Spartacus Stories

Here is a collection of Stories written by many different disabled people about the impact that DLA has on their lives. It also includes stories of fear about the proposed changes to personal independence payment.

Admin: benefitscroungingscum, Lucia and Lucy
to add your story email us at spartacusstories @ g mail . com (without the spaces) (your posts are there, just being scheduled throughout the day) (can you add how you want your 'name' to appear ta)

Monday, 16 January 2012

H's Story #spartacusstories #spartacusreport

Firstly, let me apologise if this isn't very well written - I have filled in so many benefit forms and written so many letters recently that I am in a permanent state of brain fog.

I'm H, I'm nearly 21, and this year marks 10 years of suffering from ME. I'm married to a wonderful man, K, 28, who has been ill with ME for approximately 6 years.

Since I left sixth form at 18, I have been dependent on benefits for income. My last year at sixth form was very difficult, I had about 33% attendance, and it drained me to the point that I was unable to work, and unable to continue studying. So in the September I applied for Incapacity Benefit (IB) and DLA. The forms for both were terrible, and I recall many hours spent with my Mum trying to fill them in, giving an account of what I was going through in my every day life. I remember trying to convince the Job Centre that no, I'd never worked - I was only 18 and had been ill since I was 11! I was granted Income Support promptly, and sent to a medical for IB. I slept in the waiting room, and the medical exhausted me. In the January, I realised that I was still only receiving Income Support - what happened to the IB I had applied for? Turned out I was too young. I should have been applying for IB in Youth, not that anyone I spoke to really knew what it was or how it worked. My Dad went to the CAB, and they gave us the guidelines we needed, and we were able to transfer all the information to my new claim, and I was granted it for 2 years. Meanwhile, my DLA had been denied, and I was simply too ill to fight with them for it. I wish I had been well enough! Oh, the irony.

In January 2009, K (then my boyfriend) had to leave uni as he was too ill to continue with his degree. His health had deteriorated to needing 23 hours in bed, and with the abolishment of IB, he had to apply for ESA. ESA had only been around for a matter of months, and there was very little help out there with filling in the forms. He went to a medical where he was forced to sit and perform exercises, and a little later he found out it had been denied. He appealed and went to tribunal, where he was refused. We had the CAB with us, but our representative didn't seem to understand ME, and potentially just made it worse. This process took at least 16 months, all the while he was on a very low income with no financial security.

This brings us to April 2010. A month before our wedding day. We had managed to find somewhere to live, thanks to Housing Benefit. We felt on the brink of independence as a couple. The CAB advised K that it would be unwise to immediately reapply for ESA, and he should go on JSA for 6 months.

He applied before our wedding, and we returned from honeymoon to hear that we would not be receiving any money as I earnt too much on my IB. My IB income is £106 a week, and that has been our entire income since. However, he wanted to make an effort, and he attended the Job Centre as requested, in a desperate hope they may have a job wtih few enough flexible hours that he may be able to earn some extra money.

By September 2010 he was using a walking stick, and the crunch point came when he collapsed in the Job Centre. He collapses most days - it's difficult but nothing unusual. The Job Centre realised he needed to be on ESA, and guess what? He reapplied.

We knew because it was income based we still wouldn't receive any money from it, but it felt important that he was on something - recognised to be ill. We spent October/November with my Mum, filling in the form. Describing his day in detail, and got the forms sent off. He enquired into having a medical at my home, as he is not well enough to attend the medical centre. He sent the required letter from our GP after getting a date for an assessment at their centre in December. The day before his medical was due, he had not heard as to whether the decision had been made for him to have a medical at home. He phoned them to be told the decision was pending, and his medical was rearranged for January. On the day before he still hadn't heard whether the decision had been made for him to have his medical at home. He phoned them to be told that the decision had been refused due to "lack of evidence", despite providing a letter from his GP. He was told they could not rearrange his medical again, and he recieved a "did not show" when he did not attend their medical assessment. We are now trying to gather more evidence with our GP; he has been re-referred to our local ME specialist; we have sent more letters to Atos; we cannot quit fighting this battle, but it is taking up all our energy to fight it.

Meanwhile, my IB came up for review in November 2010. So we spent November/December with my Mum filling in my IB forms, which were sent off over Christmas. I am waiting for a brown enevelope to come through our door giving details of my medical, leaving us to go through the fight again. How many more months of fighting do the two of us have in front of us? All the while the stress and energy it is consuming is making our health worse...

We both struggle to live our daily lives. We have our parents round every week to do housework - laundry, dishes, cleaning. We just about manage to eat every day. We barely get out the house, and we can barely make ends meet each week. Because my IB income isn't income-related, and K is only in the assessment hase of ESA, we don't qualify for cold weather payments, or anything like that. And the drop in Housing Beneift over the coming years is concerning. The VAT increase affects us greatly - it may be "only a few pennies", but we don't have a few pennies... We want to apply for DLA, we need the extra income to help us live, yet is the stress of the process going to be worth it? Do we have any hope in winning?

We feel like we are at the bottom of the heap. The government and the media are making us feel like scum. We have huge dreams - I am an artist and photographer, my husband a writer, yet we are barely able to move from the bed/sofa to pursue these passions of ours. Why should we be punished by the benefits system just for being ill? 

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

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