Hello everyone I am new here but I hope it is okay to post a question straight off as everyone on here seems to have lots of helpful advice and I am feeling pretty desperate.

I realise this is not strictly a benefits question per se but equally it is not quite an employment question either so I am hoping it will be okay to put it here.

Anyway here goes; I wondered if anyone has experience of applying for ill health retirement due to RSI/ WRULD or a condition that is difficult to diagnosis/ give a prognosis for such as ME/ CFS or Fibromyalgia, please? Or simply struggled to be awarded IHR or had to appeal with any condition.

I would welcome any advice from you if so, as I have stage three non-specific RSI and as a result displaced pain in my upper limbs which has developed to the point were I am unable to walk due to the pain and have to be pushed in a wheelchair if I need to go out.

I am currently receiving DLA HRC and am in the ESA Support Group (for the time being at least –fingers crossed!) and my OH has to help me with everything (including typing this) due to the severity of my condition but despite what I thought was a comprehensive application for IHR I have been refused on the grounds that:

“in the absence of a clear pathological condition causing my pain symptoms it is very difficult to make a judgement about prognosis”

“Given (Buff’s) young age the scheme requires a judgement that (Buff) is likely to be incapacitated from undertaking (Buff’s) role or a similar role for the next 26 years. The evidence provided is not sufficient for the panel to make this judgement”

My consultant supported my IHR application and has stated this in his letter which was included with the application, he also said that:

“(Buff) is highly unlikely ever to return to any form of employment in the foreseeable future” and “I think any form of employment is a totally unachievable goal” along with “I do not think that conventional medicine has any further part to play in (Buff’s) condition and that (Buff) is purely looking at management issues”.

He also confirmed my diagnosis which all professionals I have seen have agreed on: “bilateral non specific work related upper limb disorder”.

Whilst I realise his statements could have been slightly stronger and more specific, the rest of his letter was in a similar vein and the health professionals who have seen it have all said it is a strong letter which must have been difficult for me to read given the 'end of the road' nature of it after constantly trying different treatments for 2 and 1/2 years.

Almost every medical person I have seen has been extremely supportive and recognised that I have tried absolutely everything I can to improve/ cure/ manage my condition with no improvement what so ever, and in fact it has worsened. And I included other such documents in my application from OT and Occ Health to this effect.

Due to my circumstances I must appeal the decision as there is no prospect of any improvement and I need the financial support to just survive as it is a struggle at the mo with only benefits.

My union rep has been fantastic throughout my illness and is very surprised/ disappointed/ angry that my application has been refused and will help me with my appeal. She is currently taking advice from colleagues about the decision etc.

I would welcome any advice from people who have been through this process especially an appeal, as it is so difficult to know the best approach and perhaps what I have missed in the initial application especially as this is my last chance.

The appeal consists of completing a letter with my grounds for appeal plus any further medical evidence submitted by my GP or Consultant.

I plan to approach my consultant to see if he can strengthen his letter, although I am not sure if he will, given he has already written one letter and is quite fierce. I had been thinking that perhaps I should see a consultant privately for a diagnosis and prognosis which would hopefully be more specific. Has anyone else done this? Do you have any advice about who, how etc?

Any advice, support or experiences would be gratefully received, as I am feeling so overwhelmed by what to do for the best and have no idea about how I might succeed!

Thanks for reading and I hope someone out there may be able to help.

PS. Sorry for the long post but I thought the detail may help....