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12/09/2014 at 16:30
We haven't had the formal letter but H has got PIP at the standard rate for both the daily living allowance and the mobility component. H has been advised by the Muscular Dystrophy advisor that he should be getting the mobility component at the higher rate as has a friend who is a neurologist, so when H gets the break down he will need to say why he doesn't agree, provide supporting evidence and ask for a mandatory reconsideration and if we still don't agree go to tribunal. It will have taken 60 weeks for them to reach the initial decision and receiving any money.
12/09/2014 at 16:51
So it sounds like they just gave him the basic level and didn't take into account his personal situation? What a disgrace. I take it you will fight it and push for the higher level? If you do push for it, will the payments start anyway? (Just so you have something while you wait?)
12/09/2014 at 17:22
It is an absolutely horrendous system. We will see what the award letter say's. We will ask for an explanation of the decision and also to see the medical report from CAPITA. Depending on what we find out and what advice we receive we will make a decision on whether to appeal. It is difficult as it is a very stressful process and you feel guilty for having a disability. I don't think we will receive anything until the appeal is complete and they might decide we aren't entitled to anything. My H has Beckers Muscular Dystrophy which is a muscular wasting condition. Although he can walk with the stick, he can only walk slowly, struggles walking up or down slopes, can fall at anytime, needs someone who understands how to help if he falls, struggles with stairs and has difficult getting up from sitting, he also can't carry things. The Beckers has also affected his heart causing heart failure, (we are currently having assessments in regards to a heart transplant) and the respiratory muscles.
12/09/2014 at 17:29
I know what you mean - my sister is in a similar boat - I won't go into the detail but she's said she felt on numerous occasions that the people making her decision treated her as if she was making it up! I really hope you get the outcome you both need x
12/09/2014 at 17:37
Totally get where your sister is coming from. A year and a half ago we didn''t even know H had heart failure. There are a lot of things we are struggling to come to terms with. The biggest thing for me is we don't know how long H will be well for.
20/09/2014 at 17:41
Winterflower, good luck with it all.
If it helps the change from DLA to PIP made the mobility criteria harder for anyone to claim. Unless he has psychological issues that make it impossible to go out alone (not physical they don't count for this criteria). The only way he'll get the higher rate is if he can't walk 20 metres or stand (even with an aid). They don't give a toss about hills, etc.. so please avoid writing abut this as it'll only hinder your claim as they'll take it as flat walking is fine.
Basically the changes in DLA to PIP, mean you got the higher rate for being unable to walk more than 50 metres (DLA) has reduced to 20 metres now (PIP) , which means anyone who can potter around their house on crutches, sticks etc.. cannot get the higher rate. It is making lots of people housebound as it takes away their ability to access a motability car. Some guy recently took the Government to court to challenge the change as he is on crutches and is virtually housebound, and knows he will lose his higher level with the change an effectively be unable to get to his hospital appointments, but it was ruled legal by the judge if not immoral, I believe he is considering an appeal.
Thankfully I'm not in this position, but a lot of my fellow patients are so I have learnt all these changes from them, as even those who use scooters to be able to leave the house are being effected. Apparently the changes are for no the reason than to cut the benefit bill, and even though they know it is disabled people that will be effected and it's nothing to do with stopping fraudulent claims, the government has plowed ahead anyway. The whole thing is a disgrace but has slipped through because it only effects those that are really ill and unlikely to complain.
I have my fingers crossed for you. My advice would be to get some help from someone in the know about PIP, like CAB, or ids your H under an outreach neuro team, they are normally switched on. As someone whose spent their life under neurologists I can say they are not usually experts or even up to date in these areas and often see things in terms of who they think are eligible, not looking at what the criteria are. CAB will help you to wrote about the salient points, and avoid you slipping up by writing about things that don't count like:-
and write about what they do care about
It really is about knowing what you need to tell them. One fellow patients was recently told she had no care needs around toileting because she was doubly incontinent, so there wasn't an issue.
Good luck and I hope the link below helps xx
20/09/2014 at 19:09
Thank you for your advice.
The care advisor for Muscular Dystrophy feels we should appeal and stand a good chance of success, I don't want to due to the stress and feeling guilty receiving anykind of benefits. It is due to changes that have been made to PIP already, he can't walk safely, timely or repeatedly. Yes he can walk more than 20 m but slowly and with risk of falling at any time. On that basis other people with Beckers Muscular Dystrophy have got higher rate. My H does not normally go out on his own unless it is to somewhere he knows and people know will be there when he gets there. It is not pschological having someone with him when he goes somewhere new, he needs someone who understands how to help when he falls. You can't try and lift him up as his legs give way.
The BMD has caused heart failure and when he was assessed in regards to a heart transplant the walking test suggested he needed a heart transplant now, however we know that his heart isn't that bad but it is down to BMD affecting his leg muscles.
BMD is progressive so he will either eventually easily receive PIP or he will die of the heart failure.
His neurologist would probably right explaining, we don't normally see the neurologist as there isn't much point as there is no treatment for Beckers, we also see respiratory consultants at three hospitals, a cardiologist and are still being assessed in regards to heart transplant.
21/09/2014 at 11:18
Firstly please do appeal, you shouldn't feel guilty, your husband has a genuine need and shouldn't have to go through all this.
I'm sure everyone else would agree that we all pay tax, in the belief that if something was to happen like your husbands MD, that we'd be taken care of financially without all the fighting you are having to go through. I'm sure the extra money will come in handy. It will be a godsend if you require a Wheelchair Altered Vehicle (WAV) in the future, as you'll be able to exchange the money for one through motability (although there will be an upfront payment). The fact that they have made you jump through hoops is ridiculous, at times like this it's the last thing you need.
Please do appeal though, I know it's stressful now, but in the long run it may be vital, in keeping your husband mobile. That money can pay for a scooter or altered car, and will give him free car tax and an automatic blue badge (which apparently are also being clamped down on).
Good luck and keep us posted xxx
21/09/2014 at 22:40
Thank you Babylonglegs, H is speaking to the MD care advisor on Monday, we will see, what she say's when he speaks to her. We are two points below higher rate mobility, so from looking at the government website we are entitled to a blue badge also. Based on the info we gave local authority and the fact adult social services have fitted grab rails etc in the house they have agreed to a blue badge, initially we had been waiting till we had a PIP decision but in the end decided to try and sort the blue badge. It also took nearly took a year for DVLA to decide whether H could still drive. They have agreed to him continuing to drive but it has to be reviewed every three years. H is very fortunate he still is able to walk and stand and can drive an automatic car. As you have probably gathered H will end up in wheelchair, probably it will have to be powered one. We are fortunate that H is 42 and still able to stand and walk as most people with BMD are unable to by the time they are 40. I don't see H's disability I just see my gorgeous husband and awesome father of our seven year old.
23/09/2014 at 14:15
The last line is so beautiful. I don't think many people could understand how hard it must be for your husband to become so dependant on you, and you to become his carer, in the emotional sense not only the physical sense. It's wonderful that you still see him for who is and not become distanced because of the carer role.
The other thing that may help is a Personalised Budget it may not be right for him now, but when it is, the council (via a social worker) will allow give you a set amount a week to employ your own carers. It may seem a bit like something an old person would have but lots of younger people use them to employ younger people like them to take them swimming, to the pub, whatever they want to keep them engaged socially and give their spouse or other carers a break.
You sound like you're all coping wonderfully. Take any help that's offered, from parents, friends,social services, it'll help in the long run x
24/09/2014 at 16:51
Babylonglegs, Thank you, Personalised Budget is something I will bear in mind for the future, this must be what a friend has (she had a stroke when pregnant at 30). Social services have been awesome. It is often the simple things that make the most difference, like grab rails in the house and a raised toilet seat. Our local authority is pretty good and as he in receipt of PIP he can go to a Leisure centre with a hydrotherapy pool free of charge. I am fortunate with a good support network of friends. I am hoping a friend can have our son when H goes to Papworth over night in November. It was not great travelling daily back and forth when he was in last time. I am beginning to learn that people genuinely want to help and I can't do everything myself.
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