Sunday 18 December 2011

DLA? Denied

This weekend has seen much justifiable outrage at the fact that disability rights activist Sue Marsh has been turned down for DLA.

But many of the comments I've seen seem to think this is an isolated incident of just one genuine claimant getting their application rejected. In fact, according to the table on page 14 of this DWP report from March 2011, in the 2009/10 year 36,000 people appealed their decision and 14,000 people had the decision overturned.

That's 14,000 vindicated Sues per year.

And then there are those who decide not to appeal because they don't have the strength to fight, because they don't have sufficient self-confidence or because struggling on in poverty seems easier than dealing with the bureaucracy. According to the Minister for Disabled People (*cough*) Maria Miller on 6 Sep 2010; records are not available of unclaimed DLA. but it's worth reading the stats for other unclaimed benefits on page 2 of this DWP report. The rate of underpaid other benefits varies from 0.3% to 2.1%.

It's from 2004 so quite outdated, and only looks at unclaimed DLA/AA by people with one condition: Cancer. But this report by Macmillan suggested that at 2004 benefit rates that more than £126.5 million goes unclaimed in a six month period. And that's only people with cancer, and doesn't take any other "disabling" condition into consideration.

Sue's story seems to have shocked people because she put a human face to the real problems faced when claiming benefits. A human face that isn't a Daily Mail-ised version of a disabled person. To help people understand how widespread this problem is I'd really like to hear from more people with similar experiences.

If you've similarly been turned down for DLA despite being a genuine claimant in the 18 months since the coalition came to power, please post your story in the comments of this post. Thanks.

Huge thanks to @queerpup for unearthing statistics for me today. My Google Fu has decided to go on Christmas holidays a few days early.


  1. My DLA claim came up for renewal in June 2011. I've received DLA since 2005, having a review in 2008 where my award was increased to middle rate care + lower rate mobility.

    My main issue is dyspraxia, which in my case comes with a side-order of autistic traits, and auditory processing disorder. Along with this I have anxiety disorder, and have learned to live with daily panic attacks, which I get on with, but they're very tiring, and make everything else just that bit harder. I also have a herniated disc + get referred pain in both hips, and down both legs. Just because that's not quite enough fun (and my balance isn't shit enough with dyspraxia and a buggered back), after a virus a couple of years ago I developed intermittent (but persistant) vertigo, which waxes and wanes. On top of this I'm regularly coshed by sleep attacks, which feel like I've been sedated, and are about as hard to resist. The most recent theory from my GP is some kind of sleep disorder. Oh yay.

    So my hazard perception is awful, I can't judge speed or distance, I wobble when I walk, crash into things, fall off the kerb into the road, step out in front of cars (and buses) and have narrowly avoided being run over more times than I can count. I have been run over once, walking home from school I stumbled into the road, and a car went over my foot. Needless to say, I've been found medically unfit to drive!

    I do cook, because I have to, but I frequently bugger it up - burning food, tea towels, or myself.

    My back goes into spasm when I sit on the loo. When I stand for a couple of minutes. When a cold breeze blows past. When I cough or sneeze.

    I trip over - up stairs, onto the train, over kerbs, across lintels.

    I wake in the night in blind panic and need to rush outside for air.

    I lose speech when I'm over-stimulated by my surroundings, or when I'm panicky, or when I'm over-tired, or when my brain has just had enough. And my ability to understand speech is always a little impaired. In background noise it's poor, and out in the wider world it's rubbish. Plus my working memory is so fragile I can't write something down before I've forgotten what's been said to me.

    But apparently, even though I qualified for DLA on those grounds twice before, the law no longer deems me requiring of support. The government thinks this is all fine, and I don't need support from anyone for any of this.

  2. Last year I applied... and was turned down after an ATOS assessment. I have both Lupus and Fibromyalgia (plus most of the other conditions that comes along with it and side effects from medications) I basically don't have a life any more because of the constant pain and fatigue. I happened not to be having too bad a day when I was assessed and the variability of the conditions didn't seem to be taken into consideration at all - the assessor just seemed to be asking me questions to catch me out. So I appealed and requested to go along to the tribunal. They didn't bother to tell me the date it was going to be held on and so they had it without me and, unsurprisingly, the answer still remained no.

    I reapplied this year, had another assessment and now I receive higher rate mobility allowance. What a waste of money, and grief. It makes no sense at all.

  3. Medical details not included as they're confidential (despite what many Mail readers would wish). I have a neurological illness, and it's incurable.

    In 2009 I was receiving DLA at higher rate care, lower rate mobility. However, by the end of 2009, due to my illness worsening significantly, I could no longer walk. After realising I either called my GP for a home visit when I needed to see them, or I used my DLA to buy a wheelchair, I thought it best to buy a wheelchair. Great, now I can actually, you know, go to get medical support.

    I didn't want to inform the DWP of changed circumstances as I knew it would mean that endless b*stard bl**dy form, and detailing exactly how and why I couldn't wipe my own arse, for the readership of god-knows-who. But rules are rules...

    In May 2010 I filled out the endless b*stard bl**dy form, ever a period of weeks, with help. Did I mention that by this time my hearing and sight were going? Yeah, that too. But anyway. I included details of my GP and the specialist NHS services involved in my care, that I couldn't walk, needed help with eating, drinking, dressing, yes, wiping my arse, the works.

    In August I got the decision: you can walk, so you don't qualify for higher rate mobility.

    I should've left it, but I didn't because I hate to see unfairness go unchallenged. I could not walk. I had told them as much, and given them contact details for medical confirmation of this. Turns out they hadn't bothered to ask for it - they'd just said 'no'.

    I asked for a reconsideration. In October 2010, I received another letter. No higher rate mobility. Reason: you can walk... This time they'd asked my GP, but evidently that wasn't enough.

    I really, REALLY should've left it then. My claim was due to run until 2011 anyway... But the fact was that I still couldn't walk. By this time I couldn't see, hear or talk more than a whisper either, and was using deafblind manual to communicate. Requesting an appeal via an interpreter to a system that demands you use a phone and 'didn't receive' your last letter (every time) is pretty time-consuming, especially when you have to spell every word out by hand, letter for letter, and hope the interpreter is keeping up.

    November 2010. A letter from ATOS. We need to send a medical practitioner to your home to examine you, for your DLA claim. If you need an interpreter, please let us know...confirm by calling this number. But I can't use the phone, and the only address is the registered company address in London. So I dictate another letter, and send it to London. Will it get there before the appointment, scheduled for the week later?

    Nah. Doctor turned up, no interpreter, yelled at me for an hour, exclaimed in a disgusted fashion "years!" when I replied to her not-on-the-form question about how long I'd been on DLA (look up 'incurable', asshat). She asked about my church-going habits (presumably to check if I leave the house - I don't, but I do have a cross above my bed). She informed me that I was probably so sick because I have dreadlocks and they harbour headlice. She pushed the bottom of the bedcovers back and looked at the sole of my right foot. Then she left.

    A week later, a letter from the DWP: you are no longer entitled to DLA. You need no help day or night. You can use stairs unhindered. You can cook for yourself. You can walk perfectly well, unaided. I also received a copy of the ATOS medical: all of the above, and more - I am sadly mentally ill and controlling my friends by pretending to be sick. What's more, I am 'well-muscled' and able to communicate clearly (I spent the entire 'medical' under bedcovers, trying to hear her bellowing and trying to reply, failing and requiring a teacher-esque "speak up!" on more than five occasions)


  4. ...cont from above


    Like Sue, I really wondered at that point what the hell I'd done wrong, how the system could be so wilfully, deliberately wrong. Then I spent the next three months dictating via deafblind manual letter after letter after letter, to my GP, to my specialist, to ATOS, to my MP. My GP provided me with a letter clearly stating my diagnosed condition, the problems I have with mobility & self-care, and a detailed description of the adapted room I spend my life in. My specialist, after she'd hit the roof about the DWP's decision, provided me with a statement much the same as my GP, including details of the illness I have, how typical its effects on me are, and that yes, it's incurable. She also got a second GP to go through my medical notes - he too wrote a statement supporting my DLA claim.

    I sent them to the DWP. I asked for a tribunal. In the meantime, I asked ATOS why they hadn't bothered to send a deafblind manual interpreter. Apparently my request arrived a day late, and as the medical happened anyway there was no complaint to be made. Er...

    In March 2011 I received a letter from the DWP. My tribunal application was cancelled. They'd reviewed my DLA reward. I'd been given middle rate care, lower rate mobility. I need some help during the day, but not at night (er, my arse? Wiping? Getting me out of bed and to the toilet in the first place? Turning me over to prevent pressure sores?)

    I should've left it...I can never just leave these things, can I?

    I wrote back immediately, with the same three copies of the same three NHS medical reports. I asked why they appeared to be ignoring them in favour of the one highly unreliable medical undertaken by a company they'd paid, who had no access to my medial records and couldn't communicate with me properly anyway. I asked for them to send it right back to the tribunals service, because their decision was so obviously wrong.

    This time it only took until the end of April for them to inform me that my appeal had been cancelled because they'd reviewed my case (note how they can cancel the appeal without asking you? And it's 'independent'?). I had been given higher rate care, lower rate mobility - because 'you need substantial care day and night...and you can walk'.

    Go on. Guess. XD

    My MP was already well informed on my case, and when I sent him copies of the DLA decision he was very, very good. But I question why anyone who has perfectly adequate medical support documentation should need the support of an MP to get the level of benefit they are entitled to for their condition. I don't deny that I looked up how to get a (legal?) suicide at a clinic abroad. It turns out that, big pile of cash notwithstanding, I had enough medical evidence for that already. So, I have enough medical evidence to end my life, but not enough to satisfy the UK govt to support me in living, eh?

    June 2011, I finally, finally get the letter saying that I am entitled to higher rate care & mobility. For three years, so 'incurable' obviously doesn't mean to the DWP what it does to the rest of us, but eh. After a year of battling (try shouting in deafblind manual to someone still learning their way around it, heh), this crap is finally over. Until PIP...

    The whole process was a waste of DWP time & money, a cracking little earner for ATOS, and an awful humiliation whereby I was forced to send my medical records and extremely detailed descriptions of my daily life with illness to people whom...well, I thought medical records were supposed to be private. I shouldn't have to send them to my MP to qualify for DLA. God knows who reads them at the DWP.

    Unfair. The whole system is unfair, unclear, and deliberately constructed to cause sick/disabled people discomfort, to put us off.

  5. I had been receiving DLA at the middle rate for 2 years. I renewed my claim and was told that (despite my conditions being worse - one of them a degenerative and incurable disease - I did not qualify for the same rate. ?????

    I went to appeal, it was the most stressful thing I have ever had to go through, it was like having to go to court to prove your innocence. The woman on the team who heard my appeal didn't have an ounce of compassion in her. I was in my wheelchair, she asked me to get out to show how far I could walk, I stumbled and fell. I was in floods of tears, my 78 year old Mum who was with me was in floods of tears. She had to pick me up. They did nothing. But despite letters from my GP and Consultant's and my condition's being worse than before, my appeal was rejected.

    The whole process took so much out of me that I am now even more ill - two of my conditions are made much worse by stress.

    It is a hugely difficult benefit to get and I believe that they have now been told to make it even harder. They are heartless and have NO idea what it is to live with chronic painful an debilitating illness.

  6. I had been in receipt of DLA Middle Rate Care and High Rate Mobility for six years and then had a home assessment thrust on me, using an ATOS Assessor, and I was judged to be capable and not in need of the DLA I had been receiving and lost it all within a 15 minute visit from ATOS, my appeal is still ongoing. I also hold a lifetime award for Industrial Injuries Disablement Benefit and am also a wheelchair user. I fall under the following categories of Disability Definitions: Mobility Impairment, Physical Disabilities, Sensory Impairments, Mental Health, Learning Disabilities and Disabling Medical Conditions. In my opinion there is a concerted effort towards disability deniability and disability genocide against the UK Disabled Community by the Coalition, DWP and ATOS...

  7. Of a UK population of 62 million, 10 million identifying as disabled, 700,000 disbled children overall just 3.2 million are entitled (working or not) refer

    Of the 805,000 in reeipt of HRC required through £320pw of social care, just 20,600 receive support through the Independant Living fund, does this sound like equality ?

    On the topic of Cancer and DLA, the DWP is seeking responses to its (informal) consultation,

    A campaign to save the ILF can be found at and

  8. FYI

  9. I have a similar complaint to Sue's although not Chrons disease although the effects are very like it. Mine followed an operation for Diverticulitis which left me with bowel strictures which caused problems with controlling my bowels, and need personal assistance. I also through the condition which fluctuates weekly have times when I cannot stand from a few to several hours due to the impact on my bowels. I know many in the press have referred to claims made for piles and diarrhoea with laughter and dismissal, but believe me it is no joke and can be very painful and distressing as well as embarrassing, and not always something you can cope with, without personal attention.

    I had been on high rate care for 3 years. I too have now been thrown off DLA and have been told I will receive nothing. I am asking for a reconsideration before appealing but judging by Sues case I expect I will receive nothing.

    It is a very difficult disability in that you are virtually housebound with the need to be near a loo. It is also one which is embarressing to discuss if anyone asks what is wrong with you. And as for filling in the DLA forms which contrary to what the media infer are very difficult and you have to give really embarressing information and you do not know who is going to read it or in whose hands it may turn up.

    I can imagine someone sitting behind a desk somewhere has said that it will be quite easy to just disallow people with certain conditions from claiming DLA as part of the 20 percent reduction. It is quite clear that the Government no longer wants to help the so called 'most vulnerable' in our society. If you are no longer a productive member of society ie someone prepeared to do your daily stint as a wage slave then you cannot expect any financial help. Doesn't matter if you have worked all your life before you became disabled the here and now is the Government cannot afford to help the poor or disabled as it is too busy helping the Bankers and MP's.

  10. At the risk of sounding absurd, I have to wonder whether Sue would have had her DLA cut had she not been perhaps in the public eye?

    I wouldn't put this sort of thing, or anything like it, past this awful coalition.

  11. Government caught out on DLA statistics... again

    Serious doubts have emerged about crucial statistics used by the minister for disabled people to justify the government’s sweeping disability living allowance (DLA) reforms.

    Maria Miller was appearing this week before MPs on the work and pensions committee as part of its inquiry into coalition plans to cut spending on working-age DLA by 20 per cent and replace the benefit with a new personal independence payment (PIP).

    In her evidence, Miller twice stated that DLA spending had grown by 38 per cent over the eight years to 2010-11, as a justification for the government’s cuts and reforms.

    But the Department for Work and Pensions (DWP) has now admitted that this figure refers to total DLA spending, including payments to children and older people, even though only working-age DLA is being cut and reformed.

    The DWP told Disability News Service that the real growth in working-age DLA spending was only 28 per cent.

    But even this figure of 28 per cent is almost certainly too high, as it fails to exclude demographic factors – such as the general growth in the population – which the DWP has previously admitted is an important consideration in determining the true rise in DLA claimants.

    Miller suggested to the committee that demographic factors would remove a third from the figure of 38 per cent that she quoted.

    This could mean the growth in working-age DLA spending is as low as 18 or 19 per cent over eight years, rather than the 38 per cent quoted by Miller – but the DWP has been unable to produce the relevant figure.

    A DWP spokeswoman said the percentage increase for working age spending – taking into account demographic factors – “does not exist at the moment”.

    It is the second time the government has been caught using misleading DLA figures to justify its reforms.

    In August, the government claimed official statistics showed the number of DLA claimants had risen by 30 per cent over eight years, when the growth in the number of working-age DLA claimants – excluding demographic factors – was just 13 per cent.

    Dame Anne Begg, the disabled Labour MP who chairs the work and pensions committee, said Miller had been “evasive” throughout the entire evidence session.

    She said there were “concerns about the government’s use of statistics” and that Miller had failed to provide a “proper explanation of where this 38 per cent figure came from”.


  12. I have hypermobility syndrome - which was only diagnosed a couple of years ago. Before diagnosis I applied for DLA with general back and hip problems (approx 5 yrs ago) and was turned down - in the report it stated that I did not have scoliosis - suprising as its on every x ray ive had since the age of 14 when I was initially diagnosed!

    My condition and mobility have worsened and I decided to apply again for DLA and was awarded high rate mobility and middle rate care for 1 year. It took over 6 months for first medical assessment and within 4 weeks of receiving the award I was sent out new forms to fill in. I filled these in and since the original medical I am having more problems with one of my knees and my hands have started dislocating. I copied the info from the original form (which ide had help with) and added in bits about my knee and hands. The reply I received (without a medical) was that I had been awarded mobiliy indefinately - but that I was not going to get any care component at all! the reason stated on the form was that they thought Ide been awarded it incorrectly to start with?! I was going to leave it because I didnt want to go through the trauma of an appeal - but my partner lost his carers allowance because of this and was still caring for me - so he phoned up and told them all the stuff he does for me and asked for a reconsideration. The middle rate care was reinstated indefinately with no medical.

    To me this shows that in many instants the DLA/DWP try it on - they knew I was entitled to middle rate care and to state 'despite your condition being the same or worse than before we think you were lucky to get it the first time' is somewhat strange!!

  13. I had been on the lower rate mobility and higher rate care for nearly 8 years, during which I had applied once and renewed a further twice, each with the same result... Then, in February of this year, I was due for renewal again.

    Being isolated, and with great difficulty, I filled in the form that demands I tell some random strangers how absolutely crap I am, thus making me feel so much worse, because of my mental health issues. It took me months to get through it, panicking, depressed and anxious all the way. So long, in fact, that I missed the date of renewal by a week.

    When they assessed my claim, I was told that it'd been assessed by a different office as a new claim because I'd missed the renewal date, but would be assessed just the same as it would have been had I met the date (so, why the two offices and processes then, in two different locations?)

    I was awarded lower rate mobility and lower rate care, even though my condition had worsened since my last claim... with the galling remark that I could communicate effectively in my own time. Feeling that this was almost certainly in error, I asked them to look again... they came back with the very same award.

    I didn't appeal, owing to the fact that my condition would not allow for me to represent myself in a tribunal - I wouldn't have been able to put myself under that pressure. Instead, having dropped straight from the higher to the lower rate and losing my Income Support as a result, it resulted in homelessness. I'm still trying to pick up the pieces even now.

  14. I claimed DLA for the first time, after being in and out of the care of the community mental health team since age 11. For the last 6 years I've been under their care constantly. I regularly see my social worker, and have regular care...because I struggle. I was denied DLA this week. I don't have the energy to fight it. Mental illness has destroyed my life. Work, relationships, physical health, everything...and this is just a further kick in the teeth.

  15. Mines just been denied after 8 years on HRM. This time they cited evidence from the medical examiner who supposedly examined me for ESA last yr. I wonder who that was as I didn't have an ATOS medical and nobody examined me. In for reconsideration for all the good it'll do then appeal.

  16. You can contact Ms Miller in her capacity as Minister for the Disabled (odd title for this woman I can think of better ... answers on a postcard)via this site
    Tell her what you really think as she seems totally ignorant of the plight of the disabled

    1. Maria Miller is n ot only ignorant on the plight of disabled people, SHE DOES NOT CARE. If you contact her you will come up against a beaurocratic brick wall.

  17. I have had severe asthma for 30 years now, it seemed to develop after my first child was born, though the local doctor claimed I had come to the wrong county and was clearly allergic to the countryside?? never the less I have suffered quite badly but never qualified for DLA as I could walk a few yards more than I should do to qualify. However over the past 6 years it has beoome so severe that I had to give up full time work and now only work from home. After being assessed at the hospital and explaining that it controlled my life it was recommended i apply again for DLA, I qualified this time on the higher rate for 3 years and have just re applied only to be turned down this time.despite having to use a nebuliser nearly every day now.. I intend to appeal but of course I have a car via the motability scheme which i now have to return and of course the stress has caused my asthma to be even more exhausporated.. I dont understand why someone who qualifies then suddenly doesnt even though condition has worsened...

  18. Having had one of my lungs removed and 2 thirds of my other at 6 days old it would be fair to say i have had battled all my life now at the age of 16 ive been landed a bill for over payment of benefits (DLA) they whole grand amount of over £21,000 i am not disabled enough according to the dla how the hell would they know what i go though ever day of my life how everyday good day i have i have another 5 which im bad they removed my transport and money im really suffering now with pain in my chest and legs and i will be on meds the rest of my life. how can they do this to anyone let alone myself

  19. Hi I recently had to reapply for my sons dla and hadn't heard nothing back so I decided to call them today to be told that my cla was being shutdown becausey son dosent need a huge Amount of help with I told them he did my son is 2 1/2 years old and was born with gastrochisis he spent the first 6 months of his life in hospital and was dependent on tpn he also under went 5 surgerys because of the state his bowels were in he had numerous colestomies and iliestomies and had his last one reversed in dec 2012 which only left him with 30% of his small bowel left he was also left with server liver damaged which constantly has to be monitored along with his bowels well this at home as quite difulties asy son can go to the tollette any thing from 5-15 times Aday and also has a very high appetite which is lowerd by boundries he still has to have milk feeds to because of the good in them as he dosent tolerate diary so of course I have to get up through the night too with him with either bum changes
    Milk or changing of his bedding where he has leaked because his stools are very runny and last of all the medication he has to take every day I'm jus so upset by dla and I quote there words to me we're "his needs are like any other child of his age" now sorry I Dont no any other normal 2 year old that is like my son so now Ill I can do is wait gonna go back to my hospital and get a letter. S also family members are gonna write too as this is stupid when to think other people are getting it for a lot less Illness would be very grateful for any advice or support xxxxx

  20. I have spinal problems, first applied for DLA in 2009 back then it was just my lower back, and a bad right leg, sciatica, foot drop, no reflexes below knee, bad hip, had surgery, was awarded low care based on cooking with no arguments, I was happy with that..

    Two years ago I did another disc in my neck, award didn't have long left to run so just left it, have poor movement in my arm, shoulders, can't write as have numb fingers,can hardly drive anymore as struggle with handbrake and grip..
    Get excrutiating headaches, can't cook daughter has to, don't go out apart from school run where I sit in car and eldest gets her sister..

    I have been suicidal, 3 previous attempts years ago, have been told need surgery on neck but big op, I have buphrenorphine 70mcg, oramorph, gabapentin, diazepam, sent for counselling to help me cope with condition but ca't get up there as stairs..
    I have poor balance as leg is bad and blood flow to head is compromised...

    Had medical with ATOS and i'm the WRAG

    Just applied for DLA and it's a miracle i'm cured..

    No depression, Arm is fine, no neck problems,

    turned down based on
    I can walk 200m
    Go to kids school
    Walk 10 minutes to the doctors surgery

    Haven't walked to the docs in years why would I walk when I have a car, it's halfway between kids school, was tricked by ATOS was asked how far is it ??

    Even though I took anti depressants not one question was asked about depression, eve if they had asked I can't describe killing myself infront of my 7 year old..

    They said nothing wrong with my arm based on the fact I had a handbag with me and handed over my meds, I didn't have a handbag with me, my daughter did..

    Just had another disc go in middle of my back, am appealing DLA and another ATOS assessment next week, am recording it...

  21. Had a reassesment of my condition on the 14th February, then found out on the 16th March 2013 that I'm cured and there's nothing now wrong with me!! According to the foreign doctor that visited I can walk 200m, also I can walk upstairs and all this while not having any pain at all. I find this to be almost amusing if it were not for the fact these so called medics screw with your lives, for one I'm always in constant pain with my lower back no matter what I do and two I live in a ground floor flat which is adapted for me. Go figure, I'm also being investigated for heart disease, whilst already being diagnosed with ANGINA. This was explained to the quack but it must be a language barrier, what happened to all foreign doctors having to have a good understanding of ENGLISH ???