ESA and Regulations 29 and 35

Don't forget that the aim is to get the correct decision as early in the process as possible. There is no beneift in holding back anything that might help your case.

Hi
Having read this thread with great interest, and taking on board mrs Hurtyback's suggestion of getting the correct decision as early in the process as possible, I have a suggestion. I too have ME, since 1977, and my GP's wife also has it, so my GP knows a lot about the condition, as does Lorraine's.

One of my carer's is a retired staff nurse and what we did was to work out which descriptors my variant of ME (25% group, long term and severe) covered, and to what extent. My carer typed it up, and we went along to my GP to see what he thought of our 'presentation'. He took the document we'd prepared, went through 20 years of medical records and produced two sides of A4 as a supporting letter which was the most amazing and detailed medical report I'd ever seen; and he included the 'exceptional circumstances' aspect in it too.

The result was that I got the Support Group without a medical for two years, with the further comment from the registered nurse who compiled it that 'the client had severe functional disability, due to ME, causing significant discomfort and exhaustion; and avialable evidence suggests immprovement is unlikely in the longer term'.

My GP told me that the NHS has produced no information about how they were supposed to deal with patients coming to them asking for supporting letters for claiming ESA and that the report my carer and I had produced had shown him how to approach the subject, and how detailed to make it. Is it possible that you might approach your GP with a similar idea?

penthesilie wrote: Hi
Having read this thread with great interest, and taking on board mrs Hurtyback's suggestion of getting the correct decision as early in the process as possible, I have a suggestion. I too have ME, since 1977, and my GP's wife also has it, so my GP knows a lot about the condition, as does Lorraine's.

One of my carer's is a retired staff nurse and what we did was to work out which descriptors my variant of ME (25% group, long term and severe) covered, and to what extent. My carer typed it up, and we went along to my GP to see what he thought of our 'presentation'. He took the document we'd prepared, went through 20 years of medical records and produced two sides of A4 as a supporting letter which was the most amazing and detailed medical report I'd ever seen; and he included the 'exceptional circumstances' aspect in it too.

The result was that I got the Support Group without a medical for two years, with the further comment from the registered nurse who compiled it that 'the client had severe functional disability, due to ME, causing significant discomfort and exhaustion; and avialable evidence suggests immprovement is unlikely in the longer term'.

My GP told me that the NHS has produced no information about how they were supposed to deal with patients coming to them asking for supporting letters for claiming ESA and that the report my carer and I had produced had shown him how to approach the subject, and how detailed to make it. Is it possible that you might approach your GP with a similar idea?

Hi, Thank you so much for taking the time to post Your GP sounds amazing and you are very lucky he took the time and effort to do this. I wish I had the time to do the presentation/document that you did, but because of sensory overload and other problems I can not spend much time of the PC and my son (who acts as my part time unpaid carer) is working long hours at present and sadly will not be able to help me. It took me months to fill in my ESA form with lots of help (I started early as I knew I was to be transfered, and I knew it would take me a very long time to complete). Its a shame I did not put this post up earlier and we could of liased and you could of possibly given me a copy of your presentation/document and I could of adapted it to my symthoms etc, as we sound very similar with where we both are with M.E.
My GP did say to me when I told him some 8 months ago about me being transfered from IB to ESA that he would do all he can (he now only works for a few hours a week). He said he has no experience of the ESA system and asked me to keep him informed so he could also help other patients. Unfortuanly I have been so unwell with my M.E. that I have not seen him since so next week will be my first time to explain what been happening, or should I say, not been happening as DWP have been pants.
Please take care and I hope you manage to get better days/time with some relief from this very debilating and disabling condtion.

Hi Lorriane

Just reading your thread and wondered if you have looked up your local MP for support, maybe they could get involved and request you be placed in the support group. Also have you seeked any help from your local CAB, the GP surgery i attend run a scheme called GP CAB outreachscheme, or CAB GP Outreach scheme., my GP refrerred me and I see my CAB advisor at the GP surgery.,

Best of luck

Meg

Meg3 wrote: Hi Lorriane

Just reading your thread and wondered if you have looked up your local MP for support, maybe they could get involved and request you be placed in the support group. Also have you seeked any help from your local CAB, the GP surgery i attend run a scheme called GP CAB outreachscheme, or CAB GP Outreach scheme., my GP refrerred me and I see my CAB advisor at the GP surgery.,

Best of luck

Meg

Contacting your MP

Where to get advice?

bro58

Meg3 wrote: Hi Lorriane

Just reading your thread and wondered if you have looked up your local MP for support, maybe they could get involved and request you be placed in the support group. Also have you seeked any help from your local CAB, the GP surgery i attend run a scheme called GP CAB outreachscheme, or CAB GP Outreach scheme., my GP refrerred me and I see my CAB advisor at the GP surgery.,

Best of luck

Meg

Meg, thanks for the reply hun, I am infact meeting with David Cameron's (my MP) assistant on the 29th January as hes surgerys are so booked up he suggested I meet with her in the first instance and then she can pass all details on to him for him to deal with.

So I thought that doing this and also getting my GP invovled with the regulations would be a good way of trying to get DWP to sort there act out.