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Well, i received my tribunal papers a few weeks ago, and today i have sent in my remaining evidence to the Tribunals Service. I have sent a letter from my GP and also a letter from the CFS/ME specialist, who i saw a couple of weeks ago.
The tribunal itself won’t be until the new year as they have a bit of a back log at the moment, so in one way it is nice not to have to think about it and to have plenty of time to get the evidence in etc. but at the same time i would just like it to be done with, whatever the outcome. This process began last Easter-time and it is now nearly Chistmas! I should be happy to think of all the back payment i will get, but as i doubt that i fit the narrow criteria, particularly for higher rate mobility, i don’t think i will be awarded that, however difficult my mobility problems are.
So anyway, the letters i have sent are the only really supportive evidence that i have, so let’s hope that they are detailed enough… both are quite brief so i will summarise the points made below:
I am writing in support of this patient’s appeal…
Her diagnosis is clearly CFS (ME) and there has been a steady deterioration in her symptoms since i last saw her with increasing headaches, neck pain, fatigue and marked reduction in her physical exercise capacity.
She has considerable problems on standing… and has been diagnosed with Positional Orthostatic Tachycardia Syndrome… gives very marked postural symptoms. This is part of autonomic dysfunction, which underlies CFS.
She is not able to undertake activities of daily living without significant help from her partner. Her physical activity is limited to 5-10 minutes maximum. She has become more significantly depressed because of her disability.
…her disability is severe and progressive and has not shown any significant improvement with previous therapeutic input along the lines suggested by the NICE guidelines…
After the letter he wrote for the insurance company i was a bit disappointed with this one as it was less detailed and specific about what i can and can’t do, and this one for DLA seems more important to me, but it is quite strongly worded so it may be ok.
The letter from my GP is not great, but it is better than the very briefly and incorrectly filled form she initially did. I had to go back and tell her is was not good enough – a bit nerve-wracking!
So now her new letter says i cannot cook a meal for myself, cannot walk more than 150m* without discomfort/rest, that my condition is severe and that i have a certain amount of energy to work with each day so any help that i get makes a big difference in my ability to manage my energy and condition.
*this was the distance used in my rejection letter as the reason i did not qualify for higher rate mobility, but it seems the actual distance they use to judge can be 30m, 50m or who knows what next week, so her saying this may work against me, as i cannot always leave the house to walk anywhere at all…
We will see how these letters affect my appeal, i hope they are detailed/strong enough and help to avoid me having to talk for ages at the appeal about the nitty gritty of what i can and can’t do as it is very difficult to be consistent when there are no definite answers with such a condition as this, and also to concentrate and talk for any length of time, especially under stress.
I will not be having any representation either… but hopefully a benefits adviser will be coming to help me prepare for it once i get the date through, which may help me feel better about it and know what to expect.
Anyway i am trying not to think about it right now and leave it til the new year when it will actually happen… i don’t think there is anything more i can do, just need to see how it goes on the day…
After several days of feeling really awful and being mostly in bed (when not trying to take the dog out and wondering, literally, if i can make it home despite being only a few hundred yards from my house) i went today to get my hair cut! I was ready to cancel yesterday (and shave my hair off as i rarely feel up to going to get it cut) but knew i only needed to be taken there and sit through it and thought i would see how i felt today. I rested and mostly lay in bed until 2pm and then felt able to give it a go 🙂
The other thing i did was i popped into Boots, which is next door to the hairdressers and got some wrapping paper to wrap my partner’s birthday and anniversary presents in – i was beginning to get a bit stressed about it as could not see when i would be well enough to get some, had left it too late to order online (knew i forgot something!) and didn’t want to ask her to get her own! They did not have a great selection but i am happy. Still have not managed to get cards for her, but think i will have to make them if i can…
I do miss being able to go shopping, but usually it doesn’t bother me hugely unless i need clothes, but it really annoys me not to be able to choose presents for people… the internet is great and helps a lot but it is nice to see what you are buying sometimes as well!
Anyway, i didn’t feel as bad as i thought in the hairdressers (kept my eyes open and chatted quite a bit -although the music was a bit sharp) and i feel a sense of achievement. Plus my hair looks one hundred per cent better than before!
If the sun would just come out so i can sit in the backyard a bit over the weekend i will be doubly happy!
(yes i am blocking the fact that i need to write my letter requesting my DLA appeal and have had not even half the energy required to engage with that task in the last week… let’s hope i have the energy to do it this week before the deadline… shame i will have to use my better moments on that odious task…)
Well, bad news is that the benefits service who could have helped me have refused to take my case on for appeal… so if i want to carry on to appeal i have to go it alone… I am not sure what they would have done for me, but they would have come with me and helped me prepare for it, and possibly “represented” me in some way. Anyway going alone (with my partner) is a bit daunting. The reason they are not taking me on is that I do not have good medical support/evidence, and as my case stands it does not look very strong, as without medical backup they (DWP) have every reason not to believe me it seems. The service have limited resources so can’t take on someone in this situation. I have an appointment with my specialist in october so i am hoping that he will be very supportive so that i have a basis on which to continue to appeal (and to challenge what has already been said about me), but i am having real second thoughts about continuing. It is stressing me out! I know that if i don’t i will always be thinking, “what if i had carried on…” but i am left doubting how strong a case i have and my chances of success after this latest development, and it is a lot to put myself through for nothing. I suppose i will just carry on until i have seen the specialist and give up if he is not overly enthusiastic/supportive/articulate but i am so sick of all this now. I could rant on and on about it but i really can’t be bothered to waste my breath today!
My application for DLA has been turned down…
It has been so much hard work. Filling in the form took 6 weeks and felt like a lot of work, i had someone to help me and even then we only got it in the day before the deadline. The first three weeks i was completely unable to even think about it or concentrate on anything like that, and just managed to write a diary for a week as supportive evidence, then the next three weeks were spent filling it in with several short meetings with my benefits adviser who wrote it all out for me. It really exhausted me especially as we pushed to get it in in time and i was not really up to working on it. I got very down as i found it completely demoralising.
Then two weeks ago i had a medical and it was a nightmare (the same week as i had to fill in my incapacity benefit form, and with a phone call on Wednesday asking me to go on Friday i then had to push on with my IB form as i know i would be unable to finish it at the weekend, as well as reading up on what to expect at the medical). I found the medical very stressful. My partner came with me thankfully, and write notes as to what was said. We had to wait half an hour (which i believe is standard for “observational purposes”), then spend a whole hour in with the doctor.
I won’t go into ALL the details but I was feeling very weak and “past it” by the time i saw the doctor, (at 2pm, and although i did lie down before we left the house I would usually have had a nap by that time, and with the extra stress of the occasion i was not feeling good) my back was hurting, i felt very light-headed and dizzy (even sitting down) and was having trouble speaking and expressing myself clearly which led to tears of frustration as the doc was so ineffectual. The doctor could not type well (2 fingers and slow) and seemed not to be able to listen and type at the same time, which meant that he asked me the same questions over and over (and over) again, constantly getting my answers wrong and even interrupted me if i responded with anything more than a yes or no answer as it seemed he could not cope with typing sentences or deal with nuanced answers, which frankly with a fluctuating condition you are going to get when you ask questions like “how far can you walk?” “Can you do x for yourself?” etc. there are not many things i can say a definite yes or no to! I felt forced into oversimplifying my answers, as i had to on the form, which makes you feel as if you are lying, but the questions are not designed for M.E… by the end of the hour I could barely stand up and made this clear (i refused to stand to do exercises and sat instead on the bench, although he then made me stand against the wall to do a sight test (did i say i can’t see?) for a minute or two…). How that medical could not have backed up what my form said i do not know…
That took a full week to get over, during which i ached literally all over, and barely made it out of the house (very short dog “walks” when essential), had head pains and generally felt as weak and as bad as i had said on my form… actually even worse, which made me not doubt myself so much (It is easy to feel guilty when i have a better day or two and i can do things i have said that i generally cannot – forgetting how bad things are 95% of the time, and i have not even been given any money yet! It is ridiculous to feel that way when i am only trying to claim something i am supposedly entitled to…). I thought, if i could do a video diary of the impact of a one hour doctor’s assessment, maybe they would get it! I slept as much as possible. I did not feel too down, just incredibly weak and drained of all energy. I did the bare minimum in terms of dog walking, personal hygiene etc… The thought of going to Scarborough for the weekend gave me something to rest for so i knew it would be worth it if i could make it.
Scarborough was great – it could not have been better – see separate post!
Then Friday i got a letter saying that i am NOT virtually unable to walk, that i CAN prepare a meal for myself etc etc. Very occasionally this is true… most of the time however it is not. Even if i do these things, the impact that having done them has on my health and my ability to manage my symptoms and how i then feel the next few days (when i would most certainly not be able to do the aforementioned things), means that i would have been much better off not having to do them. Also, been able to do something sometimes, and not knowing how much “payback” i will get is not a lot of practical use as i can’t plan to do anything as i never know when my “better” days (or is more often the case, better hour or so) will be…
Anyway i am going to appeal and hope that at the tribunal there are intelligent people who can see the limitations that I face in daily life and hopefully they will be able to see that they fit with the DLA criteria if you have half an imagination… here’s hoping… Apparently that can take months to happen so i will just have to get the correct form, send it off and then try not to think about it too much in the meantime and hope that i feel able to cope with it and the stress it will undoubtedly cause at the time.