Help please - am at wits end with PCT.

[MABS]

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.

[MABS]

bump

[2shoesishappy]

sorry I didn't reply I didn't know what PCT was. have emailed you with a number.

[2shoesishappy]

oh and don't forget i have some spare pull ups

[MABS]

Thanks 2shoes, apparently it's Primary Care Trust...I've heard the words a lot in past 48 hrs Will mail re pull ups, many thanks.

[pinkteddy]

Have you tried PALS (Patient Advice and Liaison Service)? All PCTs should have one? They should be able to mediate for you.

[MABS]

thanks girls,good idea

[mymatemax]

MABS, no advice just feel very frustrated for you.
I have a surplus of pull ups as ds2 has started to make a little daytime progress & I havn't cut the order back yet. You are more than welcome to them.

[MABS]

Thanks Mymatemax - but where are you? thanks sweetie

[mymatemax]

Suffolk & you?

[MABS]

I'm down in Sussex sadly,but I do have a friend in Norwich and one in Lincoln, they at all near you or am i showing my total ignorance re that part of England!?

[mymatemax]

No not ignorant, Norwich is about an hour away, Lincoln a lot further.
I love sussex, I lived in Eastbourne for 2 year & for a while in Brighton too.