Can anyone help me please?

what-a-mess_4

Hi,
I hope someone here can help me.
My son has chronic lung disease and bronchiectasis (dead lung tissue)he is also asthmatic,basically its cystic fybrosis without the stomach problems.
He also has a learning disorder and has special needs help at school.
He was very premature and is very lucky to be here.

He has been in receipt of higher rate care DLA since he was a baby and lower rate mobility for the last 4 years.
He has a portocath in his chest which he gets flushed monthly at the hospital and is on long term medication and has a pep mask for breathing excercises and has physio 2x daily at home.He also has cystic nurses .
He is 14 but is not allowed out unescorted and is watched over day and night.He gets intraveanous lines into his portcath when he has a bad infection ,this requires a stay in hospital then I continue these at home,usually 3 -4 injections,3-4 times a day which I mix and inject.Sometimes there are others injected via an electric syringe pump ,some times he is on a nebuliser twice a day for 6 months at a time.

Recently I filled in his DLA renewal they replied that they wanted information from his specialist.I then got a letter saying he had been awarded his DLA.I went for an appointment at the hospital and his physio had the letter ,I told her to ignore it as it was sorted.

I told her what he had been awarded and she said good,lots of cystics had been having problems.

I recieved a letter on friday saying his DLA had been stopped.I telephoned them and was told my sons GP had informed them that he needed no more care than any other child his age,that his breathing is in normal range(well it would be with all that bloody physio!)and that basically he's fine.

I am so angry!! We only moved here a couple of years ago and the gp only seen him to register him and set up his repeats for his long term antibiotics.We do not take him to the gp,we have open access at the hospital,I change his meds at home myself according to how I feel he is.If I think he needs hospitalisation I ring them and they sort it.

I've asked for a review but I don't know what to do......

:osorry just realised its a bit long but I wanted to get all the facts in

dmg24

Speak to your GP and ask to see the report?

what-a-mess_4

Hi, thanks for answering,

Thanks,thats a good starting point,I don't think he'll admit his error though .
I should of thought of that instead of getting in a state.lol

neffy58

Hi w-a-m,

My heart goes out to you as a CF parent myself - do go ahead with the appeal, as your son very definitely should be getting his DLA. I have been through the process myself, so know how stressful it is when you are already trying to cope with the never ending demands of living with CF on a daily basis.

Have you tried asking the Cystic Fibrosis Trust and Citizens Advice Bureau for some input?

I think the powers that be are really trying it on with claims because they are hoping to make cuts, and your GP sounds as though he knows very little about the demands of Cystic Fibrosis - maybe he has never had a patient with this before? Fortunately, we have a very helpful GP and my son is one of a few CF patients registered with this paticular practice.

Wishing you well with your appeal,

Neffy

babymoo

Can the consultant not send out a report aswell, if that is who see's him more it might be better coming from him/her.

Also I would get in contact with welfare rights who were fantastic with helping me get my DLA.

what-a-mess_4

Hi,
Neffy I think you're right,to be honest I also dont think he has read my sons records.I think he has just read the recant letter from the hospital which say he's doing well, which means he hasn't been in hospital this month...lol.
I could really do without this he woke up this morning with blue lips so I know we're going to have a fun week!

Babymoo I've just checked and the welfare rights line opens at 2 so I'll give them a try .I will be at the hospital tomorrow for his flush so I'll try to see his consultant but apparently I've only got 4 weeks from the date on the letter and sometimes the hospital admin side doesnt move very fast.I'll try to get a letter off his consultant,physio and cystic nurse.

..And look into changing my gp

what-a-mess_4

I just tried the welfare rights and someone is going to ring me tomorrow at 4.30 .
I'm still trying to get through to the gp.
I'm starting to feel a bit more postive now .

neffy58

Good idea about changing your GP - ours hardly ever sees my son as we go straight to hospital as and when the need arises, yet he is willing to do anything he can to make life easier, bless him.

It seems so hit and miss as to who gets awarded DLA and at what level, even in the 'CF community' - my son has never been allowed mobility, yet he has CF/Asthma/CF-related liver disease and CF-related diabetes and is often breathless due to very poor lung function.

He really could do with the mobility as it would mean he could then avoid using public transport, where you are often exposed to all sorts of coughs, colds etc.

neffy58

So pleased to see you are already starting to feel more positive

what-a-mess_4

Same here neffy,as I say he's only seen him once but he's been in hospital countless times .
We did'nt get mobility til he was around 10 and started using a wheelchair when he's really ill.
He's to big to carry now!
You would expect you son to be getting mobility, it's like a lottery isn't it?

neffy58

I sometimes think that what you are awarded depends on whose desk your claim/renewal claim lands on!

Our review took 10 weeks to be processed this year and this had a knock on effect on all kinds of other things......

However, chin up, carry on and you should get what your son is entitled to!