Claiming DLA and ESA – some tips…

Read me first. It’s important.

March 3 2010 Just thought I’d share this with you

I’m hearing tales of peoples’ dismal experience with DLA claims, so I thought I’d offer some advice based on my own experience. I’ve also thrown ESA into the mix, as some things are applicable no matter what the benefit.

The first thing I’d say is that, beyond asking for a claim pack, stay off the phone. You don’t need to do even that much, as you can actually download a DLA claim form, to complete on your computer from

The form you want is headed “Download a claim form to complete on your computer” and the one you want is the first listed under that heading. It’s an editable PDF form, so you need Adobe’s Acrobat Reader to use it, but virtually all computers have a version installed when new anyway, though you may need to update it if you haven’t used it much. It’s free, by the way.

Downloading the form is an excellent idea as you can tinker with the it until you get it right, and  you’ll have copy for your own records, too.

The claim process should go like this (more or less):-

Application – Medical exam (not always) – acceptance or rejection. If the latter then that’s followed by appeal and tribunal. At no point should it be necessary to contact the DWP by phone. In 23 years on disability benefits, I reckon I’ve had very few phone conversations, and these have just been routine stuff, not discussing claims. And DLA is never so urgent that you must phone (for Incapacity Benefit you may occasionally need to phone, if something goes wrong, ditto ESA, which they much prefer to process entirely by phone – don’t get sucked in**).

I’m seeing reports, too, that DLA office staff are telling people their claim has no merit, as they’re under-medicated for the degree of illness they’re describing – the clear implication is that they’re lying. This is totally unacceptable. Clerical Officers – the people at the sharp end of anything to do with benefits – simply do not have the medical knowledge to be able to make such an assessment and, anyway, people are infinitely variable, and a medication regime which suits say, me (16 different drugs daily), may not suit you, and vice versa. It’s become clear to me that some people actually are under-medicated, but that’s a matter for them and their doctors, it’s bugger all to do with some desk-jockey at the DWP.

However, unacceptable or not, it’s become a fact of life, so before applying it might be worthwhile asking your GP for a medication review – tell them why, too.

**You can, by the way, get an ESA claim form here

The one you want is headed “Downloading a claim form” and you want the saveable, interactive form, plus the guidance notes. As above, you need Acrobat Reader.

I’ve always done everything by letter (faxed or mailed). Faxing is my first choice, because Windows XP has its own little fax applet and, as long as your PC has a modem, you just connect it to the phone line and you’re in business. Far more convenient than having to go out to post letters in the rain, and/or queue for stamps at the Post Office.

If you don’t know about the fax applet, get back to me – it’s easy. And the DWP doesn’t release fax numbers by default, so you may have to  call and ask for one. Do NOT get drawn into a conversation other than to say you want it to send them a letter, as you find it difficult to get out to mail one – or whatever suits your situation. If they get pushy, don’t be afraid to say that you won’t discuss it by phone, as you want a written record of everything that passes between you, as is your right.

These days, if you talk to benefits people, not only will your phone call be recorded (though if you record it at your end, you’ll be breaking the law – don’t let that stop you if you know how, though), your voice may also be analysed by computer, which monitors stress in your voice and decides if you’re lying or not. And who, discussing a benefit claim that will dramatically affect their life, would NOT be stressed? I work on the assumption that this system has been rolled out across the benefits system; better safe than sorry, even if I’m wrong.

So it’s in your best interests not to phone if you can possibly avoid it, and never to ask “Where’s my claim, then?” – this will not endear you to someone with  a 2-foot stack of claims on their desk. Benefits office staff are under a lot of pressure, and if you’re their 20th phone call, they probably won’t be at their best. It’s worth bearing in mind, too, that they’re not on your side. They shouldn’t be against you either – they should be 100% neutral but, increasingly, I’m hearing that staff are often unhelpful, even hostile, so it’s best not to get involved lest you are provoked into saying something you’ll later regret.

When you fill in the form, focus on the bad stuff, as that’s what’s screwing up your life – if there is any good stuff, forget it. The gold standard for DLA is your inability to walk, so don’t guess at this. Once question asks how far you can walk in one minute. I would have guessed at 40-50 metres, but I put a stop-watch on myself, and it turned out to be less than 40 metres, and had I stuck with my guess I’d have talked myself out of benefit. The first question in that section asks how far you can walk without feeling severe discomfort. If, like me, you can’t stand without pain (or, with respiratory illness, without wheezing and being short of breath), then the answer is Not at all. Don’t be tempted to flannel, just say what is.

Like me, you may find the form is inadequate, so if you have to give a long answer that won’t fit in the box. type your answer on a separate sheet of A4. In fact, I did that for almost the entire form for both DLA (Mobility Allowance when I got mine), and Incapacity Benefit. They’re perfectly happy with this, you just need to put your name and NI number at the top of each sheet, and index the answers to the questions.

Basic rule of DLA  and probably ESA too – don’t explain too much. If it enhances your apparent disability, explain. If it makes you look better, don’t. For example, the Lower Care payment depends on one question – if provided with the ingredients, can you cook a meal? If in your case, the answer is No, just say No. Don’t say, for example, No, but if someone helps me, I can, because that will count as Yes.  As will, for example, Mostly no, but occasionally I can. It shouldn’t, but it does. So don’t explain, just say No to that one, if no is appropriate.

The same logic applies to most other questions. If, by any chance, you have occasional good days, keep them to yourself. That’s not dishonest, you’re not claiming because you occasionally feel a little better, you’re claiming because you mostly feel like shit, and are disabled. Good days, if they happen, just cloud the issue, so forget them.

The rest is just common sense. If you’ve downloaded an application form – and even if you haven’t (though you should, if for no other reason than you’ll have a copy for yourself), this isn’t something you should rush into. Take your time, and get it right. Of course, with the downloaded form you can rewrite it as often as you feel necessary.

I would also recommend talking to your GP and any consultants or others that you see on a regular basis, and make sure they know about your claim, and that they’re on board. You don’t want them coming down against you in a fit of pique because you didn’t keep them in the loop.

Finally, if for any reason you still insist on a paper form, once you’ve completed it, get a friend with a computer to scan it for you, or get it photocopied. It’s essential that you have a copy so you can remember exactly what you said. And never, ever, lie. If you feel you have to lie, then your claim probably isn’t justified anyway. If you’re tempted to lie just to enhance a perfectly good claim, don’t, because if you’re found out it’ll trash your claim. It’s an offence, too, and you may get a hefty fine, to boot. And, of course, you’ll just reinforce the Daily Mail’s belief that claimants are a bunch of chisellers. So don’t bloody do it, OK!

116 thoughts on “Claiming DLA and ESA – some tips…

  1. hi ron ,i am 48yrs of age and i have copd,pernicious anemea,hitaus hernis,chronic back pain,and being tested for osteoparosis.i have just had a medical from a doctor from the dla,and have now been informed i have been refused dlabenefit.i had full mobility dla 3 years ago,and when it was to be renewed this year ,i was refused.i put in another claim and this is the result.refused can they justify this,and what advise do you have for me? im going to appeal this.i have had the same carry on from them since 1996,when i was awarded dla for life,but obviously that doesnt seem to be the case .this is really getting me down and totally stressing me,and i dont know where to turn.please can you help.many thanks.

    • Hi Trisha,

      Sorry for the delay – I’m having a bad spell myself.

      As you’re already appealing, there’s not really a lot I can add, except to focus on your COPD. Pernicious anaemia is treatable, so probably won’t count as a disability, hiatus hernia isn’t a disability, unpleasant though it may be, and every one – rightly or wrongly – is suspicious of back pain, no matter how disabling it is. I’m not sure what the position of osteoporosis is as regards COPD but, like everything else, it will depend on the degree of disability.

      48 is very young to have COPD (unless you’ve been a very heavy smoker virtually since childhood). Is your COPD GP-diagnosed, or have you been through the whole hospital chest-clinic, Pulmonary Function Laboratory diagnostic procedure? If the former, then the DWP would be suspicious of the diagnosis, as it might be wrong – there are other conditions, especially at your age, that can cause changes in your PEV and FEV1 rates and are treatable. The defining condition for a diagnosis of COPD is emphysema – no emphysema, no COPD. If you have emphysema, or your lungs have developed “emphysematous changes” then the diagnosis of COPD is inarguable.

      The DLA people, wrongly in my view, put a lot of stock in the amount of medication a claimant is on – if they decide you’re undermedicated for the degree of disability you’re claiming, then you won’t get it. For me, that’s a matter for the patient and their doctor, not for the DLA doctor. This is what I take for COPD and since I wrote that I’ve added a nebuliser, but there are comments on this blog from people who, based on what they say, may be at least as ill as I am, but have just one inhaler and nothing else. That’s no near enough, and it’s not enough to get DLA either.

      The bottom line – if you are claiming to have a serious respiratory condition, you need to have the medication to support that claim. If you don’t have it, for whatever reason, they will assume you’re lying or have been wrongly diagnosed. I suspect it applies to any medical condition, too.

      There’s a lot of useful COPD-related info on this page too

      How far you can walk in 1 minute is one of the most vital questions in COPD. If you can walk further, faster, than is appropriate for DLA, then your claim will fail.

      I don’t understand, though, if you were awarded COPD for life, why they keep on reviewing your claim – I think you’re entitled to ask them why.

      They can, of course, review anyone at any time, regardless of the length of the award, but you have to be seriously ill, with no chance of recovery, to get a lifetime award, and are not normally subject to repeated reviews. I think it’s possible the DLA doctors don’t think you have COPD (I’m just speculating here, you understand), as your are very young to have it – it’s not impossible at 48, but it is very rare without some severe, pre-existing condition. In fact, that applies to all COPD – it doesn’t just appear without a previous history of respiratory illness (for example, I had bronchiectasis and asthma from age 2, before developing COPD in my fifties).

      The thing is though, at present, people with COPD are having a particularly hard time with DLA, and I’ve no idea why. Maybe they think it’s being over-diagnosed, or mis-diagnosed (for example, they’ll treat a diagnosis of COPD, where there has been no pre-existing respiratory condition, as suspicious).

      It may be worth talking to the Welfare Rights people or a local benefits advice/welfare rights group, if you have one (the CAB should know).


  2. Hi Ron
    I have been trying, and faiingl, to find out how the new ESA wil affect existing Incapacity Benefit claimants next April.

    I have chronic COPD and cronic brittle asthma. I was award DLA 12 years ago for life, getting higher rate mobility and middle rate care. I have a blue badge.

    They decided to do an ‘assessment’ 4 years ago and told me I am on the correct levels of DLA. I have been told since they should not hacve done this as I was awarded DLA for life.

    I will be 58 by next April, and am worrying how this change is going to affect me. My ‘retirememnt’ age due to the recent changes is now 61.

    What can people in my situation expect with the new ESA?

    Thank you

    • Hi Lynn,

      My understanding is that no matter how long a DLA award is for – mine’s for life too – you can be reassessed at any time, though to be fair, in 23 years, they’ve never bothered me. The advantage of a lifetime award is that you don’t have to reapply every few years.

      There is no fixed schedule for moving IB claimants to ESA – the plan was that it would happen as and when it could be squeezed in, because it’s a massive task (mercifully, I’ll be out of the IB system in October), and I’ve had no feedback from people who have made the change, not have any of the newsletters I subscribe to mentioned it.

      The only thing I know about switching to ESA from IB is that they’ve promised we won’t lose money on the deal. However, as we’ll have a new government before long, I don’t know what that promise will be worth, if anything.

      The main aim of switching IB claimants to ESA was to get as many as possible back to work (ha!), something that anyone with an ounce of sense knows will never work, and last I heard that scheme was going belly up, a victim of the recession. I’m pretty sure that’s why it’s all gone very quiet.


  3. Hi Ron, thanks for your quick response.
    It is just there was something about ESA on the One Show the other night, and everything they talked about (and what ive read) seems to be about people with more physical disabilities, or sight etc., no mention of people like us with lung problems.

    In actual fact, I got my DLA solely on my brittle asthma, being on an ‘at risk’ register from the hospital. Since then I have developed emphasema and more recently, bronchiectasis. So any new reviews now I will have to add those on to it.

    I recently completed a pulmonary rehabilitation course, and although did not do too well with the ‘excercises’ found the talks each week to be a great help, and although DLA was talked about, there was no mention of ESA. Try as I may, I cannot find how they can assess people with COPD and/or chronic asthma, particularly as it can change so dramatically during the course of an hour, let alone a working day!! I shall just have to hope I am at retirement by the time they get round to me!


    • The One Show – not the most reliable source, I’m afraid and, as you noticed, no real comprehension of disability.

      I think, for ESA, they’ll assess COPD etc., the same way they do for DLA – with the services of a doctor who has retired or is so crap they can’t otherwise get a job. I got a got a retired doctor for my DLA medical, who admitted he just did it for beer money; still, he knew what he was doing, and spent about 3 hours doing it. Things have changed from what I’ve read in the comments on the other COPD pages – I’m getting the feeling they now work to a checklist, rather than rely on their knowledge and experience, which does rather reinforce my “crap doctors” theory.

      I hit old fart territory – pension age – in October, so I don’t think I’ll be troubled by ESA. Mind you, the IB people are planning to review my entitlement in 2011. I wish them luck with that – I’ll be long gone.

      I’ve had no feedback from anyone about ESA – just DLA and IB so, let’s try this:-


      We’d all love to hear from you, whether your experience was good, bad or indifferent.

      Well, you never know. I’ll put a similar appeal in a blog post, too.

      By the way, for those who aren’t aware, and who pitched up here out of curiosity, COPD (Chronic Obstructive Pulmonary Disease), is something of a misnomer – it’s really a syndrome – a collection of conditions – rather than a disease in itself, and the defining condition for COPD is emphysema. Basically, no emphysema, no COPD. In my own case it includes the asthma and bronchiectasis I’ve had since age two, when simultaneous measles and whooping cough trashed my lungs, plus emphysema, caused by the first two.

      Incidentally, you don’t develop COPD out of the blue – there is always a pre-existing respiratory illness, sometimes several, that gives rise to it.

      By the way, Lynn, harking back to your original question – what can we expect from ESA? Well, nothing good, I’m sure, as the principal aim is getting people working whenever possible, and the cynic in me takes with a large pinch of salt the claim that people who are genuinely disabled and unable to work will do well out of ESA. If true, it’ll be a first!

      From what you’ve said, though, I don’t think you have anything to worry about. Really, I don’t think I have either. A year ago, maybe, but things have changed and I should be safe. Which, I think you’ll agree, is small consolation. . .


      PS – Hope that last para doesn’t sound too maudlin – having a rough day. . .

      • Hi Ron,just found this post and thought I’d tell you my tale. A little over 18 months ago I was in full time employment doing a very physically demanding job. i found myself having breathing difficulties.i went to see my gp who referred me to a specialist after having lung function tests,MRI & CT scans done i was diagnosed with severe emphysema. at the age of 39 i was given ill health retirement from my employer with deferred pension ( i wont be around to see any of it if i believe the specialist).in january 2009 i went to my jobcenter plus and was told to claim ESA.i had to attend a limited capability for work assessment with an ATOS Origin doctor who found me to be in A1 tip-top health !!! and had my benefits stopped. i appealed and eventually had to go to a first stage tribunal who ruled in my favour.

        • Hi Gavin,

          If you haven’t already, now you can claim DLA. These days ESA and DLA are closely linked (they shouldn’t be, because the mobility component of DLA is payable whether you work or not, but that’s how it is).

          First question – where did your emphysema come from? It just doesn’t appear from nowhere without a pre-existing and long-term condition. Is it linked to your job? If so there’s probably compensation to be had. Small consolation, but if it was your job that caused it, go for it.

          Emphysema doesn’t exist in isolation, either, so you need to find out what caused it, because whatever the cause, you still have it and it needs treatment. If I were you, I’d ask for a second opinion, too, because based on what you’ve told me, I’m not convinced. And the fact that the ESA doctor couldn’t find it is worrying, too – if it’s that bad, it should be perfectly obvious to anyone, especially a doctor. Seriously – ATOS docs aren’t the best available (or they wouldn’t be doing that job) but emphysema at any level should have been easily detectable.

          But let’s assume your doc is right, and you do have severe emphysema – that’s not a death sentence. When I was 17 I was told I wouldn’t see 40. I’ve just passed 65, so prognoses can be wrong. What sort of life-expectancy you have depends to a significant extent on how fit you are (respiratory problems aside), and on your medication, and how assiduously you take it.

          Effectively, you have COPD, of which emphysema is the defining component, and there is no shortage of meds available – this is what I take

          Do you have oxygen? If your emphysema is life-threatening you should have both domiciliary and portable oxygen. If you don’t, again, you need to challenge the diagnosis and get a second opinion. You’re entitled to one. And I don’t want to scare you, but it’s a possibility you have something more serious than emphysema, because the pattern is all wrong for that. You really do need to be making a bloody nuisance of yourself, getting this thing confirmed – or otherwise – by different doctors – and at a different hospital, too, as consultants tend to stick by their colleagues and are often reluctant to contradict them.

          And even if your emphysema is confirmed, you need to be asking why. As I said, it just doesn’t pop out of nowhere.

          Almost forgot – did your consultant tell you you were going to die early, or is that your own feeling?


  4. Hi Ron

    No not maudlin, I reckon we deserve to be grumpy old gits at times!!! Ive had asthma since age 2 and spent most of my childhood in hospital. They tried everything, convalescent homes included and I wasnt allowed any exercise due to the speed at which I go into an attack.

    Everything got worse when I got ovarian cancer and my lungs collapsed during surgery and ended up in intensive care. Now my medical notes read no ops unless life threatening! Interesting though that I did not have to have a medical for my DLA, they wrote to the hospital and accepted their reply. I only had the one review, and again, no medical. Hopefully, they will leave me alone with not long to go til I gain the ‘Bus Pass’. A friend of mine been made redundant and she is in her 40’s and cannot get a job, so no chance for a wheezing coughing spluttering wreck like me!! (my cv will say, good sense of humour and thats it!).

    Lets hope your appeal can get us more info. I am going to a Breathe Easy meeting this month (if I can as ive fallen and on crutches!!!) and I will see if any info is available there and let you know. Mind you, ive only been to one meeting and I was not going to go back as there are too many smokers and I get very angry with them, but for the sake our finding information, I will be brave!!


    • Hi Lynn,

      My DLA is based on my asthma/bronchiectasis, and you may well be right about them not pestering those with lifetime DLA awards, but I don’t actually know anyone else with one to ask (OK, folks – anyone out there know for sure?). Thing is, though, conditions like ours aren’t going to magically get better (though the IB numpties don’t seem to know that), so DLA for life makes sense, as would it not being subject to review (it sound as if what you had might genuinely have been a check to see if you where getting the appropriate benefits).

      I’m tempted to try for middle care, but if you look at the comment from Florence Graham here , you can see why I haven’t – the risk of losing what I already have is too great.

      Right – must hit the kitchen. . .


  5. Hi Ron

    I was awarded middle care and higher rate mobility and for that I am grateful. I would be stuck without my car and public transport is not a good option for people like us, too many bugs around!

    I think it was just a check to ensure I was claiming enough, they just sent a form and I filled it in (I had kept a copy of my original). As I said before, if I ever have another to fill in it will read a lot worse as the past two years my lungs are deteriorated and to quote my GP are “knackered”!

    I think one of the problems a lot of COPD sufferers have is that on the outside they tend to look ok. The hospital tell me I look quite well until I speak!!

    Enjoy dinner and lets hope we get some responses.


  6. Hi Ron

    Thanks very much, hope we get some feedback.

    Tesco delivery here, need to smile to get them to carry in to the kitchen!

    Cheers again

  7. Hi Ron,

    I have been reading your info and it is very useful thank you, I hope you are feeling well at the moment.
    I have Crohns Disease which is a painful disease causing your white blood cells to fight against your body and cause ulcers in the intestines. The condition is not continuous but has flareups that can last anywhere between 1 week to 3mths at a time for me with only short breaks inbetween. During which
    these flareups I find it hard to move, hard to eat, have bad fatigue and am in extreme pain. I was constantly on and off work although I loved my job. After nearly 3mths on sick leave my specialist recommended that I give up my job take some time out and then find something less stressful that won’t contribute to my illness.

    I have just applied for ESA and am awaiting a response. In your earlier messages you said that on the outside you look fine…this is the same for me, so how will this affect the medical I am required to do? (I think it is mainly geared towards physical illness such as bad joints etc) During my remission (which doesn’t last very long) there looks like there is nothing wrong with me at all..I don’t want them to think that I am a fraud and I know that previous Crohns claimants have had a very hard time. Do you have any advice?
    Also one more question…do you know if they help toward your mortgage? I have a house and due to no longer working I am worried I am not going to get any help so will have to try and find a job (in the current climate!) that will cover the bills again and will be sympathetic to the treatments and time off I will be having and that will probably make me even more ill.

    It’s like a never ending circle at the moment of worry and illness that is making me tired of trying…why can’t they make it a little easier for the people with real claims? and why is that if you don’t take off the council and have actually bothered to try and own your own home or do something with your life..then it feels as if you are being penalised…… Any advice would be much appreciated.

    Rant over.. 🙂


    • First of all, your consultant, or your GP really HAS to sign you off as permanently incapable of work. Otherwise you’ll be buggering about with sick notes for as long as you’re off, and I’m getting the feeling this might be a problem for you (and if you miss one, or get it in late, it’ll mess with your benefit). If you recover and feel like going back to work – or get another job – you can still quit ESA, permanent or not

      When I claimed for my mortgage, they changed my Incapacity Benefit to Income Support – less cash but a lot more benefits in kind. How it works now, I don’t know, I’m afraid. Your local benefits office will be able to tell you. It’s important to speak to your mortgage holder and make them aware of your situation – see if they’ll cut you some slack – suspend the interest payments for, say, six months, perhaps, or whatever you can squeeze out of them. Just don’t stop paying if you run out of money – best to talk to them first. That applies to any other financial commitments you may have – ask your card company,for example, to suspend interest for the duration – they’re usually cool with that if it’s handled properly.

      There’s no telling how benefits assessments will go – what’s wrong with you doesn’t appear to matter. There’s a guy on here, no legs, severe COPD and a stoma – he lost his higher mobility DLA. Go figure… If you have the requisite medical support for your claim, whether you look well or not won’t matter. I had no problem with DLA and nothing serious with IB. And it’s not that Crohn’s patients, particularly, are having a hard time – everybody is. It’s getting increasingly hard to claim benefits, especially ESA, which is deliberately designed to be hard to claim – the aim of ESA is to get you into work, not onto benefit.

      If you have to have a medical, try to get it at home (bend the truth if necessary!). If you have one, don’t assume the doctor is against you, and don’t be hostile. The doctor isn’t on your side, nor is he/she against you – they should be totally neutral. It’s the same for all people in the benefits system – despite what you might read elsewhere, they are not your enemies. Trite though it may sound, if you’re nice to them, they’ll reciprocate.

      Don’t ever be tempted to minimise your problems, either – stoicism won’t get you any money. And do bear in mind, if you have to go to them, it’s not just a medical – your assessment starts as soon as you set foot in the place. Orwellian, but none the less true. That, apart from the home-ground advantage, is another reason for having a medical at home.

      Talking of DLA, get your application in right away. It’s a stand-alone benefit so whether you get ESA or not you can still claim it.

      I have to say, though – the attitude in your last para, intentional or not, isn’t going to make you many friends outside of Daily Mail readers.

      People have the same access to benefits, and are just as entitled to them, whether they rent or have a mortgage. Britain is pretty much in a class of its own in believing buying a home has any more merit than renting. It’s neither more nor less meritorious, it’s just another option. Likewise the claim system is the same for everyone no matter what’s wrong with them. Real claims indeed!

      Really, there is no evidence at all that there is any significant level of disability benefit fraud. Nobody has ever produced any hard figures in support of claims of fraud – there just aren’t any. The DWP, some years ago, tried to prove there was a high level of DLA fraud. After several years of making the lives of thousands of people miserable by reviewing their claims, they barely cleared 100 alleged frauds, and most were cleared on appeal. QED. The vast majority of claims, successful or not, are all too real.

      The best advice I could give you is stop taking it personally. Nobody is penalising anyone for anything. Illness happens – to good guys and bad, rich and poor, tall and short – illness is an equal-opportunity affliction. It’s not personal. It just is. Likewise benefits – you wouldn’t think it was personal if your claim succeeded, so why would it be personal if your claim failed? By the way, a lot of claims fail, but many are overturned on appeal – you just have to stick with it.

      Seriously, you have to get your head around this, because ESA is just the start, and there is more form filling to come, maybe a lot more, and the only way to cope is with equanimity. We all have to do it, and it’s the same pain in the ass for everyone.

      Oh, a tip – DLA stands or falls, for the mobility component, on walking ability – if Crohn’s affects your ability to walk in any way whatsoever, milk it. Tell them about the bad times, keep quiet about the good. Take a good look at the care component, too.

  8. Hi Ron,

    I am 22 years old and have just been diagnosed with Bronchiectasis alongside Asthma these lung diseases are due to a rare condition I have called Churg-Strauss Syndrome Vasculitis, this is systemic disease involving most systems of the body. Its main feature being asthma and in my case I have also had involvement of the heart and nerves causing weakness and fatigue.

    Although CSS is relapsing and remitting condition I have been quit fortunate to have good states of remission however the asthma has been quit uncontrollable and due to being on immunosuppressive therapy has made me susceptible to constant infection which has lead to bronchiectasis.

    Although I have been diagnosed for three and half years with CSS and had the asthma prior to diagnoses (although didn’t know it was asthma) and it has persisted ever since and now having the new development of bronchiectasis coping hasn’t got any easier and its making me feel more and more like a social freak especially when I am coughing my insides up most of the time.

    I applied for DLA last year and my application was rejected and I went to a tribunal and felt so out of my depth I couldn’t explain myself properly and was given low care rate till January 2010 on the grounds of depression as the couldn’t justify awarding me anything else. However looking back on it I don’t think my application was not the best as I went to the Disability advice centre and the man wasn’t that helpful and my GP wasn’t very supportive has he feels you have to be missing limbs etc to qualify. Now they have sent me renewal form it’s a once bitten twice shy situation and not completely sure but as things worsen I need some support what should I do?

    As I want to lead a life like most people my age I need that extra support, I would be so grateful for your words of wisdom if you could help.

    Many thanks


  9. Hi Keiron,

    The first thing to consider is the r&r nature of CSS – your DLA claim should be based only on the bad times. You are, after all, making a claim based on disability, so you need to focus on that aspect, not on the good days.

    It does seem, too, that you need a new GP – yours sounds like an idiot. Are there any other doctors you could see at the practice (much easier than changing), or are you stuck with just the one?

    With the DLA mobility component, walking ability is the main concern, so don’t guess at how far you can walk in a minute – check it out. And obviously, less is better. If you’re borderline, take the lower option.

    I’m very worried by what you say about your asthma, as it can be well-controlled yet it clearly isn’t. Take a look at my meds on this page – although it says COPD, it’s pretty much what I was taking before COPD came along

    And bronchiectasis isn’t just caused by infections, it also leaves you very susceptible to future respiratory infections, which needs watching as rapid intervention with antibiotics is essential. You need to monitor your lung function (PEF and FEV1 – there’s a link in the following CPOD and nothing but COPD post), as well as checking the colour, taste and smell of your sputum for purulence. Yeah, I know it’s gross – needs doing, though, as an infection will change the taste of your sputum before it makes you ill enough to visit your GP, and early intervention means a quicker fix. I buy my own antibiotics, so I always have a bulk pack of Amoxyl in the fridge, as these days it’s impossible to get a scrip without a sputum test, which takes too long.

    These posts are worth a look, too, as mostly they apply to the asthma-bronchiectasis combo – which I have – as well as to COPD (with COPD, you don’t lose the causative illnesses, you just add stuff, like emphysema and Cor Pulmonale, to them)

    A caveat, though – is your CSS-induced asthma as amenable to treatment with the same drugs as normal asthma? Logically, I’d think yes, but I can’t be sure. With bronchiectasis, I’m afraid, all you can do is treat the infections as they occur. I’ve had a look at the treatment for CSS, and it includes no asthma-specific meds but, personally, I see no reason why asthma as a symptom shouldn’t be as treatable as stand-alone asthma.

    As I want to lead a life like most people my age I need that extra support, I would be so grateful for your words of wisdom if you could help.

    As far as asthma and bronchiectasis are concerned, with the right meds you can, perhaps, be a lot better than you are, but how normal you can be depends on a lot of things, including you, personally. The footnote on this post illustrates why
    But be aware that this may not be totally applicable with CSS if your heart is affected.

    Within the limits imposed upon you, try to be as fit as you possibly can. Exercise was always difficult to impossible, but I could walk, so I did – a lot; I walked every Sunday, with the Ramblers Association when petrol got too expensive to justify driving myself to the Lake District or wherever (the RA have graded walks, from gentle potters with frequent stops, to head-down, going like the clappers), I spent my holidays backpacking or cycling, and I often walked the 4 miles each way to work. Had I not been so fit, I’d certainly be dead by now, and that’s not hyperbole. Again, this will benefit your asthma and bronchiectasis, but be careful with your CSS.

    Any illness ia improved with the right meds – and I can’t stress that enough – but you have to find the pace and the activity that suits you, and not allow yourself to be pushed along by someone else. Especially not me!

    How much CSS will complicate the picture you’ll know far better than me, but one thing concerns me – your purely respiratory problems seem to be being neglected, so how well is your CSS being managed?

    And, realistically, what can you expect to achieve with CSS? I’m tempted to say heed your doctors but, until I was old enough to make my own decisions, all mine wanted to do was wrap me in cotton-wool – entirely the wrong approach as it turned out.

    its making me feel more and more like a social freak especially when I am coughing my insides up most of the time.

    Yep, been there for most of my life, and the best advice I can offer is screw what other people think! However, uncontrollable coughing needs treating. There is only one thing that will stop you coughing and that’s Codeine Linctus – all the TV ads claiming otherwise are just lying.

    In fact, codeine in any form will suppress the cough reflex – since I’ve been taking dihydrocodiene (for pain – a lightning strike trashed most of my joints), a 300ml bottle of codeine linctus now lasts almost two months where, before, I was hard-pressed to make it last a month. It’s only available on prescription, though. It’s perfectly legal OTC, but since junkies latched on to it, no-one will sell it.

    Some coughing, though, is essential with bronchiectasis, especially first thing in the morning, to clear the accumulated overnight crap from the lungs (and if you haven’t been shown how to do that – it’s not quite as simple as just coughing your nuts off – ask for a physio referral).

    The main cause of your cough, though, is likely to be your asthma, as it is with me – and that’s a lot more common than most people think. Asthma, as I’m sure you know, causes constriction of the airways. Sometimes, the body interprets that as a blockage, and the automatic reaction is to try and cough out whatever’s causing it. So you cough – a lot. I had a row with my GP once, about codeine linctus (he thought I was taking too much, I wanted more), but pointing out that the potential side-effects were infinitely preferable to coughing til I puked or passed out got my point across!

    OK, back to DLA. Without the support of your GP, you claim is going nowhere, so it’s essential to get him/her onboard – or changed. A doctor so out of touch with the realities of disability is in the wrong job.

    Medication plays an important part in your claim, too, and if you say you have asthma, and you don’t have the meds to support it, you won’t be believed. Bronchiectasis, unless it’s extremely severe, is rarely considered a disability until it reaches the COPD stage but include it, and describe how it affects you at its worst.

    What about consultants? Get them onboard, too, and tell them you’re submitting a DLA claim, and that that their support would be invaluable (because it is). In fact, anybody you’re seeing medically, and who might give you a favourable report, talk to them, and put them on the form

    Is your depression being treated, by the way, because it needs to be – there really is no need to put up with it. Check out whatever meds you take, too, because I was depressed for nearly 30 years, before I found out that one of my meds – Phyllocontin Continus – causes B6 deficiency. B6 is involved in the mechanism that mediates the natural serotonin re-uptake process and a deficiency causes depression. Since I’ve been supplementing with B6 I’ve been fine. Oh, and some asthma-bronchiectasis meds can cause a potassium deficiency, so that’s supplemented too, now, and I feel a hell of a lot better.

    Always give precise answers to questions. For an example, if you mean No, say No, never say No, but… That but will kill your claim. Deal in absolutes wherever possible.

    Same with walking. Whatever distance in a minute you settle on, never explain that, on a good day, you can walk further. That’s a claim-killer, too. Essentially, think of a DLA claim as a list of things you can’t do – things you can do occasionally, or on a good day, don’t matter.

    I would suggest not lying, because there’s a very good chance of being found out, but I always feel that there are two types of truth. The absolute truth, and the version of the truth that favours your claim. Tell them about everything that makes your life crap. I don’t use the boxes on the form for my answers as they often aren’t big enough, I just type my answers on A4 sheets. As long as you index the questions to the form (i.e. show the question number), and put your name and NI number at the top of each page, they’re happy with that. I also sign and date the last page.

    Is there a UK CSS support organisation that can offer any advice for DLA claims? I’ve had a look on Google, but I can’t find anything. These guys which you may already know about, have a link to people in the UK who may be able to give you some CSS-specific advice on DLA.

    The bottom line, though, is that unless your walking ability is seriously impaired – and that can be anything from pain to a missing limb to breathlessness – your claim for the mobility component is likely to fail, I’m afraid. And you might like to tell your GP that the vast majority of DLA claimants have all their limbs intact!

    If there’s anything I’ve missed, feel free to get back to me.


  10. Hi Ron
    A friend of mine could do with some advice and I am hoping you can offer some. Her husband has been in a terrible industrial accident. His hands & arms were caught in a roller machine and its stripped and magled the flesh to the bone on both arms. He has had 7 weeks of operations just on one arm. His other has been attached to his body after the flesh was tidied up to keep it ‘alive’ until he is physically ready for more ops. He was allowed home this week.

    My friend has to do everything for him as he cannot use his arms or hands. He can walk and that is it.

    She has given up work to care for him. I told her to apply for carers allowance, theyve told her she has to wait 3 months, I also told her to apply for DLA and they kept saying, can he walk, so she thought he couldnt get it. Ive told her today to ring again and she has been told she will have to wait 3 months. It is 8 weeks since the accident and he has been home nearly a week.

    What should be their next step?

    Hoping you can offer some advice

    • Hi Lynn,

      Apologies for the delay – your comment got missed somehow. This would be the place to start – Industrial Injuries Disablement Benefit

      The mobility component of DLA is out if your friend’s husband can walk, which seems to be the case, but as he needs so much help he can surely apply for the care component. You have to apply for the whole package but obviously the focus would be on care rather than mobility.

      Carer’s Allowance is dependent on DLA or Industrial Injuries payments – info here and here I can’t see anything about having to wait 3 months – it sounds absurd. Your friend can submit a claim online here beats talking to call centre staff who might have it wrong

      I can’t find anything about hardship payments – except for students! – so I’d suggest your friend talks to her local CAB office. There must be some sort of emergency finance available, I just don’t know where.

      What about compensation? It’s probably worth getting a solicitor on the job via a no win-no fee scheme, as long as the man himself isn’t at fault. In fact, with no income, legal aid is a strong possibility, which might be preferable, though they do claw back their costs from any compensation award.

      That’s all I can think of for now, but if I think of anything else I’ll come back to it. Likewise, if there are any more questions, or your friend needs any help with the DLA form, I’ll give it my best shot.


  11. Hi Ron

    I can’t remember which thread I last posted on but this is to let you know that my sister has been awarded middle rate care component indefinitely – so that’s excellent news (in her post today!).

    It means she can get support organised on a regular basis and won’t be so isolated (and, therefore, increasingly confused) the next time she needs the dreaded steroids, which, according to the GP’s letter, could be anytime. She (age 50) “has the lungs of a 70 year old”.

    Interestingly, I discovered that one trigger for this could be exposure to solvents/glues during a few years of working in a shoe factory.

    Anyway, again, it was your site that emboldened me to get stuck in and help with the application, and her tenacity in getting the drafts actually down on the form (once I’d left) when she was at a seriously low ebb.

    Best wishes and happy baking!


    • Hi Laura,

      I can’t remember either but it doesn’t matter – what matters is the money!

      I discovered that one trigger for this could be exposure to solvents/glues during a few years of working in a shoe factory.

      Absolutely! That stuff’s lethal.

      It means she can get support organised on a regular basis and won’t be so isolated (and, therefore, increasingly confused)

      The answer to that might be a blog! Seriously, 18 months ago I was convinced I had some sort of dementia. However, writing this blog, which increasingly took up more of my time – it’s a rare day when I don’t write 2 or 3 thousand words – seems to have solved that problem. It really is a case of use it or lose it especially if, like me and, if memory serves, your sister, you spend most of your time alone.

      Mind you, that’s no help if your sister doesn’t have a PC. If not, it might be a good investment – it keeps me in touch with the rest of the world when I’m stuck in here.

      I really need to take the plunge, myself, and reapply to try to get middle care, Trouble is – as some comments illustrate perfectly – it’s all too easy to lose what you already have.

      One question – does your sister have a steroid inhaler?


  12. Hi Ron

    Yes, she does – I’ve just checked – used twice a day, I think.

    She has a blue one (Ventolin, I expect), and a white one and green one. Has to use a spacer very often to cope with the inhaler and, when ill, can’t co-ordinate properly to use it without help.

    She also has crumbling bones (thank you, oral steroids) and has just been put on a statin for raised cholestrol/BP and feels “not right”.

    We await your wisdom re the steroids!


    • Only on the steroids? I’m hurt. . .

      Statins first – they make me incredibly ill. Despite their rep as a universal panacea they simply don’t suit everyone. They can cause liver and kidney damage too – something your friendly GP almost never mentions! It is very easy to reduce cholesterol dramatically – from 8.5 to 5.0 in my case – on a diet based mainly on soya products – milk, tofu, tempeh, flour etc – and oats. However, it has one major drawback – god, it’s boring! Currently I’m taking Flora’s Pro-Active one a day drinks, which can help, but statins are by far the best, if they can be tolerated. There are a few different brands, so if one makes her ill another may not.

      Not sure what can be in the white inhaler, but I suspect the green one is a combination inhaler – a steroid plus a long-acting bronchodilator, probably. I won’t touch combi inhalers, as they take away my flexibility of treatment. If I have to I can increase the dose of whatever it is I need at the time – which is usually more steroids. If I had a combi inhaler, pushing up the steroid dose may cause an overdose of the other component. And often, the dose of each component is lower than if you were taking them separately. However, depending on the patient’s medical knowledge and ability to self-assess, I suppose combi inhalers do have their uses.

      Steroid inhalers come in two colours – brown, weakish, red, much stronger. The red one can still cause the same side effects as oral steroids at 2 puffs 4 times a day (which is why I have an equator instead of a waistline!) or more, but the important thing is they don’t cause gastric bleeding.

      All inhalers work best when used with a spacer device. The best is the Volumatic (not just my opinion, it’s been proven) – available on prescription, but worth finding out what it costs first – might be cheaper to buy one. The usual pharmacy can get one.

      White steroid tablets should never be prescribed – they’re uncoated and cause stomach problems more or less instantly. They are, though, still available. Enteric-coated – red for the 5mg size, brown for the 2.5, are the way to go.

      Bone problem; supplementing with vitamin D3 and calcium will help (D3, rather than plain D, which is probably what the doc would prescribe, is especially valuable for someone who doesn’t get out much, and any D is essential to the absorption of calcium). If your sister is interested I can let you have details of where I get mine. Supplementation is better than a high-calcium diet, as only about 30% of the calcium from food is absorbed. However, of foods, hard cheeses, like Cheddar, have the highest content – 10 times that of milk – followed by soft cheeses and fish.

      Here endeth the lesson!


  13. Hello…
    I found your site and am wondering if you can give me some guidence.
    I have arthritis in my spine and hips that is seriously painful and limiting my mobility, I was taken off incapacity benefit in Feb 09 and put on JSA…needless to say I am now on ESA ….due to the pain my doctor said basically that ‘and these are his words so please excuse me ‘buggered’ due to the arthritis.
    SO I have just had my ESA medical they gave me 12 points, 6 for being unable to walk 200mtrs….which is ridiculous as I can’t walk 10ft without pain and 6 for not being able to stand for 30 mins,,,,,in reality I can’t stand for 10 mins never mind 30 .. but I notice that I have no points for being unable to bend kneel or squat and none for having problems with my hands that have arthritis. I also have regular physio from the hospitaal backpain clinic
    I have asked them to reconsider this decision and will go to appeal if I have to.
    what I am concerned about is that I have also put in a claim to the DLA….who refused me it on the basis of my failed incapacity medical in Feb 09 so again I have asked them to review the decision…does this mean that they will use the results from my medical in Oct 09 to make their decision? they told me they would write to my doctor, but I feel totally demoralised by the whole process…can you give me any advice please?
    thank you . Christine

    • Hi Christine

      Nothing wrong with buggered – I’m pretty buggered myself! I’m having a bad day, so bear with me – I’ll get back to you on this later today in detail. My first thought, though, is that your ESA medical is irrelevant – DLA is payable whether you are capable of work or not, so a medical to decide if you’re able to work is NOT the same as one to assess your mobility or care needs. And it was eight months ago, and things change. They should do their own.

      Shame you didn’t find my blog earlier though – things might have gone differently. Still I’ll see what I can come up with.


      • Thank you Ron for the fast reply…

        I know my medical was 8 mnths ago but I have just been sent for another ESA medical this month and that’s why I wondered if DLA would refuse me on this latest medical.

        I have informed them I a going to appeal and they have sent me the form to fill in asking why I think the decision is wrong so i will get that back into the post to them pronto.

        thanks again for helping

        I’ll look forward to hearing from you.

        • Um. . . Don’t post it just yet. Might get lost in the strike.

          Get in touch with them and make sure it’s OK to hang on to it till it’s safe to post it.


  14. Oh good thinking…..will ring them tomorrow…
    I really appreciate your help, especially as you are not in good health yourself it’s really good of you to give your time and valuable energy to people.


    • Hi Christine,

      I’ve been thinking. There’s nothing useful I can tell you about your current claim until you know what’s happening with your appeal. So, let me know as soon as you get word, and we’ll see what we can do.

      I think you should challenge on the basis that the ESA medical is to determine your fitness, or otherwise, for work, while a DLA medical is to determine your degree of disability and lack of mobility, and is nothing at all to do with your fitness for work. They are testing different things, and one doesn’t relate to the other. By denying you a DLA medical they are adversely affecting your claim. If you have room on the form, it might be worth opening it up and adding that before you send it.

      Check whether your GP supported your claim as well as he could; if not, try and get a letter of support for the tribunal; consultants as well, if possible.

      Other than that, if it all goes belly-up this time, get back to me as soon as you decide to reapply, and I’ll take you through it right from the start. How you fill in the form, even the words you use, can affect your chances – the trick is to make yourself look as bad as possible without actually lying. And to download the form so you can tinker with it until you get it spot-on.

      And that’s about all I can think of for the moment. If anything else occurs to me, I’ll post it here.


  15. Thanks ROn
    I will wait to see what happens and then get back to you …
    Thank you again

  16. Hi Ron,

    I am going throught the menopause and I am very depressed have been feeling suicidal and suffering from panic attacks for over 7 months I feel terrible. I am going to the doctors this morning I feel I cant cope. I dont want to get dressed, I dont feel like carrying on. I cant be bothered to cook for myself. I have noone to help me, my mum is not well and I just cant cope, ive been doing what I can for her. Could I get dla or esa?


    • Hi Lesley,

      You can apply for DLA by all means – you can download a form via the link on this page. ESA, too, if you’re unable to work.

      What’s far more important, though, is getting treatment. What you’re describing is profound clinical depression, not the menopause, and it’s a problem your doctor should be addressing. Nobody has to put up with depression these days, and there are enough treatments available that one should be suitable for you.

      Menopause and depression often go hand in hand, but while you’re pretty much stuck with the former, the depression must be treated, and the sooner the better. As a DIY treatment, especially for women, vitamin B6 can be effective (and I take 100mg a day to treat the depression caused by my meds, it’s very effective), but anti-depressant drugs, like Prozac and its kin, can work wonders, often quite quickly, though they can take several weeks to kick in fully.

      And if your doctor can’t see that, you probably need a new doctor, or to see someone else at the practice, if that’s possible.

      Good luck with your benefit claims, but don’t forget that NOT being depressed is a much better option.


  17. Hi Ron
    My brother, aged 35, has been diagnosed with emphysema. His lung has collapsed on a number of occasions and he recently had part of it removed.
    The DWP declared him fit for work prior to his diagnosis and he was referred to Pathways to attend a return to work interview. He was actually unable to attend the interview as he was admitted to hospital.
    He is appealing against the decision and so far has received no decision and, therefore, no money. He has also now been told by the local authority that a decision as to whether he is entitled to housing and council tax benefit is being investigated as the DWP have informed them that he is no longer entitled to ESA.
    Do you know of any organisations that will be able to help with advice as both my parents and myself are now not in a position to help financially.
    Thanks for listening.
    Hope you can help

    • Hi Nathalie,

      Locally, your best bet is to talk to the CAB, who should be able to put you in touch with whoever is best for your brother’s purposes in your area. I know that’s a bit vague, but it’s the best way forward. It’s possible the CAB themselves may be able to help, but they’re more likely to refer you to an organisation that specialises in benefits.

      Also, write to the council (and the utility companies and anyone else who may take a dim view of not being paid, while this is sorted out), telling them what you’ve told me – laying it on as thick as you like, it helps – and that your brother is appealing the decision. Really, I have no idea what the hell is going on with the people administering ESA, especially the medical side of it. When I had my DLA medical, in 86, I got a retired GP who knew exactly what he should be looking for. These days they seem to employ doctors who couldn’t ever get a job in the real world and, instead of using their knowledge – which they clearly don’t have – they work to a checklist. Tick the boxes, win a prize. Or, mostly it seems, don’t.

      Oh, and it’s worth pointing out to these idiots that while surgery is a standard treatment, it is NOT a cure – mainly it’s to improve the patient’s comfort levels, and reduce hyper-inflation of the lung (breathing in and feeling you can’t breathe out – a stage I’ve recently reached).

      Many refusals are overturned on appeal, but it’s important to get all his doctors onside, as they will be contacted – if they haven’t been already. And bear in mind that, ultimately, benefits will be backdated to the application date, if the appeal succeeds.

      Unfortunately, there is no point in applying for DLA yet, as that’s firmly linked to ESA – no ESA no DLA, from what I’ve been told here. And that’s pure lunacy, as DLA can be paid, as long as you qualify, whether you work or not (the mobility component, anyway). Still, I should think that one claim at a time is quite enough to contend with.

      Oops, almost forgot. Medication is vitally important. They look at the meds, compare them to the claim and, if they feel the meds don’t match up to the degree of disability being claimed. This, for example, is what I take for my COPD (emphysema is the defining condition in COPD) and there is information here that may help on a practical level, living with emphysema/COPD

      I hope this works out, for all concerned, and I really would appreciate it if you could come back and tell us what happens – it may benefit others.

      Good luck.


  18. hi i put in a claim for dla as i suffer from collapsed lungs i had an operation 10 years ago to stop this happening but 2 months ago i had another i also have astma i have been referred back to the surgeons any advice greatly appreciated

    • Hi Paula,

      Somehow I missed your comment – sorry about that. As you’ve probably got fed up coming back by now, I’ll email you. There’s just one thing, though – I don’t actually know what sort of advice you want. . .


  19. Hi Ron
    I have been reading your website with interest.
    I am 49 and had a virus diagnosed but not confirmed as encepahalitis in August when i was on life support.
    I also have diabetes insulin controlled.
    I find it difficult to work and have been claiming esa since my employers decided they didnt wish to continue with my employment as i was still within my probationary period at that time.
    I feel that I could do some part-time work locally but if i return to jobseekers they may want me to take any employment within an hours travelling distance. I dont feel capable. I currently only work four hours a week as a volunteer.
    I am wondering whether i would qualify for long term esa through fatigue or whether the said organisations will support me in a gradual return to local part-time work. I am within the 13 wk period so far of my claim. I have the form esa 50 to complete but all i can do is be honest in my capabilities. Have you come across cases of people in such circumstances? thanks.

    • Hi Sarah,

      My main area of expertise is COPD and its associated buggerations, but for benefit purposes, one illness is much the same as another, as the actual illness doesn’t matter a great deal. What does matter is the degree of disability it causes.

      Firstly, a virus diagnosed but not confirmed – how does that work? Could you clarify that for me, as it’s rather contradictory. Thanks.

      Anyway, I need to do some research into encephalitis – it helps if I know what I’m talking about – so bear with me and I’ll get back to you on this shortly.


      OK, I’m back.

      First of all, if you revert to JSA you’ll have problems – you have to go for any job they send you after – you don’t have the option of saying no, sorry, I can’t do that. Stay were you are, at least for now.

      The ability to do part-time work, but only if it’s local to you, isn’t really an ability to work in any meaningful sense, especially if you need to support yourself. Four hours a week as a volunteer is of no consequence in relation to an ability to work.

      You have to be honest about your abilities, but you also have to emphasise your disabilities. and, as I said, you tell the version of the truth that benefits you. Truth, where benefits are concerned, is not an absolute. Yep, I know that’s cynical – so is the system.

      Disability benefits like ESA and DLA are more about what you are not able to do. I for example, can spend all day on this computer – my PC skills are pretty good, and I can write well. That’s what I can do. Far more important, though, is what I cannot do – which is go out to work, and do this for someone else. I’m effectively housebound. If I was still on Incapacity Benefit, I’m pretty sure, when the switch to ESA comes, if I allowed them to focus on what I can do, I’d wind up on JSA. When it comes to work-related stuff, I can do quite a bit – but only as long as I can do it at my own pace, with as many breaks as might be necessary. And what I can do today, I probably won’t be able to do tomorrow – because I did it today.

      That’s the sort of information you just HAVE to give them, and when it came to IB and DLA, I didn’t answer the questions, I put the answers I thought they should have on a separate sheet, indexed to the questions.

      Please, don’t believe the ESA propaganda – the whole scheme is engineered to get people off IB and ESA and onto JSA. And, trust me, that’s not paranoia.
      Given the way you feel, it seems to me that while you’ve survived the immediate crisis of encephalitis, you clearly haven’t recovered from it entirely, Or not, at least, from its after-effects, which can rumble on for a long time.

      For now, I’d say that your best bet is long-term ESA (and DLA), but before that point comes, talk to your doctor, explain that you simply aren’t able to undertake anything like a normal, full-time job, and suggest (strongly, if you have to), that you may be better off if he/she were to sign you off as permanently unfit for work*. Then, when you apply for benefits, you’ll know he/she, at least, will support you.

      The same goes for any consultants you may be seeing.

      *That doesn’t mean you can never work again, but it does make getting benefits easier while you can’t work

      Unfortunately, I can’t offer any general ESA-specific advice, as I’m unfamiliar with it (as you may have seen, I’ve appealed for information, but none has been forthcoming), but it you want to ask particular questions, like “how do I answer this?” when completing the form, I’ll see what I can do. And despite the claims that it’s all about what you can do, it’s what you can’t do that really matters when it comes to getting money out of them – I can’t stress that too strongly or too often.

      I’d recommend – if you haven’t already – going to where you will find a mine of information about the aftermath of encephalitis.

      It’s not the easiest website to navigate, so if there’s something you can’t find, let me know and I’ll have a poke around. They do, though, have a support page here where you can email, phone or fax them (if you’re using XP, that has a very useful fax applet).

      I’ve given you that link separately as it was damned hard to find, which is unhelpful! I can’t find any information about claiming benefits either, but a personal contact from you might get you some information.

      You can get a brief guide to completing the ESA50 here The only way to get the full version is to join, at £18 a year.

      Sorry I can’t be more helpful, but as I said, encephalitis is way outside my experience. However, I have got myself a document which will enable me to answer questions relating specifically to the ESA50. I’m just trying to find a way to put it into a form in which I can edit it.

      Things to bear in mind – ESA, like DLA, is based on walking ability, and walking-related tasks (like using stairs), and advice on that sort of stuff I certainly can provide.


  20. hi ron ive been getting dla for 4 years now due to going to a tribrunal. i have copd and depression . i was awarded dla for 4 years and it runs out in april 2010 . i sent a renewal claim form 8 weeks ago and never heard anything yet. i have a car on mobility due to me finding it difficult to get around . dont know what im going to do if they dont award me it again. i am only 47 and had to stop working 5 years ago due to my illness. im so stressed out over not hearing anything yet. how can they turn u down when copd never gets better only gets worse .

    • Hi Denise,

      Your renewal is due in April, so mid-January is a bit early to be worrying. I understand, with your depression, that telling you to relax and stop worrying may not work, but please, do try.

      In the meantime, talk to your GP (and your psychiatrist, if you’re seeing one), and any consultants you may be involved with – just to make sure they’re on your side and will support your claim.

      To set your mind at rest you could phone the office dealing with your claim, just to make sure they have your form and it’s in the system (be nice to them – they’re just normal people doing a rotten job). Other than that, try to put it out of your mind for a couple of months. Not hearing from them really doesn’t mean it’s bad news – it doesn’t actually mean anything.

      And if it doesn’t already, your depression should form part of your DLA claim, too.


  21. hi ron thanks i rang them today . still with the decision maker so hopefully should her from them soon . i cant see how they would take it off me when my illness has got worse in 4 years i didnt have depression then . but i will let you know the out come of what happens . thanks ron

  22. Hi Ron,
    How are you? Just thought id update you on my current situation.

    I last wrote to you back in september about my Churg-Strauss, Asthma, Bronchiectasis and the dreaded DLA! I have had many recurrent chest infections as usual, at the moment I am getting over bronchitis with good old amoxicillin and if that doesnt work my chest consultant has wrote a letter to my GP to give me Doxycycline. Since Novemeber I have been been put on mucodyne (have you been treated with this?), nasonex and i am still waiting on a chest physio therapy, however I saw my consultant the other day and forgot to ask about it so i shall chase it up tomorrow. My GP also thought it was nessecary to start me on anti-depressants a couple of months ago. As I am still having recurrent chest infections do you think I should request another CT scan to see if my bronchiectasis has progressed, or should I not worry?

    When I wrote about me renewal form for DLA because I have felt so low I couldnt face it but I have requested a new form as im sure the other one sell by date ran out! I think the GP I have been seiing since last year will support as he wrote on the form i didnt complete that he see’s me monthly and “Churg-Strauss Vasculitis is a sustemic disease manifesting mainly with breathing dififculties and recurrent che3st infections, requring inhales, steriods and antibiotics” so i shall take the new form in and ask if he wouldnt mind writting it again as i didnt submit the last one. I am also waiting to hear back from a medical review from IB benefit.


  23. hi ron
    rang dla helpline today good news been awarded high rate mobilty for just 2 years this time .havent had my award notice yet but they said its on its way, never got any care awarded but still at least i still got my car . thanks again for your advice and kind words .

    • Hi Denise,

      Good news at last – not much of it about when it comes to DLA!

      I wouldn’t worry about it being 2 years to the next review – that’s pretty average. Make a date in your diary (or on your computer, if you can – Outlook’s calendar is what I rely on for reminders), for 2-3 months in advance, so you can start putting your claim together – don’t send it in then, wait til they ask. Then, when your review form comes, you’ll be ready for it. Include everything that has worsened in the intervening years, and don’t minimise anything.


  24. hi ron im 34 and iv suffered from depression for the past 18yrs on and off my husband left me to marry a man, i then lost 4 babies due t miscarriages and an ectopic i tried to take me life in 1994 with a box of tablets last year i had a nervous breakidown due to domestic abuse then this yr i lost my mum, i have only recently claimed esa and went for medical and now i need to attend the jobcentre for work related, i cant leave the house without my son with me and have no will to live im on martazapine 30mg yet there is days i can go without sleep wot benefits should i be claiming i got a letter to go for cognitive behaviour councilling but am petrified at having to leave the house what can i do or claim thanxs

    • Hi Caroline,

      This is so far outside my level of competence I I’m not even sure where to start.

      I think it’s absolutely vital, and urgent, to go and say all this to your doctor. If you find it hard to talk to him, print it out and and let him/her read it. Based on experience, I would also suggest that you need a psychiatric referral as a matter of some urgency.

      CBT may be useful, psychiatry is far better. If you get a psychiatric referral, do NOT go for CBT, as two therapists will just cause you more problems. Write and tell them this

      As for the benefit problems, contact your local Citizens Advice Bureau, explain it all to them and ask them for help or, if they can’t, to refer you to a local advocacy service and a benefits advice unit. If you don’t feel able to go, explain why and ask them for a home visit.

      You should probably claim DLA, too,possibly Housing Benefit, and the CAB should be able to find you help with those too.

      Best of luck.


  25. hi ron just a stupid ? i have just been awarded low rate mobility and middle rate care dla do i have to declare this to esa and can i claim both as my esa is more than my dla every week. my son gets dla as well and my wife is down as his carer can i go as his carer and she goes as mine?

    • Hi Steve,

      No, you don’t need to declare it to anybody, and it’s nothing to do with ESA. ESA is for being unable to work, DLA is for help with mobility and care.

      Hmm… You’re getting DLA care for yourself, yet you want to claim as a carer, too? Is that what you’re saying? If so, and you’re getting middle care, the first question they’ll ask is how are you able to care for someone else when you need care yourself – and that’ll put your DLA at risk. Your wife may be able to claim carers’ allowance for both you and your son. I’m not sure, but it’s worth a try.

      If that’s not what you meant, could you clarify, please?


  26. Hi Ron

    Had my first DLA claim and appeal declined for Fibromyalgia, menieres disease and Lumbar Osteoarthritis. GP hadnt been very supportive.

    Have since changed GP and he is very supportive and says he will help me all he can.

    My dilemma is because i have so many illnesses which ones i list first on the form as i noticed from my first dla claim that they seemed to limit the questions to first illness detailed.

    My complete list of illnesses have been diagnosed by rheumatologists, xrays, podiatry, ENT consultants and currently attending psychiatry.
    This is my list of medical conditions:-
    Fibromyalgia, Lumbar Osteoarthritis, Asthma, PLantar Fasciitis, Menieres Disease that includes Vertigo, Tinnitus and a partial hearing loss, Hypertension, Migraine, IBS, Stress, Depression and recently had referral for nerve conduction for possible Carpel Tunnel Syndrome.

    As you can see i do have a lot of disabilities and would really appreciate any help or advice you can give me.


    • Hi Sharon,

      Like you, I have several serious conditions, so for the most part there wasn’t room on the form for a comprehensive answer. So what I did is write “See attached” and type all my information on a separate sheet of A4. Put the question number against your answer, and your name and address at the top of each page, plus your NI number, and they’re perfectly happy with that.

      The order in which you list your conditions is of no consequence, though it’s pretty much customary to put the worst first. If you like you can preface the list with something like “In no particular order…” but, really, I don’t think it matters.

      The questions apply to your overall level of disability, not to any specific illness, there’s nothing to stop you rolling it all up into one package, and going with that, or picking the worst aspect of one or another, wherever that might be beneficial/appropriate.

      So, for example, if your walking ability is restricted by, say, osteo-arthritis, but that’s 4th on your list, it matters not at all – use it.

      Things like tinnitus, IBS, hypertension, won’t count for much in terms of DLA, and fibromyalgia is problematic, as a lot of doctors simply don’t believe it exists as a specific condition. Stress, likewise, doesn’t count for much – it just sort of goes with the territory as the other side of the IBS coin (IBS is stress-related more often than not).

      I’d be inclined to focus on the osteo-arthritis and asthma, as the biggies. Include Meniere’s,- show it as “Meniere’s Disease, which includes…” and put in the tinnitus etc that way, making it clear what they are part of the package, not just random symptoms.

      It’s good that you have you new GP’s support – without it a claim is going nowhere. Consultants, too, need to be on your side, as they will be consulted, so you need to make them aware of that, and make sure they’ll support your claim.

      Medication matters, too. Your list of meds will be compared to your conditions, and if they feel that the meds don’t match the claimed severity, it’ll cost you. Personally, I don’t think that’s fair, but it’s happening increasingly.

      Plantar Fasciitis, while painful (I’ve had it several times, so I know just how painful), is usually temporary, so probably won’t count for much in terms of DLA. Include it, though, pointing out how painful it is, and how long you’ve had it. It can be long term, but mostly it’s not, and your emphasis needs to be on the permanent conditions, that can be disabling in the long term.

      CTS, at this stage, is irrelevant, until you have a diagnosis (and then it won’t really count for much, as in many cases it’s fixable, and doesn’t impair your walking ability**).

      ** It may count towards care, though, along with fibro, if it prevents you, say, from preparing a meal.

      The bottom line is that the mobility component of DLA is predicated on your ability – or lack of it – to walk, which is where o-a and asthma come in. PF, too, but as I say, don’t expect that to be given too much weight.

      Don’t forget to throw depression into the mix, too (and mention any adverse affects from the meds.

      Overall, play up what you can’t do, and play down what you can do – it’s the only sensible approach to DLA. And if it comes to a medical examination, try to get it at home – because you find it difficult/painful to travel. If that fails, bear in mind that when you turn up for your medical, you are assessed from the moment you set foot in the place, before you see the doctor and afterwards. That’s why you’re far better at home – you’re then assessed purely on your medical condition, not on the opinion of someone spying on you. And if you think that sounds paranoid, trust me, it’s not.

      I strongly recommend following my advice in this post, too – it’s been proven to work, not just for me, but for others who have followed it.

      This hasn’t, I suppose, been the answer you were hoping for, but I’ve tried to be as realistic as possible, considering that walking ability is the crux of the mobility component. One last thought about that – one question asks how far you can walk without pain (or discomfort, I can’t recall which). If simply getting to your feet hurts, do as I did and just put zero. It is, after all, true.


  27. thanks Ron for your prompt reply. It has helped me a lot and i understand where you are coming from and i will certainly go with your guidelines. I will let you know how i get on.

    thanks again for all your advice and hope you yourself are keeping well.



  28. hello Ron
    my hubby was diagnosed with terminal cancer January 2009
    he then developed pneumonia in February 2009
    and had to have his lung drained
    then in march 2009 they decided to remove his right lung a FULL pneumonectomy
    giving him a chance to live and a course of chemo
    during the chemo june 2009
    he has a moderate to sever heart attack
    brought on by the chemo
    he has had continued breathing problems since then
    and continuing pain
    and finds it hard to walk due to his lack of oxygen
    he is on 12 medication for pain and his heart
    also high blood pressure and suffers stress and depression
    and has a spray for under his tongue
    he attended last month(11/02/2010)
    a medical for the ESA
    and they said he had limited working capacity
    but has to take part in work related activities

    since then the heart doctor sent us a letter saying
    though his heart has improved he has some septal hypokinesis
    he also has central cyanosis, mediastinal shift ,orthopnea ,paroxysmal nocturnal dyspnea
    today we went the chest specialist
    who said he thinks my hubby has COPD
    and is arranging oxygen to be prescribed and lung function tests

    do you think we have a good chance of winning an appeal against the work related activities
    and to be put back into the support group as we are about £25 a week worse off in the activitys group
    and how do we go about it
    any advice is most welcome

    thanks joy

  29. Dear Ron, hope your well,

    I have been getting D.L.A. higher rate mobility for 5 years the first 2 years were after I won my tribunal and then was awarded another 3 years my claim is due to run out on May 25th 2010, so before xmas asked if they could send out my renewel forms out early as my mobility car goes back in March, they told me to ask for a change of circumstances application pack but to put a covering letter iside telling them it was for renewel which I did, I have had a disectomy, 2 spinal fusion operations which have left me in more pain and less mobility and nerve damage in my left leg from the knee down to my foot,I have firbromyalgia, arthritis, depression and sleep deprivation episodes. The D.L.A. have told me I am not entitled to the higher rate mobility component as they asked for a report from my gp I asked a specific doctor who wrote a report for me when I attended my tribunal and was very supportive at that time but has now sent in a report telling them everything that would stop me getting the benefit it is probably my own fault I havnt seen this doctor for a long time so she hasnt seen me so has told them that I can walk unsupervised when out on my own, dont have any problems walking at all, because I havnt been going frequently to the gp for pain killers my pain for my lower back and fibromyalgia must be mild and not severe as I have stated, pain killers dont work for me and I cannot afford perscription charges I go to boots the chemist and buy Co-Codomol as they are cheaper they dont take away the pain but take the edge off to help me cope. My orthopeadic specailist said the surgeries he performed were successful and after taking x-rays says I was left with more mobility I was left using crutches. I am appealing as I think the dicision is wrong and I have got someone from the welfare rights to represent me at my tribunal, I was awarded my high rate mobility award till May 2010 and now they have said I am not entitled they are stopping my entitlement from the 25th February 2010 can they do that, I am worried sick all I want to do is cry I am so angry my health problems are the same as 3 years ago and will only get worse my back problem is a permanent condition.
    I look forward to your reply and any advice you can offer me ( sorry for ranting and raving and possibly waffling)
    yours sincerely
    Dawn Greenan

    • Hi Dawn,

      Your doctor’s behaviour was highly improper and a complaint to your local PCT may be justified. Doctors are supposed to describe your illness/disability in detail – not offer opinions! It says as much on the application form (opinions in your favour are supposed to be ignored – it appears that negative opinions aren’t treated the same way). Your mistake, though, was not maintaining contact with your GP (me too, but at least I get repeat scrips several times a month, so he knows I’m still here and still ill, though I really am going to have to touch base soon).

      Have you applied to see if you can get free prescriptions? If your only income is benefits, then you might (you don’t say whether you work or not). The other option is a pre-payment certificate – if you get 2 or more items a month it’s the cheapest option. With Income Support, by the way, free scrips are an entitlement.

      Many doctors assume that, after a patient has dropped out of sight for a while, they’ve recovered. Yes, I know you’re not going to, but the assumption is, in the absence of any information to the contrary, that you don’t need them, or medication. Then yours is asked for a DLA report and just goes off on one. Highly improper, as I said, but probably human nature. At the very very least you need to talk to the doctor as a matter of urgency (don’t go in angry!), and explain to her how she’s screwed up you life. Explain, too, that you can’t afford prescription charges, though for sure she’ll respond with the prepayment certificate argument. There is no other option, I’m afraid, if you don’t qualify for free scrips on financial grounds.

      Not being prescribed medication will work against you – hugely. Medication is given far more weight than it should be in the application process, because patients have little say in the degree of medication they get, in many (most?), instances. They could be under-medicated for many reasons, not just because they’re not as sick as they claim, but that seems to be the automatic assumption. I’ve lost count of the number of people with COPD who have asked me for advice and who are substantially under-medicated for the level of illness they describe. So, if your prescribed meds don’t tally with the degree of illness/disability you’re claiming, you’re in trouble. In your case, as you have no prescribed meds, you’re in trouble. Telling them you take OTC Co-codamol will cut no ice at all. And in this your GP is right – the fact you haven’t been for analgesic medication suggests you don’t need it. It may be wrong, but as a point of view, I really can’t argue with it. And what about your depression? That’s unlikely to go away without treatment. It can. but the odds against that are very high.

      As I’m sure you know, for the DLA mobility component, walking ability is the main criterion – crutches are immaterial (the distance you can walk is assumed to be with the use of whatever aids you need).

      You’re doing the right thing getting welfare rights people involved they (should), know more than me. However, if this goes to a tribunal you need the support of every doctor who is, or has been, involved, including your GP. Psychiatrist too, if you have one. Ask them if they’ll write letters of support for you to submit to the tribunal, describing what’s wrong with you, and how it affects you (they shouldn’t say you deserve DLA, as that counts for nothing, but they should describe your disabilities in detail).

      And you’re going to have to find a way of getting your meds, otherwise I think that will trash your claim.

      Good luck.


  30. Hi Ron,
    Thank you so much for your reply, it has helped me I am going to see another gp at my practice as I have been seeing her over the last year as I had my gall bladder removed by key hole surgery in October 2009 this operation was a success but have beel left with severe pain on my left side and my ribs 2 weks after surgery I had pleurisy and was treated with antibiotics but the pain remains Ihave gone back and gp thinks it is my 2nd and 3rd rib and that the cartilidge or shaft that is inbetween my ribs is inflamed or had been over stretched when thay inflate your tummy to do key hole surgery, the pain is very sharp it hurts when I take deep breaths in, yawn, cough and sneeeze, I cant lie on my right hand side it is that tender, I did go back to see the consultant who was pleased with the outcome of the surgery and agreed it could be the ribs problem like my gp has said but he has told me to wait till april as this will be 6 months from when I had surgery and if I still have pain to go back to my gp and asked to be re-refered back and he will arrange an ultra sound scan to see if he can find out what is wrong he did say in rare occassions it could be a start of a hernia hope it isnt as I dont think I could face more surgery.
    I am going to apply for a prepayment certificate even though I cant really afford it I am only in receipt of Incapacity Benefit who treat me like a human being I never have any problems when this benefit is up for reveiw so why the D.L.A. dont believe what I say I dont know, I dont qualify for any help at all because my husband works full time and the ironic thing is he has type 2 diabetes and takes tablets and he gets free perscriptions but I will det a certificate and get all the pain killers I need even though I know they dont help I dont get offerd morphine patches like some folk as it makes me very sick but it does help with the pain.
    I am going to ring the kind gentleman at the welfare right office to tell him that I have now recieved my letter telling me as from the 25th February I am no longer entitled to my higher rate mobility even though my entltlement isnt due to run out till May 2010 luckily the motability people have said I can keep the car for 6 months after the date my money stops so that my take me up to my tribunal as I dont know how I will manage to get my 4 wheel stroller on and of public transport I will have to get a taxi and get a reciept and get the tribunal to reimburse me.
    I am at my doctors on Saturday the 13th March 2010 I will e-mail you with a progress report if thats ok with you.
    Take Care
    Yours sincerely

    Dawn Greenan

  31. No doubt you will not post my last comments as I see you ‘moderate’ comments. No doubt to let your benefit scrounging members to have all the say.

    • Peter, if you weren’t such a fuckwit I might have approved your comment – which I’m about to moderate. However, since you clearly are a fuckwit – not a chance, it’s binned.

      Have a nice day.

  32. Dear Ron,
    Hope your well?
    I went to see another gp in my practice and she was brilliant I went with a long list of things that was wrong with me and handed it to her she read it and asked me questions about how my pain and other problems were affecting me we had a good discussion and I told her about my d.l.a. being stopped and she said with all the accurate info I had given her she is going to write a new report on my behalf and thinks she will get my decision reversed she is also going to get me refered back to the spinal surgeon to have another look at my T12 disc and see if he can offer any treatment or may be refer me to the pain management clinic anything is worth a try if it helps with the pain.
    I am hoping the outcome of the new report she is doing for me will help me get my higher rate mobility component back and let me keep my car.
    I will keep you posted of my situation but I am feeling a lot better and more reassured so fingers crossed it works out for me.
    Take Care
    Yours sincerely

    Dawn Greenan

  33. Dear Ron,
    My husband has emphyseema (copd)& he too has been refused DLA,having read most of your emails it’s a bloody farce.
    My Freind who lives in Crete had DLA for life for her son,6 yrs ago they stopped it & she has tried everything to get it back to no avail,she contacted the courts of human rights & told them of her situation & the shambles that is going on in the Benefits system here in little old blighty,the european commission are taking up the case, so why don’t we all of us set up a petition & send it to them to see if they can help all of us,come on it would be worth a try????????????
    Yours Glenda

  34. Ron, thank you so much for your excellent site and commitment to helping others.

    I am a full-time carer and have assisted with claims and represented at appeal tribunals on many occasions. Your web presence is a fantastic alternative to the lasa site –

    I wish you well and found your presentation on the drug regime you endure – – a great piece to inform and discuss drug regimes with persons I care for.

    Thanks again.


  35. hi i have just had my esa medical , i have been suffering with ostioarthritis of the knee and also have a torn cartilage .i have had these problems for over a year now , i have had 1 operation and will be having another one soon .i have been off work for nine months now my ssp has now stopped but my employer has kept me on there books . will the fact im still employed make a difference to my clame ?? also my medical only lasted about 25 minutes which seems too short , oh im 33 by the way. any advice would be great

    • Despite appealing a couple of times for feedback, I have no information on ESA I’m afraid. As ESA seems mainly aimed at getting people off disability benefits and onto JSA – with the occasional successful claim – I don’t know how it works if you’re still employed.

  36. Dear Ron,

    I am so sorry to hear that your very unwell at the moment
    but would like to send you my very best wishes and would like to thank you very much for your very positive and helpful comments you made with reference my enquiry.
    Take good care of yourself and I hope your feeling better soon well as better as your ever going to feel.
    Yours sincerely

    Dawn Greenanxx

      • Dear Ron,

        Dawn Greenan replying again, just thought I would get in touch again sorry it has been a while hope your feeling much better now have received your e-mails so I guess you are up and running again.

        I got in touch as I was having problems with my D.L.A.
        claim after getting high rate mobility for 5 years after answering all their questions honestly and fully and after seeking support from a different gp the decision maker still decided I didnt deserve the benefit by this time I was distraught and went to my gp with my husband who chatted on my behalf after a through examination my gp wrote another report stating what she found upon my examination, refered me back to the spinal team where I have been reviewd and have been examined ny a nurse practitioner who refered me to the ultra sound to have both my shoulders scanned, I am going to have an M.R.I. scan on both my neck and spine on the 2nd July and go back to see the spinal team to get the results of all scans, I have been getting my medication regularly as I now pay for a pre-payment certificate as I don’t qualify to get any help,
        the out come of this I am pleased to say is that I have had my D.L.A. re-instated so I am now getting the higher rate mobility and which I didnt get before the lower rate care component which is very helpful indeed
        so I am now able to get my new car I have been awarded this til December 2012 so I am really pleased and I thought you would like to know it is thanks to you and all the useful information you give to us all so I would like to thank you ever so much for all your help given to me.

        Kind regards

        Dawn Greenan

  37. hi I was just wondering if any body could answer my question. My son is 16 and currently receiving DLA at the LRM and MRC and I am his appointee. He has just recently claimed ESA and he has been awarded it and now has to fill out an ESA50 form. On reading similar posts I seem to think that if he doesn,t score over 15 points on this ESA50 his DLA could be taken away from him. Is this what could happen?? He gets his DLA because of all the care and supervision he needs. Any answers would be appreciated. thanks.

    • Unfortunately, I don’t know enough about the detail of ESA to give you a sensible answer. I’ve appealed for information several times, to no avail,

  38. Hi Ron, just found this site and its very gratifying that a fellow sufferer takes time to help us all.

    I was wrongly diagnosed with chronic fatigue about 5 years ago and because I live alone was given DLA at the lower limit. Test over the following years have changed the diagnosis ( since I changed my doctor ) to copd and to now fully blown widespread emphesemya in my lungs. I have been hospitalised by ambulance 5 times in the last 7 months and 8 times in the last year with severe breathing difficulties. My last full spirometry tests in april showed that 79% of my airways are blocked.

    My ongoing medicines are 3 different inhalers.. regular steroids..daily antibiotics.. omeprazole …. and carbocisteine to help me combat the excess phlegm and mucus I produce.

    It is now very difficult for me as I live alone nowadays and the consultant at the hospital has said I should apply for full blown DLA.

    I moved closer to my daughters and she comes daily to cook my meals for me as my hands sometimes cramp up due to the steroids and I drop things. A chip pan for instance could be quite a serious event.

    I sometimes need night care because my toes cramp up very badly whilst Im in bed and they sometimes need massaging two or three times a night.

    I sleep at my daughters three times a week and my son in law and my daughter each sleep twice a week at my house. They help me dress…. I cant put socks on for example and I shake too much to shave myself.

    The problem is that sometimes I can walk about 100 yards with no problems, however mostly its 40 or 50 yards. And because of this Im not sure if I would qualify for the higher rate.

    Just two questions I have …. how important is a supportive doctor in your claim … he is very supportive by the way …. do I need his written help as well ??

    Ron because I sometimes can walk a little more than 50 yards sometimes is it even worth pursuing a claim.

    By the way I am 62.

    Thanks in advance Ron


    • Hi John,

      First off – emphysema and COPD are the same thing. Emphysema is the defining condition for a diagnosis of COPD. Your meds look a bit on the meagre side, based on what you’re saying. For example, this is what I take

      And CFS and COPD are totally unrelated – one can’t be confused with the other.

      You need to talk to your docs about inhaled steroids – oral steroids are best avoided, except in emergencies. In fact, if you haven’t had one, ask for a Pulmonary Function Laboratory assessment, to find out exactly what’s going on, and sort out your meds.

      Cramp. More likely to be age-related than anything else (and age-related buggeration can set in any time from the 50s on). Magnesium should fix it. 600mg a day until it quietens down, then try reducing to 300mg; if it comes back, stick with 600mg. If magnesium doesn’t work you need to get it looked at as it could be a circulation problem. In fact, get it looked at anyway. And the simplest remedy for foot cramp is getting out of bed and walking around – it stretches the muscles and boosts the circulation.

      Drugs are not the best solution for getting rid of respiratory crap – ask for a physio referral – they’ll teach you some useful techniques and a few months of postural drainage should bring about an improvement. Talk to your GP about pulmonary rehabilitation, too.

      With all due respect, if 79% of your airways were blocked you’d probably be dead or on a ventilator – and your level of medication doesn’t support that either. Likewise your walking distance – you wouldn’t be able to do that. I suspect that your airways are congested. That’s not the same as blocked, and a physio referral should improve that.

      DLA – the focus of a DLA application is what you can’t do, not what you can do. And you describe the bad times, not the good. Your doctor has to be willing to support you in terms of your disability, for a DLA application. It’s no good a doctor saying Yes, I think Patient X should have DLA. What your GP, and any consultants, will be asked by the DWP will be only related to your level of disability. What they think about your need for DLA will be ignored.

      But – and it’s a big but – medication, these days, is taken into account, and if they feel that the amount of drugs you’re taking is too low for the level of illness/disability you’re describing, then your claim would probably fail and, really, three inhalers, antibiotics and steroids represent a pretty low level of medication for disabling COPD. Omeprazole, by the way, is for GERD, not COPD, and if that’s a problem, you’d benefit from a bed wedge, and from sleeping on your left side, to minimise the risk of acid reflux.

      There’s some useful information on managing COPD here

      There’s also another problem – much of what you’re describing here seems to be unrelated to COPD or to your meds, and you really need to talk to your doctors about that as a matter of urgency. There may well be other factors at work.


  39. Hi,
    Just thought I woukld add a comment about the lovely ATOS doctor who came out to me on a sunday.
    I have just seen his report and he lied…yes lied….wrote down that I had told him my feet were numb….they are not and if they were I wouold have been down to the Diabetes centre to see my consultant. Healso said that I walked round the room 4-5 metres…I wish the room was that big.
    We did record the interview and of course I will be going to Tribunal.
    He said I coukld walk 100mtrs easily with no discomfort at a normal pace…he didnt ask me to walk ….but said he did Aaaaagh. I dont like liars.
    He thinks he is a miracle worker as he said I would be better in 3-6 months.
    I have chronic arhritis and Fibromyalgia and in constant pain all the time.
    I wish I could be better in 3-6 months.
    I am under medicated because the hospital are taking so long to sort out my blood tests…had to have a special one …they wont prescribe what would give me the sleep I need.
    I was a diabetic specialist nurse and I have worked all my life and I find it so unfair and frustrating to have to keep explaining my ailments over and over again.
    When I worked I and the people I worked with had the fact that pain is different for all people and should never be underestimated.
    Sorry for the rant.

    • Hi Jacqui,

      You are appealing?

      Unfortunately, doctors do lie, and Atos doctors more than most based on comments on this blog and what I’ve read elsewhere.

      When I was scrabbling around trying to find out why I was so desperately ill in the eighties and early nineties (took me 10 years to find out it was ME/CFS and cost me my marriage in the process), I got so sick of GPs and consultants insisting I was depressed I insisted on a psych referral and, grudgingly, I got it. I was already seeing a psychiatrist privately in an attempt to prove I wasn’t mentally ill (I did – it did me no good at all!), and I wanted transferring to his NHS clinic, for which he wanted a referral. Being too tight to pay for a stamp, my GP gave me the letter. So I opened it.

      Among much else that was wrong, or a lie, one lie stood out clearly. Mr. Graves, he said, is convinced he has bowel cancer, and refuses to believe me when he say he doesn’t.

      The question of bowel cancer had never even arisen, it was a total fabrication. So I took it to my shrink, and went through it line by line with him (he knew me quite well, other than as a patient), and other than my name and address, it was almost all fiction.

      Ultimately, two years on, he wrote to my GP saying all that was wrong with me was secondary depression caused by the refusal of my GP, and others, to take what was clearly a genuine, physical illness seriously. As far as I know, my GP put the letter straight in the bin.

      The bottom line is, as in every other walk of life, you get good doctors and bad doctors, and some who are clearly malign. For some reason, maybe because no-one else will have them, Atos attracts more than its share of crap doctors. And it’s high time something was done about it. Not holding my breath, though.


  40. Hi Ron,
    I am appealing and I have started to pick holes in the report i was sent . Funnily enough the DLA never asked my rheumatologist for a report…..strange lol . Had they done that they would have found out that Fibromyalgia is not reversible and certainly woud not vanish within 3-6 months….does the ATOS dr know something the Arthritis association doesnt know.
    I am under medicated and this was stated in the report but only because I can only take certain drugs as I am also an insulin dependent diabetic and my endocrinologist said that was the correct one to be on. You cant win…so I am going back to the GP and ask him to quadruple my meds …I dont have to take them, just have them on my medical record.
    I am claiming ESA and I have been sent a form to fill in.I have been in contact with someone who has a high success rate with DLA tribunals and ESA so I will keep you posted on my progress.
    I would love to be able to go back to nursig as it was my career…but reality is I find it hard to function and where I had a high threshold of pain I now dont.
    Life is hard enough without all these probs.
    I know that some people do abuse the system and so this has led to more stringent assessments. Its poo.

    • Hi Jac,

      One thing I forgot to mention – but you might have figured out by now. FMS is in the same bag as ME – way too many doctors refuse to accept it exists.

      I don’t think it’s that your pain threshold has diminished, as such, it’s just that unremitting pain grinds you down, physically and psychologically, not least because it’s outside your control.

      I used a to be a backpacker – the proper, long-distance walk type, not the pretend, gap-year species – and two weeks of aching shoulders, a bad back and sore feet was a holiday. Oddly enough, it would be now, for entirely different reasons.

      Then it didn’t matter – it was my choice and pain was transient. Psychologically, that’s a whole different ball game than having pain foisted upon me 24/7 – with no backpack to put down so the pain stops.

      And on that note I’ll bid you goodnight – all being well I get to go to the pub tomorrow, so it’s time to turn in.


  41. Hi Ron,
    Reading your site has helped me to fill in my DLA claim thus far, but i just wanted to tell you my story to see if im doing things right as you dont have much information on back pain.
    Im 23years old, and on giving birth to my youngest child 12weeks ago i suffered at the hands of an incompetant anesthesiologist, on performing an epidural actually severed my spinal nerves, spinal membranes by doing it in the wrong site, and cause a dural tap, i had a procedure called a blood patch to repair the tap but unfortunatly this resulted in another tap making it a failed repair, i spent a week in hospital unable to move lying in a horizontal possition whilst my body did its best to heal, with the help of ample medication and lots of caffine.
    Since then ive suffered terrible back problems, my gp (who is a wonderful, time giving man) is supportive and were currently working through the suitable medications to help with my condition, he has also given me a fitness for work certificate stating im unfit for work for 4weeks which he will update monthly for me, to send off to the benefits division.
    This has also added to me depression, through the pain and being so reliant on my husband, who has given up his job to do what i should be doing myself.
    Does it sound like i am entitled to ESA, and DLA i have been told by JC that im eligable but it is to be granted at the DWP’s decision.
    Im currently on Tramadol, Co-codamol, Naprosyn, and Ibuproen, which unfortunatly doesn’t cover the pain, my mobility is affected as is my competance to do day to day things. I would be grateful for any advice you can give me regarding my claim and my entitlement.

    • Hi Danielle,

      Actually, I don’t have any information about back pain – there’s just COPD and ME/CFS, the conditions of which I have personal knowledge.

      What I can tell you is whoever you spoke to at the JC is out of line – they don’t get to decide who is eligible for DLA or ESA – they just don’t have enough knowledge.

      I would suggest, though, that as your problems were caused by a botched procedure, you need to obtain as much documentary evidence of that as you can to support your claims, both ESA and DLA.

      I suspect, once you’ve used up whatever time is permitted for sick leave, you’ll be drawn into the ESA system, so you need to get your documentary evidence before that time comes. Make it a priority, if you don’t already have it.

      I’m not sure how much point there would be in applying for DLA at this stage – they may well take the view that your condition is temporary, unless your doctors will say otherwise. As your GP is signing you off for 4 weeks at a time, that might be unlikely. You should, perhaps, talk to your GP, and any consultants you’re seeing, about your long-term prospects, like how long you’re likely to be in pain, and whether they physical damage is going to be permanent. Get it in writing, too. It would be very helpful if your GP signed you off as permanently unfit for work. Talk to him about that

      12 weeks can seem like forever when you’re in serious pain – as I know only too well, at 25 years and counting – but it’s really not, and it might be too soon for a successful DLA claim. That’s not so say you shouldn’t apply – just don’t get your hopes up too high, and don’t apply until you have all your supporting documentation in place (always send photocopies, not originals unless they ask for them (and then, keep copies). Use the link on this page to download a DLA application, then you can tinker with it for as long as it takes to get it right.

      And do get advice from a local benefits advice/support centre (try the CAB for info), and any support groups – if there are any.

      A couple of other points – as this was caused by, apparently, negligence, have you sought legal advice? (Tip: don’t do anything until you get all the paperwork you need!) It’s possible, too, that you may need legal help to get the information you need from the hospital, because there’s a very good chance they’ll be expecting a claim for compensation.

      And your husband may well qualify for Carers’ Allowance – the Job Centre will know where to get an application.

      Important: You should not be taking both Naprosyn AND Ibuprofen. They are both NSAIDs, and Naprosyn is much more potent than Ibuprofen. All taking both will do is increase the risk of a gastric bleed. Make sure you always take Naprosyn after a decent meal, too, to minimise side effects.

      Whatever drugs you take, though, they’ll relieve the pain, they won’t eliminate it entirely. An acquaintance has an implanted morphine pump, and even she gets breakthrough pain.

      And finally, there are no antidepressants among your meds? Why is that? There’s no need to suffer – go talk to your GP.

      Good luck.


  42. Thanks for that Ron,

    I am on anti-depressants as a result from the pain, neglegence and over all lack of admittance from the hospital.. I take Citralopram 20mg, but didnt think it was nessesary to include that as it isnt really a medication for my injury.
    The ibuprofen is taken as a top up as i can only take Naprosyn twice a day, so when the pain gets too bad i take ibuprofen and co-codamol to subsitute. Hope this isnt causing more damage to myself.

    So on my next apointment, I shall be asking for a more permanent signing off, as I have been told by the specialist that if it wasnt better by now its doubtful it will ever be, i have mri scans booked for july to see if theres any obvious damage done, as for legal advice, im not sure whether i can, you see i had to sign a form to state i understood the risks of having the repair done one of those risks was a failed repair and another dural tap, BUT i didnt sign anything when i recieved the epidural in the first place, i most certainly wasnt told of the risks that could come with an epidural being delivered, so im unsure as to whether id have a strong case or not. Im next due to see my specialist early August.
    My claim for ESA is due to start July 1st when my income support runs out (15weeks post birth).

    Can my husband claim carers allowance even if i get refused DLA ?
    Thanks so much for your time,

    • Hi Danielle,

      Sorry for the delay – I’m not at my best.

      Yes, your husband can claim carer’s allowance whether or not you get DLA.


  43. Hi Ron, I know this is not part of your experience but thought i would ask anyway. For years now i have not been able to hold down a job through having depression on and off. I was working part time this time last year and was so up and down, eventually it became so bad that i was suicidal.I packed my job in as i could not cope. My partner found me, and i had a complete breakdown. I was seen by the mental health team and have recently been assessed by a psychiatrist. My diagnosis is rapid cycling bipolar. I would love to be able to work but mentally i am not up to it. My depression hits me from nowhere and it is so horrible. My last work place was not supporting , when i was in tears and going through one of my bad times the team leader slapped me across the legs and told me to buck up or get back on my tablets. I am seeing my psych next week and have been informed by the manic depression fellowship that i can claim ESA. What sort of things do i need to put when i explain what is wrong with me. Sorry its so overwhelming. Everything is like a merrygoround and i panic over things. Please any advice you can offer would be great. Is there any place that will help fill in this epic claim form

    Thanks Ron x

    • Hi Debbie,

      I do actually have experience of depression – my ex was seriously mentally ill. However, my best advice would be to seek help from the relevant support groups(s), because I have zero knowledge of bipolar disorder, and it would benefit neither of us were I to advise you wrongly.


  44. hi ron
    i have had asthma all my life i am 49yrs but now it appears after being rushed to hospital several times that i have broncitus and severe Emphysema copd my fev level is 22
    i take tiotropium,seretide,ventolin,nebulizer,and i have also got emergancy antibiotics and perdisalone tablets, i have great dificuilty walking round i struggle to speak an breath eat an breath i also have trouble with acid that comes up and then chokes me when im a sleep as it goes into my lungs . i would like to claim dla but not sure weither they would give it .i dont seam to have the strenght to do much at all as im so tried i have given up on house work etc which i used to love . and i also found bathing showering also causers my breathing to get worse don t no if this is because i use enagy or what do you think i would be able to claim and also give me a clue as to what stage my Emphysema is as drs are very reluctant to say ive had spyromitre test,lung function tests etc and im goin back and forth to hospital every 6wks all they say is my breathing is poor

  45. Hi Ron,

    I am 62 years of age and I also suffer with Bronchiectasis.
    It was diagnosed from a CT and MRI scan, (also from a chest xray), around 3 years ago.
    This leaves me breathless, weazy and unable to function on a daily basis. Not to mention the mucus.
    I have also got chronic synasitis which was found not long ago.
    Furthermore, i suffer from artheritis in my feet, ankles, hands and shoulders.
    My medication is daily anti-biotics, Quvar inhaler, Diclofenic plus a Ventalin inhaler.
    I have claimed for DLA several times and it has always been refused. I was beginning to think i would not be successful until my grandaughter stumbled upon your site.
    Would you be able to give me some advice on how it would be best to fill in the form, as they are so complicated?
    I would really appriciate it.
    Thank you.

    • Hi Pat,

      The only advice I can give is what’s in this post – I’m no longer able to get personally involved.


  46. Hello Ron

    Just came accross your forum thingy and thought i would have my twopeneth.

    I have suffered from depression for over 25 years, but up until two years ago managed to carry on with work (International truck driver). However, i failed my last 5 yearly medical at age 50. The GP sent me for x-ray and other assorted tests and found i had Osteo arthritis in both knees. I had been getting trouble with pain in my knees, but with pain killers was coping with it.

    It is 2 years down the line now and i have to use a walking stick or walking frame just get around the house. The doc has told me they don’t like doing knee replacements until after age 60. So looks like i am stuck with the pain until then.

    Just before xmas 2009 i began getting chest pains, but shrugged them off as there was no tingling in arm or jaw. However in Feb i had a nasty one which did have the tell tale signs so got the Angel of Darkness to run me to A & E. Was put on heart monitor and told i had not had a heart attack, but they kept me in for a week and put me on the treadmill. I explained about me knees telling them walking would be a problem. They just said do best you can. I managed to last about 4 mins on flat, they then said they were going to raise it, but to let them know if it was too much. They could already see i was struggling to breath. so stoped the test and sat me down. I had a severe chest pain shortly after sitting down and was really struggling to get my breath. I saw the Consultant later on and he told me i had Angina sending me home with a pharmacy in a bag.

    I am currently filling out a DLA form, but with the change of Government and Mr Osbournes benefit cuts i am not holding my breath.

    I have been getting Incapacity Benefit for just over a year now. When i had the medical the doc who saw me left the room during the questioning, then after a few minutes came back in and said “Don’t worry Steven clearly you are unable to work so i will approve your claim and you will not have to send in any more sick notes”.

    I have worked since leaving school served in Royal Navy & Royal Air Force. Never asking the State for anything. I would gladly and love to go back to work i was on good money for god’s sake. Now i am reduced to hobbling about the house with a stick or bloody zimmer frame, i am only 50 bloody 2!

    Now my future is in the hands of someone who knows nothing about me, some faceless beurocrat who decides someones fate with the swish of a pen. I suppose i am somewhat lucky as i have a decent doc who i see on a regular basis and numpty trick cyclist who i see every three months. Yes! I can’t bloody stand him.

    Er i seemed to have gone on for a bit. Not sure about whether i have a decent claim for mobility or not. I didn’t even know about DLA until someone mentioned it to me lol.

    • One thing, Steve – angina is a symptom of heart disease, often CHD. It would help your claim if you could say exactly what is causing your angina, so you probably need to talk to your doc. You’d also benefit from angiography, too, to find out exactly what’s going on. Angina can be caused by oxygen deficiency (spasm angina), as in my case, but mostly there’s an underlying heart problem causing it.


  47. Hi, I was searching the internet to see if I am eligible for DLA when I came across your site! Your answers are so much clearer than all the govornment sites! In April 2009 I fell when I worked as a volunteer and broke my tibia and fibula and also suffered a compacted, comminuted tibial plataeu as well as a break in my foot. Over a year later I am still in constant pain and struggle to walk any distance, stairs are avoided as the pain is just too much. I rely on my family to help with the kids and the house. In your opinion, is it worth me trying to claim DLA. My GP refused my application for a blue badge, I tried to claim DLA at the time of injury and was told I hadn’t been disabled for long enough, Susan

    • Hi Susan,

      No reasons at all why you should not apply – as you might have noticed there’s a link to download a DLA form on this page. Focus on the bad, ignore the good – if there is any. One point – in the section on walking,, in the application, the first question asks how far yo can walk without pain or serious discomfort (I’m not sure of the exact wording). Given what you’ve said, if just standing is painful – never mind walking – then “Zero” goes in that box (that’s what I did). The rest of your walking answers follow logically from that.

      There’s a question about how far and how fast you can walk (regardless of pain) – it’s vitally important you don’t guess. If I’d have done that on my last IB review, I’d have talked myself out of it. Time yourself over a known distance – if you don’t have a stopwatch, check your mobile phone; a lot have one, along with the calendar and alarm. Shorter and slower, of course, is better.

      Filling in the claim form is mostly common sense, especially if you avoid the temptation to explain too much – for example, what you might be able to do if you have help is totally irrelevant. It’s mostly about what you can’t do unaided, except in the section that deals with you needing help, for example, when you go out.

      Regarding the circumstances of the fall – any liability there? Just because you were a volunteer doesn’t mean those utilising your services don’t have any responsibility. Just a thought…

      A successful DLA claim needs the support of your GP (to verify your disability); ditto any consultants you might be seeing.. As your GP wouldn’t support your Blue Badge application, that doesn’t look promising, and there would seem to be nothing lost if you were to confront him/her on the subject. You need to make it quite clear just how much pain you’re in, and the physical and psychological effects this is having on you. That’s important regarding your application, and also because medication is taken into account in the DLA claim. God knows why – medication is completely outside the patient’s control, and some GPs are notoriously tight-fisted – why should patients be penalised for that? The thing is, though, if all your GP is dishing out in terms of pain control is, say, Paracetamol (a remarkable number of GPs still believe that Paracetamol is a potent pain-killer – it’s not, and never has been; it’s for mild to moderate pain only), then that won’t count for much towards DLA. And it does rather sound as if you could use better pain meds.

      So, you really need to get your GP on your side, and giving you some decent pain meds, if you don’t already get them. If that doesn’t work, then what the hell, apply anyway – it’s very much a lottery these days, so you might get lucky, especially if you have a consultant that you can rope in.

      Good luck.

      Apologies for any typos I’ve missed – it’s not a good day.


  48. Hi Ron

    I was born with a congential deformity of my right foot i suppose more like club foot i have to wear a Prosthetic foot. I also have a lot of shortening in my right leg as a result of this and a thiner calf. I have also had bad asthma since the age of 4. when i was younger it was not much of a problem and my parents never claimed dla for me as to be honest they were never advised or back then really heard of it. As i am now 30 i have stopped growing and i still have a servere shortening of my leg and i suffer with back pain constantly and since having my little boy seems to have got a lot worse. Years ago my consultant at the time said later in life it was very possoble i would have problems with my back which could lead to curverter of my spine. Three years ago i treid to claim dla and also had citizens advice on my side who got a letter from my GP to help with the claim but i was turned down and had to go to a appeal which i also got turned down for.
    I have since applied again and got turned down again but this time didnt go to the appeal as to be honest the first time i was made to feel like a criminal. since then i have given up. However my symptons have got a lot worse i now suffer panic attacks as i worry about going out my back pain is getting worse and as a result of this it makes my asthma flare up due to the stress as well. I have a constant fungul infection on my stump which is so sore it bleeds as i have to were the foot constantly as this stops my back from being worse the only time i can take it off is to go to bed. My doctor is in the process of getting me sent for a back scan and cant explain my panic attacks, she has helped me get a blue badge which allows me to get out and about a bit more freeley. I just feel the system is wrong i have a disaliblity that is never going to go away or be fixed but the Dla say i can only claim if i can not walk or have both my limbs missing can you help me anyway.

    Many Thanks


    • Hi Lisa,

      First of all “the Dla say i can only claim if i can not walk or have both my limbs missing ” is a lie – that’s not how it works at all. I have all my limbs, and I get DLA. OK,they don’t work that well, but still.. . However, I’ll contact you by email about that, as there is information that I want to give you that would enable people to fiddle the system if I posted it here. The best advice I can give you is on this page – I just want to expand on a couple of details.

      I take it the DLA told you that nonsense on the phone, because they’d never dare put it in writing, so as I always say, don’t talk to them – do everything in writing so you have a copy or what you say to them. And, of course, their replies.

      You should check with your local CAB office, to see if they can put you in touch with a local benefits advice group and/or an advocacy group. Both would be helpful, I think.



  49. I hope I’m not stepping on anyone toes writing this.

    old saying when I use to work for a charity.

    It’s not the disability or illness that matters, but how seriously that illness or disability affects your life.

    Example person with spina bifida turned down for DLA, women with Bunion gets high rate of care and mobility, she proved her condition caused more problems.

    It does not matter how ill you think you are you have to convey this to the DWP or ATOS.

    • Precisely what I’ve been saying for the last couple of years if you check out my posts on the subject of DLA. It matters little how ill you are – all that matters is how disabled you are, and that the disability is demonstrable.

      Hell, in 1986, when I got my DLA, the doctor took me out for a walk, to see for himself whether I could or not (as it happened – not). and that’s what should happen now – get the ATOS quacks off their arses, away from their checklists, and make them do what a doctor is supposed to do – physically assess the patient.

      I also have minor spina bifida, by the way – a lumbar vertebra that is incompletely closed. It’s common on my mother’s side of the family, and when my uncle married into a family where the gene was also present, the result was absolutely disastrous – a child with its spine laid open from neck to coccyx, which wasn’t survivable in the 50s.

      And a severe bunion, by the way, can be extremely painful, and profoundly affect walking ability.

  50. Hi Ron
    I am on the higher rate of DLA and also get esa is there anything else i should be claiming,this is all new to me as i have worked all my life.
    Thanks Ron

    • Yes, you could try for the care component of DLA – if it’s justifiable. Just be aware that you might well lose what you’ve got in the process

  51. Hi Ron
    Thanks for your reply,i have just been informed that i am suffering from post traumatic stress disorder do i have to tell the dla about this.
    Regards and Thanks

    • Hi Tom,

      You’re supposed to tell them about every change in your situation but, that being said, sometimes it’s better to keep your own counsel, especially if there’s no material change in your physical condition, just a change of name.

      It could get tricky if your case is reviewed, though.

      Whatever you do, whether you tell them or keep quiet, there could be unwanted repercussions, now or later.

      Sorry, Tom, but the best I can tell you is that the law says you must. ESA, too, of course.


  52. Cheers Ron
    As i have said everything is new to me my gp is off until September so i will need him to add this on to the doctors note he gives me then.
    Thanks Again Ron

  53. Hi Ron
    Not to sure as to how many people are waiting to attend thier Appeal regarding an ESA decision based on the health assesment! (Mine was for 25mins and scored 12pts) Anyway i my appeal was lodged on the 27th October 2009 and i have onyl just had a date for the Appeal tp be heard on the 10th September 2010 so for those of you who have only just applied it looks like a long wait.
    I have been signed off as unfit for work for the last 18 months had 4 surgical procedures relating to Arthritis of the elbow and hips, unable to walk any significant distance and still having provided further medical evidence by way of GP and Consultants letters on 3 seperate occasions of a significant progression with regards to my condition, the DWP still refuse to revise a decision and are adamant that my appeal should still be heard. I dont have a problem with going to the tribunal i just think that they (DWP) are being bloody minded and will stand by the ATOS medicla come whatever.
    Steve Rolfe

    • Hi Steve,

      Not sure it’s in this post but I’m pretty sure I read that there’s something like 40,000 appeals pending. God knows what a shambles it’s going to be when they start moving IB claimants to ESA.

      As far as I can see, most ESA and DLA claims are initially turned down (ESA because that’s how it’s designed). Almost a year for an appeal, though, is insane. If I was cynical (ha!), I’ might suspect that they’ve been waiting to see if the surgery made you fit for work . . .

      Make sure you take copies of all relevant paperwork, and dish it out to the tribunal as soon as you get in the room. If they’re reluctant – give it to them anyway, then they can’t claim they didn’t have sufficient information.

      They often reverse decisions on appeal, but very rarely before that, so there’s still hope.


  54. Hi Ron. Your blog is excellent !
    I am so glad I have stumbled on it because I am feeling helpless and here is why.
    In 1996 I was diagnosed with Degenerative disc disease my spine and a dislodged disc . Plus , some arthritic facets required a cortisone injection. I have suffered with occasional sciatica too. My back has never recovered and I have had numerous painful periods, taken loads of various painkillers and seen osteopaths. I can walk but when it is bad after some distance my back locks up and I become like a toy in which the batteries have gone flat. My legs seize up and I come to a painful halt. In 1996 I also had my first case of prostatitis. I have suffered with this urological problem ever since and undergone various tests and still being investigated. In 2007 I have one knee operated on and then in 2008 I was operated on an anal fistula and fissures and ever since my health seems to have gone downhill. I have been off work for 3 weeks now suffering with digestive disorders (IBS like symptoms, says my GP) and I am due to be investigated on this too.
    My problem is work.
    Ever since 2008 I cannot sit for longer then 10 minutes without pain so I stand, every working day , at my desk. I am almost 57yrs old and my back is not taking it anymore plus depression is settling in , I have panic attacks and thoughts of wishing I could exit this life.

    I am in the process of filling the DLA form . It is on my desk now and i find it daunting !
    Yesterday I went down to my CAB office to talk about the possibility of claiming benefits and I was simply “adviced” to go to the Job Centre to obtain the DLA form and then fill it in myself back home. They looked like they had no time for me.
    If I could get some financial assistance I could reduce my working hours and perhaps struggle on with work a bit longer.

    Do you think that I have grounds to claim ?

    from London

    • OK, first thing to do is follow the advice on this post. And use the link here to download a DLA form. Use that to fiddle around with it until you’re totally satisfied, and then transfer it to the form you got from the Jobcentre (your claim, if it’s successful your award will be backdated to the date you got the claim pack). Resist the temptation to explain too much, the word “but” mostly has no place on a claim form! Focus, too, on the bad days – DLA is mainly based on walking ability.

      You can claim DLA while working

      Check the yellow pages and phone book for benefit support/advice groups in your area . This is information the CAB should be able to give you – I can’t think why they didn’t, It might be worth another try.

      I have panic attacks and thoughts of wishing I could exit this life.

      Talk to your GP – get treatment for depression now, and a psych referral as a matter of urgency. There’s no shame in doing that, I’ve done it myself.

  55. Hi Ron

    I came across this web site while looking for information on disability with asthma and copd.

    i am 41 and have had asthma since bearth and is now cronic asthma. i became quite ill with my breathing in november 2009 with a bad cheast infection and was put on 2 courses of antibiotics, 3 courses of steriods and was reffered for loads of teats at hospital. In febuary 2010 i was diognosed with C.O.P.D. and a lung capacity of 40% left.

    Since november i had to stop working and claim ssp from my employer as i was to ill to return to work. from that i then claimed employment and surport allowance when my ssp stoped.

    I am still under the care of the hospital at the resportory clinic and also my doctor and am still declaired unfit for work by both.

    I had a ATOS medical recently and have just been informed that they have declaired me fit for work and have stoped my benift claim even though im still sending in sick notes form my doctor and the hospital still declairing me unfit and adivised me to give my job up.

    I do get very breathless a lot of the time. most of the time i become breathless walking less than a 100 yrd’s and also walking up and down stairs i become breathless a lot of the time.

    Medication im on is, Ventolin Evohaler, Montelukast Sodium 10mg, Symbicort turbohaler 6mg, Tiotropium Dry Powder Capsules 18mg, Cetirizine Hydrochloride Tablets 10mg and Ranitidine Tablets 150mg.

    I am also looking at putting in a claim for DLA from the advice of the specialist at the hospital and my doctor as well who both say i should claim for it.

    Any info or advice you can give me would be greatly appiciated.

  56. Hi Ron
    Well i attended my Appeal Tribunal and after 11 months i was informed that my appeal has been disallowed!!! The Tribunal Judge stated “That although your condition has significantly become worse i can only use the medical evidence provided at the time of appeal in October 2009 and the score of 12 points still apply’s”

    I guess i am going to have to start the whole process again, i did contact the DWP and my payment centre as soon as i arrived home and for a change they were very helpful and i was informed to reclaim again providing the doctors letters since 2009 showing that the condition has become worse. And quote they are normally able to make a decision based on those letters and the Tribunels decision making in awarding LCW?? If that is the case why dont they give the Tribunel discretionary powers to consider a chnage in condition especially when there is a long wait between Appeal and Tribunel.
    I shall keep you updated on how it goes from here.

  57. Hi Ron
    I have just got a form from DWP asking me to fill a limited capability for work questionnaire,have you come across this brefore and is it another way of them trying to stop anything they can from my benifit.

    • Yeah, I’m fine Tom, and publishing posts most days (one today, one yesterday – 5 in the last 5 days, in fact).

      **Note for the DWP – “fine” is a relative term – basically it means I can get out of bed and sit at my computer, or maybe read. Don’t get carried away!

      I’m often not responding to comments, though, for the reasons given on the “Read before asking questions” page.

  58. hi ron im recieving middle rate care allowance i have tried for dla before but no luck i have a pacemaker fitted to help me from having black outs ive had a full colon extraction and now have a collostomy bag on for life i use a fluttering machine to help clear mucus from chest and also use ventolin and flixitone inhalers. this has all happened from 2005 i have bronchetitis im scared to apply again for dla incase they look into my care allowance and start ajusting that should i try again and can i ask another dr to help me fill my form out medical end dont want to offend my long term dr that ive been with for a long time but i think a good word from a different dr might go along way helping me towards my claim also my pacemaker for blackouts i have been fitted with could you tell me what question on the esa form would apply for this,or could you tell me what questions i tick on the esa formregarding the problems i have spoken about. many thanks

  59. Regarding the amount of medication one should take to satisfy the DLA people:
    Curiously my boyfriend was told (at appeal – they didn’t grant anything the first time) he couldn’t have severe back pain because he was on more medication than a cancer sufferer. That time they finally granted lower mobility because of his social and agoraphobia. They said he should pay for counselling. Firstly, it wouldn’t have been enough to pay for counselling, and secondly, if he has social/agoraphobia how is he going to get out the house to go to counselling?
    Then he died, age 29 (probably something to do with severe pain and depression), and the autopsy proved his spine was crumbling. So his back pain was real and a lot more serious than anyone had imagined (a bone problem, not a muscle problem). Of course, he’s one less person on their books. They neither know nor care about the human suffering.

    • Hi Richard,

      Sounds like your boyfriend’s own doctor was no great shakes either . . .

      As for them neither knowing nor caring, I believe that they do know – they simply don’t give a shit. How the Atos employees, dedicating their days to wrecking the lives of total strangers, sleep at nights – now that really is a mystery.

      As for the meds, I’ve known for some time that not having enough was a deal-breaker (though as that’s often the fault of tight-fisted GPs, and shouldn’t reflect on the claimant), but saying someone has too much is lunacy, especially as some cancer sufferers might not need much in the way of pain meds until close to the end.

      Should be interesting at my PiP assessment – I take 16 drugs daily, all but 4 of them multiple times, and I’m by no means unique – should cause their dinky little checklists to burst into flames.


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