COPD and DLA…

One of the search terms that brought someone to this blog was “What rate DLA will I be entitled to with COPD?), so I thought I’d try to address the question. Then I realised it was well nigh impossible without sweeping generalisations – ah well… Note: I am not an expert!

First of all, benefit rates:-

Incapacity Benefit (IB) (for as long as it remains!), has a long-term rate, I believe, of £84.50 per week (others rates are lower, short-term, for example, is £63.75), payable weekly, with supplements payable based on previous National Insurance contributions. It’s an earnings-related benefit, despite what the Daily Mail likes to scream, you have to have worked, and then become to ill to continue, to qualify – it’s not free money handed out to all and sundry on demand. The website below clarifies the eligibility situation.

Disability Living Allowance (DLA) is rather more complex, but the rates are as follows; it’s paid every 4 weeks:-

Mobility Component

Lower rate £17.75 per week

Higher Rate £46.75 per week

You need to qualify for the higher rate to be eligible for a Motability vehicle.

Care component

Lowest rate £17.75 per week

Middle rate £44.85 per week

Highest rate £67.00 per week

How do these benefits apply to COPD (Chronic Obstructive Pulmonary Disease)? It depend very much on how ill you are. I have COPD and some people get less than me; conversely, some get more, and it’s not unfair to say that it’s a bit of a lottery. A good place to start is this website, which deals with financial support for disabled people. That’s where I got the rates info.

Your IB claim is based on a points system – check out this website for details. You can also download the information as PDF document – see foot of that page.

If you have become unfit for work, then once your Statutory Sick pay runs out, you should transfer to Incapacity Benefit, after completing a form which, to put it bluntly, is a minefield – get help from a benefits expert if you are at all unsure. Officially, there may also be a medical examination – given the current demonisation of IB claimants, I think you can guarantee being summoned for one.

My advice would be to insist on being examined at home – the reasons you give depend on your personal situation – because how you live (how well you cope day-to-day), is central to your disability. Turning up at some hired-by-the-day office, to be confronted by a person who has no idea of who you are, and how well you cope, can be extremely counter-productive (and, of course, you’ve no idea how well qualified the private-enterprise doctor is to assess you – he may be so rubbish he’s unemployable in the real world, or some old, retired, doc working for pocket money; there are many reasons why these people work for DWP contractors, instead of themselves or the NHS, and being the best doctor in the world certainly isn’t one of them!). So, get them on your home turf, and make them see how badly you are affected on a day-to-day basis.

That applies to DLA as well – I had my DLA examination at home in 1986, I never even considered not doing so (I’m affected by several other factors as well, not least the damage done by being struck by lightning in 1983), and it was so rigorous I spent the next three days in bed. Had I driven to a venue for my examination, it’s extremely unlikely I would have been able to drive home again. That’s something you need to bear in mind, as is the fact that you have the right to decline to perform any action that you believe will be harmful to you.

If the IB form is a pain, you won’t like the DLA form – it’s huge. The main problem with DLA is that you can’t apply for a specific component, like mobility, you have to submit a blanket application and wait to see what you get, and how long you get it for. I get the impression that awards “indefinitely”, like mine, are scarce these days, and many people have to reapply every couple of years – this will make it almost impossible to obtain a Motability vehicle (on benefit, it’s pretty much the only way to afford a car, and for many disabilities, a car is essential; I’d be completely housebound without mine, as I can’t use public transport or taxis – long story). You need the higher mobility rate for at least three years to qualify for Motability.

When completing the DLA and IB forms, resist the temptation to flannel – be honest and concise. Always tell the truth – lies will drop you in the mire – but tell the truth that benefits you. For example, you describe how you are on your bad days, NOT on your good days, nor do you expand on that to say, for example “But some days I feel a lot better”. Sounds obvious, but I know people who have done just that, and talked themselves out of benefits. It’s also a bad idea to exaggerate how badly your ability to walk is affected, because they are very likely to take you for a walk – they did with me. At the moment, I’m completing a DLA claim form in the hope of getting the middle care rate, as I really need to employ someone to clean for me, and the “how far can you walk” question is multi-choice for time and distance – so I went out with a stopwatch and timed myself. The result was a lot worse than I thought. So had I guessed, I’d have done myself no favours.

There is a question about how far you can walk without pain. If, like me, you can’t stand without pain, then the answer that goes there is “Zero”. Don’t fanny about with “Oh, on a good day maybe a few yards,” if it’s zero, then say so unequivocally. And the same applies to all the questions.

Going back to IB for a moment, I’ve just had a re-assessment, and the IB50 form is a bad joke, so I suspect the application form may be too (some sources suggest it’s the same form). What I did, then, when I felt the multiple-choice questions just didn’t apply to me, was write “None of the above,” in each case, and submitted my answers to the entire form typed on 12 sheets of A4 paper, suitably keyed to the questions to which the answers referred*. I’ve done this several times, as it allows me to give a fuller picture than ticking boxes does, and as long as your name and national insurance number is at the top of every sheet, there won’t be a problem. I’d also advise signing and dating the final sheet. Doing this is also a god idea if, as in my case, writing is painful and, consequently, illegible – if they can’t read it, you could lose money. Why this form isn’t available as a download, like the DLA form, I’ll never know.

* Just one example of the stupid, inappropriate, questions was “Can you tie a bow in a piece of string?” Why would I want to? My answer said that this was irrelevant, but I can’t tie my shoe-laces so that they’ll stay tied, which in the real world is far more important than tying bows in bits of string!

Obviously, for anyone with COPD (or any other illness supported by substantial medication), how well you are will depend on how assiduous you are with your meds. You may think that, on the day of your medical assessment (if you have one), that it may be a good idea to omit or reduce some, or all, of your meds – I couldn’t possibly comment!

And that’s pretty much it, without getting deeply into each benefit, which has been done elsewhere online, though I can’t find any advice specifically regarding claiming DLA with COPD, so my advice would be to get yourself a claim pack and give it your best shot. You’re almost certain to get something.

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104 thoughts on “COPD and DLA…

  1. I’m glad you explained it to others, as it took me over a year to get my DLA, and then only through appeal. I think your blog explains the process better than the official DWP advice. Thank you

  2. Thanks – nice to be appreciated!

    The thing about the DWP, that many people overlook, is that they’re not on our side. I’m quite sure the IB50 was designed to make it as hard as possible to claim.

    On the IB50 points system – you need 15 for a pass – I racked up well over 100 points, and I still wouldn’t be surprised if I was called in for a medical!

  3. Interesting. Should there be a system by which lung function establishes rights to benefits ? I am 42% working part time self employed. War Disablement pension of 20%.

    My history is that I left Army in 1970 fully fit early transfer to reserve (defence cuts affecting Army helicopters) to join Police.

    I developed breathing problems over the summer of 1970 which were diagnosed as a return of my childhood asthma and I was referred to the consultant the late John W Paulley of Ipswich Hospital.

    I now know that Paulley was involved in what Ipswich Hospital recently described as “Pioneering exploration of the effects of stress on the progress of organic disease”

    If the hospital uses the word “Research” then its destruction in 1998 of Paulley’s hospital records (whilst refusing to disclose) would be against NHS rules. Hence I suspect “Pioneer of exploration”

    Paulley prescribed the stress hormone prednisone as a repeatr prescribed drug and forbade GPs (including our two GP police surgeons) to prescribe bronchodilators. Incidentally he also refused to issue blue steroid medicalaert cards so his patients had no personal records of the amounts repeat prescribed.

    And in fact I remained on repeat prescribed oral steroids for 14 years. Until a brilliant consultant (P D Snashall Charing Cross) got me off them by a three year wean.

    In 1999 I was awarded a war disablement pension very shortly after applying for it. For lung damage sustained in Army service 1970.

    The MOD doctor described the situation thus “Unfortunately after this soldier left Regular army service in 1970 he fell into the clutches of an NHS steroid prescribing mad man”

    In Dec 1972 I suffered a cardiac arrest. This was attributed to asthma but in the 1990s (In spite of refusals to disclose medical records and 21 years of records going “Missing” from seven different NHS and police locations) I did get a locum GP note of 1972 which shew that the temporary death was due to a prescribed overdose of SILBEPHYLLINE.

    Now I am 58. I was found fit for work after six months sick in the late 90s. At all work test my BP was 230/145 and peak flow around 220. Cortsiones from 70 to 84 have caused damage to cervical veterbrae 5 6 7. My lungs are 42%

    I was lucky in defending myself against cortisone osteoporosis because I always did weightlifting. And in fact (To Charing Cross amazement) in the 70s and 80s I worked part time as a bouncer with lung functions showing 25% of predicted.

    What happened to me at All Work tTest was the can you lift a bag of sugar. I can lift a quarter of a tonne. Blood pressure attributed to the stress of the test and maybe to historical cortiocosteroid induced changesto stress response. IQ 146 got a mention.

    Peak flow fit for work if he takes more meds. BP due to stress recation fit for work if he takes more meds.

    And this was upheld by tribunal.

    What seems to be emerging now is that in COPD if you have a powerful weighgty musculature (two sources of anerobic energy from muscle chemistry) that you can do a lot more than a thin person more dependent on just aerobic energyu supply.

    In other words we big guys can work and then rest whilst the aerobic system restores the muscle chemistry and so on.

    I am beginning to think this aint fair.

    There should be a guideline. If your lungs are say 50% then you can get incapacity and try to keep your meds low.

    Otherwise we continue the situation in which meds are oversprecsribed to achieve a theoretical fitness to work and not prescribed for true clinical reasons.

    My wife wants me now to stop self employment and go back to doctor to get a sicknote.

    With 42% lungs I can weightlift. I can ride a mountain bike to exercise my dog alongside. I can work two allotments. So functionally they would find me fit for work. I understand that in USA guys with 25% lungs are riding forty mile bike excursions. They key being a heavy bodyweight of muscle ?

    I started using weight training techniques against medical advice in the 70s to keep this level of activity going. It is now emerging that I was right. If the NHS had done that for me I would feel different. But what the NHS did was f-ck me up with negligently prescribed corticosteroids and then destroy or lose records in the 90s when I was one of 1200 people awarded legal aid to sue. None of the 1200 got to Court.

    I think it is about time the system I have paid into all these years paid me back to live a gym and swim lifestyle with the minimum of prescribed drugs.

    Around here one in seven of the working age population is on long term incapacity. We have four or five of them working allotments at our site. And they work on the side doing market stalls, collecting scrap metal etc.

    I am thinking gravy for the young geese should be gravy for the old gander.

  4. i am 71 and have been diagnosed with copd after being admitted to hospital on several occasions and now i have a nurse visiting me and am going on a study with the hallam university for telehealth and i have been told i cannot get dla but i might be eligable for attendance allowance is this right

    peter

  5. Hi Peter,

    Yes, you’ve missed out on DLA I’m afraid (it’s age-limited, though the logic of this escapes me) – the cut-off point is 65 for new claims, though once you have it, it can be paid for life, as mine is, with incurable conditions like COPD. Anyone else disabled and reading this, and approaching 65, get your DLA claim in now!

    You could get Attendance Allowance, so get your application in without delay – info and claim pack here
    http://www.direct.gov.uk/en/disabledpeople/financialsupport/dg_10012425

  6. i have copd i work part time i have been refused d l a is this because i am working i am aged 61 yrs should i appeal

  7. Hi Doreen,

    Yes, your part-time work will almost certainly exclude you from DLA (I was wrong, then, but now that seems to be increasingly the case), though it does depend on what you’re actually doing. I have a feeling, though, that any form of work will rule you out (other than therapeutic work).

    Thing is, you’re claiming a disability benefit, and if you’re able to work the first thing they’ll ask themselves is how disabled is she, really, if she’s able to work? Unfair, maybe, but not unexpected.

    The other factor is whether or not you gave a fair account of your condition. Personally, I never answer the questions on the form, either originally or when I’ve applied for an increase in DLA – you just can’t provide sufficient information. I type my answers on paper, keying them to the questions on the form. You can give them more information that way. And take care what you say. Don’t, for example, say that you can’t walk more than 40 yards on a bad day, without getting breathless, but can run for a bus on a good day. All information after the words yards is entirely superfluous! You may think that’s obvious, but I know people who have lost benefit by giving too much information.

    If you type IB50 in the search box (top right), you’ll find some advice on completing benefits applications (mainly for the IB50, but it applies to the DLA form too).

    You can claim DLA up to the age of 65, and, by all means, appeal – a substantial number of refusals are reversed on appeal. Good luck.

  8. thanks for your advice i enjoy reading your advice mayby i would be better giving up this part time job but it gets me out the house and i would not be sure i would get dla anyway so could be worse off best wishes doreen

    • doreen i was suposed to go to a tribunal next friday but i recieved a letter telling me the appeal advisor had overturned the original decision and i was after all entitled to DLA and i am just waiting on my letter telling me what im entitled to.They sent a doctor to my house and he done a report on me and obviously he seen i was having trouble breathing and with all the other evidence from my consultant and my Pulmonary Rehabilitation Team and Psychologist and sending them EVERYTHING (no matter how small it may seam) from Hospital appointments to letters saying how i managed from day to day.Never tell anyone that on a good day you feel a bit better,always say how you are on your worst day.Make sure you send your repeat perscription showing all your medication and hopefully all goes well for you

  9. Hi Doreen,

    I’m surprised that it’s going to a tribunal – are the DWP disputing the severity of your COPD, and thus the degree of disability? If so, you need to make them understand that COPD can only get worse, and that severe exacerbations are unpredictable. And if your COPD is smoking-related, it’s vital that you stop. It’s not a case of oh, the damage is done so why not carry on? Continuing will do even more damage, and if the tribunal knows that you’ve quit it’ll look better than if you’re wilfully making yourself worse by continuing to smoke.

    Note – Your claim’s about illness, not about feeling better. Many illnesses fluctuate, and COPD is one such, but the DWP doesn’t (or won’t), understand that good days only mean you’ll revert to bad days, so don’t mention them.

    I assume you’ve had a DWP medical examination? If not, it’s hard to see how they can justify the tribunal. Anyway, ask you GP for a copy of any information he has provided to the DWP, so that you’ll know exactly where you stand. Without knowing what information they have, other than what you provided, you’ll be working in the dark.

    If your GP hasn’t provided any info to the DWP, ask him/her to do it for you, describing the severity of your illness, so that you can present it to the tribunal. If the doctor thinks you’re not severely affected. you should be told (COPD isn’t automatically disabling – it depends on how advanced it is).

    Sadly, the DWP take little or no account of how ill you feel, only on how you perform physically. Saying you can’t walk far because you feel too sick cuts no ice; saying you can’t walk because of pain and breathlessness does.

    Answer their questions as honestly as you can with the emphasis on your illness, not on any good days you might have (and depending on how far advanced your COPD is, you may not get any good days at all). And if you have any other conditions, like arthritis, even if it’s not too severe yet, toss it into the mix. Omit nothing, in fact, that can be perceived as adding to your illness.

    Don’t offer too much information when questioned. For example, if they ask if you can cook a meal from scratch, if you can’t, then the only answer is No. It’s not “Not really, but if I get a little help I can.”. It’s what you can do, alone and unaided, that matters.

    As for walking, for a successful claim, shorter and slower is better. Again, focus tightly on the bad days. And don’t guess – you may well be worse than you think you are, as was the case with me – walk a known distance, make a note of how you feel and how long it takes (a stop-watch is good, and if you don’t have one, many mobile phones have this function, as do most digital watches). If you guessed on the form, and the actuality is different – and in your favour – be sure to tell the tribunal (see below).

    If you have the time, talk to your local benefits advice centre (the CAB should have a list, or try Yellow Pages). If they have an advocacy service, then do take advantage of it – they know the system better than you, and will support you at the tribunal.

    From what I’ve been told, the tribunal will try to bully you by constantly going back over some questions, trying to catch you out in a contradiction (this is why it’s important to always tell the truth – it’s easy to remember). I think asking twice is fair enough – three times, and I think you should say, politely, we’ve done this twice already, can we please move on? If they insist, then co-operate, but make it clear you’re feeling harassed. And NEVER lose your temper, no matter what the temptation!

    If you have new information, like a deterioration in your condition, for the tribunal, submit it in writing right at the start (take half a dozen copies). Try not to contradict anything you said in your claim form. It may well be a genuine error, but these people aren’t on your side, and will take a dim view of it. It’s quite in order to include anything you forgot to mention on the form, though, especially if it enhances your claim.

  10. thanks for the very useful information ron my doctor has told them that my mobility is reduced due to shortness of breath but she didnt indicate how my illness affects me i will let you know how i get on doreen

    • The thing to bear in mind is that your doctor won’t really know the detail of how you are affected on a day-to-day basis. The bottom line is that shortness of breath affects every aspect of your life, as it does mine, something you need to make clear at the tribunal. Don’t minimise the effect – emphasise it at every opportunity.

  11. ron i am going to the tribunalnext wednesday the doctor said to them that my mobility was restricted due to copd but she lso said to them that i have osteoporous maybe that will help will let you know outcome thanks for all your advice best wishes from doreen

    • Hi Doreen,

      The best of luck next week. Really, COPD should be sufficient but, hey, it all helps. Don’t be afraid to lay it on with a trowel! Don’t forget, while your mobility is important, as I said, COPD affects every aspect of your life – make sure they realise that.

      Fingers crossed!

    • Hi Doreen,

      Good luck tomorrow. One last thing – I’ve never been to one, luckily, but I believe tribunals can really test you patience so, whatever you do, don’t let them provoke you into losing your temper. Might be an idea to take notes with you, too – it’s a stressful situation, and you don’t want to forget anything.

      When they ask you questions, don’t offer too much in your answers. For example, if they say Can you cook a meal? and you can if you have help, but not otherwise, then just say no. And there is no such thing as a good day in this situation – just bad days and worse days!

      By the way, I’ve put links to all my COPD medical posts in this post
      http://ronsrants.wordpress.com/2009/02/03/copd-and-nothing-but-copd/

  12. ron have you ever tried alternative treatment treatment for copd i have seen an article saying that spiriva a treatment i take can cause strokes and heart attacks quite scary i am thinking of stop taking it and looking for some herbal alternative if i can find one doreen

    • Hi Doreen,

      I’ve been taking an almost identical drug – Atrovent – for over 30 years. I’m still here. If I worried about side effects for all my meds, I’d never dare get out of bed! The thing to bear in mind is that just because a side-effect is listed, it doesn’t mean you’re going to experience it. Every drug is a trade-off between side effects and benefits – if the benefits exceed the side-effects, we’re doing well but, in truth, most drugs actually do work that way.

      These are my COPD meds http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ If you looked them up online you’d see many of them have the potential to seriously harm (and what they might do in combination with each other doesn’t bear thinking about), but obviously, they haven’t, and odds are they’re not going to. It’s really not worth worrying about.

      The real danger in your life isn’t your medication, it’s your COPD, and conventional medicine offers the best chance of managing the disease. Remember, all “herbal” medicines that actually work have long ago been incorporated into conventional medicine. What’s left is useless at best, and cynical quackery at worst. There is no herbal treatment for COPD, and anyone who tells you there is is lying.

      My current meds were arrived at partly through long experience, and partly from a 2-day trip through the Pulmonary Function Laboratory, to find the drugs that best complemented what I was already taking. One of those drugs, Serevent, at the time it was prescribed, had killed about a dozen people. That, it was soon figured out, was because they’d wrongly stopped taking their inhaled steroids. Continue taking inhaled steroids, as well as Serevent, and all’s well. I don’t doubt, though, that somewhere online you’ll find an article that says Serevent can kill you.

      Note: whenever you get a new drug, always ask if it’s to be taken as well as your existing meds, or instead of something – doctors sometimes forget to tell you. If people had asked that with Serevent, there wouldn’t have been a problem..

  13. thanks again for your sound advice again you have relayed my fears i will continue taking my inhaled steroid but i was on unyphylin continis also spiriva and the seritide inhaled steroid i was beginning to get worried about an article i read about spiriva saying that this drug increased your chances of taking a heart attack or stroke the tribunal is on wednesday will let you know how i get on thanks again doreen

    • Hi Doreen,

      It’s all about numbers. Consider this; your normal risk of a stroke is, say, 1 in 10,000 in normal circumstances (I don’t know what the actual figure is, this is just for illustration), then you read an article that, perhaps, says that a drug you’re taking increases your chances of a stroke by 100%. That looks terrifying taken at face value. All it means in reality, though, is that the risk increases to 2 in 10,000 – a 100% increase. And that’s just not worth worrying about.

      That’s how the Daily Mail presents its scare stories – they just say XYZ increases the risk of whatever, without any numbers to support the claim, and without numbers, they might just as well be telling you it’s going to rain tomorrow, or maybe not. The information is just as useless.

    • Hey, that’s good news! Thing is, though, if you qualify for medium care, surely you should get higher mobility? Anyway, you’re in the system now and, in six month’s time, there’s no reason why you can’t have another go, and try for higher mobility.

      How long did you get it for, if you don’t mind my asking? I feel very strongly, with something like COPD that’s not going to go away, it should be for life.

  14. Hi Ron
    Came across your site when googling re DLA
    Was very interested in what you say about COPD as my husband has just been disallowed higher rate care and his higer rate mobility completely taken from him, this was the tribunals decision just yesterday. The higher care rate was just being appealed as the Mobility has already been granted. He has been on these benefits for the past two years and has a mobility car for around 20 months
    We are completely gutted as my husband has very bad COPD, also has Chronic Kidney Failure, has a stoma bag fitted and not least of all only has one arm.
    Our mobility car will have to go in two weeks and I really dont know what we will do as we live in the country and my husband has to attend hospital appointments on a regular basis.
    Am going to CAB tomorrow to see if they can tell us where to go from here but my husband is really depressed as he has been very ill since the start of October and feels like giving up on everything.
    We phoned Motability today about the decision and they said they had never heard of an award being stopped in the middle of a 3 year term. So there is something wrong somewhere. The thing is we dont really know where or who to go to from here.
    Flo

    • Hi Flo,

      That’s a disgraceful situation – I often wonder how these people sleep at night. How the hell your husband can fail to get more DLA, never mind lose what he already has, beggars belief. I know it won’t make you feel any better, but you’ve fallen into a trap many people fall into – applying for more benefit and winding up with less – it happens far too often. It’s the reason why I’ve not applied for the middle care rate, even though I need it. I think the tribunal may have made a simple error (assuming they weren’t actually brain-dead), as when claiming maximum care it’s quite possible to lose the higher mobility rate (it shouldn’t happen, but these people are in a world of their own) – but how they can refuse higher care and then also remove higher mobility, given your husband’s condition, is quite beyond me – and any other sane person, I suspect.

      Ask the CAB if they can refer you to a specialist disability benefits unit – there’s almost always one in everybody’s area. They’d know if it’s possible to get the tribunal’s decision reversed. It might be worth checking to see if you have a local advocacy service, to represent you – if you feel it might be useful.

      Write to your MP, too, asking him/her to raise the matter in the commons (a good MP would do that anyway, but some need to be poked with a stick), you can get his/her contact details here http://www.theyworkforyou.com/ Write to Gordon Brown, too – you can get his contact details from the same place.

      It’s probably a waste of time trying to get help from James Purnell, he’s a waste of space, but venting your anger on him is probably worthwhile – might get the fool more in touch with reality.

      Talk to your GP and tell him what’s happened with your husband’s benefit – he can arrange transport to hospital. It can be a tedious journey but at least it’s free. I believe you can reclaim taxi fares for attending hospital appointments, but I’ve never been able to make the system work.

      If all else fails, contact your local Rotarians, Lions (even the Masons, if you know any), or whatever. The idea of charity might well stick in your throat, but don’t let it – it could be a way to get a car to tide you over until your husband’s benefit is reinstated (I’m pretty sure, if you exhausted the appeals process, that you have to wait 6 months before you can reapply).

      With your permission (and keeping it anonymous if you wish), I’d like to write a blog post based on your comment and this reply, to bring it to a wider audience (over 3,000 a month and rising). When it comes to James Purnell and his department – there’s a lot about him here – I’m not usually too polite. In this instance, though, I’d make an exception. Purnell is the secretary of state for work and pensions, by the way. You probably already know that, but it’s surprising how many people on benefit don’t know who’s ultimately responsible.

      When you re-apply, let me know. I devised a method of completing benefits forms that maximises the chances of success (it worked for me anyway). The information is actually scattered over several posts but, as I’ve done with COPD, I’m going to pull it all together in one post to make it easier to find very soon.

      Do try and get you husband to talk to his doctor about his depression, and not get too wrapped up in his problems. I know that’s easy for me to say, but depression can be a serious problem with chronic illness, without the added effect of recent events. See also the footnote on this post http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/

      Anyway, the very best of luck with this farce – I do hope there’s a way to get the decision overturned…

    • Hi Doreen,

      Well, that saves a lot of hassle. You should get back-pay to the date you applied (or asked for a claim pack, if that’s the route you went).

  15. hi ron i have just been diagnosed with copd i am 42 with 3 kids and a 2 year old grandaughter can i claim dla and if so how do i go about claiming and where
    thankyou for your help

    • Hi Lou,

      I’m a bit busy right now – give me an hour or so and check back – I’ll post the info.

      Oh, and if you smoke, and you haven’t already stopped – stop now. It WILL kill you with COPD.

      Ron.

  16. hi just read that you have an advice sheet about dla i have asthma and mild copd and really struggling on a day to da y basis i apply for dla in november last year and was turned down just got apeal date threw for the 30 april iam worried about it if you got any other advice i would be very gratefull as dont now what to exspect on the day hope you dont mind me asking gina

    • Hi Gina,

      What to expect is different for everyone, so it’s impossible to give specific advice. However, there are some things that apply to everyone.

      At the tribunal, keep you answers brief and to the point. Don’t offer extra information unless you feel that they’re trying to minimise your condition. If, for example, you’ve said you can’t cook, that’s it. Don’t explain – even if it’s true – that you can cook on some days, or if someone helps you. Just stay with the basic fact – Can you cook? No.

      If you ever have good days, I’d be wary of mentioning them. You’re ill, don’t complicate things by saying that some days you’re not quite as ill, as it weakens your case.

      You’ll find they may try to bully you by repeatedly asking the same questions. I think answering twice is reasonable. More than that and you’d be justified in pointing out that you’ve covered that question adequately, can we move on please?

      Most importantly, no matter if you feel they’re trying to piss you off, try not to take it personally, and DON’T lose your temper.

      If you use inhalers, make sure you’re seen to be using them while you’re there (if you use a spacer device, take it along). And if you have tablets to take while there, do ask for water.

      Since you’re so worried, though, you should talk to your local benefits advice centre (the CAB should be able to tell you, or try Yellow Pages); they may be able to get someone to go with you and help you out at the tribunal. And if you have to go by taxi, you can claim back the fare.

      The advice sheet mainly covers how to fill in the form, but I’ll send you a copy anyway, it may come in handy.

  17. thanks for info just a line to state my condition i have asthma since childhood and now copd i have had it along time but nw one told me i was just passed about hospital then docs all the time i have mild copd but just going upstairs kills me iam 44 and have 3 kids who are great they do a lot for me and my hubby has parkingsons my mate takes me alot of places as cant walk far were i live it is all hils so i am in a mess as i kept us all going just a bit fed up with eveything sorry to bore you with my live story just nice to talkto an outsider gina

    • Hi Gina,

      Don’t worry, it’s not a problem.

      Just a thought, but have you had a medical for DLA? You should have had.

      Your condition is similar to mine – I’ve had asthma and bronchiectasis since I was 2 and, of course, COPD is pretty much inevitable after lifelong respiratory illness. I don’t go along with the idea of “mild” COPD, though. COPD is pretty damn serious at any stage and, of course – and I’m sorry if this is news to you; it shouldn’t be of your doctors are being honest with you – but it’s only going to get worse, so the more help you can get now, the longer that will take (please tell me you don’t smoke!).

      If you’ve not had a referral for a Pulmonary Function Laboratory assessment – to make sure you’re adequately medicated – try to make that a priority. I can take a couple of days (as an outpatient), but it’s worth it. Some doctors can be stingy with drugs – this is what I take
      http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/
      And I’ve put my main COPD posts here http://ronsrants.wordpress.com/2009/02/03/copd-and-nothing-but-copd/ but type COPD into the search box (top right), and you’ll find even more.

      Are you getting any help from Social Services? If not, try to enlist your GP’s help (or your consultant, if you’re seeing one), in trying to get a stair lift installed (with a family, you’d probably have no luck getting a home help). How successful that might be depends on where you live (where I live what you get is sod all!), but if you don’t ask, you won’t get anything anyway, so it’s worth a try. As both you and your husband are disabled, that should work in your favour.

      Ron.

    • Hi Gina,

      That’s unusual. How can they turn you down without a medical? At the tribunal, it could be worth asking how they can make a decision without one. In fact, I’d be inclined to call your local office tomorrow – be nice, they’re mostly ordinary people doing a thankless job – and ask how you’ve reached the end of the appeal process, which might go against you, when they can’t even be bothered examining you. It’s worth, too, asking your GP for a copy of anything that was sent to the DWP about your claim (it’s my understanding that you have the right to do that), likewise any consultants that you might have listed (phone the hospital, talk to their secretaries). If it accomplishes nothing else, you’ll know what the DWP know about you, and figure out where the weaknesses in your case are. Explain, if asked, that you have a tribunal to attend, and need to know exactly where you stand.

  18. hi will do that tomorrow and the meds i take are steroids pregnilisone 7.5 was on 8 aday but am reducing put on loads of weight also aminophylin 2 aday seretide 2 puffs twice aday ventolin 2 puffs 3 times aday and when needed i have 4 every 2 weeks singular 1 aday lansoprazole 1 aday and folic acid 1 aday bye for now gina

  19. This posting has been really helpful, I was diagnosed with emphysema 3 years ago and only today I was told to apply for DLA when I called for a claim pack the lady asked do I have trouble getting out of bed, what sort of question is that? When I said sometimes she said how does that work then, so I said because sometimes I don’t even go to bed. I can’t see me getting this benefit but hey ho I’ll give it a go. Thanks for all the great posts here.

    Michaela

    • Hi Michaela,

      Good to hear from you. I’ve been offline for a few weeks, which is why this post hasn’t appeared, but if you venture back this way, do post another comment, with an email address if you have one (don’t worry, they don’t appear on the blog), especially if you haven’t submitted your claim yet.

      The thing about the DLA people is that they’re just like a stranger you might talk to in the street. Their knowledge of emphysema (and any other condition), is probably marginal or non-existent, so what seems like a daft question to you, or me, is quite reasonable to them.

      If you have trouble sleeping, though, try a bed wedge – see http://ronsrants.wordpress.com/2009/01/29/a-bed-wedge-for-copd/

      Ron.

  20. dear ron,
    my husband is 43 an was diagnosed with copd in december 08, we tried for dla but got turned down, this i don’t understand, we asked them to look again and was still refused, what can i do? thankyou

    • Hi Joyce,

      Sorry, I’ve been offline for weeks, so in view of the time that’s gone by, I’ll email you – and post it here too, in case it’s useful to anyone else.

      Ron.

  21. Hi, my partner has just been diagnosed with COPD , he stopped smoking nearly 3 years ago but in the last year his breathlessness has got slowly worse , at first it was just at night trying to get undressed and take his shoes off, now he has to rest halfway up the stairs , he cant walk far without stopping most days and slopes and hills he cant do, he has been given an inhaler to help with the phlegm which does help a little, they said that his lung capacity is 62% and say this is mild, but seeing him everyday and how he struggles it doesnt seem mild to me
    he is getting quite depressed , he also has IBS which in his case means he needs to get to a tiolet fast or he will have an accident , he had a small stroke about 4 years back and suffers with high blood pressure and has been admitted to hospital with suspected heart attacks twice , they said his heart was ok and that when they did a hole in the heart closure it must have upset everything
    he has funny turns now where he gets dizzy and his vision gets blurry, they say its nothing , the job seekers wont let himsign on as they say hes unfit for work but he cant get incapacity only income support, hes only 47 and we have a son of 14 still at home so its not easy , since being told he has copd he is applying for incapacity again , but i am wondering if he could get DLA , he gets so down but keeps on struggling to keep busy , they say if you dont smoke it wont get worse, but ive watched him get worse in the last couple of months as i can see there are things he could manage but cant now
    has anyone got any advice for us , please
    my mum also has this disease and she is 67 so i know what it can do
    please help
    Carol

    • Hi Carol,

      There’s a lot to think about there, so I’ll get back to you, probably tomorrow.

      The easy stuff – yes, you can get DLA for COPD – see other posts in this thread, and others (type COPD into the search box at top right).

      Your partner needs his doctor to sign him off as permanently unfit for work – that will get him into ESA (or, if he’s been ill since last October 27, Incapacity Benefit).

      Depression needs treating. No argument. It’s not going to go away and almost always gets worse. There is no virtue in suffering. You too – I’m pretty sure you’ll be depressed, as well.

      One thing to bear in mind – COPD can’t be cured, but with good medication and lifestyle, it can be managed. Check out this post, http://ronsrants.wordpress.com/2009/02/03/copd-and-nothing-but-copd/ particularly the link to my drugs page.

      I had IBS for years, and only one thing ever had any effect – industrial quantities of live yoghurt (and I’d tried pretty much all the drugs on offer). And I mean industrial – 2 kilos a day for openers, tapering off as things improve. It cured mine, but I still get flare-ups which yoghurt takes care of. Good job I like the stuff! I find the Rachel’s brand very good – avoid Yeo Valley, it’s extremely acidic; they add lemon juice for some reason. Yoghurt works by replacing troublesome bacteria in the gut with beneficial bacteria – this is one instance where the advertising is honest – but you DO need large amounts as a lot of the bacteria simply get digested. I ate about 500g at a time, 4 times a day.

      More later.

      Ron.

  22. Hi, me again…

    If your partner only has one inhaler, he’s seriously, and dangerously, under-medicated – COPD puts quite a strain on the heart, and I’m pretty sure he doesn’t need that. And no inhaler will do a thing about sputum (phlegm). It need to come out, and he needs to get advice on how to do this. He needs to be shown – it’s hard to describe the process – and the best time to get rid of it is when he gets up in the morning. Basically, if he has a coughing spasm of a morning – many of us do – that’s always good, it clears out the crap.

    The coughing has to stop, though, and he’ll need codeine linctus, from the doctor. Nothing available over the counter will help, so save your money.

    He also – and this grosses some people out – needs to monitor his sputum, its taste, colour, even smell. He has to do this to see if it’s infected. That will show in the taste (basically, offensive and maybe sweet or salty, or both), the colour, very green or yellow (normally it should be barely coloured). An increase in volume can signal an infection, too. All these things will be evident up to a week before he gets sick enough to go to the doctor, giving him a chance to get treated before it really gets a hold. Not all GPs understand that, which is frankly disgraceful, and one of the reasons I always have my own supply of antibiotics.

    You say “he has funny turns now where he gets dizzy and his vision gets blurry, they say its nothing ” No, it’s not nothing – if it was, it wouldn’t be happening. As your partner has already had a stroke it need investigating.

    And

    “they say if you dont smoke it wont get worse”. I don’t know who told you that, but I’m afraid it’s just not true. COPD will always get worse – your partner’s, mine, everybody’s. That’s what it does quite naturally, but it will get worse much more slowly than it would if he’d carried on smoking. As I said above, though, it can be managed. With the right drugs, and maybe a few lifestyle tweaks, there’s no reason why your partner should not be a hell of a lot better than he is now, and live a long and reasonably comfortable life.

    A priority, though, should be an outpatient referral to the chest unit at your local hospital, which will certainly help with his medication – one inhaler is hopelessly inadequate – and it will help with his DLA claim too, Don;’t wait, though, get the form in – just show it as awaiting an appointment. The link below takes you to a page with a link to get a downloadable copy of the DLA application. If you’re not sure how to do that, let me know.

    I’m worried, too, about his heart op. Has he been checked out to make sure nothing has gone wrong? Problems there could affect his breathing. Or it may be a normal side-effect. Either way, a check-up is indicated.

    Lung capacity of 62% doesn’t actually mean a great deal, I’m afraid – and that’s certainly NOT mild. What matters are his Peak Flow and FEV1 readings, which his GP can test in a few minutes. This is now in a “traffic-light” system – Green you’re OK, Yellow, you’ve got problems, Red, you’re in trouble. Personally, I find that too simplistic – the numbers are more meaningful – but it’s useful for patients with no medical knowledge. Personally, I think it should be a continuous scale, shading from green to red, so you can see exactly where you are. Just being told “Oh, you’re yellow,” tells you nothing. Yellow shading to red, or green shading to yellow, would be more meaningful. But, of course, no-one asked the patients, they just foisted it on us!

    Exercise is beneficial but, of course, it’s not always possible. If you live in a flat area (no hills), then just going out for a gentle walk once a day will help. He should find that over time his breathing improves and he can work further, and a little faster, without running out of puff. The trick is to start out gently and build up slowly – it’ll take time.

    If he decides to apply for DLA – and he should – let me know. There are ways to enhance the claim and increase the chances of getting paid. There are some tips here
    http://ronsrants.wordpress.com/2009/07/07/claiming-dla-and-esa-some-tips/

    One last thing – there’s a condition called Gastro-Oesophageal Reflux Disease (GORD), that often accompanies COPD. Simply put, an overflow of stomach acid can reach the back of the throat and get into the lungs, where it can do a lot of damage (hurts like hell, too). There’s a link to advice about this on the page I linked to in my previous comment.

    I think I’ve covered everything but, if there’s anything else, feel free to get back to me.

    Oh yes – be careful of the Internet, there’s a lot of seriously bad advice out there about COPD (and pretty much everything else – every fruitcake with an opinion and an Internet connection is out there). I’ve had the precursors to COPD – asthma and bronchiectasis (I’ve never smoked), all my life after simultaneous measles and whooping cough trashed my lungs, and I’ve had COPD proper for almost 20 years – whatever else it may be, it’s not a death sentence. It’s only recently I’ve become seriously disabled, and that’s due more to my ME getting worse than my COPD. I do know what I’m talking about, mostly from personal experience (and I know more than my GP, too, to his annoyance). That “Top Health Blogger” badge on my blog was awarded for the quality of my COPD information. That’s not me being boastful – knowledge, with chronic illness, is strength and, anyway, “doctor knows best” no longer applies. Treating chronic illness, like COPD, should be a partnership between doctor and patient and, by the sound of it, your partner’s doctor is asleep at the wheel.

    Ron.

  23. Hi , thanks for all your advice , i got it wrong it was the FEV1 test that was 62% his peak flow was £3.50
    he also has this odd tickle in his throat that he says makes him more breathless , he did tell them this but they didnt really say anything
    before he quit smoking his peak flow was 600 as we had a peak flow because of my stepsons asthma , he didnt really have any symptoms untill about a year after he quit smoking , never had a smokers cough or anything and i used to have to walk fast to keep up wth him , and it has got alot worse in the last year especially the last three months i would say
    apart from the inhaler i said about they have given him ventolin , this was after telling him it did no good with the lung function test and it doesnt help at all with his breathing
    if it was me i would love all that yoghurt :) but he doesnt like it so thats a shame
    thankyou though it is good to have such down to earth advice as i know what you mean about reading things on the net ,
    i will be in touch
    you take care
    Carol

    • Hi Carol,

      FEV1 should be a number, like 1.65. Anyway, a Peak Flow of 350 indicates that he needs a lot more meds than just a couple of inhalers. What’s the other inhaler, by the way?

      it has got alot worse in the last year especially the last three months i would say
      apart from the inhaler i said about they have given him ventolin , this was after telling him it did no good with the lung function test and it doesnt help at all with his breathing

      Sounds like your doctor really is an idiot. Seriously – he’s asleep at the wheel here.

      Ventolin, in asthma, relieves the attacks. In COPD, it has a similar effect – opens up the airways – but he needs to use it regularly – say 2 puffs 4 times a day (or, really, as often as he feels he needs it – it’s quite impossible to overdose on the Ventolin inhaler, the dose is tiny) – see how that goes. He also needs a Volumatic spacer device for his inhalers, which will make them more effective. He can get one on prescription, but check with the chemist – it might be cheaper to buy one. It really is money well spent. And insist on the Volumatic – smaller spacers just aren’t as good.

      I’d say that, as well as what he’s already got, he needs Phyllocontin Continus tablets – at the dose that suits him which, as an ex smoker with a PF like that, would probably be the same as mine (2 every 12 hours), plus a high-dose steroid inhaler. And that’s an absolute minimum.

      he didnt really have any symptoms untill about a year after he quit smoking

      That’s because smoking disguises the symptoms – the same reason smokers often don’t know they have cancer until it’s too late. People often think that giving up smoking makes them ill. It doesn’t, it just hid the fact that they were already ill.

      As for yoghurt – what’s worse, that or IBS?

      The tickle in his throat is probably nothing, but he’s probably swallowing a lot to try and ease it (he may not realise he’s doing it), and that will cause air to build up in his stomach which, in turn, will constrict his lungs and make it harder for him to breathe. It’s a condition called aerophagy (literally, air-eating), and it affects a lot of people with respiratory illness. Sucking a sweet can help with the tickle, and belching fixes the air problem – if he can belch, it’s something I’ve never been able to do.

      If he wears a belt, switching to braces will help his breathing, as will not wearing a tie (if he does). And it’s probably best if he goes out when you get the hoover out – dust will be bad for him, even if he’s not allergic to it.

      I think the first priority should be for the pair of you to go and talk to your doctor (or, if you have a choice, see someone else), and insist on a hospital referral. Your GP is being tight-fisted with the meds, for some reason, and the hospital consultant is very likely to prescribe a higher level of meds.

      Something to bear in mind. If the hospital doc recommends a nebuliser, tell him about your financial problems – he should be able to arrange for a loan machine. And get back to me, too, if you ever think of buying one – it’s very easy to pay too much.

      And that’s about all I can think of for now. Except do try not to worry – it won’t change anything.

      Ron.

  24. thanks , i think we will have to go back and see the doctor and ask for a referral , i have seen what this has done to my mum , she can have good and bad times , shes had it since she was about 34 but didnt give up smoking till she was 50 so she is lucky she isnt worse i suppose ,
    thankyou for your help and advice
    its good to find someone honest , that knows about it
    kind regards
    Carol

  25. Hi Ron

    Have stumbled across this excellent forum whilst looking for info on completing DLA forms for my sister (50, COPD, IBS and possible pancreas problems – under investigation).

    She is unfit for work according to the doctor (who has supported her DLA claims) and is now unemployed, yet she is insufficiently disabled, apparently, to get a successful outcome re DLA applications. She gets so breathless walking to our mum’s first floor flat across the road that she has to use the stairlift.

    My memory is unclear about how many applications and appeals have failed but I’m going to try to visit for a few days soon and help her with the forms for a final time.

    A Welfare Benefits person helped to fill one in then wouldn’t help again and has said she can do it herself (ie is capable). Our niece helped her with the most recent form (possibly went OTT?).

    Depression has really set in and there is a genuine physical, mental and financial need .

    Anyway, I will read more of your forum another day!

    Thanks

    Laura

  26. Thanks, Ron

    I’ve spoken to her today on the phone (lives 120 miles away) and she was successful after all with the last application, gaining the mobility component (she told me it was the highest level) but not a caring payment and it is that that she has been feeling aggrieved about, although she’s about to throw in the towel re the form filling.

    I won’t ramble on about everything she has told me re past dealings with officialdom, advice centres, etc but could you please answer three specific queries for now:

    1. If she submits another application in the hope of gaining the caring element at the basic level, is there a danger that, in considering any new app. along with previous ones, she could have the mobility payment reduced or even removed?

    2. A relative contacted the Welfare Rights people recently when my sister became so ill and down that she couldn’t even get out of bed and they recommended a new form be requested (which was done). My sister then received a letter with the form about her “change of circumstances”. Is worsening of her condition ‘change of cirumstances’? She wants to phone them to say she isn’t going to complete and submit the form – and has until Sept 7th to get it in. I’ve told her not to phone them, leastways until we have a better idea of definitions and risks to the hard-won mobility element. I think she has been told this is the final form now, whether by W&P or Welfare Rights, I’m not sure.

    3. She isn’t on the internet so all submissions are on paper and hand written. Other people have given assistance with form filling in the past but is that still allowed, ie, can she dictate and someone be an amenuensis?

    I wish I’d spotted this site earlier as she and I now know she presented a “coping” picture in the past.

    Many thanks for any info or advice you can give.

    Laura

    • Hi Laura,

      If she submits another application in the hope of gaining the caring element at the basic level, is there a danger that, in considering any new app. along with previous ones, she could have the mobility payment reduced or even removed?

      The risk, sadly, is very real. Check out the comment by Florence Graham in this thread. My personal view is that, as her award appears to be quite recent, losing it would be unlikely as it would make their original decision look extremely foolish and incompetent – but that’s just me; they may not care how badly it reflects on them. Frankly, though, it’s a lottery.

      Other people have given assistance with form filling in the past but is that still allowed, ie, can she dictate and someone be an amenuensis

      Absolutely, as long as the appropriate box is signed at the end.

      Is worsening of her condition ‘change of cirumstances’?

      That’s exactly the circumstance they mean.

      I wish I’d spotted this site earlier as she and I now know she presented a “coping” picture in the past.

      A common mistake – many people don’t grasp (or don’t want to grasp), that they’re applying for DLA precisely because coping is now beyond them. You should always describe a bad day, too, never a good day (if there are any). I think some of us, too, over-estimate our abilities because we just don’t want to accept we’re as sick/disabled as we are. It can be an expensive mistake.

      She wants to phone them to say she isn’t going to complete and submit the form – and has until Sept 7th to get it in. I’ve told her not to phone them

      My personal inclination is never to discuss a claim on the phone, always in writing. You can, if you wish, fax your sister’s local office on her behalf (if you don’t know already, XP has a nifty little fax applet – it just needs the built-in modem connecting to the phone line). I’m not sure about Vista.

      Ron.

  27. Hi, an update about Ian , he was admitted to hospital last sunday night and we found out he has Extrinsic Allergic Alveolitis, he was on oxygen for a week , is home now and we have rehomed the parrot which was the cause
    he is on steriods for six weeks, what we dont know is the long term damage and how it’ll afect him, its not progressive as we have removed the cause but we havent been told how much damage has been done
    if anyone knows about this i would be greatful
    thanks
    Carol

    • Hi Carol,,

      Extrinsic just means that Ian was responding to something outside the body – a fairly normal respiratory allergic reaction, in other words, even though it seems to have been a bit extreme. Long-term damage is unlikely.

      The important things, with the steroids, is that Ian is taking enteric-coated Prednisolone, and that he tapers off, and doesn’t stop suddenly. Other than that, he should be fine.

      A question, though – how long had you had the parrot? Such a reaction isn’t usually to something you’ve had for a while…

  28. Hi, he has to take six steroids a day and then cut down to four over the next six weeks , we had the bird for four years and i think hes been getting breathless for maybe two of them but not badly like the last few months , they told him about two years ago he had emphesyma just from a chest xray , then he had a lung function test and they lost the results, as i told you he had one recently as was told he has COPD , then in hospital he had a chest xray they said it didnt show anything , so they did a scan and said it was due to the parrot , they told his the damage was perminent , so i dont know if this is true or not , he was on oxygen for a week, everytime he came off it his sats dropped, he seems not too bad now on the steriods , so much better than he was, i’m just worried that once he comes off them he might be worse, or hopefully ok now we dont have the parrot
    thankyou for all your help
    kind regards
    Carol

    • Hi Carol,

      It’s unusual to get permanent damage from an allergic reaction – are they possibly picking up something not related to that – or are they referring to the emphysema? That’s permanent.

      Chest x-rays aren’t wonderful, but they do show the damage from my bronchiectasis, so I’d have expected Ian’s damage to show, though a lot depends on the skill of the radiologist…

      As for the steroids, he needs to come off them very slowly, reducing them by tiny amounts over a period of weeks (how long that takes depends on the dose he’s on), which he seems to be doing. My advice (what strength is he on?), towards the end, is to ask the doctor for a week or two’s supply of 2.5mg Prednisolone, so he can slowly taper off to nothing. That’s worked very well for me in the past, as I’d find going from 5mg to nothing was too big a step.

      It’s probably worth vacuuming carpets, furniture and curtains, to remove any lingering traces of the bird – if you haven’t already. And normally, Ian would be better out of the room when you’re vacuuming and dusting, from now on (that’s why I don’t clean much – I have to do my own!)

      Do you have any lung-function monitoring equipment at home? I have an electronic peak flow and FEV1 monitor and a pulse oximeter (which, for me, proved that my need for oxygen wasn’t as bad as I’d thought it was), as well a a blood-pressure monitor. Mind you, it depends on how you’re fixed financially, but – as you may already know – you can get a basic peak flow meter on prescription. If you already have one, it’s likely to be a Mini Wright – this should have a yellow scale (Wright were forced to recalibrate these by the EU as they were inaccurate – something I’d complained of to my GP for years, not that he cared).

      It’s probably worth talking to Ian’s doctors about a nebuliser, if you don’t already have one – they can make a huge difference.

      This is the Peak Flow/FEV1 meter I bought http://ronsrants.wordpress.com/2009/02/24/lung-function-monitoring-in-copd/ and my nebuliser http://ronsrants.wordpress.com/2009/07/26/my-nebuliser/ and this is the pulse oximeter I’ve got http://www.pulmolink.co.uk/pulse_oximeters//CMS%2050L/1/priorityascending/oximeters_detail.html It’s very easy to use – just turn it on and stick a finger in. Removing the finger turns it off automatically.

      If you need any advice on where to buy stuff, let me know – I was a buyer in a previous life (pre COPD, ME/CFS), and I’m pretty good at tracking down a good deal. Oh, and never forget to claim VAT exemption on Ian’s behalf – makes a big difference

      Ron.

  29. I have been on IB for years with alcohol addiction but have managed to stop drinking and at a recent medical was told i was fit for work. However my COPD has got worse over the last year so i appealed against the decision but didnt get anywhere because they were only concerned about the drink problem and not the COPD. I am now having to sign on for jobseekers knowing i am not fit to work.
    I have been told by my doctor i have the lungs of a 93 year old and i am 47…should i get another med cert and apply again for IB?

    • Hi Julie,

      Yep – your COPD would need to be the subject of its own claim, rather than just being carried on from your drink-related claim.

      Your first step is to get your GP to sign you off as permanently unfit for work. By the sound of it you should have no difficulty with that. Then you can submit a claim for ESA (and won’t that be fun!)**, and, of course, for DLA.

      If your doctor will certify that you were unfit for work due to COPD before October 27 last year, you can claim IB. Otherwise, you’re saddled with ESA, I’m afraid.

      There’s lots of COPD stuff here http://ronsrants.wordpress.com/2009/07/31/all-my-copd-and-flu-posts-in-one-place/

      and info about claiming DLA and ESA here http://ronsrants.wordpress.com/2009/07/07/claiming-dla-and-esa-some-tips/

      Anything else, get back to me, though I’ll be out for the rest of the day, so it may be tomorrow before you get a reply.

      Ron.

  30. Hi julie, i know how you feel, my hubby appealed because they said he couldnt have IB about a year ago, the JSA dept said he couldnt sign on as hes unfit for work, he had the breathing troubles then but they didnt count that because it had happend after , he had to keep getting signed off sick because of vertbrae problems with his neck which affect him arm and he can get in so much pain with it , plus he has IBS , they still stopped his IB now he gets income support which isnt much for the two of us and we get a small amount of child tax credit for my son , he is quite angry because when he forst went to the hospital about his breathing problems they just told him he was over weight, he has a bit of a belly but is only 12 st they virtually just said he was lazy , he did get a lung function test a few months after buit they lost the results and didnt do anything for another year , then they told him he had COPD , so he struggled on hardly able to walk or dress and undress , if he hadnt been admitted to hospital last sunday we would never have known it was the allergy to our parrot and he could have got so much worse and i dread to think what would have happend as his SATS were so low and he had to be in hospital on oxygen for a week , i am quite angry about it myself and feel so tired with all the worry , why cant things be more straight forward
    i do hope you get the help you need
    Ron, i think you are brilliant doing all this to help people
    kind regards
    Carol

    • Hi Julie,

      Excellent.

      Don’t be afraid to lay it on with a shovel! Cry a little, if you think it will help.

      Cynical? Not really – some doctors often can’t see what’s under their noses.

      Ron.

  31. Hi, My mum was diagnosed with copd at the begining of the year she applied for dla was turned down, she didnt appeal due to the fact she has been having seizures for 9 years docs have no idea why and she has been turned down so many times for that. Not sure on all her med’s she takes but i know she has a lot ,she has a bed wedge as she spends most of her time in bed. My mum leaves the house twice a week and gets breathless just walking to the car.Her last dla claim form was filled in by a copd charity not sure which but she was told they would help when in fact they just fill in the form for ppl who can not read or write.My mum recieved a letter today off the dla turning her down she called them and asked for her application to be looked at again they said they would and it will take between 8-11 weeks. My mum cant remember what the lady put on her dla form i feel we will end up at yet another tribunal, clearly this system does not work, any advice would be great.
    Thank you
    Wendy

    • Hi Wendy,

      For the most part the system works pretty well, but there are several reasons here why it’s all fallen to pieces.

      The first thing to bear in mind is that you’re dealing with strangers – all they know is what you (or your mum in this case) tell them. But – before I go on with that – spending a lot of time in bed, with COPD, is a seriously bad idea. With COPD you need to be as active as possible, otherwise potentially infective sputum builds up in the lungs and is very difficult to shift – and getting it out is absolutely essential. The psychological aspects of spending a lot of time in bed aren’t good either.

      And spending almost all her time in bed may well have contributed to your mum losing out. The logic is, if you don’t go anywhere, you don’t need DLA mobility, which is paid “for help with getting around”. Staying it bed won’t qualify.#, especially these days when it seems to be harder than ever to claim successfully.

      It can be argued – and I don’t doubt it will be – that your mum’s problems are as much to do with physical deconditioning, from spending so much time in bed, as they are due to COPD. If you’re aiming for the mobility component, you’ll need to down-play this* – say that she can only get up late and often has to go to bed early – something like that.

      *Better still, change it. Find a way to get her out of bed – it’s seriously bad for her health, and for her life-expectancy, especially if, psychologically, she’s in any way given up.

      Being breathless all the time is no fun – I know that better than most; hell, I get breathless typing – but staying as active as possible is vital to staying alive as long as possible – the fitter you can stay, the better. For example, I find it hard to cook, so I mostly don’t, though I do make my own bread, by hand (and that can be done sitting on a high stool, if necessary, which cooking can’t – too much to-ing and fro-ing involved), which not only benefits the arthritis in my hands, but my breathing, too, as kneading the dough works the upper-body muscles, especially those involved in breathing. Therapy and food in one operation – what’s not to like?

      Not following up with appeals may well give the impression that the claim wasn’t entirely serious, or that she didn’t care enough to follow it up. That shouldn’t reflect on future claims, but it might

      So, the basis of DLA mobility is walking ability. Less, obviously, is better, from the perspective of the claim. You are asked to describe how far you can walk before experiencing “severe discomfort”. That doesn’t have to be pain, it can be – in the case of COPD – breathlessness. Then it moves on to how far you can walk in 1 minute. Don’t guess – not unless the figure is quite obviously less than 40 metres. Time it and, if necessary, measure it (a lot of mobile phones have a stopwatch function). I did that, and it turned out that my guess would have done me no favours at all.

      The same sort of precision is important throughout the form. And never say “but” – deal in absolutes. Saying, for example, “I can walk 40 metres a minute, but some days I can walk 50,” is a disaster, because they’ll focus on the 50. So if, on a normal/bad day, it’s under 40 metres, that’s all that matters. Say that and move on. Same with other questions – no buts, ifs, or maybes – just straight, unqualified answers. The only exception being explaining how bad things are (NEVER how much better they might sometimes be – if they are!).

      By the way, if the information that “My mum leaves the house twice a week and gets breathless just walking to the car.” was put on the form, it would have been ignored, because it doesn’t actually mean anything. For all the people reading the form can tell, the car could be 10 yards or 200 yards away – it’s information that has no value. It would, though, give the impression that she never goes anywhere, so paying a benefit for getting around can’t be justified.

      For COPD, all the medication will need to be detailed, as will any doctors who are involved. The GP has to be on side, as do any consultants (was COPD a consultant or a GP diagnosis?). Wrongly, in my view, medication is actually taken into account in DLA claims, and if they think – based on what knowledge I have no idea at all – that the medication is inadequate, the claim will fail. It’s vital that the medication matches th claimed severity of the illness. I think that’s entirely wrong, because it’s a fact that some doctors are better than others – the patient shouldn’t be penalised for his/her doctor under-prescribing.

      This is what I take for my COPD http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ and I know of people that take more than that. so a comparison with what your mum takes might be useful. There’s also a lot of COPD info here http://ronsrants.wordpress.com/2009/02/03/copd-and-nothing-but-copd/

      The seizures are a problem – being undiagnosed doesn’t help either (I’m a bit shocked that they’re undiagnosed after 9 years – how hard can it be?) – but they wouldn’t, I don’t think, be considered to impair her walking ability. However, Q34 is is about needing someone to be with you when you’re outdoors, so Yes, for than one, and explain about the seizures.

      The DWP will write to the GP, consultant, and anyone else who is on the form (and as I said, it’s essential that those people are willing to support her claim), so perhaps the GP could explain why the seizures are undiagnosed. and confirm that they’re actually real. That’s important – undiagnosed conditions tend to be viewed less than enthusiastically. so if there’s a valid medical reason, it’s worth mentioning.

      Spending most of the time in bed, your mum must have care needs. You don’t actually need to have a carer to qualify, you just have to have the need, whether the need is fulfilled or not. There’s a lot of scope in the care section for someone in your mum’s position. For example, I sometimes forget my meds. In DLA care terms, that means I need someone to remind me (Q.53). That I don’t have anybody matters not at all.

      Can you possibly help with the form? If so, there’s a downloadable form here http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011925 Go to the link http: //dwp.gov.uk/advisers/claimforms/dla1a_adult_print.pdf. Right-click and save it to your desktop. It’s an an editable PDF format, and can be completed on your computer, before being printed. That way, you have a copy. Using a paper form, it’s always best to get it photocopied before posting it – easily done on a PC with a scanner.

      Sorry I can’t offer more precise advice, but the only person I know well enough for that is me.

      On a personal note, is you mum’s COPD smoking-related and, if it is, has she stopped? Stopping is vitally important. COPD can only get worse – but that shouldn’t be read as a death-sentence – and it will get worse a hell of a lot faster for a smoker who doesn’t quit.

      That’s all I can think of for now, but if there’s anything specific you want to ask, I’m usually here. And tghere’s a few tips on completing thr form here
      http://ronsrants.wordpress.com/2009/07/07/claiming-dla-and-esa-some-tips/

  32. Thank you for your help, mum called them and they are going to look at it again, have you ever found your self in that situation ? i didnt know they could look at a claim again thought you had to go down the appeal route. The dla people wrote to her consultant for a report no idea what was in the report but they turned her down. She is going to ask her gp for a letter stating what medication she has to take, is there anything else she should ask the gp to rite ? we are going to write a letter as more evidence with more details of my mums condition. I think she spend most of her time in bed because she is depressed, she seems to heve 1 problem after the other, we thought she was dieing early this year when she was rushed to hospital, thats when they diagnosed COPD. since has been back in hospital with muscle problems and now has kidney or gore bladder stones. As for the seizures its been allmost 10 years she has had numerous scans, things taped to her head to no avail they just discharged her and put it down to stress. My dad filmed a seizure once as we felt like no one seems to beleive she has them.
    Thank you
    Wendy

    • Hi Wendy,

      I learned only recently that they would look at claims again. You GP needs to say that he supports your mum’s claim for DLA on the grounds that she has difficulty walking. I don’t think he needs to write about her meds but – as long as s/he doesn’t charge – go for it. It’s worth contacting the consultant, asking for his support (sometimes they sulk if they just get a letter out of the blue from the DWP, so it’s as well to keep them in the loop). Is she seeing the consultant about he COPD? If not, she probably should be

      Seizures – yep, stress can do that and, as I found out myself, so can hypoglycaemia caused, in my case, by skipping breakfast, so how’s her food intake? The important thing is to ensure the seizures aren’t TIAs – mini strokes – which they appear to have done. As they seem to have ruled out physical causes, has anyone looked at emotional problems? Or a reaction to medication, if she’s been taking anything long-term?

      Muscle problems and seizures – anyone looked for a link?

      I’ve had a lot of experience of depression, both as a carer and a victim, and it really is essential to get it treated, as it can cause a lot of physical problems, too. Anyway, if you have to re-claim DLA, or go through the appeals process (have you done that?), try to minimise the bed thing.

      You should be able to make the depression work in her favour, though, regarding DLA, as I said.

      With COPD, it can’t be cured, but with the right meds – and right mental approach (i.e. treat the depression) – it can be managed very successfully. By the way, if your mum is taking Phyllocontin tablets, or any Theophylline-based drugs, they can cause depression. They can cause vitamin B6 deficiency, and B6 manages the functions of serotonin, so a deficiency causes depression. I was almost suicidally depressed for years until I found that out. Now I take B6 (100mg a day) and I’m fine. COPD meds can cause other problems, too, and the links are on the COPD and nothing but COPD post I linked to last time.

      Anyway, best of luck with the claim, and do let me know how you get on – information from comments can be very useful to others.

      Ron.

  33. Excellent work Ron i have just stumbled on this searching for related as I am due for DLA appeal on monday. COPD, Bronchi, immune defic,Blood pressure, and now psoriasis, I have recently been referred for counselling as I didnt want depression meds. i have found your forum very informative though wish id read it before filling in the forms. You live and learn. Since being put onto continous azithromycin 3 times a week along with my 3 inhalers and other tabs phylocontin and singular i have found a marked improvement this winter. reaffirm your advice to others have antibiotics readily available. dont let it catch a hold before treatment. will let you know how i do and any info i gain worth sharing

    • Cheers, Terry, feedback is always welcome. Don’t forget to stress what you can’t do – that’s more important than what you can do when it comes to benefits.

      And I’ve just published a COPD self-assessment test – first post on the home page, for the moment anyway. It’s reputable, I got it via the GPs’ magazine, Pulse. It might be worth taking the test and taking a copy with you – bear in mind that the tribunal people are mostly non-medical, and something concrete, like that, makes it easier for them to understand.

      Don’t be afraid of antidepressants. Tricyclics can pretty much shut your brain down, but SSRIs can be very good, with minimal side effects for most people. Not me though – see post linked to below.

      Be aware, too, that Phyllocontin can cause depression, and as it’s chemically-induced, counselling won’t fix it. See the footnote to this post http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ And that reminds me, I really must give that its own post.

      I have – it’s now here http://ronsrants.wordpress.com/2010/01/15/depression-in-copd/

      Ron

  34. Hi Ron,

    I am soo pleased to have found your blog, as my partner Paul (47yrs) has COPD and is very unwell with it.
    He could have got it industrally working with fibours and asbestoes, or hereditory, as all males, going back 3 generations on his dads side have died of lung problems.
    Going by your excellent advise, we most definately feel he is undermedicated.
    I have tried to tell him he would be entitled to esa and dla possibly, but couldn’t get him to listen before tonight, with the help of your website. Thankyou!! He is now willing to at least get the forms and have a look.
    Paul gave up work a year ago partially to look after me (mental health issues and now CFS) but mostly because he was much too unwell to work.
    We will be on to his G.P. asap with a hint or several from your blog about different meds. Hope she listens.
    Also, you have encouraged me to apply for dla for my bloody horendous cfs. I understand it’s a long shot but didn’t think they would even recognise the syndrome or even the symtoms.
    Again, thankyou Ron.
    I do soo hope this message reaches you on a good day, and that u have many many more to come x.

    Regards, Andrea & Paul. N.I.

    • Hi Andrea,

      If Paul hasn’t done so already, he needs to ask his GP to sign him off as permanently unfit for work (you too, maybe?). If you haven’t found it already, there’s some advice about claiming DLA and ESA here http://ronsrants.wordpress.com/2009/07/07/claiming-dla-and-esa-some-tips/ .

      Claiming DLA for ME/CFS isn’t easy these days, but it is possible and, of course, if you don’t try, you won’t get it anyway. Don’t forget, mental health problems count towards DLA too, especially the care component. Download the DLA form from that page – one each – so you can work on them until you get them spot-on. There seems to be no downloadable form for ESA – just bear in mind that ESA is a crock, and is designed to make it as difficult as possible to claim. And that’s not just me – even the government has reservations about it – not that they’re in any hurry to fix it!

      Has Paul, by the way, been checked out for asbestosis? If not, it should be a priority.

      Good luck!

      Ron.

  35. hi ron i havent been on here for ages i have had a lot on just a bit of advise if you can help i get the lowest rate care for myself if i applied for the mobility side of it could i loose wot i got or is there away of doing it with out it effecting it would you please let me now please as i have got worse and really struggling getting around now hope to here from you soon gina

  36. Hello again Ron,

    Thanks for reply.
    We shall get G.P. to do that Signing off work thing this week, and getting the asbestos looked into also. Worried big time now…

    Currently Paul is on income support and carers allowance for looking after me. Do you think it advisable to change to ESA, then claim DLA? We really have no clue about benefits and really could do with a mentor…

    I, on the other hand, receive income support and high rate care with low mobility DLA. This is due for renewal in Sept 2010. Do i just add on info about CFS being diagnosed? They know all the symptoms, as other than being alot more severe with more prolonged flare ups, symptoms haven’t changed in the 3 years i’ve been claiming. Only other change, is that i’m being tested for RA in my hands and feet. Big ouch!

    After re-reading above, i can see how it would sound like i’m only interested in money. Really that is not the case. I’ve looked into all your advise on meds and stuff to help Paul first, and as i said in my first contact to you, will be having a very stern word in his doctors ear, politely of course lol. If we have any more messing about with Paul’s meds, can we get back to you please Ron?

    (never written into this kind of thing before, can you tell!?)

    I Would like to add to all of us reading and taking part in Ron’s blog, Yeah life’s a bitch at times but it does my heart good to see soo many chins up out there, you are all very inspiring. Thankyou one an all.

    Andrea.

    • Hi Andrea,

      Sorry for the delay – been a bit out of it lately.

      I don’t know why you’re on IS, but for now stay with it – ESA is a minefield, and despite the word Support, it’s anything but supportive – it’s designed purely to get people off disability benefits and onto JSA. Apply for DLA, by all means, though.

      My advice, based on fed back from other people, is to wait and let your DLA review come round in it’s own time, especially when CFS is concerned, as it’s so problematic – yep, I know it’s a typo, but FMS is just as problematic. Asking for an early review seems to not go very well. Of course, I never hear about those that DO go well! Your call, I suppose.

      There are 33 joints in each foot, and I have osteo arthritis in every one of them* – and no, it’s not fun.

      *The result of being struck by lightning.

      Yes, get back to me by all means about meds – as long as you bear in mind I’m not a doctor. I just have to point that out every now and again though, false modesty aside, I do know what I’m about when it comes to COPD. I was invited to join Wellsphere because of that.

      It’s worth mentioning to your GP that medication is a large part of the DLA assessment, and that if Paul is perceived to be under-medicated, he could lose out.

      Ron.

  37. Guess who (again)

    I’ve just realised when referring to CFS i have not been talking bout my condition which is chronic fibromialgia syndrome. Forgive my ignorance… Duh!!

    Andrea.

  38. Hi Ron,
    My wife Sharon was diagnosed with copd about 6 yrs ago but I only found out a year ago, when it was so obvious she was unwell. I said I was phoning 999 on one occasion and she then told me she would be ok ‘in a minute’ as she had some medication. Thats when she told me she had stage3 copd. She thought it pointless to worry me with her probs, what a woman.
    We live in down the end of a small cul de sac of 6 cottages and half the time she cant make it to the end of the road now. Thats about 50mtrs or so.
    Just before xmas she sent off forms for dla with the help of a helpfull bloke from the benefits agency. We had a letter come saying the claim was being proccesed in the middle of Jan and still wait for a decision Ron. The trouble is, she is one of those women who will never let anyone know how she feels and just gets on with everything.
    She has not been admitted to hospital with an exacerbation yet, but take it from me she has had 2 since i found out at least, but refuses to seek help. She was shakeing real bad a few weeks ago, like she had hypothermia. A terrible headache, coughed continually and was bring up yellow phlem. She could not lay down either (I since bought some special pillows to keep her more upright) and couln’nt eat anything.
    She has always been nice and slim, but not skinny, but must weigh no more than about 6-6 and a half stone now so I reckon shes lost about 2 stone.
    She will not discuss copd with me at all and tells me to piss off out if I press the subject. I have tried to help her but to no avail, she just wont listen.
    I also have to tell you she will not give up smoking and is not interested in doing so. This is madness and the whole scenario is driving me insane, its like banging my head against a brick wall Ron. Oh yes Sharon is 49yo.
    I’m allowed to do the cooking now as the steam in the kitchen sets her off.
    Well thats about it for now Ron and thanks for creating your website, its cool. Sorry for any spelling/grammer mistakes this construction workers made, but its been a while since i left school lol.
    The BA guy could’nt tell us what he thought Sharons chances of getting dla were directly but hinted to us he was positive in he’s thoughts. We will see sometime soon I hope.
    All the best to you Ron and of course to all contributors.
    Chris.

    • Hi Chris,

      Sorry, but I really don’t understand your wife’s attitude – you can’t ignore COPD, to do so is dangerous. It can be managed, often quite well. Does she actually realise she’s likely to die? In fact, do you? You really can’t neglect COPD like that and get away with it.

      “What a woman” seems to be quite the opposite to the true situation – it’s not a situation where admiration is appropriate. You may not like what I’m about to say but, since you came to me, I don’t see how I can just sit back and say nothing.

      A COPD exacerbation means an infection – the lungs of people with COPD are badly damaged, in your wife’s case, by smoking. They’re also very prone to infection, mostly from the toxic crap that accumulates in the lungs (we don’t catch infections, on the whole, they’re self-starting, though susceptibility to opportunistic infections is high).

      Even when treated, infections cause some damage – I don’t even want to think about the degree of damage that untreated infections are causing.

      And there’s no need for it – caught early, which is why I have my own antibiotics, an exacerbation/infection can be nipped in the bud in less than a week. Left untreated – well, you’ve seen the results for yourself, and yet it needn’t be like that.

      I’m stage 4, by the way, and have been for many years, yet my health is an order of magnitude better than Sharon’s, because I’m obsessive about my medication, and about treating every infection as soon as I’m aware of it (which, based on taste and smell of sputum, is several days before a GP could diagnose it). These are my meds, by the way; Sharon should be on a similar, maybe slightly lower, level http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/

      And I’m not sure how much use they can be, faced with such intransigence, but what I consider to be the most important of my COPD posts are here http://ronsrants.wordpress.com/2009/07/31/all-my-copd-and-flu-posts-in-one-place/

      My doctor think that, properly managed, I can live til my nineties. I’m not sure I’d want to, but I’m certainly not ready to quit yet, nor should Sharon be. Life with COPD can be crappy at times – but the alternative is death. Of the two, I prefer crappy, in the hope that tomorrow may be better.

      And she won’t give up smoking? Frankly, that’s insane. And therein may be the problem. Either Sharon is mind-numbingly bloody-minded, self-destructive and, yes, stupid, and set on an early and painful death quite deliberately. Or she is mentally ill. I really can’t see any middle ground.

      Obviously I don’t know her, but unless she was normally so bloody-minded and self-destructive before, then I would strongly suspect some form of mental illness – what you’re seeing is suicide by self-neglect and, without rapid intervention, she may achieve her aim.

      I’m not saying she’s consciously trying to kill herself, though she may be, but that’s what’s happening. You may think that if she was mentally ill you’d know, but hey, she hid her COPD from you. And people who are mentally ill can be adept at hiding the fact from those closest to them – I’ve been there.

      There is one question, though – does she actually know what COPD is, and that it can be managed? Or is she convinced that she’ll die no matter what? Because that’s just not so.

      I believe she needs immediate medical intervention, hospitalisation, and definitely a psych referral (I might be wrong, I don’t think I am; I have a lot of experience with mental illness, as a carer, but better safe than sorry). The current state of affairs really can’t be allowed to continue, because it can have only one outcome. And since she won’t do it for herself, you’ll need to talk to her GP and make him/her understand that this really is a crisis. Hell, if I can see it a doctor should be able to. A response along the lines of “ask her to come in and see me,” simply is not acceptable. Because she probably won’t.

      And I’ll be blunt – you do need to bear in mind that it may be necessary, for her own safety, for your wife to be sectioned if she won’t co-operate voluntarily. OK, that’s bad, but it’s not the worst case scenario. That would be doing nothing.

      And I can tell you that smoking with COPD won’t be viewed sympathetically by the DLA doctor. They may well take the view that she is worse than she need be through her own actions (which is true on several levels), and if she didn’t smoke she would be able to walk better and further. That’s not automatically the case, but it’s an argument that’s going to be very hard to counter, given the high level of self-neglect.

      Sorry, Chris, but given the situation you really are going to have to take the initiative here, and sooner rather than later – like tomorrow. Because based on what you’ve told me, there may not be much in the way of later left. People die as a result of COPD every day (not necessarily from COPD), that’s a given. That will certainly be so in my case, however, for your wife to allow herself to die at such a young age is so fundamentally wrong it’s impossible to believe that she’s not, as I said, mentally ill.

      You may feel that if you interfere to the degree that I’m suggesting, it will damage your marriage. Well, perhaps, perhaps not, but it won’t damage it nearly as much as the self-inflicted death of your wife will. Because as sure as god made little green apples, that’s where this is going, without urgent intervention. Do you realise just how serious a 25% weight loss is? That’s the sort of thing that can happen in cancer. I’m not saying your wife has cancer – just stressing the seriousness of the situation.

      Yes, I am trying to frighten you – but I’m not exaggerating the danger, not one iota. You need to act now, and worry about the consequences later. Because the consequences of not acting will be far worse.

      Good luck, and do let us all know how you both get on – it may be valuable to others.

      Ron.

  39. Hi Ron,
    thank you for being so blunt my friend, its whats needed here. I have heard enough bulls–t in my life to just want the truth regarding Sharon.
    I phoned my kids early this morning to come round and showed them the above messages. They were horrified as they did’nt know she had copd (Iforgot to tell you that in the last post sorry, as she did’nt want them to know) and agreed with your statements. They think, to use their words, that she has lost the plot as she was’nt always like she is now.
    She listened more to my 3 kids after we all confronted her together and told her our worries. She refused to read the above messages though although we all said she should, so I’m going to put a shortcut on the desktop in the hope she’ll see it and read it when alone, I hope that it may point her in the right direction.
    On the kids and I insistence we are going to the Gp’s together thursday morning, an appointment has been made. Sharon reluctantly agreed after some, as I’m sure you can imagine, resistance. I’ll let you know the outcome.
    She has been taking ventolin and a steroid puffer every 12 hours and although she needs whatever tablets ( I dont know which till thurs) she say’s they give her migrain so stopped taking them. She should be seeing a pulmonologist more regularly as she has’nt seen him since April last year.
    Thanks again Ron, you have helped me mate. I will post after seeing the GP with Shas.
    Regards,
    Chris.
    P.S. another letter came this morning from DWP saying they are dealing with the claim and will be in touch asap.

  40. Hi Ron,
    just a quick one. I insisted on having our own family doctor when making appointment with GP and not an underling for want of a better word, I told the receptionist this on phoning bur she called this afternoon and said could’nt see our Gp till monday at 2.10pm so will now let you know what said etc after that Ron.
    Chris.

    • You know, Chris, calling the other partners in the practice underlings isn’t going to make you any friends. Based on very long experience it doesn’t matter much who you see – they all have access to the same records.

  41. I, on behalf of all the people you have helped on this site and I am sure they will concure, wish you well and hope you are not over doing it in your quest to help people in such a selfless way Ron.
    Please look after yourself and take it easy for a while. What would we do without you mate ?
    Thanks for giving me a kick up the ass, I needed it.
    Chris.

  42. hi ron i was diagnosed with copd five years ago i get low rate mobility and care indefintly i take spiriva ventolin seretide i re applyed feb09 to try and get higher rate care i was turned down i also have ibs i was diagnosed with breast cancer august 09 had macectomy september 09 on femera for five year maybe longer do you think its worth re applying for higher rate again or a waste of time as i need a lot more help. thanks sandra.

  43. Hi Ron,
    I dont know how to say this, but it ended tuesday.
    Shas was refused dla even though she could’nt walk 100mtrs.
    Got a blue badge for her yesterday. What the f— is going on in this country Ron, this is not fair.
    Amazing people are losing their battle and there is not enough help. I know Shas carried on smoking which is madness, but she was badly depressed.
    I am sorry Ron, but I cannot reply to further reply’s in this moment in time my friend.
    Whoever reads this blog, you must STOP SMOKING, it will kill you if you have COPD, please dont let your loved one’s suffer your loss

    • To which I can only add, everybody, DO NOT neglect your COPD. It IS manageable, with the right drugs and diligence in taking them on the part of the patient. A point I’ve hammered home repeatedly.

      You can’t beat it, but you can certainly reach an accommodation with it, and there is enough information here to enable you to do so. I’ve done it (currently it’s my ME/CFS, and damage from the lighting strike that’s screwing up my life, my COPD is pretty good – for a given value of good, anyway), no reason why you can’t too.

      And not only will smoking kill you if you have COPD, it will more than likely give you COPD in the first place.

      Take it easy, Chris – I know you don’t believe it right now, but it will get better.

      Ron.

  44. Hi Ron, my mum has had COPD for years now, just after xmas she had pneumonia and we almost lost her, since then she has had one chest infection after another, resulting in her being back in hospital at the weekend for a few days, shes home now, they said they want to do a scan as there is shadowing on the lungs , after her pnuemonia she had a really sore nose and we all thought, including the doctor (who gave her antibiotic cream) that it was from the oxygen pump, well this time they did a swab for MRSA when she was admitted and her GP phoned today and said she has MRSA in her nose, he said if she ever needed surgery it would be dangerous but her nose is sore still and he didnt say anything else, do you or anyone here know how this might affect her? will it spread? get worse? ect.. is there anything that can be done
    she phoned me in a panic and i thought of you as you were so helpful about my partners breathing troubles
    thankyou
    kind regards
    Carol

    • Hi Carol,

      I wouldn’t worry – from what I’ve read, most people carry MRSA in their nasal passages. Yes, it may be a risk if she needs surgery, but no more than the risk from anyone else’s nose! Basic hygiene – she doesn’t stick her fingers up her nose, and doesn’t touch the wound. Should solve the problem.

      You can get a sore nose from the nasal canulas (and oxygen exacerbates this because it dries out the nasal passages too). It should go away fairly soon. I suppose you’re worrying about MRSA self-infection in her nose (um – if you weren’t you are now!). Shouldn’t be a problem – most people are remarkably resistant to the bacteria they harbour. Just as well, really, or we’d all be puddles of goo!

      Ron.

  45. Hi , Ron, thankyou i told my mum and it made her feel alot less worried and then the nurse told her the same so its put her mind at rest greatly, you are such a help, i hope you are doing ok yourself
    Take care
    Carol

  46. hi my name is julie, i have been diagnosed with fibromyalgia syndrome, along with other medical conditions that go with fibro, I have a dla tribunal hearing on the 23/8/10, and it has to be said that i am totally scared stiff, not sure what i am ment to do. i need help, at the moment i get low rate mobility, but dont get any care allowence, what do i need to do to prepare myself for this hearing, can anyone help me
    thanks
    julie

  47. I have just attended a tribunal with a friend who has COPD. He has been waiting for over 12 months for the tribunal date after being refused DLA when first applying.
    This morning he got the letter with the result of the tribunal hearing.
    He has been refused DLA again because he does not fit the ‘criteria’
    His condition has worsened since he first applied (he is now 50% worse than 12 months ago) but even with letters from his doctors stating this he was still refused the DLA.
    The way he feels at this present time is that no one beleives that he has COPD and that the DWP will do anything to stop paying money to those who need it.
    He also feels that if he applies again for DLA he will be refused again and waiting another 12 months for another appeal could be too late.

    • The problem might be his medication. Based on what I’ve been told here, under-medication does seem to be widespread, and medication is taken into account in a DLA claim. It shouldn’t be, as it’s outside the patients’ control, but it is. If it’s considered insufficient, compared to the degree of disability being asserted, then the claim will probably fail.

      DLA is also based primarily on walking distance – obviously, in this case, less is better. And when it comes to doctors, all they are allowed to comment on is the degree of disability – everything else is ignored. The doc might say “Mr. X fights for every breath…” It will, in all probability, not matter. For the mobility component, the main criterion is walking distance

      I think your friend should write to the DWP, asking exactly what these “criteria” are. He should also reapply,

      It might be worth reading this page http://ronsrants.wordpress.com/2009/07/07/claiming-dla-and-esa-some-tips/

      Ron.

  48. hi ron been diagnosed with severe copd and severe bronchitis for last 4 months been in hospital 4 times in last 18 months my spirometer test was 49.5% fev just been refused dla they came to decision in 7 days without talking to my gp or chest specialist please help with any advice im only 34 yrs of age with a young family and really struggling finacially now thanks

    • Hi Brian,

      You do know you can appeal? They should have sent you details with your refusal letter. If you answered the application questions in such a way as to suggest that your disability was minimal, that would explain why you got tossed out so fast. In fact, I’m almost certain that will have been a factor. Check out this post – see if you can see where you fell through the holes http://ronsrants.wordpress.com/2009/07/07/claiming-dla-and-esa-some-tips/

      Your age will be a factor too – it’s extremely young to get COPD, even if you’ve smoked heavily (if not, then there will need to have been some pre-existing condition(s) – COPD doesn’t just appear), and your meds, which will have been taken into account, will need to match whatever degree of disability you’re claiming. This, for example, is what I take for Stage 4 COPD http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ though it’s been much the same for 15 years, mainly because there’s nowhere else to go. Severity varies, obviously, but someone with COPD should be in the ball-park in terms of meds.

      Time will have been a major factor – after 4 months they’ll be unlikely to entertain the idea that you’re disabled by COPD – more likely to assume that once the present crisis is past you’ll recover – maybe. For example, I got DLA — but that was after 44 years of illness, and even I got turned down on the first try. So – you see my point about 4 months (even 18 months might have been pushing it)? They just wouldn’t have taken it seriously (to be honest, an appeal might fail for the same reason but, hell, appeal anyway).You need to talk about your long-term prospects with your consultant, and get him/her on board regarding DLA. Make sure your GP is up to speed and onboard, too. And bear in mind that they can only speak to your degree of disability – whether they think you should have DLA won’t even be considered.

      And – I have to say this – despite what you might have read, or heard, DLA isn’t an easy benefit to get. Being ill counts for little – it’s entirely down to the degree of disability.

      Ron.

  49. thanks ron for your reply my consultant as already said probley wont get back to my job as i am severly out of breath with just walking down the street,ive just got out hospital ;last week after having a lung bullectomy to cut away the top of my right lung as it was so infected with emphysema, the consultant say my lungs are that infected there like a 80 yr olds lungs

    • Talk to your local CAB office as a matter of urgency – find out what your options are other than DLA. If you can’t go to them, tell them – they’ll come to you.

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