#spartacusstories – My Story – Cared for and Carer


For the past 5 years I have been claiming DLA. In 2007 after years of suffering, I was finally diagnosed with chronic fatigue syndrome. I get tired easily and have to sleep for at least 2 hours a day, suffer with chronic pain in my hips and lower back, irritable bowel syndrome, chemical sensitivities and depression and I have to constantly monitor my activity levels so that i can deal with day to day life. Sometimes I walk with a stick to reduce the pain in my back and hips and I rely heavily on my adapted car, hired on the Motability scheme, to enable me to work, shop, access my community and to meet my obligations with regards to getting me children too and from school. I’m very worried that I may loose my DLA. If this happens then I will loose my car, my entitlement to disabled persons tax credit and my ability to pay for my own prescriptions. I will no longer be able to afford pay for and maintain equipment and will have to make do with adaptations provided by social services. In short I will no longer be able to manage my condition and the quality of life of my children will be much reduced.

I’ve already suffered from people making assumptions about my conditions. Whilst on incapacity benefit I voluntarily referred myself to Pathways to work. I wanted to work but the nearest offices were miles away and I refused to drive a 20 mile round trip just to read newspapers and to go on computers which I had access to at work. I was referred to the nurse who told me I was being “obstructive” because I wasn’t prepared to do this and because I wasn’t prepared to go to the CFS unit at Seacroft Hospital. The reason I didn’t want to go was because I had been discharged from there as they had said there was nothing more they could do for me! The nurse seemed to think they were now offering some sort of new miracle cure for CFS – my GP refused to refer me when I told her because she knew there was nothing at all that could be done. Now imagine this person had control over my benefits – what a waste of time and resources for a clinic which is already bursting at the seams! Needless to say I put in a complaint and refused to have any more to do with them. I chucked away the CV they had written for me (it was appalling) and managed to get a job myself.

I work as a support worker for 3 ladies who have learning difficulties so i’ve seen how the cuts are going to bite already. Even though they really need more care social services do not have the budget to pay for it and in some cases we are being told that the district nurses should be providing care for our clients because they have a medical need. This is of course ludicrous and again is putting pressure onto the already struggling NHS. My experience here also shows that there needs to be more categories for care – not less as is proposed. I’ve noticed that there are less and less short “sits” which provide a short break for carers so they can go to the shops or attend fitness classes and care managers are saying more and more of the people we support should be left alone. In the words of my manager “someone will die” The system is already cracking and reading about PIPs I increasingly feel that it will only get worse. At the moment if I need something I order it using my DLA. Under PIP I would only get funding for this if someone else decided I need it. Now in the case of my wheelchair I only qualify for a manual chair – even though I can’t push it. I use my DLA to buy second hand scooters which I run into the ground but if I don’t get the money I won’t be able to afford to do this – even though the loss of my car might make it a critical problem.

Surely if there is extra strain on social services it will delay people receiving the support they needs and more people will end up in expensive privately run care homes? Who will benefit from this? Yup, once again it’ll be the bankers and private investment firms. I’ve seen the profits from the Trust I work for and we struggle – there is no way you can run on those margins and make a profit whilst also providing the best levels of care. Remember Winterbourne View and Southern Cross anyone?

We are very lucky. we rent our house from a friend and we will be here for a few years yet all being well paying very little in rent. If we lost this house though we would really struggle. The houses we could afford are miles out of town up the top of a steep hill. I would be housebound if we had to move up there. The council house waiting list in Leeds has more than doubled in recent years so we have very little chance of getting one. My other worry is that come April i could loose my DLA and as my tax credits will be hit by cuts there I will no longer be able to afford to work but of course we won’t qualify for any extra benefits because I will have ‘voluntarily’ left my job! I can’t afford £150 a month in car insurance so I’ll be reliant on other people to take my daughters to school. Me and my husband are both disabled parents who work and DLA pays a huge part in enabling us to ado that. Take it away and we will become reliant on the state.


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