Diary of a DLA Reform Activist

I knew immediately that I had to respond. I have received DLA due to mental health problems for the past four years, although it has been stopped several times during that time due to lengthy hospital admissions. My diagnosis has evolved over time: initially, I was thought to have Major Depressive Disorder; later, when I started to have hypomanic episodes, I was diagnosed with Bipolar Affective Disorder; and, more recently, when my psychotic symptoms became more prominent, my psychiatrist revised his assessment and told me that it seems that I have schizoaffective disorder.

All of this has had a huge impact on my life. When I first became unwell, I was in my final year at medical school. I was sectioned before my finals, but managed – somehow – to pass them from hospital, graduating in absentia in July 2007. Sadly, I have never worked as a doctor. I spent over 18 months in total in psychiatric wards and, even though I have been living in the community for most of the past two years, my application for a licence to practise was rejected by the General Medical Council. They consider my illness too unpredictable and told me that they felt I would be a danger to patients.

As well as losing my career, I have struggled to maintain friendships, as people have found it difficult to cope with the ups and downs of my illness. I have also faced stigma and prejudice, not least because my illness is not entirely invisible to others: I have severe scarring from a period during which I self-harmed, and at times my behaviour is strange, for example, I have sent people bizarre emails whilst paranoid and psychotic. Most have recognised that I have been unwell; others have reacted with hostility. In terms of the personal cost, I live with debilitating episodes of depression, exhausting episodes of hypomania, and terrifying episodes of psychosis. I have periods of wellness in between times, such as at present, but even then the fear that illness could strike at any moment holds me back from committing to new things or embarking on new relationships.
DLA cannot compensate me for the difficulties which I face, but it does help to allay some of the additional costs which I incur because of my illness and, in so doing, I believe very firmly that it keeps me out of hospital and reduces costs to the NHS.

I use my DLA for a number of different purposes. First of all, it supplements my housing benefit to allow me to afford a single occupancy flat in my home town, Belfast. Stigma has been a problem for me in finding people willing to share with me, and I would also find it stressful to live with others because of my fluctuating mental state. Secondly, my DLA covers the cost of communication. When I am hypomanic and agitated, I spend a lot of time talking on the phone to family and friends. My speech is pressured and they find it hard to get me to finish a conversation. At other times, I am paranoid and need constant reassurance that the delusions I am experiencing are not real. I do have free minutes on my mobile contract and free calls at evenings and weekends on my landline, but I cannot choose when to call someone – often I need the support during the day. In consequence, my telephone bills can be staggering. I also pay for internet access so that I can stay in touch with friends when I am too afraid to go out, and so that I can shop for groceries online when going into a supermarket would be too over-stimulating and lead to a public breakdown.

DLA also covers the cost of transport by taxi. I find using public transport stressful at the best of times, but when I become psychotic, two of my most prominent symptoms are thought broadcast – believing that other people can read my mind – and persecutory delusions – believing that other people are laughing at me and making judgements about me. When I am in this state, getting on a bus filled with people who all seem to stare is terrifying and ultimately impossible. Because of this, I need to pay for taxis to get me to appointments, to shops and to activities which I participate in.

For me, participating in activities – when I am well enough – is crucial to my wellbeing, helping me to remain part of society and giving me a sense of belonging and value. For example, each term I use my DLA to pay for a course which will allow me to meet other people in a non-threatening environment, stimulating my mind and helping me to feel fulfilled. At present, I am doing an evening course in Clinical Education which I hope will be a route back to the workplace for me when I am ready.
I also use my DLA to pay for other things which I personally consider essential to maintaining optimal mental health. For example, I frequently download calming music which helps me to deal with stress, and which I often listen to when I need to drown out strange and depressing thoughts. It also boosts my mood to meet with a friend for a coffee when I feel up to it, or even to go to the cinema. Having DLA means that I can afford to do this without feeling anxious about being able to pay for essential items as well.

Heating is also a considerable outlay for me because I spend a lot of time in my flat when I am unwell. Having DLA means that the extra costs are covered, so I don’t need to worry about being cold and getting sick.

For me, DLA does not pay for luxuries; rather, it allows me to enjoy basic human rights – the right to belong to a community, to have a sense of purpose, to maximise my mental health, to contribute to society, and to live in a safe and secure environment. Even before I received the email from Rethink, I had read the government’s consultation document, and it concerned me greatly. Why? Because I felt that the proposed changes to DLA – or the ‘Personal Independence Payment’, as it is to be renamed – will deprive people like me, who suffer from mental illness, of these basic rights. To have the privilege of speaking up on behalf of all those in my position, with the backing of Rethink, seemed an opportunity not to be missed.

One of the key messages of the DLA Reform proposal is that the ‘PIP’ will be focused on those with the ‘greatest needs’. I fear that I will not be considered to fall into that category; however, I believe that, should my DLA be taken away from me, it is highly likely that my needs would increase. Without connection to my community and the ability to pay my telephone bills, for example, and with the added anxiety that financial stress would bring, I have no doubt that my mental health would deteriorate. My needs for state intervention in terms of health and social care would consequently increase, at greater cost to the state.

Another issue which concerns me is the proposal to introduce ‘objective’ assessment of these needs. Personally, I challenge anyone to objectively measure anyone’s mental state. The simple fact that I have had so many different diagnoses – each made by a consultant psychiatrist – demonstrates how subject such an assessment can be. It worries me that I may be assessed by a generic health professional who will lack the skill to perceive the extent of the disablement which my mental health difficulties create. Add to this the fact that there is huge variability in my condition – on a given day I may be depressed, hypomanic, psychotic, or relatively well – and I find it hard to see how a face-to-face meeting at one point in time can accurately determine the level of support which is necessary to help me function as well as possible from week to week, month to month.

It seems to me that people with mental illness will be disproportionately disadvantaged by the introduction of this assessment. Not only will the impact of their disability be more difficult to measure, but the assessment itself could cause significant stress. Personally, I think that meeting an unfamiliar health professional whose role is solely to determine my eligibility for a benefit would be likely to cause my mental state to deteriorate. I feel that assessors interviewing people with mental illness would require specific skills both to elicit symptoms and to limit the impact of potential distress. I believe that they would also have to take individual circumstances into account when arranging the meeting, for example, there are times when I cannot leave my flat and would need a home interview, and other times when I am paranoid about strangers entering my own space and would prefer a neutral – but unintimidating – venue.

The proposals also indicate that people will have their reward reviewed regularly. I am concerned that this could cause those with mental illness to suffer undue stress because of repeated assessments and the anxiety associated with knowing they could lose their award. Personally, I would prefer that reviews were conducted in collaboration with my healthcare team and did not directly involve me. I am also concerned about the proposals to enforce self-reporting of changes in claimants’ conditions. My mental state changes almost every month; I want to be honest, but I can never anticipate how long a better patch is likely to last. At times, I also lack insight, for example, I once did report that I was doing very well and didn’t need my benefit; the reality was that I was hypomanic. Thankfully, my GP was able to inform the Department of this and my DLA remained in place!

Perhaps one of the most worrying things about the consultation document, as I see it, is the proposal that applicants may be denied benefits if they do not access appropriate support to improve their condition. In my experience, there are many barriers for mentally ill people to accessing support – agoraphobia, for example – and not all ‘support’ is actually helpful. I was once referred to a support group which most definitely made me worse: hearing about the other group members’ problems distressed me enormously, and I was forced to leave. There have also been times when I have been too paranoid to allow home treatment teams to enter my flat. Could this be construed as refusing to accept help? I hope not.

There is consideration given in the consultation document to the impact of the proposals on different equality groups. People with mental illness are not included. Much as I see psychiatric illness as similar to other illnesses in many ways, I do think that people like me deserve special attention here, because the impact on us could potentially be so much greater. Our disabilities are the hardest to quantify objectively, we may find the assessment process harder than most, our needs may not be as obvious, and we may be less able to cope with any concurrent physical illness.

These are just some of the points which I hope to raise at the roundtable discussion tomorrow. I am able to draw on my own experiences, but I hope that, in so doing, I will be able to represent the views of the millions of mentally ill people like me in the UK who do not have the capacity or opportunity to speak directly to their political leaders. Having considered my own response to the proposals, I read that of Rethink and the mental health coalition which they are leading. I was glad to see that I was already ‘on message’, although evidently the Rethink response was broader in scope.

Thankfully, I am not feeling intimidated by the prospect of the meeting. I have had excellent support in preparation from both Rethink and their sister organisation in Northern Ireland, MindWise, but, aside from that, I have also spent the last year undertaking a part time work placement with my own MP, Naomi Long, of the Alliance Party. Naomi has been very understanding of my mental health issues and the working arrangement has been flexible. Through working alongside Naomi and other local representatives, I have had the opportunity already to meet with various people in public office, and I have gained confidence in my ability to communicate with them. I have been involved in committees at various levels and, whilst going to the House of Commons will be a challenge, I feel as if I have the right experience to play an effective role in the discussion.

I am thankful to the Select Committee for being open to hearing from charities such as Rethink; I am thankful to Rethink for providing this opportunity for me to take part; but most of all, I am thankful that I am actually well enough to do so. Eighteen months ago I was a long-term patient in a psychiatric ward. Since then I have had a few brief admissions, but I have largely managed to remain in the community. I put this down in no insignificant part to having access to DLA. I am determined to fight to protect it.