OK Guys and Gals out there - I am setting out on the dreaded road to appeal the decision to turn us down for funding , and I need the benefit of the experience of those who have trodden the same tortuous path ! So far my OT and Community Matron say they cannot have any input it must all come from me but they don't say what . The letter I got , stated if I wanted to appeal I had six months to do it in and gave the address of the appeals manager .It then went on to say if I had a formal complaint I could put it to another a different address or if I wanted an informal complaint I could go to yet another address or phone the patient liaison service which I did . The lady there said "oh send us everything and we deal with it " and gave me another address .Wasn't happy with this and sent an e-mail to the appeals manager (first address - hope you are all still with me ) asking what format I should use for the appeal and what evidence and supportive evidence from doctors neurologists psychiatrist and geriatrician consultant I could use . Needless to say that has not yet produced any response but early days , as we all know the wheels of bureaucracy grind exceedingly slow . However , in the meantime any advice from you good people would be most welcome . I don't know if there is a national procedure or whether every health trust has its own format and rules . I do intend to also approach my MP and write to the Minister for Health and point out in no uncertain terms that the whole process is flawed and is a post code lottery - in fact my community matron said that it often depends who is sitting on the financial panel that day .Perhaps we should all write to him because I doubt he has a clue what is going on .- I am not sure he would care but if we all make enough noise perhaps he can be made to care .Time to man the barricades and fight the cause of PSP sufferers and their carers .I am determined to fight this one all the way - not just for me and Veronica but all of us who bureaucracy can dismiss with the stroke of a pen without the least comprehension of what the illness involves for the .
sufferers and the huge strain it puts on the carers.
So please let me know your experiences - good or bad and not only will that help me but also anyone else in the same boat and will give me ammunition for my campaign - thank you in advance