Perthes Disease

chriz1

Hi, 

My son had been diagnosed with Perthes Disease when he was 4 he's now 7. I did previously try to claim dla but I rushed the form without much detail.

This condition is a wait and see but thankfully ATM he doesn't need a operation. We've been told he will likely need a hip replacement in his early adult life. 
He has good days and bad ddays but has to be careful and can't do most things a child his age can do in terms of play and physical activities. 

My question is has anyone been successful in a claim for Dla relating to perthes, I'd really like some advice. 

Thanks

Savvy_Sue

Is there a Perthes association? Yes there is, although they don't seem to have a website, Google will get you a phone no. There is also https://pertheskids.org.uk/

forgive me if you've already thought of these: I'd have thought you'd get the specialised help you'd need from one or the other, but other sources of general advice will be available if they don't pan out. 

poppy12345

DLA is not about a diagnosis. You need to prove that your son has more care and/or attention needs than that of a child the same age who doesn't have a disability.

Did you challenge that previous decision? If not was there any reason why?

chriz1

No I didn't challenge the original decision, with thrboain he was in and the shock of it all we had enough worries going on. Thinking back maybe I should have done 

poppy12345

Reapplying again using the same evidence you previously used could see another refusal. I'd advise you to get some expert advice from an agency near you and then you'll be able to tell them everything about your son and they will be able to tell if it's worth applying again. This link will help you find what advice agency is local to you. https://advicelocal.uk/welfare-benefits

mad_spaniel

I know of someone whose son got Perthes and was successful with a DLA claim. He was about 10 at the time and used a wheelchair on occasion and a couple of crutches at other times. From memory the claim centred on balance and walking. eg need for support/ help/ supervision to safely get up from his bed on waking. Help with balance getting in and a shower, bath or when standing at a sink. Support/ help dressing his lower body ie pulling up trousers , putting on underpants and putting on socks. Supervision managing stairs. He was compliant with taking medication. When using the wheelchair he needed to be pushed. Opening doors safely was another issue, even using the crutches. Imagine how he would cope if parents, siblings , friends weren't there. You/ they probably do a lot for him, without realising it.  The application also said what he looked like and felt like when attempting things unaided. The DWP can't see him and need you to provide a picture using words to explain his difficulties and how he/ you cope. They even measured a kerb stone (1 metre) and tested how far he could get on his own for the distance in the mobility part to be accurate rather than a guess. Your son will spend a significant amount of time at school. Does the school make any special provision for him now? Do school friends help ? Even help getting into the car . I hope this helps.

chriz1

Thankyou just seen this and it's a huge help