DLA and a change in diagnosis?

[PassTheProsecco]

Our child was awarded DLA last autumn, due for renewal after one year.

We recently had some genetic tests results back which have changed his diagnosis and long term prognosis (and not for the better, sadly). The new diagnosis doesn't change his symptoms, nor his needs in terms of his care particularly but naturally we will need to let DWP know about it (just waiting for a letter being drafted by his consultant doctors, so I can send them an official account of it all).

My question is, does anyone know how updates like this are handled by DWP? Will they just update his file and then review it all fully when it comes to the planned renewal date, or will I be likely to effectively have to go through the renewal process early?

Anyone been in a similar situation?

it's been a few years since we were in this position so things might have changed, but it made no difference for us as dd3's care needs were no different. We just renewed when it was due up, they usually send the forms out 5/6 months in advance so you may well find you're doing them soon anyway.

Good point, knew they sent renewal forms out early but had not even realised we were nearing the 5/6 month mark! Time flies eh.

Thanks very much for the reply :-)

I would say if his care needs have remained the same from when you applied - and not got significantly worse that you feel you should receive a higher rate - then there is nothing to inform them of. (Because it's needs not dx based) use the new information when you reapply - but again you'll be reapplying on his current needs and not his future care needs or on his Dx.

Sorry to hear the new dx wasn't a great prognosis.

Thanks youarewinning x

Been so wrapped up in the new diagnosis I hadn't considered it that way, but that makes sense. The rate he is on is still the right one so no issues there, just didn't want to be 'in trouble' for not keeping them updated I guess.