Fibromyalgia ME and DLA

shabbyrose

Thanks, appealing seems like such a scary thing. When I first applied 3 years ago I was denied all together I asked for a reconsideration I got awarded LRM and MRC, I guess I am hoping for the same this time. Should I just be satisfied with LRM and MRC? It's so draining

sunnyone

shabbyrose wrote: »

Thanks, appealing seems like such a scary thing. When I first applied 3 years ago I was denied all together I asked for a reconsideration I got awarded LRM and MRC, I guess I am hoping for the same this time. Should I just be satisfied with LRM and MRC? It's so draining

if you believe that you satisfy the conditions for a higher award and that the people involved in your care will support you you should appeal, it is one more thing to fight when you are ill but why should you be short changed?

Have you talked it over with your doctors?

shabbyrose

The doctor told me that he would be happy to tell them about my ME and Fibro. He lead me to believe that they were going to send him a form to fill out. I also will ask my CMP adviser if she can write a letter for me. She is an OT. I have also been referred to a specialist ME clinic, but I can't go because it is in another town. I don't think that has any relevancy to my DLA claim, it just sucks that I don't have any transportation to get me to the treatment I need.

TOBRUK

Hi Shabbyrose, I too suffer from ME and have done for many years, I do also have another disability. I have only just in the last month received the decision from my reapplication for DLA. I was receiving High mobility rate and middle car rate but their decision this time is High mobility rate indefinitely and low care rate indefinitely. They did send for a report from my GP who is absolutely wonderful. She asks to see me every 6-8 weeks. It is important that you discuss your illness with your GP and that he/she knows exactly how it affects you.

I would urge you make to an effort to go to the ME clinic however far it is - if your GP has gone to the trouble of reffering you to this clinic and you don't attend I would imagine that this will be reported to the DLA at some point if they contacted your GP. So yes it is relevant to your DLA claim, if not this time, next time. Someone at the ME clinic may be able to give a report of your condition, even if it is only to confirm that you do have the illness. After I was diagnosed, I saw an ME specialist for a while and his report was relevant to my claim a few years ago.

I know the whole process is draining and very stressful but it's something we all have to go through. Although my care rate has been lowered this time, I have decided not to challenge it as I don't want to risk losing any award, especially as it is 'indefinitely', so hopefully I shan't have to reapply for a few years! Hope it works out for you.

shabbyrose

TOBRUK wrote: »

Hi Shabbyrose, I too suffer from ME and have done for many years, I do also have another disability. I have only just in the last month received the decision from my reapplication for DLA. I was receiving High mobility rate and middle car rate but their decision this time is High mobility rate indefinitely and low care rate indefinitely. They did send for a report from my GP who is absolutely wonderful. She asks to see me every 6-8 weeks. It is important that you discuss your illness with your GP and that he/she knows exactly how it affects you.

I would urge you make to an effort to go to the ME clinic however far it is - if your GP has gone to the trouble of reffering you to this clinic and you don't attend I would imagine that this will be reported to the DLA at some point if they contacted your GP. So yes it is relevant to your DLA claim, if not this time, next time. Someone at the ME clinic may be able to give a report of your condition, even if it is only to confirm that you do have the illness. After I was diagnosed, I saw an ME specialist for a while and his report was relevant to my claim a few years ago.

I know the whole process is draining and very stressful but it's something we all have to go through. Although my care rate has been lowered this time, I have decided not to challenge it as I don't want to risk losing any award, especially as it is 'indefinitely', so hopefully I shan't have to reapply for a few years! Hope it works out for you.

I already sent in the form, and was confused when filling out the part of how far I can walk without being in pain. I thought it meant how much walking I could do without being in more pain. Not taking into account the pain I wa already in. Is it to late to amend it? Do I just need to call the DLA helpline and change it, or should I write to he decision maker and tell them?

shabbyrose

I called the DLA yesterday and told them that I filled in the part wrong on how I can walk without discomfort. I really didn't take into account the pain I was in, I though it was how far I could walk until the pain from walking combined with pain I was already in caused so much pain that I could not walk all together. They said they would pass it along to the DM and I have an appointment with the Dr on thursday so I will ask him if he can give me a report or a letter, and an appointment with OT on the 4th so I will ask her to give me a letter as well.

Thanks so much for all your comments and support.

Thanks to sunnyone for keeping me from sending that ridiculous letter that wouldn't make any difference, and to all of you who shared your experiences with me. I will keep you posted on how it works out.

elfen

Please if you can take it to appeal. It's people with conditions like yours who struggle on regatrdless that DLA is made for (and people like me who can't be left on their own for too long or they do things.....) You sound like a friend of mine, she appealed for AGES to get HRM as she has a debilitating condition in her hips and back which means she needs to take morphine 3-4xdaily and she was still soldiering on (thankfully she got it - and a mobility car which has given her a new lease of life)

shabbyrose

thanks elfen. It is unfortunate really, we suffer for the people that know how to work the system. I have a neighbor who has a mobility car and her husband takes it to work everyday, and she takes the bus if she needs to go anywhere. :rolleyes:

dale1554974q0

Hi shabbyrose, I have been reading this thread with interest as it is epitomises how people with fm are generally treated. I get HRM and LRC but I am fghting for higher care as I cannot look after myself properly. I also have Lupus and OA.depression and anxiety.
It took me two years to get HRM but I never gave up and if you feel your entitled to it then keep pushing for it. I am a mod on the benefits board of another forum and the stories are so similar etc but there are people being granted than before.
Good luck
Jo

shabbyrose

dale1554974q0 wrote: »

Hi shabbyrose, I have been reading this thread with interest as it is epitomises how people with fm are generally treated. I get HRM and LRC but I am fghting for higher care as I cannot look after myself properly. I also have Lupus and OA.depression and anxiety.
It took me two years to get HRM but I never gave up and if you feel your entitled to it then keep pushing for it. I am a mod on the benefits board of another forum and the stories are so similar etc but there are people being granted than before.
Good luck
Jo

I have MRC because of bi-polar, and panic anxiety disorder, so I need someone with me pretty much all the time. They have ignored that I need attention in the night due to my FM and ME. Hubby has to get up and get pain medicine for me in the night and help me out of bed if I need to go to the toilet. So embarrassing. I went to the DR today, he upped my pain medication, but would not write a letter as he said they usually write him for a report. Hopefully I will have more success with the OT at the condition management program, and I hope he won't mess the report up when they send it to him. I have heard so many horror stories of incompetent GPs writing stupid things on their reports.

I got a letter form the DWP letting me know I need to have all new evidence in by the 29-01-10.

The only thing I can say is at least I am not loosing out at the moment, because my new claim starts the beginning of feb, hopefully it will all be sorted by then.