Elaines story #spartacusreport #spartacusstories

 "I don't think I said what the significance of the water in the bucket from the leaking roof was, there wasn't a damp patch around it so I was very lucky it just leaked that much...smiles Today I have been to anti-coagulant clinic and I am very tired. I am also about to eat the baguette pizza, I nearly burnt my hand, just stopped myself from picking up the tray fresh out of the oven bare handed. I need to remember also to take my warfarin, which I forget too often causing more clinic visits and less energy for my plan to get batter and sort my immune system out, which has suffered after the initial steroids attack on it through years of ongoing malnutrition and added stress on top of other distress and stress from the DWP, Atos and the JobCentre. I wrote this earlier to my MP, while I was waiting for hospital transport to knock any minute. They were an hour early today. So an extra hour in hospital I would have loved to spend waiting for them instead! 

I won my tribunal in March of last year after wrongly being declared fit for work in June 2009. I did mean to inform you at the time but life gets complicated at times. It took me a while to stop having flashbacks of all the trauma of the assessment process every day and every night as other serious concerns overshadowed it. When the ESA50 came through in October I got CAB to fill it in. They came to visit on the 4th November, the day after my heating system was condemned until made good and on the 5th I was in hospital due to living in fumes of an unserviced boiler and no funds to fix or service it. I was treated for suspected pulmonary embolism and now attend the anti-coagulant clinic usually twice a week. I have no heating apart from an electric heater until Nest install a new heating system, which was okayed in September. The ESA50 was due in on 15th November but I have heard nothing back yet. I have learnt to live with the uncertainty of my having funds to live on as well as grave difficulty in surviving ill health and unsuitable housing that as a home owner I am unable to get fixed by the council or do myself. I am fully expecting to be declared fit for work again even though I am in a far more untenable position to. 

I have been informed that if the time limiting goes through I will no longer be entitled to ESA from April. I felt it makes the assessment process rather arbitrary and simply a further attack on my well being. I think you voted in favour of these reforms didn't you? How I will live then I have no idea. I already pay over half my mortgage interest due to the cuts to interest payments, £100 interest, £40.90 policy, both monthly, less than £20 a week from DWP*. I live in an uncertain future where it seems the government has absolutely no care if I live and would prefer if I died, as I am worth less than nothing due to being ill and unable to work. I am also held back from recovery with added stress and restrictive poverty. 

That as my in brief individual story is not unusual, it is widespread in the devastation that the reforms are putting people through who are already stretched to their limits by their health.

I am writing to you now to bring this report to your attention and update you as to how this is personally affecting me. This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response, http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf

MOV01850[1].MP4 Monday 9th January 2012"

* Monday 16th January 2012
My mortgage company rang me today about an extra £1 and a debt of 26p or something. They rang as I got back from this weeks clinic, I got confused. But, I did ask them how much the DWP pays and it is £79.76 every 4 weeks. I get £188.50 every 2 weeks ESA and £78.20 every 4 weeks DLA lowest care component. CAB talked about reapplying as I obviously (to them) should be on a higher rate. Seeing as my mobility is more impaired more often than it was when I got the full rate mobility I tend to agree but I couldn't deal with that and the tribunal at the same time. Renewal should be pretty soon.


(pause to get calculator)
If I add them up, the mortgage payments ~ £19.94 a week , ESA £94.25 a week & DLA £19.55 a week  = £133.74 a week.
Mortgage (before the extra £1, including what they pay, I nearly forgot that) £52.54
Electric and gas £145 per calendar month £33.46 a week


So far I have £47.74 left...


Water £7.79 a week...

£39.95 left for frivolities like phone, food, transport...


You may guess it already isn't enough to live comfortably, if/when it is cut further....


I said I no longer have as many flashbacks but it is still on my mind far too often. The other night I put my socks on in bed, it wasn't as hard an activity as it can be but harder than most healthy people would find it, there are times it takes me an hour to put my socks on and regain composure, not always through difficulty breathing, not always through abject pain, sometimes due to sheer fatigue, sometimes a mixture of all those things. I consider what they ignore as barriers for fitness for work every time an activity is harder or easier. It is a psychological warfare on conscientious people, intended as so or not.


I would prefer the dignity of being able to wash and dress myself often enough so that I don't smell so often, be able to keep my house clean and maintained, be able to make use of my talents to sell my art and crafts, eat regularly, go for a walk, not need a wheelchair and hospital transport for clinic or the clinic itself. That is the way life is, I value the help I do get for all its inadequacies and I value my life. I value the lives of others in better or worse situations. 


I said back in 2008 that we could do this and create more taxpayers, strengthen the economy for all. I felt the Jobcentre needs to be shown trade description laws, the only support from my Employment Support Allowance is the actual £94.25 a week. There could be a drive for training and implementing more practical and emotional care and support within the system. If I were actually supported I may not still be as ill as I am now, I may not have been subjected to fumes for so long. 


Tuesday. Just been reading the pips descriptors, there are many times I can't walk 50 metres without it being life threatening and times when I can. There are many times that making a simple meal is too much for me to do, even reheating a meal can be a challenge but I have never qualified for help for cooking and it seems I wouldn't qualify for mobility on pips either. The longest I was unable to bathe myself for in the last 2 months was about 11 days, that was quite uncomfortable, I really stank. The good news is I can bathe again at the moment without it being a danger to my life, just to my energy levels. Sometimes I despair of the whole thing.


*Edit!* 
After posting this I went to my email to send the link if I can concentrate long enough on a practical thing, writing is often easier...I had a reply from my MP and as you may see by my reply although he is keeping an eye on what is happening there was much of the rhetoric being churned out by those putting these 'reforms' through.


Dear

Thank you for your reply.
If you would like a real picture of how DLA works maybe speak to your constituents who claim it? I first claimed it in 2004 and was turned down after a very distressing medical in my own home where the doctor appeared to look at me and my messy surroundings with contempt and didn't understand the peak flow chart I presented him with. The decision was that I could walk unlimited with normal gait and with no danger. I didn't appeal, the whole process had been demoralising and upsetting. However, a few weeks later an ambulance was called and I was admitted to hospital after trying to get back to my sofa after visiting the toilet. The anger got to me and I wrote a letter saying how wrong the decision was from my hospital bed. It was decided it would go to tribunal. I was awarded higher rate mobility for 2 years from the date I applied, nothing for help for preparing food which I still regularly have difficulty for days or weeks at a time. I reapplied and got a further year award for higher rate mobility. When it came time for renewal I was too overwhelmed to go through the forms and the process again. My family had broken down by that point and I struggled to find hope or self worth.

Everyone I know who has claimed it has at some point gone through the tribunal process, I do not know anyone who has been given a lifetime award. If the assessments are anything like the ESA ones they will still be not going to the right people. When friends who had realised I qualified encouraged me to apply, they warned me I would be turned down and would have to appeal, that it is common knowledge, that is how it goes, as a matter of fact. I know people who have progressively got worse and have DLA cut. I've experienced it myself. The system needs improving not making even more difficult to get help through. I don't know if you realise how distressing it is to have to admit to oneself how little one can do and how debilitated one is. To write out all these details time and time again and have them dismissed. I apologise if I am irritating, it can be uncomfortable to read the words of a distressed person.

I applied again in 2008. I was turned down again I was overwhelmed and upset. I was struggling to come to terms with the way life was so curtailed. I was close to suicide and was having increased episodes of severe panic attacks. I wrote a poem about it and an angry letter to DLA which was taken as appeal and without it going to tribunal I was awarded the lowest rate of the care component for needing someone with me when I go to new places. It was ignored that I had malnutrition and mobility difficulties. I was too tired and too defeated to challenge it.

Forgive me if I don't trust the DWP, Atos or the government to implement a fair a decent working system, it is a system that needs to be improved not cut. There is not a good social care system, it is getting worse and as the man who assessed me in 2010 said I fall through the cracks as they have widened as my conditions got worse. He was concerned about my malnutrition but powerless to provide a support worker, which may have actually helped me sort my heating out so I hadn't been living in fumes for well over a year. I certainly don't trust the minister against disabled Maria Miller. The report may have had less people in it but it is still valid. Who knows maybe both reports are somewhat biased and the truth is somewhere between them but what is clear is that the report from DWP does not speak for disabled people nor does Maria Miller and others who vilify and add to the media assault against disabled, which makes us feel under constant threat. It is honestly worse than the PTSD after rape and more perverse in its infiltration into the feeling of none safety. I am working on this to attempt to stay stable and striving to recover so I may one day be able to earn my own living. Also that I may be able to do something about my living conditions. I have things going mouldy underneath my bed and rain coming in through my roof. I don't know if there is anything you can do to help my cause there?

The term, 'those who need it most' would that be only people who can't survive without someone doing everything for them but those who can barely exist don't count? That is how I feel and many more I know who are struggling daily to stay fed, warm and alive.

I don't know if you are aware but *x* stayed with us when she came back from *x*. I know you helped her and *x* who worked for you then with some of the difficulties they faced. I know they spoke very highly of you, which gave me the confidence to reach out to you. I am sure you appreciate that it is a very difficult thing to do, especially after being knocked back so many times.

Kind regards
Elaine.