Dla and care allowance: Dla ... I'm... - Asthma Community ...

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Dla and care allowance

21 Replies

Dla ... I'm stumped with how these people make their decisions on who gets awarded it and who don't ... Some on auk have been awarded and quite rightly so .. Yet some are mobile and doing sponsored walks while others who are confined to wheel chairs are being turned down are losing it after the review process ... It really is an unfair system

21 Replies

Terrible isn't it. And people who are desperately in need of that support to be able to actually get out at all are being denied it :(

I don't understand it at all .. I was given it for 3 yrs then when I reapplied I was turned down ..yet was rose then I was when I first had it ... I am nt as poorly now but never understood te system

DLA seems to be assessed by regional DWP offices. I'm not entirely certain about the level of consistency shown! It's draining to keep appealing let alone filling in the initial forms.

Part of the care aspect of DLA includes the level of help you need with meds and night time help. Personally, night time is always the worst for me so even if I have a good day I can have a rotten night and don't know how I would manage without my families help then.

I also get help with making sure I take the right things at the right time as brain fog sets in and I can end up missing some meds and taking others twice.

For myself, my DLA also covers other health aspects that can actually be more disruptive day to day.

I did ask a lady at my local CAB by phone for help When initially applying for DLA but gave up on that when she told me she had asthma AND an inhaler and SHE didn't feel the need to apply for DLA.

There was a really good article in the Guardian with stats for each condition receiving DLA. Asthmatics were a reasonable sized recipient group so we are definately not a handful of cases needing help.See link below for those like me who get excited by tables and stats.

guardian.co.uk/news/datablo...

Thomass_mum profile image
Thomass_mum

Just thought i would add.... my sister has serious liver disease struggles daily, uses a wheelchair and she was turned down, she went through the appeal process still turned down yet took it to tribunal and didnt even have to say anything before she went in they had already decide to give higher mobility and higher care based on the information they had all along! It seemed in her case as she didn't fit the boxes (her illness is unusual for her age) she was automatically turned down. It does seem a bit hit and miss whether or not you get DLA :(

I think its difficult to judge the fairness or unfairness of DLA based on people on the forum. We don't know each individuals circumstances inside out, and we don't know what is written on the forms that are sent in.

Many people seem to think they are eligible (and Im NOT talking about specific folk on here) just because they 'struggle' or have pain. I've heard folk say they struggle to get out of bed in the morning, and yet they have been turned down for DLA.. DLA is very specific, it relates to needing help with personal care needs (washing, dressing, eating, meds, and supervision) and mobility.

In my case I have struggled for most of my life with my lungs and pain, but I was still mobile enough not to be eligible. I was pleased about that, its not exactly a club I was desperate to be in LOL. I applied just before christmas, and was awarded high rate of both, without them even contacting my GP or Consultant. I don't view this as unfair, I had support from a disability organisation to complete the form (I was leaving stuff out and not being specific enough) and sent around 20 pages of supporting information, clinic letters, diagnosis etc. I was also very clear that my GP and Consultant were supporting the application. I might add, it wasn't just asthma related, but of course the mobility bit was related to my lung function.

I also measured my walking distance and speed accurately and added additional information - like some days I can walk slowly, and some days I am in a wheelchair. So many folk who fill in the forms guess at this, or simply say they cant walk when they can, and I think all this does is raise eyebrows.

The appeal / tribunal process is there for a reason, and whilst its a pain, like everything else it does give you an opportunity to state your case in person.

More fun soon when it changes to PIP... ;)

in reply to

I think its difficult to judge the fairness or unfairness of DLA based on people on the forum. We don't know each individuals circumstances inside out, and we don't know what is written on the forms that are sent in.

Completely agree.

We always say that we can't offer medical advice on the forums because even those members who are medically trained can't diagnose someone they can't see and don't know the medical history of.

The same must also be true of lay-persons attempting to determine whether members are entitled to DLA or not!

Some posts here on the boards have been really quite judgemental of late. The moderators will not tolerate this unwelcoming behaviour, as it contravenes a number of the T&Cs of posting here. Please think before you post, and if you think your post could cause offence, click ""Cancel"". Thanks.

interesting stuff moonminmama, its be really interesting to know what % of those disgnosed with each condtition were eligible (would help with this discussion, notsure it fulfils the aims of the article) i wonder what sorts of skin disease would cause such significant problems? is that just me being blonde. i also wonder if asthmatics are more likely to have to appeal as many view it as a diseas cured withna blue inhaler, or the same as being unfit!

Soph, a friend of mine's daughter has epidermolysis bullosa (think that's how you spell it), commonly called EB. They are called butterfly children and the charities symbol is a butterfly because these children have such fragile skin that a mere touch can lift the skin from a huge area. It is a horrible horrible disease, terribly debilitating and the children permanently have significant wounds and terrible scarring causing restricted mobility, eating/swallowing problems.

That's the only one I know of.....her daughter gets full allowance and needs 24/7 care bless her heart...but I'm sure there are many more.

in reply to

Soph, a friend of mine's daughter has epidermolysis bullosa (think that's how you spell it), commonly called EB. They are called butterfly children and the charities symbol is a butterfly because these children have such fragile skin that a mere touch can lift the skin from a huge area. It is a horrible horrible disease, terribly debilitating and the children permanently have significant wounds and terrible scarring causing restricted mobility, eating/swallowing problems.

That's the only one I know of.....her daughter gets full allowance and needs 24/7 care bless her heart...but I'm sure there are many more.

thanks FeeJay - i assumed there must be something i'd not heard of (i knew a girl with pretty severe excema but it didnt cause her too many problems) Poor Kid, such a shame.

yaf_user681_15459 profile image
yaf_user681_15459

In our experience, the best thing to do when applying for DLA is to include as much medical evidence as possible; consultants letters/test results/prescription counter foils/hospital discharge notes, as supporting evidence.

These items are proof as to the effect that Asthma has on your life whereas simply writing it on a form is subjective and relative to the individual. All people, both those writing the forms and those assessing them will interpret a condition in different ways. To include supporting medical evidence is proof.

Just thought id like to jump in here as this post has upset me. It mentions some getting dla and doing sponsord walks. One would only assume in recent time with me having posted about these that it was about me.

Can i just say wen i done the sponsored walk, i had both crutches and a wheel xhair to help me through it as well as having nebulisers regularly. Inalso had to inform the local emergency services of this walk.

With regards to dla, i got it bcoz i need crutches to walk as i have steroid myopathy which may i say is completly horrible and is a result of my asthma.i also need my mum to often cook, clean and wash my clothes and me because i pusixally cant so it through breathlessness and muscle weakness. Not long this but my mum also has to do a lot of my medication because im so poorly and exhausted most of the time.

I know i shouldnt have to justify myself to people but i dont think things should be said without knowing the full picture.

I not only have asthma, but steroid myopathy plus osteporosis plus cataract. And much much more. That is why ive been awarded it. And it took me 2 years, 7 claims and a tribunial to fight for whats right.

I wish i didnt need dla, i would much rather be the fit and healthy person i was 3 years ago before all this happend. But sadly life hit hard.

As they remind us, we control asthma not asthma control us...we can still have a life whilst being on dla.

Sorry for the rant but i felt it was needed to justify my corner. Oh and the money was for AUK itself so a good cuased to help find a cure for this nightnare we all live with!!

in reply to

Just thought id like to jump in here as this post has upset me. It mentions some getting dla and doing sponsord walks. One would only assume in recent time with me having posted about these that it was about me.

Can i just say wen i done the sponsored walk, i had both crutches and a wheel xhair to help me through it as well as having nebulisers regularly. Inalso had to inform the local emergency services of this walk.

Well done Charlie in having the stubbornness - I mean fortitude LOL, to complete it. I get high rate of both, and yes if I had my nebuliser, wheelchair, husband along side me and endless hours to do it, I could also complete a sponsored walk. But I was very honest on my DLA form, and was awarded both, first time.

Im still not entirely comfortable with getting it, I have worked all my life until 4 years ago (can no longer do so because of health) and it feels alien to me. And the judgements of others who don't know me or my circumstances don't help - I don't necessarily mean on here, I mean when people see you in a wheelchair, or using a blue badge etc. Its not a 'club' I ever wanted to be part of.

anyways, well done you, and I guess my previous comment still stands...

""I think its difficult to judge the fairness or unfairness of DLA based on people on the forum. We don't know each individuals circumstances inside out, and we don't know what is written on the forms that are sent in"" - and actually, its NONE of our business!

Lynda :)

Asthma-girl profile image
Asthma-girl

Well done Charlie-Warlie on your sponsored walk.

in reply toAsthma-girl

Well done Charlie-Warlie on your sponsored walk.

Hear hear!

On a similar note, here's a story of another forum member (who hasn't posted for years, though) achieving something spectacular - and yes, there is a picture with me in it further down the page:

kineticlifestylecom.wordpre...

No-one here should make such judgements or assumptions without personally knowing people and their individual circumstances. Many vary day to day with what they can manage to do. Also, some people can manage such events despite mobility issues e.g. in a wheelchair, with crutches etc or with medical backup but may struggle particularly afterwards.

I don't dispute at all that there is variable decision making about DLA which is unfair - but so are such sweeping statements. The DLA assessors can only work with the information in front of them. So as others have said, include as many letters and specific backing evidence as possible. For anyone considering an application who could be put off, please persist. It is not easy and is completely understandable that needing this may not sit comfortably.

Moominmama, thanks for the link - interesting reading.

Some posts here on the boards have been really quite judgemental of late. The moderators will not tolerate this unwelcoming behaviour, as it contravenes a number of the T&Cs of posting here. Please think before you post, and if you think your post could cause offence, click ""Cancel"". Thanks. Agree 100%. I wish to reiterate that this forum should be a safe and friendly place to go for advice, information and support. No-one should feel they have to explain or justify their situation.

Good on you Charlie_warlie for managing the walk.

anyways, well done you, and I guess my previous comment still stands...

""I think its difficult to judge the fairness or unfairness of DLA based on people on the forum. We don't know each individuals circumstances inside out, and we don't know what is written on the forms that are sent in"" - and actually, its NONE of our business!

Lynda :) Well said.

Have a good weekend everyone, take care and hope lungs behave!

TJ

They seem a law to themselves and quite often people only get it after having to fight for it ..lets hope in April when things change they change for the better although i doubt it x

yaf_user681_30355 profile image
yaf_user681_30355

Congratulations Charlie-Warlie on completing your sponsored walk! xx

And Peaksteve, loved the article, some people are so inspirational!!

Annista profile image
Annista

I have read these posts with interest because it is such an emotive issue. I am not, thank heavens, unable to work or in need of financial support but I did go through a 6 month period many years ago when my breathing was so bad that I couldn't walk across the room without having to lie down so I have a small amount of insight into the difficulties of day to day living with severe asthma and how the things that most of us do without thinking, such as getting breakfast or washing a few dishes, suddenly become enormous challenges that can take stupid amounts of time to complete. I can't imagine how much more difficult it becomes when you're living with it for years but I understand how much difference some additional cash could make.

I understand that money is in short supply and that someone has to draw a line somewhere but I'm wondering about how they do it. This is only curiosity and it may be something that annoys you big time so I won't mind if nobody answers, but do you just get a statement saying you're not eligible? I was just thinking that knowing why your application had been declined would not only give you a starting point for a appeal but also provide evidenced that the application had been properly assessed. Or not.

Having read Charlie-Warlie's post, I would like to congratulate everyone who has managed to complete any sort of physical challenge in spite of their medical condition. I very much doubt if I have what it takes to do the same so I think you're all stars.

Oh Lordy, I'm rambling now - sorry!

I'm with Annista on the congratulations - well done Charlie, and Peaksteve, that is also an amazing story! I don't even have severe asthma and wouldn't have thought of doing any variety of marathon (to be fair, wouldn't have considered it without asthma either...).

What an inspirational story Steve. What Nicky and Charlie have achieved with brittle asthma is amazing and something I truely admire. It really puts things into perspective for me.

Thank you all so much for ur support. And thanks for posting other inspirational stories. What we all need to rememeber is asthma is just what makes us who we are, not dictate what it is we do!!

Xxx

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