Mother of one year old baby girl with severely delayed development awarded DLA. District nurse provided supporting statement saying baby had Prader-Willi Syndrome as confirmed by genetic testing. It now turns out that the testing was incorrectly carried out, and the baby does not have PWS. Nevertheless she has all the physical manifestations of PWS, including characteristic facial features, weakness, poor motor skills, poor feeding, delayed rolling/crawling, poor interaction with people, etc.

Given that the baby still has the same extra care needs compared with non-disabled babies of the same age, should the DWP be informed of the withdrawn diagnosis?

My instinct would be to say not. A change of diagnosis is not a change of circumstances but rather a different opinion. The child's needs for assistance with BFs remain the same.
By the way, if this little girl has all the symptoms of PWS, how can the doctor be sure she doesn't have it? If she doesn't have PWS then it would seem she has some other condition with the same characteristics. I honestly cannot see how it would affect her entitlement to DLA in any case.

The DLA95 leaflet which is sent out to claimants lists the 'changes you must tell us about' - and a change of diagnosis is not on the list.

In relation to illness or disability it states 'you must tell us if your doctor tells you your illness or disability will last for a longer or shorter time than you have already told us. Also tell us if you need less or more help with personal care or with getting around.'

Should be safe not to alert the DWP, on this basis

Thanks Connolly and Robbo. My concern in this particular case was that PWS is a chomosomal disorder which (I understand) can be confirmed by genetic testing of the baby and both parents. When the parents were tested the results showed that the baby could not have PWS. The withdrawal of the diagnosis was therefore not so much a change of opinion as a change of fact.

Brian

I take your point, Brian, but I still think you don't need to worry. Since the baby has all the symptoms of PWS then presumably she has a condition even though it may be currently undiagnosed. The withdrawal of the PWS diagnosis doesn't mean she has got better. Her extra needs are still the same. Not a change of circumstances, therefore.

I was wondering where I can find a copy of the DLA95 leaflet - can't find it on the DWP website or google. It would be useful for an overpayment case I have. Thanks.