Welcome to my home, a council bedsit. Before we commence the pity party I should point out that it’s in a beautiful, quiet tree-lined street in one of London’s more swanky neighbourhoods. Not too bad a place for a middle-aged mental patient to end up. You can take a mooch around my room by scrolling to the photo gallery below.
Parliament’s Work & Pensions Committee is undertaking an inquiry into assessments for two key benefits for disabled people: Personal Independence Payment (PIP) and Employment & Support Allowance (ESA). Though the submission deadline is now passed, you can read submissions made via the web forum as well as longer written submissions.
This was my written submission regarding a PIP assessment. I think it’s definitely worthwhile reading (especially if you’re not familiar with benefit assessments), but this isn’t the most thrilling blog post I have yet produced. You could try the Psychotic & proud page (though that’s a long read) or Creative accounting which goes some way to explaining my obsession with those bastards at the Victoria & Albert Museum (V&A).
My benefit claims are centred around the fact that due to a variety of psychotic symptoms I spend 90% of my time in my room. My written submission is further down the page, but first here is a gallery of photos.
In my room gallery
The council bedsit of a poor old schizo. Note that the iron and ironing board are even more decorative than the art posters, I haven’t used them in years. I know I look bookish, but this a collection of snot-covered paperbacks I bought from charity shops on the Kings Road during the three years I was living in local authority temporary accommodation in Chelsea.
My submission to Parliament’s Work & Pensions Committee regarding PIP assessments
I have Schizoaffective Disorder and Obsessive Compulsive Disorder. I have chronic treatment-resistant psychosis that includes visual hallucinations, thought broadcast (the belief that people are listening to my thoughts) and thought insertion (the belief that people are trying to insert thoughts into my head). I have a severe lack of motivation identified as a negative symptom of schizophrenia. I talk aloud – including while in public – often not fully comprehending that I’m doing so. My consultant psychiatrist has told me that I’m one of the most seriously ill people being treated by the community mental health team (CMHT). I frequently lose two-thirds of the week or more to being psychotic.
Please note that it took me a number of weeks to write this submission and I produced it between episodes of severe psychosis. I have to stress this as, like any number of people who are on benefits, I face having benefits removed if it appears I’m not in a persistent vegetative state. Even though I can use a computer I still have very high support needs, in much the same way a former electrician with psychosis could still be eligible for PIP/ESA if they can change a lightbulb.
- My assessor for PIP from Atos Healthcare was a nurse who appeared to have little or no knowledge of Obsessive Compulsive Disorder (OCD). It beggars belief that someone could be assessing peoples mental health support needs when they are not familiar with the basic details of one of the most common mental illnesses.
- My assessor’s report included distortions and inaccuracies about my illness. It failed to accurately report what medication I take along with side-effects. These weren’t just a clerical errors, they show a failure to investigate why I need PIP, how my illness impacts on my life, the support I need etc.
- The process of applying and attending the assessment made me very ill. Despite claiming to undertake a mental state examination the assessor failed to spot that I was deeply psychotic while sitting right in front of her.
- The whole PIP application process is designed to deny you benefits rather than to try to establish what support you need to live independently and cover the extra cost of disability.
- Mandatory reconsiderations have been introduced as a further hurdle to receiving PIP rather than a genuine attempt to reexamine your claim. The lengthy appeals process will put people off appealing.
- Assessments for benefits should be based on expert knowledge by an applicant’s GP and specialists involved in their treatment and care – not reports by private contractors.
- The mandatory reconsideration stage should be scrapped and the appeals process simplified and shortened.
- With reform Personal Independence Payment (PIP) could be a means of promoting independence for individuals with disabilities/serious illness and should be recognised as a potentially effective means of reducing health and social care costs – ie. for people with serious mental health conditions reducing hospital admissions, the time needed with specialist staff.
- An investigation should be launched into Atos Healthcare’s use of the term “mental state examination”. They appear to be fraudulently using a medical term to describe an informal process of gathering information.
- I was assessed by Atos Healthcare for the change from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) on 26 January 2017. I am aware that Atos have subsequently changed their name to Independent Assessment Services, but I’m continuing to call them Atos on the basis that absolutely everybody else does.
- I was accompanied by taxi to Atos’s assessment centre in Vauxhall by a support worker from the South Kensington & Chelsea Community Mental health Team (CMHT). I needed someone to go with me as I was in a very bad state mentally. I frequently am, it’s my default setting, but the stress of the PIP assessment made me very ill.
- Despite being psychotic I registered a number of things. The waiting area had around a dozen extremely nervous-looking people in it. A few had clearly been crying.
- The building had extra wide doorways to accommodate people in wheelchairs. You could be thinking that it was good that they were at least making an effort until a woman was wheeled in with what was more of a bed than a wheelchair. She wasn’t wearing an oxygen mask, but her bed on wheels had an oxygen cylinder attached. I think everyone there thought the same thing. This woman clearly had very profound needs, why wasn’t her application approved simply on evidence from her doctors or why wasn’t she given a home visit? It must have cost some part of the NHS or social care system a small fortune to get her there that day.
- I was called into an assessment room by a woman who introduced herself as a nurse. She started asking me questions that had been on the application form. I was quickly overwhelmed and wasn’t able to cope with questions being fired at me. At one point I started to read the answers from my application – this was cited in my award letter as evidence that I don’t have any communication problems. The support worker from my CMHT intervened to point out that I needed time and also that I regularly don’t make eye contact. Up to this point, the nurse appeared to believe that I wasn’t making eye contact out of rudeness.
- More than ten minutes of the thirty-minute assessment was taken up with discussing that I had been in hospital over Christmas 2016 with a kidney injury. This had no relevance to my PIP application other than the injury may have been caused by the antipsychotic clozapine. Thinking about it later I got the impression that the nurse was happier talking about physical health and she was pleased with herself because she could pronounce “bilateral hydronephrosis”.
- We reached a point where we were discussing my personal care and I pointed out that I hadn’t taken a shower in months (it was a bad patch, things are a bit better now). The nurse reacted strongly to this and said, “So how does your OCD affect you then”? She gave me a look as if to suggest I had been caught out lying, claiming to have OCD while making statements to the contrary. The CMHT’s support worker and I exchanged glances, both thinking that this nurse didn’t know very much about OCD. As you may well know, to have OCD you don’t have to be washing your hands a thousand times a day and cleaning lampshades with a wet wipe. My OCD takes the form of a ritual where I have to hold my fingertips together at many points throughout the day in the belief that this will prevent a nuclear war. These type of rituals and compulsive thoughts are fairly standard with OCD. You can discover this through a simple google search. It beggars belief that someone could be assessing a person’s mental needs under PIP when they are not familiar with even the most basic details of one of the most common mental illnesses.
- Following the assessment, I obtained a copy of the assessor’s report. There are a long list of inaccuracies. There are some things I can’t see how she misunderstood and I concluded that she just made things up. For instance, I said at that time I was only able to go to a local cafe with the help of a support worker. The report said I went to a local cafe alone and cited this as a reason for me not requiring a higher level of support.
- The worse inaccuracies are regarding my medication. The assessor’s report said I had no side-effects. Putting aside that we had just had a ten-minute discussion about how clozapine may have caused the kidney injury and put me in hospital for a week, I put on six stone while on antipsychotic and this almost certainly explains why I developed type 2 diabetes in my forties (since stopping antipsychotics I have lost a lot of weight). Even worse, the report doesn’t mention the chronic exhaustion I experience as a result of taking sodium valproate. It’s the bane of my life. Apart from the psychotic symptoms I experience it’s why it’s why I’m kept isolated in my flat so much of the time. These things are mentioned in my application and my social worker’s report but seem to have been cheerfully ignored.
- The listing of my medication on the assessor’s report was completely wrong. It didn’t mention sodium valproate. Regarding antipsychotics, it didn’t mention that they don’t work for me and my consultant psychiatrist has concluded I have treatment-resistant psychosis. It mentioned that I am on an anti-depressant, but not that it may or may not be having an effect and that I’ve been on several which did nothing but produce side-effects. It’s important to stress that these are not just simple clerical errors, it illustrates a cavalier attitude to assessing someone’s health condition and the needs this may create. Would this be tolerated more widely in the NHS? How long would such a hapless nurse last on a hospital ward?
- Before I received the assessor’s report I had received my PIP award letter from the Department of Work and Pensions (DWP). It mentioned a “mental state examination”. I initially assumed this referred to a mental state examination detailed in a letter from a psychiatrist within the CMHT and handed to the assessor. When I received the assessor’s report it was clear that Atos claim to be carrying out mental state examinations. I’ve been treated by mental health services since 1991, more regularly since 2002 and intensely since 2007. I’ve had many mental state examinations. During this Atos one none of the usual questions were asked. In terms of examining me, the nurse just occasionally glanced away from her computer screen. Had she undertaken a genuine mental state examination she would have found out that while sitting in front of her I was experiencing visual hallucinations, thought insertion (the belief that people are trying to insert thoughts into your head) and was deeply suicidal. The CMHT support worker was concerned enough to speak to my community psychiatric nurse (CPN) and my CPN was concerned enough to organise an emergency appointment with my consultant. Everyone involved could see I was in a disturbed state (and that includes the receptionist at the mental health centre and the taxi drivers who took me to and from the Atos building). The only person who didn’t notice my disturbed state was the Atos assessor who seemed to think I was fine apart from not making eye contact. Online I have read a great many scornful comments by service users and mental health professionals about Atos’s use of the term mental state examination.
- I had an emergency appointment with my consultant the day of my PIP assessment. She noted that I’m one of the more seriously ill people being treated by the CMHT and that in the ten years I had been seeing her, which coincides with the time I had been receiving DLA, my mental health had deteriorated considerably. We had a discussion as to whether I should consider giving up my council flat and moving into supported accommodation. People normally hope to move the other way.
- Quite a few weeks passed without me hearing from the DWP following my assessment. Eventually, a welfare rights advisor who is part of the CMHT phoned the DWP on my behalf and found that I had been granted PIP standard rate for daily living needs and nothing for mobility (I had previously been getting DLA middle rate care and lower rate mobility). The welfare advisor explained that it was more difficult to get the mobility element under PIP. He was pretty bullish about my chances of success if I appealed the care decision. I had eleven out of the twelve points needed for enhanced rate.
- Maybe I have a strange sense of humour but I occasionally look at my PIP award letter to make myself laugh. It’s comedy gold. At the time I’m writing this I’m going out of my flat about twice a week. One afternoon I ‘ll try to do a week’s shopping at a supermarket and visit an art gallery (art galleries are my hobby). Maybe another afternoon I’ll go to local shops. I was better during the Summer and but seemed to have slipped back again. I’m not even seeing my CPN much at the moment as he is overwhelmed. Back when I had my PIP assessment I was going out very little and needed to get taxis everywhere. Other than trips to the mental health centre I only occasionally strayed more than a mile or so from where I live. I hadn’t left London in more than five years. I want to point out that I have only been abroad once (a day trip to Bologne when I was eighteen) and have never been on an airplane, I’m saying all this because if you read my PIP award letter you’d think I was an international playboy and jet-setter. There was a strenuous and determined effort to deny me the mobility component. There was also the suggestion that because I was going to the mental health centre a lot – several times a week at that point – I couldn’t really be that ill. It’s a bit like arguing that if someone is going through a particularly grueling regime of chemotherapy they don’t really have cancer.
- In discussion with the CMHT, I decided to put in a mandatory reconsideration. My consultant sent a letter stressing the seriousness of my illness. The mandatory consideration rejection letter from the DWP said that the award of PIP didn’t depend on your illness, but your ability to do specific tasks. Why then does my initial award letter state, “I made my decision using information about your health condition or disability including details of any treatment, medication, test results and symptoms”? Why is Atos attempting to record peoples medication? Why the phony mental state examinations? In any case, as my consultant pointed out, these examinations are snapshots and not intended to establish long-term care needs.
- The rejection letter again focused on my life as an international playboy but also introduced the idea that I’m a global financier. I had been asked during the Atos assessment whether I had a bank account. I replied that I have two accounts. Back in 2006, I was so broke I was reduced to counting out coins and taking them to the bank (this was back when you had to use plastic money bags before banks had coin counting machines). I was too ill to make it to my own bank branch so went to the nearest bank. They didn’t want to change the money but said I could open an account with them. I was bemoaning this to a friend who helps me out with money and other matters. He said having two bank accounts was a good thing. He reminded me that when I became ill in 2002 my account was shut down and for a number of years I didn’t have an account with any bank. So I opened an account. The fact that I have two accounts was used against me to say I don’t need help managing money and overall I’m not that ill. I do need help and am very ill but am being punished because I have friends who are financially literate.
- The rejection letter also focused on the fact that I occasionally walked to the mental health centre, my GP’s etc. It seems ludicrous now but during the Atos assessment, I mentioned trying to walk places as an example of my trying to help myself and not just giving in to my illness. Between around March 2017 and September 2017, I was going out more but have now slipped back to not walking out and about much. Problem is since I now have less money under PIP than DLA I can’t afford taxis.
- I decided not to go to appeal. I was simply too ill at the time. I’m not much better now. Had I appealed I would have had to wait somewhere between three months and one year, possibly longer. I manage to get by through not thinking about my ESA claim and pushing it to the back of my mind. I live in terror of being found fit for work-related activity let alone being found fit for work. I’d be sanctioned at the end of the first week. Although I was appealing for PIP I would have inevitably ended-up thinking about my ESA claim. This would trigger stress, a worsening of my psychotic and mood symptoms and an increase in my suicidal thinking. The mandatory consideration process has clearly been devised to deter people from appealing. It’s intended to make people give in.
- We frequently hear about postcode lotteries for a variety of services. PIP and ESA are state-funded lucky dips. It appears that you are awarded benefits depending on the individual prejudices of the assessors (who the DWP invariably backup), who make decisions on a whim or whether they enjoyed their lunch that day. I think this explains the truly bizarre decisions that are reached by the DWP in making benefit awards now.
- In theory, I should have no anxiety about my benefit claims. I have very high support needs due to severe chronic psychosis and mood symptoms. On paper, it looks like I should be getting the PIP enhanced rate daily living component and at least the standard mobility rate while remaining in the ESA support group. I’m a textbook care-in-the-community client. It has been decades since this idea came to prominence. PIP and ESA should be enabling independent living and should rightly be seen as a vehicle for keeping health and social care costs down ie. keeping me chugging along in the community is a lot less expensive than the cost of potential repeated hospital admissions.
- Without PIP – without the funds to pay a number of people who help me live independently – the cost of my care would rise steeply. For all its imperfections, I am incredibly grateful to receive financial help to support me while I’m unable to work and to help me live independently. The problem is as the system is now operating it at times makes my illness worse.
Featured image: A photo of my room, taken with my iPhone, November 2017.