DLA and 'complicated' illnesses

Jo_King

If you have a ‘complicated’ illness (what someone on here described as a non ticky box), like Chronic Fatigue or Fibromyalgia or Lupus, how do you explain the nature of that to DLA?

I’m currently just holding onto work. I work part-time, but I have a very limited amount of energy each day, and a limited amount of time when I can put a ‘brave face’ on my pain levels. That means that, at the moment, I can manage either work or mobility/personal care. I mean that quite literally. If I work, I don’t cook a meal – I can barely move in the evenings. I will not see a doctor unless I have 2-3 days off (to recover from walking in and out of the surgery). Work or not, I can’t walk any distance, fall over, have transient collapses (from another lovely chronic condition), and have a lot of pain. When I’m out of energy, it’s not just a sensation of being tired – it’s a complete turning to water exhaustion.

I want to work – it makes me feel less isolated. It seems like catch 22. My last DLA appeals panel said that, because I can manage work, I must be able to manage mobility/personal care. And if I didn’t CHOOSE to work, I wouldn’t need help with mobility/personal care. If I give up work, so as to better manage mobility/personal care, I won’t get ESA, because if I’m managing mobility/personal care, they’ll assume I should be able to work.

I’ve another DLA appeal coming up. I don’t know how to explain things – if I say ‘if I give up my job, I will be able to mobility’, they’ll assume I don’t qualify for DLA. What to do? How do you manage if the nature of the thing you’re trying to live with doesn’t fit with DWP’s checklist?

TOBRUK

Hi Jo_king, I know how you are feeling believe me as I suffer with M.E. amongst other things! I was working fulltime but then gradually I had to go part-time where I was literally going from bed to work and back to bed just to be able to manage! Eventually I deteriorated to the point that I am unable to work and almost housebound.

the DWP has nothing to do with DLA and ESA eligibility has nothing to do with whether you receive DLA or not. The DLA panel was wrong to say what they did to you as some people on DLA do work.

I started to receive DLA mobility component while I was working but now I receive both components. I have in the past been to two tribunals (and was successful)so I know how you are feeling.

I don't quite understand what you are saying here:

I’ve another DLA appeal coming up. I don’t know how to explain things – if I say ‘if I give up my job, I will be able to mobility’, they’ll assume I don’t qualify for DLA. What to do? How do you manage if the nature of the thing you’re trying to live with doesn’t fit with DWP’s checklist?

If you are struggling with holding a temporary job because of your illness then this is what you should say - say it as it is, and also WHY it is difficult. The pain you endure etc.

Have you/do you see your GP regarding your illness (is it M.E.?) and does he/she know your difficulties and all about the pain? I am on medication to help with the constant pain that I'm in and it does help. You should keep your GP up to date - my GP requests I see her once every 6-8 weeks about my condition!

As you have another DLA appeal coming up - is it a tribunal? When you applied for DLA were you turned down completely - i.e. in your award letter, did they award any rate of DLA at all? Also, in the award letter what did they state were the reasons (in either mobility or care) that they felt you weren't eligible for either care or mobility? Is your GP aware of your struggle to work? In the end my GP told me that I couldn't work.

In the appeal you have to tell them why you disagree with their reasons for not awarding you - which they state in the letter. Your appeal is based on your application form so read your application form and look at your answers.

Indie_Kid

Jo_King wrote: »

My last DLA appeals panel said that, because I can manage work, I must be able to manage mobility/personal care.

This makes no sense at all. There are people who can work with adapted computers; but they can't cook a meal or read their personal mail.

And if I didn’t CHOOSE to work, I wouldn’t need help with mobility/personal care.

How does that work? I'm visually impaired. Whether I work or not, I still can't cook a meal for one without help and I still need help taking medication.

Jo_King

Thanks for your replies.

I see my GP monthly - I have FMS, neurally mediated hypotension and depression. My GP is supportive, but hates the benefits system because he thinks it's politically motivated. My physio and consultant are supportive of my application, as are local CAB. I have thought I'm not eligible - in fact I put off applying for 8 years - but when I collapsed in the middle of a car park, and couldn't move, it was kind of a turning point.

I've been turned down outright. The decision was based on an ATOS medical which contains outright lies - apparently I manage 80 people in work (I don't manage any), work full time (when I work part time) and have no adaptations in work. The doctor then states that, since I have so much responsibility, I can't be limited by my illness. He also says I have no heart condition (he was holding a letter from my cardio consultant). My physio spluttered his way through reading it, and is writing a response.

I can honestly say that if I didn't work, I'd be better able to manage my care needs (I don't know if it'd make much difference to mobility). That is the nature of fibromyalgia - you manage each day out of a very limited pot of energy - and I just don't think DWP get the complexity of that.

TOBRUK

Jo_king, I understand completely and you could be describing me

Don't give up - I too didn't apply for DLA for a long time as I really felt that there were other people a lot worse than myself and also I was in denial and thought it would just go away!!

If you are struggling at work so much you really should tell your doctor. I made my illness worse by trying to push myself, it was truly awful.

My illness is very similar to yours in many ways and I managed to get DLA so don't give up. In the past I have been to two tribunals and I was successful.

With regards lies that the ATOS doctor wrote I'm glad that someone is writing a response. You should show your GP and consultant what that doctr wrote and ask them to write a report stating that it is wrong - then take copies f the letters with you to the tribunal.

black_paw

i have just renewel my dla i have fibro and chronic cervical spondylosis ,deaf..Gp said cant work at all .having been written off by hospital as no more they can do ect ,ect. i have just re-newed the DLA form ..like total new claim ( no hospital appointments showing as year before )after been getting lcr +hm last few years, for them to turn it down in letter today , and in other letter money for taxi to medical (different thing) as can't use public transport ! don't know to laugh or cry ...i will appeal which can take 6-7 months ..but i need the badge for parking for shopping , and i pay out for people to help me in the home ...bar humbug !

Cotton_wool_katie

As a fellow dla/esa tribunal goer! Due to CFS/ME, depression etc etc etc. I know how you feel and it is so disheartening.
If you havent already get in touch with your local welfare rights they can help you and represent you at the tribunal / appeals. They can also fill forms in with you
hth

sunnyone

Many conditions dont tick the boxes for DLA, thoses that do are the minority and even those are going to have a harder time at renewal or when the compulsory medicals comes in (whichever comes first)

In many ways Ive been lucky and I only claim DLA for the injuries from my accident because that happened at a certain time, on a certain day, in a certain year and I can prove that I was relitively ok before the car hit us, claiming for my life long disabilities would have been harder I believe but since I havnt done it I cant swear to it.

GlasweJen

I don't know much about the ME side of things but if you've got NMH they will only account for care needs arising from it if you're collapsing more than twice a week without any warning.

I have neurocardiogenic syncope, uncontrolled and no warnings (it's fun isn't it?) but mine arises from a form of dysautonomia which is associated with my ethnicity so lots of complications. Before when it was just the NCS I got middle care low mobility because I was collapsing a few times a week with no warning, get the same rates now but I'm hearing impaired, have problems standing up (but once I'm up I'm fine) and problems with using the toilet.

You can get support with blackouts from a charity called STARS (syncope trust and reflex anoxic seizures) which is sistered with the arrythmia alliance, they put me in touch with a fellow NCS sufferer in my area and it's nice having someone who can sympathise with the fainting, a lot of people think it's just a faint and that i'm being a drama queen - i wish i was lol.

ETA I work full time just now, it was a bit weird come renewal but I just explained that I'm never alone at work (or at least shouldn't be) and work have first aid trained 3 of my colleagues so that theoretically I always have help at hand should I need it.

[Deleted User]

sunnyone wrote: »

Many conditions dont tick the boxes for DLA, thoses that do are the minority and even those are going to have a harder time at renewal or when the compulsory medicals comes in (whichever comes first)

In many ways Ive been lucky and I only claim DLA for the injuries from my accident because that happened at a certain time, on a certain day, in a certain year and I can prove that I was relitively ok before the car hit us, claiming for my life long disabilities would have been harder I believe but since I havnt done it I cant swear to it.

it really is scaremongering to imply that people will have a harder time at renewal and or when medicals come in in 2013

TOBRUK

black_paw wrote: »

i have just renewel my dla i have fibro and chronic cervical spondylosis ,deaf..Gp said cant work at all .having been written off by hospital as no more they can do ect ,ect. i have just re-newed the DLA form ..like total new claim ( no hospital appointments showing as year before )after been getting lcr +hm last few years, for them to turn it down in letter today , and in other letter money for taxi to medical (different thing) as can't use public transport ! don't know to laugh or cry ...i will appeal which can take 6-7 months ..but i need the badge for parking for shopping , and i pay out for people to help me in the home ...bar humbug !

I'm so sorry that you have just been turned down black paw. Have you thought of writing a letter and ask them if they would reconsider their decision (as it states in the award letter that you can write if you disagree - within a month of date on letter) as you have nothing to lose?

This is what I did a year ago and within 3 weeks of me sending a very long letter I received a reply stating that they had reconsidered and was awarded a higher rate than I was on previously! If you aren't successful you can always go to appeal.

With regard a Blue Badge (I know how much it is needed as I have great difficulties walking on my best days!) have you considered asking your GP (as your GP knows your difficulties) to support your application for a blue badge as you can get one even if you are not in receipt of DLA.
Don't give up and good luck.;)

GlasweJen wrote: »

I don't know much about the ME side of things but if you've got NMH they will only account for care needs arising from it if you're collapsing more than twice a week without any warning.

I have M.E. and I get care and mobility DLA, so they must account for both GlasweJen regarding this illness - I suppose it depends on severity. As we all know, DLA is based on care and mobility needs and not on diagnosis so I suppose you can't tell how they look at this when they make their decision!

Cotton wool katie, it is disheartening and it takes so much effort and energy (mentally and physically) which you haven't got to bother to fight back! Wishing you well and hope you succeed.;)