Disability living allowance urgent help please!!

bubbles2012_2

Hi guys,

I'm not sure if I am in the right place, or even if anyone can offer any advice, but I will give it a shot as you all seem to be full of knowledge! Lol!

Okay, apologies for this being long, I'll break it down as much as possible!

Basically, my 32 year old brother applied for DLA and was declined! I am absolutely fuming, as without being biased, he honestly does deserve it.

He has a condition called Facial Hemangioma and for those unaware of what it is, it is basically blood filled benigne tumours, he has them on his face, neck, and upper lip. He was born with this, so it is not somthing that just happens. The tumours that have gotten worse over the years have now not only formed in his neck, but down the back of his tongue, down his throat, and in turn that has left him with sever obstructive sleep apnia.... He literally stops breathing, not now and again, but this happens almost every minute. He hasn't had a good nights sleep in the last couple of years, so his body es exhausted. He 'sleeps' all the time, but doesn't 'sleep' if you know what I mean, so therefore he literally falls asleep, standing up, sitting down. His body is completely exhausted. He falls out of bed, stands up in his sleep,and just falls forward to the floor, in to things etc...his body is just trying to unobstruct his airway when hes asleep and automatically wanders... if that makes sense! He has hurt him self many times doing so, so not only does his condition itself pose risks, but him falling and doing some serious damagedd does too...One wrong fall and aknock tooneofthetumours, is quite bluntly, lifethreatening. He can't cook for himself, as the risk of him falling aslepp with a knife in his hand, or cooker left on doesn't bear thinking about. He can't walk far as he gets out of breath quickly and requires one of us to look in on him all the. Which we don't mind doing at all, but it's frustrating for him, He's 32... shouldn't have to live this way, but it is what it is.

He hada sleep test done two years ago at Portsmouth Hospital and his oxygen levels were at dangerous lows. Unfortunately in the short term there is notmuch that can be done, the Modifinal medication he was given to help keep him awake does not work. He hasahospital appointment with his consultant in 2 weeks, where they are going to talk about his third operation (he had two as a child to his lip)Only this time it willbe to 'protect his airway' as they put it,as that is their main priority at the moment, Meaning a tracheotomy. its gonna be a long road, but it needs to be done.

Anyway, why I am so fuming is because today we found out onthe telephone that DLA have declined his application! I do not understand this whatsoever, the form was filled in correctly and sent off inNovember.... we were told that the GP said in his report that he had 'mild Hemangomia' There is absolutely nothing mild about it, and that is not just me being biased as he is my brother..... the most frustrating thing about it is it was filled in by a GP that has NEVER seen my brother at all (but the head of the surgery) They did send a request for information to his consultant and Chelsea Adn Westminster hospital in London, but made their decision on the letter from the GP and their own doctors..... I find this completely unfair and if they had of waited for the report to come back from the hospital, who would, without question back him 100%, even his own GP would have explained how bad it is....But they go with a letter from the Head Practicioner who has never examined, ir seen him....I don't find this right at all. I understand that this isn't your average case, yes, people have this condition all over the world, but the severity of my brothers is extreme..... Has anyone any advice.... as small as you think it may be.... or anyone been declined DLA and the best road to go down?

I'm sorry for such a long post and any errors in the spelling/grammer that may be present in my angry typing! Or rambling... To be honest, I didn't know what info to give! Lol!

I just want my brother to get what he deserves, he isn't some benefit scrounger, he truly does deserve this

Thanks for reading guys

xx

Notmyrealname

Whether or not he gets DLA is based purely and solely on care and mobility needs. If he can dress himself, wash himself, use the toilet, cook a meal then he's not going to qualify. If he can walk more than a couple of hundred feet he is going to struggle.

Appeal the decision. If you think you should have included more detailed information then send it. The reason many deserving people get refused is because when filling in these forms they think they don't need to put something down because they can still do it even though its a struggle or because of personal pride and not wanting to admit it.

MrsManda

He can appeal but the best thing to do first of all is to ask for a statement of reasons which will give you all the information which they used to make the decision.

The reason he's been turned down is likely to be due to the GP report as the GP is considered to be the 'gatekeeper' in the the NHS so should have access to all the relevant information.

In all the GP practices I have been involved with letters requesting information go to the patient's named doctor, which is not necessarily the one they see most regularly. The purpose of this is to try to distribute the workload so one doctor doesn't end up getting requests to write reports, repeat prescriptions etc... for everyone and allows one person to be the point of contact for other professionals relating to each patient.

The easiest way around this is to see the named doctor. If you don't like the named doctor you can request that you are put the list of the doctor you see most regularly so all requests for information go to him.

Hopefully someone with experience of the appeal/reconsideration process will be along soon to advise you.

As the previous poster said it may also be that your brother/whoever filled out the application didn't put in enough information. I definitely recommend writing a diary for a week or so listing everything care/mobility related he has problems with so that nothing is missed when filling out the form.

bubbles2012_2

Thank you for your reply NotMyRealName

Technically he can bath himself, but someone needs to be outside the door and talk to him randonly in case he falls asleep in the bath. He can dress himself, when he's awake to do so! It's really frustrating, we thought that we filled the forms in pretty well to be honest, but maybe we didn't. Pride is a downfall with him, the last thing he wants is to be seen as having a disability and he does dumb everything down, even to us. But we know better and know how bad it is, which is why my mum filled the form in for him. We didn't exaggerate on any of his symptoms, just described his day to day life and the issues he faces, no day is worse than the other, they are al the same. He can walk, but he gets very short of breath after about 20 feet, as the tumours are pressing constantly on his airways. I do appreciate your help and we will appeal. The frustration generally stems from knowing that his consultant would back him, and his own GP, but they made their decision on the basis of their own Doctors take, and a GP that has never seen him, If he had been examined by a DLA Doctor, Im pretty sure their decision would have been different, but you dont know do you! xx

bubbles2012_2

Hio MrsManda

Thank youa lso for yoru reply, I was sceptical about anyone even taking the time to read my ramble, let alone replying, so I do appreciate it very much!

I didn't even think that the GP that filled the form out would have done so, as onthe forms when asked for his DR information, we gave a different DR (Being the one that sees him and knows of his condition) But I do understand the points made about distributing the workload etc... Seeing the Dr, may be the way to go. I do hope that it gets somewhere, you made some very good points xx

rogerblack

A quick skim.

bubbles2012 wrote: »

The tumours that have gotten worse over the years have now not only formed in his neck, but down the back of his tongue, down his throat, and in turn that has left him with sever obstructive sleep apnia.... He literally stops breathing, not now and again, but this happens almost every minute. He hasn't had a good nights sleep in the last couple of years, so his body es exhausted. He 'sleeps' all the time, but doesn't 'sleep' if you know what I mean, so therefore he literally falls asleep, standing up, sitting down. His body is completely exhausted. He falls out of bed, stands up in his sleep,and just falls forward to the floor, in to things etc...his body is just trying to unobstruct his airway when hes asleep and automatically wanders... if that makes sense! He has hurt him self many times doing so, so not only does his condition itself pose risks, but him falling and doing some serious damagedd does too...One wrong fall and aknock tooneofthetumours, is quite bluntly, lifethreatening. He can't cook for himself, as the risk of him falling aslepp with a knife in his hand, or cooker left on doesn't bear thinking about. He can't walk far as he gets out of breath quickly and requires one of us to look in on him all the. Which we don't mind doing at all, but it's frustrating for him, He's 32... shouldn't have to live this way, but it is what it is.
<snip>
(the form) it was filled in by a GP that has NEVER seen my brother at all (but the head of the surgery)

First, phone up today, and get a 'written statement of reasons'.
This both will give you more information about why you were not granted benefit, and give you an extra 2 weeks to appeal.

See if you can make a 'double length' appointment with the GP to see them about your care needs, and perhaps get them to sign a letter outlining the case.
It is quite normal regrettably for GPs who have no personal knowledge of you to fill in the form based on your notes.

http://www.dwp.gov.uk/docs/dmgch61.pdf - is the 'decision makers guide' to DLA.
It's a bit of a slog, but after reading the relevant bits a couple of times, you get a much better idea.
http://www.disabilityalliance.org/f23.htm, http://www.disabilityalliance.org/dlalaw.htm too,

In short, my current understanding is:
Care component - clear case for low-rate care - as it seems unlikely that most days he can safely prepare a cooked meal from ingredients.
Mid-rate/high-rate - both on 'attention throughout the day' - and 'continual supervision due to risk' seems likely.

Low-rate mobility - again - due to being unable to go outside alone safely with the risk of falling asleep.
High-rate mobility - possibly not.

If the sleep apnea will be fixed after the tracheotomy, then if his needs are solely due to this - he will not be eligible for DLA, if this is to happen within 3 months.
You need to have had any needs for DLA for 6 months, and for 3 months in the future.

Muttleythefrog

Agree with sound advice above. Sounds like a likely case of unsupportive GP (frustrating it may not even be a report completed by regular GP seen). I've always said DLA is so hit and miss... I think from what is said that I would follow roger's advice. Request statement of reasons and a copy of all evidence they used to make decision (which may well simply be your completed form and the GP report form they requested to be completed). Then probably appeal... and try to get any supporting medical evidence you can.. the tighter to the DLA criteria the better.

I am a little concerned that my application in November may also get a GP report completed by previous GP rather than one stated on form - if that happens I'm doomed..lol.. he's the reason I'm re-applying and had to appeal. I presume they'll go to specialist first for report in my case.

Good luck!

Bigmoney2

Can he not get a cPap machine to be worn at night to enable him to sleep? This is used a lot by people with sleep apnea.

bubbles2012_2

Hi RogerBlack,

Thank you for your reply, you helped me understand a lot more!
The Tracheotomy is the 'first' stage, the hospitals main concern is to protect his airway on a planned operation. He sees the consultant next month, so wont know when this is to take place. Its quite complex, so many teams of surgeons etc need to meet and plan the actions. Following the tracheotomy, they are hoping to 'de bulk' but the positions of the tumours are risky, so in all honesty I cant really predict how long etc.... Will know more once hes had the appointment with the surgeons.
I will look at your links also, youre all being great at trying to help! xx

bubbles2012_2

MutleyTheFrog hiya, i think you may be right! The stories I have heard about people being declined/accepted by DLA unfairly are quite apalling! My mum wa telling me about her neighbour years ago who used to brag that she was claiming dla or her three boys on ADHD grounds, when only one had it legit! Says it all really! Fingers crossed that you are successfull in your claim, should hear soon if it was made in november

BigMoney

Unfortunately not, cPap was tried in 2009 but had the opposite effect, as it gave extra pressure to the tumours, so he couldnt breathe

Oldernotwiser

bubbles2012 wrote: »

He hada sleep test done two years ago at Portsmouth Hospital and his oxygen levels were at dangerous lows. Unfortunately in the short term there is notmuch that can be done, the Modifinal medication he was given to help keep him awake does not work.

Have they prescribed oxygen for him and, if not, why not?