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 http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011925
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.
**You can, by the way, get an ESA claim form here
http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/esa/DG_172014
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!
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 again.how 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 http://ronsrants.wordpress.com/2008/06/06/drugs-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 http://ronsrants.wordpress.com/2009/02/03/copd-and-nothing-but-copd/
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 http://www.welfarerights.net/guides/disability.html or a local benefits advice/welfare rights group, if you have one (the CAB should know).
Ron.
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.
Ron.
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!
Cheers
Lynn
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:-
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. . .
Ron.
PS – Hope that last para doesn’t sound too maudlin – having a rough day. . .
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!!
Lynn
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 http://ronsrants.wordpress.com/2008/05/28/copd-and-dla/ , you can see why I haven’t – the risk of losing what I already have is too great.
Right – must hit the kitchen. . .
Ron.
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.
Lynn
Yeah, I’ve always looked perfectly well. I was hauled off to intensive care in 1985, when I was living in Machynlleth, and I looked in better nick than most of the staff!
Cars are a sore point at present – I managed to get myself banned last year (usual reason). I could drive again, now, but really, I need a car and a power chair.
Motability could usefully do a package of a basic automatic car, with ramps and a basic power chair. It should come in under £10,000 as there’s no VAT or car tax on Motability products. I suggested it to their CEO about 10 years ago – very good idea, he said. Not that good, they haven’t been tempted. So, since I can’t have both I’ll stick with a powerchair, but I do need one I can get in a taxi
http://ronsrants.wordpress.com/2009/08/29/ive-bought-a-lemon-and-i-want-my-money-back…/
Ron.
Done.
http://ronsrants.wordpress.com/2009/09/03/esa-feedback-urgently-needed/
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
Lynn
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..
H.
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.
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
Kieron
Hi Keiron,
Let me think about this one and I’ll get back to you later today.
Ron.
Thanks very much ron appreciate it.
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
http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/
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)
http://ronsrants.wordpress.com/2009/02/03/copd-and-nothing-but-copd/
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 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
http://ronsrants.wordpress.com/2009/06/19/life-its-not-a-dress-rehearsal-and-no-one-gets-out-alive/
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 http://www.cssassociation.org/ 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.
Ron.
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
Lynn
Hi Lynn,
Apologies for the delay – your comment got missed somehow. This would be the place to start – Industrial Injuries Disablement Benefit
http://www.jobcentreplus.gov.uk/JCP/Customers/WorkingAgeBenefits/008433.xml.html
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
http://www.jobcentreplus.gov.uk/JCP/Customers/WorkingAgeBenefits/Dev_013944.xml.html and here
http://www.direct.gov.uk/en/CaringForSomeone/index.htm I can’t see anything about having to wait 3 months – it sounds absurd. Your friend can submit a claim online here http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/CarersAllowance/DG_10012547 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.
Ron.
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!
Laura
Hi Laura,
I can’t remember either but it doesn’t matter – what matters is the money!
Absolutely! That stuff’s lethal.
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?
Ron.
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!
Laura
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!
Ron.
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.
Ron.
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.
Christine
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.
Ron.
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.
Christine
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.
Ron.
Thanks ROn
I will wait to see what happens and then get back to you …
Thank you again
Christine
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?
Thanks
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.
Ron.