Hi Girls - I am just wondering is anyone can give me any help. I have, in the last 2 days been reduced to tears by a local incontinence nurse, those of you I know will realise that is no mean feat!!
Ds is 6 yrs with left hemiplegic cp, and in last 18 months has become incontinent due to a neuropathic bladder. He is currently learning to self catheterise and doing really well, but it's going to be a long learning process. Up to this point I have been buying his pull ups myself, but recently decided that he should have them free as I believe he is entitled to.
After 4 months of tele calls, ystday I was told that as we have 'given up' trying to potty train him, we are not entitled. The PCT want to assess him , but said that he will only be entitled to 'pads' and probably only for 6 months! - I tried these and all the paddded pants a year ago and they were all useless, and some wouldn't even fit over his AFO splint (I paid for all these)
The nurse told me they 'they are not a shopping service for parents to choose what they fancy' yesterday!! Like i really fancy them....!!
My question is, do you know anywhere if it written down in any document that there is an entitlement in anything official?
All his docs are powerless as we live in a different health authority to where the hospitals are.
Any advice greatfully received, thanks.