a social security safety net. It should also be noted that professional bodies (General Medical Council, Nursing & Midwifery Council & Health and Care Professions Council) have sought to protect their members from complaints and remedying their institutional bias needs to be part of this process. The Coroner System also needs to be changed so the threshold of determining suicide and causes is no longer to a criminal standard and that coroners warnings to government about lethal effects of policy have statutory force and cannot be hidden or dismissed. As for Corporate Charities or Disability Rights UK, when push came to shove, they mostly failed us. If they want to share in this way forward they have to re-orient how they represent the people they supposedly are constituted to help.

3. Long term the DWP is so institutionally dysfunctional it has no future in a civilised society, we need a new Ministry combining Social Security and Social Care closely allied to Health (if not also Health) DHSS, imagine such a thing! And firmly rooted in human rights and the social model. So not Universal Credit.

4. More directly about the future, there needs to be a transition plan so that the Friday morning when Labour walk into Downing Street, civil servants and government lawyers are tasked with ending the contracts with Atos, Capita & Maximus. On this we are happy to provide testimony to show all three are catastrophically in breach of their contacts and deserve no exit clause payments, in fact they deserve prosecutions. The assessments need to be paused, interim payments continued and an emergency process in place to deal with ongoing claims and new claims while new legislation is debated and passed, ideally seeing NHS professionals and the claimants own support network co-produce an assessed support plan that is the gateway to benefits. The era of the fear of the brown envelope must end immediately.

Unsupported Work To Provide For No Family – The Work Cure?

“Work is good for you” is a mantra inflicted on everyone of working age including mental health service users. I don’t think the reality is straightforward and work can feel perilous when it is insecure, (zero hours contracts being the clearest example), low paid, low skilled with employers whose priority isn’t to ‘promote staff mental wellbeing’. I do work full-time though didn’t achieve regular paid work until I was 33 years of age. Please bear with me as I explain this statement since I feel I need to justify it in case anyone assumes I was lazy or went travelling the world.

When I was 18 I reluctantly dropped out of university with a weight below four and a half stone. I spent the next five years being refed and rehabilitated from Anorexia. At the age of 23 I tried to make a new start with a disabled person’s traineeship for a government funding body. My manager terminated this fixed-term contract after I disclosed in confidence that I was distressed and self-harming outside of work. My life then fell apart and the self-harm worsened with paracetamol overdoses. I was fortunate to meet a community psychiatric nurse who saw beyond the self-harm, encouraged my potential and need to stay busy. I volunteered at a local Citizens Advice for nine years during which time I was hospitalised for countless blood tranfusions and even sectioned on the psychiatric ward due to pressure from A&E medics for services to do something. In my early thirties, while still under the community mental health team, I came across an incredibly hard working, sound and enthusiastic vocational adviser, using the Individual Placement and Support model, who motivated me to finally contemplate a meaningful, appropriate and chosen job.

I believe the structure of work helps me now though work is inherently stressful. I never want to imply that I have done it and so should others with mental health issues. I have seen this bullying attitude amongst peer leaders who had chosen working in a supermarket or self-employed consultancy on mental health over claiming benefits which they saw as a mark of disgrace and welfare dependency. Some service users progress to working within mental health services in peer worker roles which are usually underpaid and undervalued by their NHS trusts. However, I decided to do administrative work away from mental health care, since I feel too much of my life has been lost to mental health already.

I have many friends who don’t work due to their mental health and I would always advocate for their need to be left alone by the Department of Work and Pensions (DWP) and the various organisations, which can include NHS trusts and mental health charities, acting as their agents. While the fear of being made to do ‘any’ job, if found fit for work, did propel me to act before I was forced, I don’t support this underlying threat tactic.

Apart from the benefits questions, I have been wondering whether there are unspoken disadvantages to being in work when you have ongoing mental health challenges. These disadvantages include health services seeing an employed person as recovered, the lack of support in the workplace, the inability to disclose less appealing diagnoses, for instance ‘personality disorders’, eating disorders or addictions, and the difficulty of accessing benefits support which enables you to keep working.

This week I attended a CCG organised ‘Coproduction’ workshop on local care and mental health using my annual leave so that I could speak freely. A consultant psychiatrist was the speaker representing the main mental health trust in this area. His presentation and words were: “only the most severely impaired should access secondary services.” I interrupted at this point to ask how he would define ‘severely impaired’ and if it could include people in work. The speaker said that it would not because: “they wouldn’t want to see us as they are out working providing for their families.” I pointed out that someone in work could still have a crisis, indeed could need hospital admission. I felt a lone voice in a room of professionals where others probably agreed that all patients who can just about function should be discharged back to primary care to release capacity in the system, outing those who are the equivalent of bed blockers in hospital.

There are logistical difficulties of accessing mental health services if they decide you deserve an appointment when you work. Even the mental health services embedding in primary care operate during core work hours and may be in a town away from your place of work. Since I’m fully aware of the huge demand on specialist services, it does kind of make sense how services view someone working, even if signed off sick, as more able to fend for themselves. Perhaps there is also a mistaken belief by professionals that working is a curative therapy which then creates a lack of comprehension why someone, particularly with non-psychotic conditions, should become ill when in work. Services only want to see people short-term to work to Recovery model goals, so if you have achieved paid employment then this can in itself be regarded as marking the end of the treatment journey.

My experience of applying for Personal Independence Payment, once Disability Living Allowance ended, is that working counted against me. The medical report from my face to face assessment with a general nurse employed by Atos repeatedly said “in her social history she states that she works full-time with no specialist input.” While I scored 6 points these were on account of my eating disorder, thankfully being in a job doesn’t denote that I can eat three meals a day or prepare a simple cooked meal. The assumption made by the assessor and the DWP is that if you hold down a job then you can do all of the activity descriptors involved in daily living. I was turned down for PIP and had to challenge the decision. The short-term award I did get on mandatory reconsideration has meant that I have to go through this claiming process 18 months later, explaining all over again how I can be employed yet still find it difficult to engage with other people face to face.

If you do become more unwell while at work, whether caused by work stress or personal issues, then there may be no support to prevent your job loss. Large employers usually have an outsourced Occupational Health service but this tends to amount to advice for the employer about when the employee is likely to return to work. There is no advice directed towards the employee about how they can cope with work. The provider used by my current employer is OH Assist, which used to be a division of Atos, the private company which performs benefits assessments on behalf of the DWP. The assessment of the employee’s health and subsequent advice report is done through a brief telephone consultation. The Occupational Health Adviser may be a nurse or OT who has no mental health knowledge, leading to a short and generic report for the employer, which is more of a tick box exercise than a considered specialist opinion. I have had to pay my private psychologist to write a report for my line manager in the hope that it may lead to reasonable adjustments and understanding of how to support me at work.

Many large employers do have an Employee Assistance Scheme (EAP) which is telephone based. My experience is that calls are short, possibly to target times of 10 minutes, unless you wish to access eight sessions of phone counselling. Since the EAP is also outsourced to a national company, there is no familiarity with the employer you work for and their policies. I was overpaid salary of thousands of pounds in error by my employer but had no way of sharing my pay slips with a phone adviser who would be someone different if I called again. The extent of the advice given during 10 minutes about my overpayment was that the employer should be ‘reasonable’. I experienced even greater stress when my employer then demanded in two threatening letters that I repay the total overpayment back in two months leaving me with a nil income for those months. In fact, the overpayment recovery deductions set amounted to more each month than I would have been paid. I had to use my annual leave to see a local Citizens Advice to figure out how to respond to the overpayment that wasn’t my fault though still needed full repayment.

Job retention support is non-existent despite the way that work is a policy priority in mental health and the Five Year Forward View. I approached the Shaw Trust and was told that they weren’t commissioned to provide job retention and the only way they could help me was if I gave up my job to look for another. I have seen the Disability Employment Adviser at the Jobcentre and was given a leaflet for an NHS funded Improving Access to Psychological Therapies service offering six sessions of web chat and was told that Access to Work wouldn’t cover anything for mental health except taxi fares. After much internet searching, I found Remploy, funded by Access to Work, has a Mental Health Support Service. I self-referred to this service and understood that there would be six months of support. I later realised that the support was telephone based whereas I needed someone to come with me to meetings with senior managers at work. Remploy is in partnership with Maximus, which is another private company that provides benefits assessments for the DWP.

Two weeks after I self-referred, a Vocational Rehabilitation Consultant phoned me and offered the only face to face meeting I would have in six months apart from a 13 week review he said could be done in person or over the phone. He made clear that he was fitting me in on his way by train to another client. His office address is over 150 miles away from where I am based. During our meeting lasting half an hour, he asked my diagnosis and when I said it was ‘Borderline Personality Disorder’ he suggested that I was a ‘complex lady.’ He said that he had other clients with BPD but they did not self-harm and he knew how with BPD one day he may be my best friend and the next day my worst enemy. I tried to explain that I didn’t experience this perception and found such a stereotype offensive. He had emailed me a lot of leaflets produced by Mind in advance of this meeting and asked if I had read them yet. I was in crisis, attending A&E for wound repairs, so reading the leaflets was the last thing on my mind.

My personalised action plan from Remploy stated that the “reading resources were provided to help her better understand anxiety, depression and self-harm so that she can try to develop coping strategies to better manage her mental health.” He drafted a letter to my manager which I had to ask him not to send since it stated that she was the cause of my anxiety! When I gave feedback that the leaflets were too basic and his service didn’t meet my needs he replied in several emails saying:“We deal with individuals who have mild to moderate mental health difficulties who are already in employment and do not require intensive support. I feel you are not benefiting from the mental health support service (MHSS) which Remploy deliver as it provides a much lighter touch as I think you require a level of intensive support which is not designed into the MHSS as it is not designed for that purpose.” He never suggested where this intensive support should come from. I still have to provide him with monthly updates until the end of the six month support period, even though I have withdrawn from the service.

My employer does have Mental Health First Aiders (MHFAs) who can be approached in the same way that an employee could ask for physical first aid if they had an accident. These MHFAs do have two days of training. I believe that staff with the right qualities training as MHFAs can be a helpful resource in the workplace though their role is to listen, signpost but not to give advice. However, it isn’t easy to approach MHFAs you know as colleagues. While the conversations are meant to be confidential I do have a doubt about whether I may regret being open if later interviewed for a promotion by a colleague who is also a MHFA and may see me in a different light. I have not managed to tell any of my colleagues about my diagnosis as I am sure it would damage my career prospects. There are so many negative articles online about BPD that a manager would only have to look at the wrong Walking on Eggshells type web page to form a judgement that the employee was a problem.

In several places of work I have heard colleagues use what they call ‘gallows humour’ about customers, such as saying those who self-harm seek attention, that it was a waste of resources that an ambulance helicopter was called out for a resident who had taken an overdose and that they wished one of their clients would get run over by a car as he served no useful purpose as a drug addict. I still hear where clients are called ‘manipulative’ as though this is definitive. Even though the colleagues are not talking about me, I start wondering what statements they would make if they knew that I was a frequent user of A&E, covered in scars under my long sleeved shirts and trousers. I want to educate them on the distress behind mental health issues but don’t want to reveal too much about my own history that they either feel sorry for me or form a different opinion other than one based on my strong work ethic.

There is the isolation of being single and in work (I have no family to provide for despite what was suggested by the speaker at the workshop). I have no-one to turn to after a long day in the office where I may have experienced conflict, stress or bad news, for instance there is an imminent restructure. It takes me several hours in the morning to psych myself up to go to work and once home I have no energy left. I eat something simple like cereal, having snacked for most of the day due to my anxiety, I then phone my surviving elderly parent and go to bed. The events at work and whether I said the right thing or have forgotten any task go round in my mind inhibiting sleep. I know that the next work day offers more of the same routine, perceived criticism, uncertainty and self -doubt. Working has created distance from a few friends who think that it is alright for me now I have work and don’t have to worry about work capability assessments. Government policy pitches disabled people against each other. We compare ourselves and who needs the rationed resources more since benefits and services were cut as part of austerity measures. I also feel I have no energy to talk to these friends about their encounters with mental health services when I just need total rest after forced company in the office. I don’t feel like using the computer or answering the phone since I fear I will have no resources left to go into work again.

I often feel like a disaster survivor unable to tell my colleagues what has happened to me through iatrogenic and personal traumas. My world is clearly not theirs. I share in their news of families, childcare arrangements, children’s exam results and their own career promotions. I don’t say how unhappy and empty I feel inside or that I won’t see anyone over the weekend as otherwise I wouldn’t recover to see them again on Monday.

If work is good for you, it should be good to you as well. Work needs to be with a supportive employer, have a benefits package with well funded employee wellbeing resources, open minded colleagues and local NHS and voluntary sector services that don’t exclude the ‘high functioning.’ There should be a raft of supports that are concerned about job retention and not just a job placement, job done approach. Voluntary work should be valued as a meaningful and important part of life for those whose mental health condition means they shouldn’t be pressurised into work to targets or to keep the welfare bill down. We need to work together as allies, those in and out of work, to make sure our voices are heard and that work is chosen, decently paid, healthy and fair.

Hey Binners, Let’s Write To The UN!

Screen Shot 2018-09-02 at 18.35.04

We would like to crowdsource from you lovely binners a submission to Philip Alston UN Special Rapporteur on Extreme Poverty and Human Rights, who is gathering evidence in UK.

>DEADLINE Friday 14 September at 18:00 GMT Respondents are requested to limit their comments to a maximum of 2,500 words. Reports, academic studies and other types of background materials can be attached as an annex to the submission. All input will be treated confidentially by the Special Rapporteur and his team<

Humble suggestion: we take the framework of- our political economy creates and maintains poverty, poverty incites/exacerbates mental illness, with NHS, Local Authorities, and DWP assessing away need in order to make cuts the ‘safety net’ is gone (Police being ‘service of last resort’). So treatment and support is also failing, IAPT is a joke but it produces nice metrics for conferences! Professional response has been (apart from some honourable exceptions) poor & leaving us to fend for ourselves to get care or benefits. All underlined by inequality of- ethnicity, income, power, gender, class etc

To give us time to collate and arrange into a submission all comments etc will be collected by 10th September.

So please, have at it, tell the UN what you want them to know about Mental Health in the context of Extreme Poverty and Human Rights in the UK! Email your wondrous words (preferably not more than a few hundred) to recoveryinthebin@gmail.com marking them with the subject line UN Alston