DLA with mobility to PIP

Hi! My 16yr old (I'm his representative or whatever they call it) is on Higher DLA and Lower Mobility and has to now apply for PIP. He is in fact fairly mobile and I assume we got mobility because of the huge amount of medically related stuff we have to carry if he goes anywhere for more than a few hours and the fact that he often gets very tired and can't do much. He's currently in a very rebellious stage and refuses to do treatments and forgets which leaves us having to cajole, nag, threaten - usual teenager but serious stuff if he misses treatments and his lung function is down to less than half of what would be considered normal, and he coughs and then vomits regularly. However, I still can't see how he will get many points on PIP though. He has a gastrostomy PEG, struggles with weight, has diabetes and Cystic Fibrosis. He carries out several hours of treatment daily when well, including treadmill at the gym on the advice of his CF Physio. He can 'do' everything just about, but has a huge burden of quite complex care every day, 6 nebulizers, chest physiotherapy, puffers oral meds... and 4-5 times a year he has 2-3 weeks of planned intensive intravenous antibiotics to fit around all the routine stuff (which I am trained to administer plus he has to carry an epipen during treatment as he gets bad reactions quite quickly), plus extra physiotherapy if he's ill. He picks up every cough and cold going and we try to avoid people with colds as it can put him back in hospital. Increasingly he goes to school for half a day and sleeps in the afternoon after going to the gym. He's had to drop 2 A levels as he can't keep up because he's ill, tired, in and out of hospital and too busy with doing treatments. Despite all this he looks quite 'normal' - by which I mean he does not look ill. I am increasingly hearing people with CF are being turned down for PIP and we are, quite frankly, concerned for his future if he fails to get PIP as his future prospects of holding down any sort of job that pays enough to live on are slim, despite disability legislation and the fact that he's highly motivated. If you ask him how he is he says 'I'm fine', I guess he's known nothing else but it'll hardly impress an assessor. What do I do? I can only fill in the form according to the questions it asks and I assume his IV antibiotic treatments won't count for anything as they are (at the moment thank God) less than half the time. I'll be reading the guides and everything on this brilliant site but all advice welcome and are there any other parents or people with CF who have been successful in getting PIP? Sorry I'm panicking

Hi and welcome to Benefits and Work. As you are new to the site, this link will help you find your way around.

Welcome to Benefits and Work

Please remember that, in order to be counted not scoring points for a descriptor, the activity must be carried out reliably, safely and 'in a timely manner' as often as required and for more than half the time. More than half the time can mean 12 hours and 1 minute in the course of a day or 6 months and 1 day over the course of a year. I think the reliably etc might be where your son can score points.

I think there is a national organisation for people with CF? Do they have anyone who can help fill in claim forms? If not it will be a case of taking things step by step and doing the best you can.

PIP help for claimants

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Just reading through all my previous activity on this site I realise I didn't get back to tell you what happened! We filled in a daily diary and submitted loads of other evidence, including school attendance. Despite getting the HR PIP and standard Mobility they didn't actually accept how many hours a day/week he spends doing treatment. I didn't see the point of challenging it as he was awarded PIP for a few years without a F to F and it didn't seem worth trying to make them look at it again. Many thanks for the support you and the website gave us. It's on to looking at ESA at some point soon now, and I have already posted and had help with that too. Many thanks