After 18 months fighting they have said no again

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After 18 months fighting they have said no again

Postby MandyG » Fri Feb 11, 2011 12:04 pm

I am shaking with anger just now

we have been fighting NHS Fife for 18 months now - after they said no to Rachel's referral, then we made a complaint, then appealed again and still they have said no - this is even with supportive letter from Donna and HMSA and from Sue

I am so p****d off it is unbelieveable

does anyone know what I can do now? I am in process of emailling my MSP to see if they can help again

it just doesn't make any sense - I have to travel to GOSh with Rebecca for her check ups etc, and Rcahel has to come with me - so whyt do they agree to one and not the other sibling????

there is a bit in their letter that mentions Sue is coming up here to train up local physios etc so they think if sue comes here then Fife can deal with EDS without us having to go to GOSh

Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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