DLA

Chest and lungs
1

Another gem from my travels around the sites! If you are under 65 and whether or not you are working you may be able to claim Disability Living Allowance. A lady posting on the BLF site said \" I came out with top rate mobility and middle rate personal care, because I am on LTOT. I have traded my mobility part for a car...\" This was followed by a post from a BLF moderator saying to phone their helpline first as they have two people advising on benefits and how to approach them as a lot of people with copd / lung diseases miss out because it is not a highly visible disability.

Also those who are not on oxygen may be entitled too. It depends on things like how far you can reasonably walk etc. so its worth finding out. Not only that but from what I can gather once you qualify for one thing then all the others become easier to get. eg. once you have DLA there's no quibbling about council tax reductions, blue badges for the car and so on.

I think if I were on LTOT I would use my DLA to buy one of those super battery powered lightweight \"handbag\" portable oxygen concentrators, I think they're called 'Freestyle'. The lady talking about the DLA had one and was saying how she used hers when she went to Greece on holiday and she had a great time. I bet that would suit Jacee for her travels 8) Well, once again, hope this will be of help to someone. Remember to phone BLF first for the help and 'low down', luv to all vanessa. ps, still got vertigo!

2

Hi vanessalee - you may be dizzy but you are certainly not dozy! I have claimed DLA, before going on oxygen, I filled out forms explaining how restricted my mobility was due to COPD. It may have helped that I already got the low rate (for spine problems) but I had no quibble when I applied to get the mobility component. You are right, the mobility component entitles you to a Blue Badge. There are not many perks to being disabled - but this is surely one of them. It is so helpful when you are such a poor breather to be able to park close to where you need to be. I did not post about this as I just assumed everyone would have made a claim!! :oops:

One very important point to remember is to fill in the forms giving information about you on your worst days; don't tell lies, but don't be overly optimistic either - tell them what it is like when you can hardly walk/breathe/eat/dress/shower/etc. Good luck

3

Hi Vanessa, hope the vertigo is reducing. I just wanted to let you know that, having at first missed the stuff about the portable concentrator, I have now picked up on it and emailed the BLF. Looks interesting. Thanks for passing this on.

Jacee

4

Hi Jacee, did you find the one I meant? I can't put address in usual form as it will get removed by moderators so will try this in case you haven't found it yet - its the usual first three letters followed by oxygenconcentratorsco.uk and they're a family firm with great reputation . The one that appeals is the Airsep Freestyle, weighing 2.3 kilos.

They are fine for travel.etc and I don't know but think they do terms etc. Thats what I meant when I said that is what I would spend my money on if I got DLA- total freedom. I thought of you as soon as I saw it! I can't understand why NHS doesn't supply them, it must work out cheaper in the long term. Oh, they do only give up to 3 LPM. Can be plugged into mains, car battery lighter thingy or run off rechargeable battery. Luv Vanessa x

PS not so in the dumps anymore. thanks x

5

I could not find the model but found the company and asked for info. Glad you are feeling better. smile

Jacee

6

I shall follow suit and check out the website.

Thank you for the information

Glad you are not so down in the dumps

Tessa

7

Hi Jacee and Tessa.

The particular one that was recommended by a lady who had used them for 4 years was called smile rehab, so I just tried googling that and it came up OK. Once at their home page just click on top bar where it says oxygen concentrators. They are a family company. There is a discount for BLF members, although they don't say how much, but it may be worth becoming a member first! Also, they do up to 50% discount on ex demonstration models, but I think you would probably have quite a wait for that as they're not going to be available all the time, though it's always worth asking about. The lady who already uses them said they come to your home to demonstrate them for you. She recommended them because they were so nice, helpful and gave absolutely no pressure to buy. She has had hers for 4 years using 3Lpm, and it was an ex display model. She is LTOT and uses it daily for work and everything, not just travel. I think she says she plugs it in whenever she's in the car so her batteries are full for out and about. I guess at work she can plug into the mains rather than using up batteries. I think its so exciting! Also, when you're wearing it, it looks just like a shoulder bag!

Vanessa

8

Hi you two. Vanessa, this was the site I went to and I have asked for details of all their portable models, and prices, and details of any ex-display or refurbished machines. I will let you both know what comes of it. Thanks again Vanessa.

You know, I was just thinking about optimism and silver linings and it struck me - if it was not for Vanessa's vertigo I would not have heard about this, or the cheaper tax band; if Tessa was more mobile she would not spend as much time on the site and I may have sunk into the despair I felt after my initial diagnosis rather than her pulling me around - just goes to show!!

Jacee

xxx

9

Karma baby, its all Karma 8)

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Hi, some news. I have been in contact with the British Lung Foundation and they are sending me info on portable concentrators, which they say are very expensive (but they do not quote any prices), and also about becoming a member (so I can get discounts). I have also been in touch with Smile and they have sent info about the models (but no price list). Apparently these products have to be ordered through your regular oxygen company, so I will be talking to them next. The company said they have no refurbished models at the moment but have put me on a list to let me know when they have, which is useful.

Jacee smile

11

This is all good news, especially for me as I have now decided to use the oxygen more. Have been rather stubborn and only use it when gasping for breath.

Over the last two days I have used it when cleaning my bedroom (that's as far as the tube reaches) and while getting dressed and it has made a great difference. I have been checking my sats and when I am moving they drop down into the 80s, so I think the time has come to make use of this oxygen'

I bought a Tai Chi DVD a couple of weeks ago, There are some exercised you can do sitting down. Now, using the oxygen, I may be able to do it. Plus don't feel depressed.

Keep us informed with any new developments Jacee.

Tessa

12

Hi Tessa, Glad to hear you are using the oxygen again, especially as it makes it easier to do more. I noticed when I was researching NHS oxygen choices that the nurse/Doc prescribes flow rates and informs suppliers, but that it is usually the suppliers who chose which type they give you eg. liquid etc. which I find odd, except from the point of view of them knowing if, say, liquid is out of the question due to delivery problems if you live in an upstairs flat (or halfway up a cliff like me).

More importantly Tessa, you need to keep in mind that good oxygen use can seriously lengthen your life. It is bad for your vital organs every time your sat's dip below 88% - that is the 'magic number' for O2 use both here and in the USA. Less than that and your heart, brain, kidneys etc are all being put under stress. You can get away with it for a short time, but if it's dipping frequently every day the cumulative effect can seriously shorten your life, either through general organ impairment or by triggering Pulmonary Hypertension or worse still, heart attack.

On a less gloomy note, I saw my Doc today and he said he will be glad to see me on oxygen, and in his opinion if I 'show good compliance' I could live certainly to my 70's and possibly my 80's as there will also be more new treatments as time goes on! Well, Bless My Soul! thought I, just a year ago when first diagnosed at 29% I was told to inform my family as things were 'very serious', and when I asked the respiratory nurse to give it to me straight as I had my child's future to consider she said two or three years unless I stopped smoking. Was it just 'shock tactics' I ask myself. And how different the attitudes and prognoses between different Doc's. One will stay tight lipped when I ask, and then todays started discussing it without my even asking! Curiouser and curiouser!

I had already noticed that there seemed to be a lot of Americans in their 70's and 80's , still camping, hiking and fishing etc and wearing their O2 , who have been living with COPD for 10 to 20 years! I really believe it's down to having oxygen, avoiding infections and exercising. When I lived in the states It was a common sight at the supermarket and the shopping mall to see ladies whizzing around on their scooters with there oxygen on.

Its interesting to note though, that the USA recommends 24 hour usage as opposed to 15 plus hours here in the UK. Looking at the medical studies done that convinced the medical world of its benefit, I noticed that the conclusion was that 15 plus hours was good, but 24 hours best of all when it came to life span.

If you are at all interested there is a book called 'Adventures of an Oxy-phile' written by Thomas Petty, MD that is down- loadable for free. I found it interesting, particularly the section with patients' first hand accounts and experiences of life with O2.

Well I guess I'd best finish as I haven't done much around the house today and Isabel will be home for tea soon. Lots of love and do keep up with the O2, Vanessa.

13

Hi Tessa, just to reiterate what Vanessa has said really. I queried my use of oxygen with my respiratory nurse via email and got the following reply.

\"Long term oxygen therapy (abbreviated in the literature to LTOT) is treatment to protect the heart from the cumulative effects of low oxygen levels.  When thinking about how long to use it, we know what the minimum number of hours is. A study showed that using for 24 hours a day didn’t give further benefit in the group of patients studied. It also showed that the good outcome was that patients survived longer if their oxygen levels were low, and they used oxygen.  After that, guidance from expert groups is that oxygen should be used for a MINIMUM of 15 hours out of 24.\" Naughty you!!

I was too scared to argue and have religiously ensured a 15 hour minimum since I started using it - except when on holiday when my consultant agreed I would be okay - and often do 20 hours +. I have ensured this is comfortable and that my tubing reaches all over the house. I live in a large 4-bed detached and there is no part of it I cannot reach whilst using my oxygen. Have a word with your engineer the next time he calls to service your machine (or sooner) and tell him you need a longer tube.

I approve of the tai chi - I have let my exercise drop a little since Christmas due to exacerbations and an unexplained and serious drop in my breathing (which they thought was due to blood clots in my lungs but thankfully it was not) but am determined to pull it back. Tessa, you remain an inspiration to me. :wink:

14

Hi all, Perhaps I am just a grumpy old woman, but I do see red when prices for goods and services are not openly displayed. I already think that most items aimed at the sick and infirm are disgustingly overpriced. I also see red when things are so tightly controlled that they are only available through certain sources. Why should buying a mobile concentrator involve your regional O2 company? And do they get some financial gain - as it must otherwise mean less profit for them. I did read that the NHS pays O2 suppliers according to volume of O2 used, not by type of equipment used, but in case of a privately purchased device I don't see where they come into it. I am sure it will be argued that its for safety reasons or something, but I don't buy it. Its not that long since glasses were seriously overpriced, only available through the optician who had tested your eyes and took weeks to be ready, and that was 'all for the good of your health' at the time.

The most annoying part of all this is that it must surely keep prices artificially high. I believe most O2 users would have these if they could. Higher sales should result in lower prices, but even at current prices I think more would be sold if things were more straightforward.

I live on the lowest income legally possible in this country, and even I will eventually want to buy one assuming 'terms' are available. I am also wondering if it might be worth approaching the motability and DLA people about arranging purchase or hire in the same way as for scooters or cars. Indeed as incapacity benefit no longer exists and only those with six months or less to live are exempt from work, such an item would help me survive my day at work even more than a car or scooter would.

Ideally of course they would be available on the NHS in the same way as other 02 delivery systems are. For patients requiring 3LPM or less, which, I believe is most patients, the portable concentrator plus a back up at home would be ideal. For most ambulatory users the portable alone would be enough (with spare battery pack). Surely in the long term it would save money for the NHS.

I might be totally cuckoo of course and missing some vital point, so please do correct me or debate the issue as you see fit - do make your opinion known as seriously, I do think these issues are possibly worth raising with the 'powers that be' at some point. I know these things move slowly, but progress they must, otherwise we would still be expected to lie in bed under oxygen tents!

Here endeth my sermon for the day :oops: Vanessa

15

I totally agree that it is disgusting how expensive items are for disabled. Doesn't matter what you are talking about, the prices are way over the top. These are the people who can least afford such prices.

I have two large tanks in my bedroom and the ambulatory in the living room.

I have found over the past two days that when I am feeling breathless and use the oxygen, my sats are 99 and my pulse is around the same instead of racing away at 113 or more.

Also I don't dread getting washed and dressed as I'm not left gasping. I use 3litres and will try the 15 hours as you suggest.

Where would I be without you two

Tessa

16

Hi Tessa

Where would you be without the two of us? Probably where we would be without you - worse off and a d*** sight lonelier and more misunderstood. I REALLY appreciate being able to talk to someone who knows what I am going through, that good as things can be, and as positive as we strive to be, we will all have \"down\" days, where we feel sorry for ourselves, weepy, etc. And that this is normal. I know when I was taking steroids over a long period during a serious exacerbation they affected my mood quite badly. That I cried, was angry and snapped at everyone. Although my nurse explained that the steroids can cause some people to be in a black place and that it was them, not me, that was responsible for my moodiness, I am sure my family thought I hated them. Only someone who has been there could possible understand. So, as someone who cares about you - use your oxygen for 15 hours a day minimum - or else!!! Do all you can to live as long as you can. OR - I will come and smack your legs and give you the BIGGEST lecture you have ever had! Cos that's what friends are for.

:D

Jacee

17

Hi Vanessa, sermon read and agreed with. I heard from one of the suppliers today (Braun, not Smile as yet) via email. They possible misunderstood my query and supplied details of one large and one portable oxygen concentrator. The big one costs £900+ and the portable one £2400+. I have queried if they have got the prices crossed - how can smaller cost more? As you suggest, it may be because the NHS funds the bigger ones and we poor suckers are then left to pay whopping prices if we want to get around better by using a portable one. Maybe you should start a campaign? Organise a petition? Vanessa for President?? Go gettem girl. Jacee :wink:

18

Great to hear that you are feeling better with the O2 - I'm just so envious and wish I didn't have to wait so long for my ABG tests etc. I seem to start each day gasping as I'm already in the low 80's going from bed to the bathroom which is right next to my room. I also have to sit and recover at the bottom of the stairs again - and all this before I've had a cuppa, think I will search ebay for a Tea'smade!

I'm truly sick with nerves this morning. In a couple of hours my son will pick me up to take me for the \"Employment Support Allowance\" medical, which entails a 50 plus miles round trip. I am absolutely dreading it and terrified that I won't pass. It replaces what was previously incapacity benefit. The annoying thing is that even though I will still look for work, I have to jump through all these hoops just for the privilege of not having to 'sign on' anymore - which involved a 30 plus mile trip! To be put in the group that no longer has to work you have to have less than 6 months to live... nice eh?

To be honest I don't think I can face another 10 years of it on my own. I already feel like some sort of criminal scrounger from having 5 months without work - daft thing is there are fit youngsters and men right across Cornwall who spend every winter on the dole through no fault of there own as the tourism side of things practically shuts down for six months of the year. Why is someone going to give an overweight huffing puffing 55 year old the job? And god knows what they'll think if I turn up for interview with the O2 on my back or trolley! Haven't a clue what work to do either. I wish I was still doing my therapies, I used to love my work so much.

Well, i must go and get ready, I keep trying to tell myself that in a few hours it will all be over and I can forget about it. Just hope that this doesn't have a knock on effect to my application for mobility allowance as that would really upset me. Right then, 'fingers crossed' :cry: Vanessa

19

Vanessa for President. I like that. Bet she could sort things out.

I do hope your ESA assessment has gone well.

You still have to hear from a few more suppliers. They may be more helpful.

Tessa

20

Oh Vanessa, you are not on your own you daft lump, you have a lovely daughter and son that I know of, maybe other family or friends. I think it was the nerves talking. I know what you faced because I went with someone else, who does not have COPD (but does have severe other problems) and they felt exactly the same. It is terrible what they put people through. I don't think anyone will ever see you as a scrounger though. Okay, either you will get the benefit or you will not. You should. I'm overweight, older than you (at 55 you seem to be the \"baby\" of our group (I'm 58, just)) and I huff and puff greatly. I visited a man today and parked outside his home. His house is about 10 strides from my car and I had to ask him to let me get my breath back before I could speak to him.

I can't suggest what you might do - do you have typing skills ? (you certainly appear to have). Can you advertise yourself at a local college or University and offer to type up dissertations, essays, projects? Or do you have a nice speaking voice and could answer telephones, make appointments and take messages? Or run a massage parlour? Or run for President? The sky is the limit! Seriously though, what with this ordeal, waiting for your oxygen and having vertigo - I would be amazed if you did feel positive right now. Can you speak to Social Services about sorting out community/home care? Can they offer support with travel or anything else? They have a duty to assess your needs anyway.

Less seriously, maybe it will go really well today, you will come home and drink a bottle of wine to celebrate, wander outside, meet Prince Charming (who I am told is into overweight huffers like us) and live happily ever after. If not, let me know and I will drink the wine for you. Cheer up lovey. Tomorrow is another (lousy) day.

Jacee