The Benefits Trap
My name is Charlotte, I'm 34 and I live in Carmarthenshire, West Wales. I was a Primary School Teacher before disability made it impossible for me to work, and I would love to be able to go back to teaching one day. I have Fibromyalgia, a spinal injury, osteo-arthritis, severe anxiety and PTSD as well as some other health complaints, which have made life extremely difficult for both me and my family.
I had to leave work in March 2017. I absolutely loved my job – teaching was what I was born to do and I went back to University as a mature student to achieve my goals, which I did despite my disabilities. However, towards the end of 2016, my conditions worsened and I had to go on long term sick leave. This has had a devastating effect on my mental health, as I have gone from being an award winning career woman, to living in one room of my house and spending most of my time alone.
I have now left work permanently, which has thrown me into a very poor financial situation. I have debt, no savings, and although my husband works full time, his wages aren't enough to cover our outgoings. I applied for Employment Support Allowance, which was turned down because I have a husband that works full time. It was the same story for Working Tax Credits – my husband earns very slightly over the threshold, when in reality, his wages are just over £300 a week. This doesn't cover rent, bills, debts, fuel, utilities, food, clothes and other necessities. Housing Benefit have offered us £1 a week off our rent, which is laughable. We are right in the middle of the “Benefit Trap”, where we are not entitled to anything more than a pound a week because one of us works full time.
My husband was advised to either stop working entirely, or work less than 16 hours a week. The government seem to be actively encouraging people to work less, in order to receive more money! It just doesn't make sense. He doesn't want to give up his job because he loves it there, and it is a form of respite as when he is at home, he is a full time carer and parent. He does everything in the house including laundry, cooking, shopping, cleaning, pet care and looking after our son. He also looks after me. He washes me, dresses me and feeds me, even sacrificing his own lunch breaks to bring me food, at the detriment of his health. He has lost a large amount of weight, is now severely underweight and has had to seek medical attention himself because he has no time to eat.
Occupational Health have offered to raise our toilet and convert our bathroom to a wet room which is much appreciated. I'll be able to shower more independently. They cannot help with anything else, such as personal care or food. They have provided me with a self-propelled wheelchair, which I cannot propel due to pain in my arms and neck. Even if I could use the chair, it does not fit through the doors in my house and I have stairs leading to downstairs and outside. I cannot access my living room, kitchen or garden at all. I need an electric wheelchair but the NHS cannot provide this to me due to funding cuts and I was told to buy my own, which obviously I am not in a position to do. Therefore, I am facing remaining in my bedroom alone on a long term basis.
I have recently applied for Personal Independence Payments. This process has been harrowing. On application, I felt positive. I knew that as a chronically ill, mentally ill and physically disabled person, I was entitled to maximum PIP benefits. I undertook a mock assessment with the Citizens Advice Bureau and scored 74 points, entitling me to higher benefits for both mobility and independence. When it came to my real assessment, I had to cancel the first one, due to severe panic attacks. The second assessment went ahead in my home and I spent most of it shaking, sobbing and telling my husband that I was sure I was going to die. I physically could not move from my bed as I was in too much pain and the assessor was reassuring, discouraged me from moving and told me that as I was clearly severely distressed, he could come back at another time, which we declined as I just wanted it over.
When I received my PIP report, I was floored. We all were. I had scored 0 points for the first section and 4 points for the second, denying me any benefits at all. The report itself was paragraph after paragraph of blatant lies. The assessor had said that because he didn't see me move during the assessment, he deemed me able to walk, get into the bath, go downstairs and complete all aspects of self-care, despite the fact that he told me not to move because I was visibly in too much pain. He had ignored medical reports, letters from the mental health team and the fact that I was being given a wet room and a wheelchair by Occupational Therapy. He deemed me fit to work. He had sat in my bedroom, witnessing me screaming and crying in terror and then wrote that I was “calm and relaxed throughout the assessment”. It was absolutely shocking and the stress and anger caused me to have a flare up of my illness.
I had to put together a Mandatory Reconsideration, which addressed every untruth in the report that were so extensive that I wrote 22 pages, not including supporting evidence from my GP and mental health team. I have just been informed that this has also been declined. I have to now appeal again and take the case to a tribunal, meaning that I must attend court to fight for what I am entitled to. This will be extremely difficult for me, not just physically but mentally – it was hard enough having the initial assessment in my home. I haven't left my house for months and I do not know how I will be able to go to court. Meanwhile, we are spiralling further into debt. With just my husband's wages coming in, we are having to start looking into food banks and may face homelessness.
I find it very hard to accept my illness, as I do not want to be stuck in bed, living a lonely life of pain and boredom. I find it even harder to accept that the government is now making it as hard as possible for me to just exist. Surely this isn't how we should be treating our sick people?
Tell me about your experience of benefits as a disabled person.