PIP for newly diagnosed teenager

[Dublin Girl]

Hi. Newbie here. I've looked through the forum (which seems to cover almost EVERYTHING related to diabetes - very impressed!) but I can't find what I'm looking for, and things have changed so much over the past year or so that I'm unsure as to how to proceed.

My then 16, now 17 year old son was hospitalised and diagnosed with Type 1 diabetes in December 2014. He'll be treated by the paediatric department of our local hospital until he's 18 - and thank goodness for that, because newly diagnosed adults seem to be left to fend for themselves in this area! A couple of months ago his nurse mentioned that "all" newly diagnosed diabetics are entitled to a year of DLA (I suppose it would be PIP now) to cover the adjustments made in lifestyle, etc. I can't find any mention of this anywhere online, but she swears her patients' parents have been getting it for years.

To be clear, my son has no actual disabilities or health problems beyond the usual that insulin dependency brings and doesn't need extra care or medication. The benefit would only be available for the first year, to get us over the initial outlay. If I was on a good wage I wouldn't even be asking about this, but I'm a low wage earner whose salary is topped up by tax credits, so it did actually make quite a difference to my bank balance, particularly since he was diagnosed just before christmas!

So my question is, has anyone else heard of this limited one year only benefit? And if so, is there a different way to apply to it than the norm? When I rang the DWP they just talked about PIP as a long term thing and I don't think he understood what I was asking. Hope I've been clearer here!

 

[azure]

I've never heard of that either, Dublin Girl ( not that I'm in any way a benefits expert, but my job did involve a little knowledge of benefits).

Because your son is under 18 it may be that you can possibly get some benefit as you may count as caring for him in these first few months eg if he had a hypo at night. But it wouldn't be automatic. You'd have to apply and see if you/he qualified. The CAB can help with benefits issues and can advise on filling out forms. You could ring and see if they can help you.

You mentioned an "initial outlay". Can I ask what you mean there? Have you had extra expenses due to your son's diagnosis?

 

[Dublin Girl]

Thanks for that Azure. The CAB are hard to get hold of these days, a huge amount of their funding has been withdrawn so they work extremely reduced hours now, but I will try them.

The initial outlay was to some degree self inflicted. I'm not a natural cook, hate cooking actually, and my freezer was very much my best friend when it came to meal time. My son's diagnosis was a bit of a wake up call. The food I'd been feeding my kids was ok, but it could have been so much healthier. So I splashed out on a wok, a grill oven, a decent steamer and a really good digital weighing scales. I also buy much more fresh protein now as opposed to frozen and, while I still buy frozen veg, I also buy an awful lot more fresh veg than I used to, All of these things are a fair bit more expensive than frozen, which shouldn't be true but really is. For instance, I could buy 4 frozen chicken steaks, dressed, marinated or whatever and ready to stick in the oven for £2, but 4 chicken breasts from the chill section which I prepare for cooking myself cost about a fiver.

More of a luxury, there was also the fact that my kids had each asked for a selection of american candy for christmas, which I'd already bought when he was diagnosed and was non-refundable (a rare treat by the way, they've never eaten sweets as an every day thing and ice cream has always been weekends only), so his present had to be rethought and bought, which meant online and a high express delivery fee. There were also the discreet little case for his meds so no one knows they're in his schoolbag and the smaller one for just his pen and glucose for short trips out. And I also bought a few books on diabetes and carbs - I know it's all available online, but I can't take my pc into the bath with me and that's where I get most of my reading done these days!

Cooking takes much longer now. I hate it with a passion...

 

[azure]

Never apologise for buying books instead of using the Internet! I'm the same - sometimes it's just good to have a book in your hand Your son is very lucky: you've obviously made some big changes and thought about anything you can to help him

Thank you for explaining about what you had to buy. I'm really not sure if you'd get any help with those costs. It's worth checking though just to be sure. I know you didn't find the DWP very helpful before, but if you're able, it may be worth another try in the hope you get someone who understands your query, and can get a definite answer.

You're right about the CAB hours being reduced. I'm not sure about your area, but where I live there's a number to call and after a few days someone calls you back and discusses your query over the phone. Then they can also give you an appointment if necessary. It's a bit of a faff, but they are good with the disability benefit forms.

Good luck

 

[slunnon]

I was diagnosed & hospitalised a year before your son (November 2013). I was also told by my nurse that there was a chance that I could get a benefit payment, as I was under 18. I did get the payment, though it took around 2 months for all the forms etc. I filled out the forms myself as I could go into detail about how diabetes has affected my life.

The reason why I believe I got the benefit, is because my hypo awareness wasn't great at all (I would have to be down in the 2.0 m/mols before I realised I was low). For the reason I can't really be left alone. However, lucky I can detect hypos pretty quick now, which is great, else I wouldn't be allowed my provisional licence or allowed to drive at all.

The benefit did help, however I could have survived without it. I payed for my own sugar tablets and cereal bars (for recovery carbs when I'm on the go), my cool bag for my insulin when we went on holiday, and my own diabetic bag to keep everything in.

Although you are trying to do the best for your son food-wise, I have to express that there might not be a huge need to. My mother also went healthy-crazy when I was diagnosed! Obviously I consciously aim to eat well and healthily, however we haven't changed our shopping or eating habits (apart from I've changed my snacks from chocolate bars to low carb things like fruit, meat or cheese) I cook all of my meals myself - porridge/omelette for breakfast, sandwich/pasta for lunch, fish and veggies for tea, simple (& relatively cheap) yet healthy things. I have one "cheat meal" a week to eat something sugary like chocolate cake and a takeaway!

Could you persuade your son to consider making his own meals? He'll need this tool later on in life (especially as a diabetic). Perhaps to also consider getting a part time job? I've been applying for a few months now and employers are great regarding diabetes (most will not discriminate). Unfortunately I'm not in paid employment yet (most likely due to my age (17) though luckily I do art commissions for people which is good money.

P.S. We also shop at Lidl which has saved us a huge amount!

Hope this helps in some way and I'm sorry that I've gone off topic a bit but I want to help you and your son as best I can!

 

[tim2000s]

Having had this very discussion with someone in a facebook group, carers for juveniles are allowed to apply for PIP as a cover for the disruption in life, however this ceases once the age of 18 is attained. As I understand it, this is means tested.

Whilst a diabetic small child is one thing, once a child has reached sixteen, whilst you are entitled to apply, they really should be looking after their diabetes themselves.

 

[LeonaMc]

My son was receiving DLA (disability living allowance) until it changed to PIP (personal independence payment). Diagnosed Jan 2014 started getting DLA in the August. ...received letter saying had to claim PIP which was done few months ago. Letter today stated he wasn't entitled to PIP at all!!

 

[ladybird64]

Leona, how old is he? Judging by the info given by previous posters, if he is under 18 but 16 or over, they may be making the assumption that he is not entitled to any extra financial help with managing his condition. Is he under the care of a hospital, having regular appts?

 

[Type1Lad]

Im 24 and i can't claim pip the only thing i can claim is JSA/Housing/ESA i got withdrawn from ESA and put onto JSA but i still don't feel the ability to work right now.

 

[catherinecherub]

You could try ringing DUK Careline as they know about benefit entitlements.
https://www.diabetes.org.uk/How_we_help/Careline/

 

[JTL]

I wouldn't think many diabetics were thought incapable of work.

 

[LeonaMc]

Ladybird64 ....he is almost 17yrs old but currently not entitled to any other benefits.....I am on benefits myself at present so my allowance is covering us both. Still attends regular appointments at hospital clinic every month x

 

[JTL]

Today's claiming is not about what ailments you have but what you can and cannot do. Can you sit stand walk lift carry move right move left are you independent in these movements and so on.

 

[dawnmc]

Nothing to do with PIP, but don't worry about buying frozen veg, it tends to be fresher than fresh if you get my meaning. Veg is frozen the same day its picked. Whereas 'fresh' veg might have been stored before going to the supermarket.

 

[CarbsRok]

My son was receiving DLA (disability living allowance) until it changed to PIP (personal independence payment). Diagnosed Jan 2014 started getting DLA in the August. ...received letter saying had to claim PIP which was done few months ago. Letter today stated he wasn't entitled to PIP at all!!

What they are saying is that he doesn't need help to look after his diabetes hence no PIP. Once the age of 16 is reached then a child can no longer claim DLA any claim or attempted claim has to be for PIP.

Ladybird64 ....he is almost 17yrs old but currently not entitled to any other benefits.....I am on benefits myself at present so my allowance is covering us both. Still attends regular appointments at hospital clinic every month x

As you son is 17 then he should be on your claim and if yours is IR then you can claim expenses back for hospital apts.

 

[ladybird64]

I would get so0me expert advice on this Leona, the situation may be altered if he is studying or in certain types of training apparently - best thing is to speak to the CAB really.
As has been pointed out already, just because he has a medical condition, unless it significantly affects his day to day living, and he needs much more help (you would need proof of this, medical letters etc), he wouldn't get PIP. He may be under the hospital but unless there are issues that are seriously affecting his control, that would not be classed as reason enough for a PIP claim.
16-18 is that no-mans land, considered too young to claim in their own right, but too old to be considered a child. I think it is usually expected they will go to college or further education but it doesn't always work out that way. I would check your entitlement letter, as Carbsrok has said, you should be receiving money in your claim for your son too.

 

[Duncan57]

Ladybird64 ....he is almost 17yrs old but currently not entitled to any other benefits.....I am on benefits myself at present so my allowance is covering us both. Still attends regular appointments at hospital clinic every month x

If he is still at college then you should be getting child benefit and child tax credits. If he is not in college but is not fit to work and his Doctor would issue a sick note for him, then he claims ESA. In the mean time I hope you are appealing the PIP refusal. Go to gov.uk website and search PIP appeal where you will find good info on how to appeal or if you have a CAB get their help to appeal.

Link to gov.uk.

https://www.gov.uk/pip/appeals

 

[ladybird64]

Does a claimant still need to attend a WAC interview before a decision has been reached Duncan, or is that no longer applicable?

 

[Duncan57]

Does a claimant still need to attend a WAC interview before a decision has been reached Duncan, or is that no longer applicable?

The work Related Activity Group (WRAG) applies later on after claiming ESA. The first thing to do is fill in the ESA3 claim form for your son, get a sick note form the GP and send both form and sick note to your local social security office.

 

[ladybird64]

The work Related Activity Group (WRAG) applies later on after claiming ESA. The first thing to do is fill in the ESA3 claim form for your son, get a sick note form the GP and send both form and sick note to your local social security office.

Hi Duncan. No, I wasn't talking about WRAG but rather the Capability for Work interview that one used to have to attend - got my letters round the wrong way! Bearing in mind some cases (although not the OP's), there is the possibility of the claimant being placed in the Support Group of ESA, should their needs warrant it.