I am also only allowed 2 every six months and it isn't enough, especially in this hot weather. I have a Sigvaris sleeve with a non-slip top and this top stretches as they get worn. You can't help but stretch it as you take it off.
The people making the rules should try wearing them!
At least we are all mostly in the same boat xx
You guys are lucky! In Alberta Canada the government will only partially fund garments, and only a maximum of THREE per year! My fitter only had two makes for me to try, neither of which was quite right for my hand, and the alternative is a custom-made glove, which is $$$ more expensive!! 😮
Luckily my swelling, provoked by hot weather and insect bites, has subsided, and I don't have to wear it fulltime! I hope it stays that way!
Having had a full axillary clearance my breast care nurse referred me on request to the local lymphodema clinic as I was planning a short haul flight. They were happy to supply me with an NHS sleeve for prevention purposes, but in the event their measurements showed that I did in fact have lymphoedema.
The 2 sleeves per 6 months is the NHS standard. However, as I was having problems washing/drying in time, particularly since I often wear 2 sleeves a day due to exercise and needing to wear a clean sleeve for work (infection control rules) I asked if I could have 4 a year instead. The clinic had no problem with this, and I've found it much easier to rotate 4 instead of 2. When I also explained that my sleeves were not lasting the suggested period of time, they were happy to supply them more often. They said that they have found that that 2 per 6 months is insuffuicient for women who are very active. I have found my local clinic very supportive and sensible.
I think this shows that there can be some flexibility on negotiation, at least in some parts of the country. Providing a few more sleeves is much cheaper than extra clinic appointments/bandaging/MLD should the lymphodema get worse through inadequate sleeves, or if insufficient sleeves mean you cannot wear a sleeve full time. It may be worth bringing this to the discussion, as well as the fact that there is evidence to show that exercise may improve lymphoedema, and we can hardly be expected not to put a clean one on post exercise. If you have a job which requires certain hygiene elvels (eg health care, food etc) you may be able to use this an an arguement to support your request for more sleeves, and you may be able to ask your Occ Health doctor to support this request if applicable.
If your local clinic is not open to negotiation, you could consider an intial purchase of 2 extra sleeves so that you have 4 in use, and then they will all last longer, so you can rotate your sleeves in turn as you get supplied, keeping 4 on the go without further purchases. I use a different coloured thread to mark the top of each batch, and keep a list of the thread colour/date first used. I then know how long each sleeve has been in circulation and can replace the oldest each time I get a new batch.
Once I was on to my third batch, I also found it easier, since I keep an old one for very occassioanl dirty jobs. If you are finding that the problem is keeping the sleeve looking clean, rather than it being a case of the compression not lasting, several makes now come in black (eg Jobst Bella-lite and Sigvaris).
I am very interested in getting a lymphoedema sleeve as a preventative for long haul flying and walking in high mountains (and possibly other activities), but I've been told different things by different people. I had an ANC in March so am at risk of Lymphoedma and keen to take maximum precautions.
I don't mind paying for mine as long as it fits and will reduce rather than increase the risk. I tried asking my breast care nurse, but she never even heard of using a sleeve for flying as a preventative, so couldn't help.
I phoned up a Lymphoedema charity to ask and the person said just use a tubigrip, but I wasn't convinced that this would be ok - as the diameter would be constant and arms are narrow at the wrist and wide at the top. I ended up buying a regular sports one, but was told by someone on a forum that this might increase the risk, so I'm still not sure?
The daylong website looks good and seems to give information on how to do the measurements. For a preventative one, would I need just a sleeve, a sleeve and gauntlet or an integrated one (ie all in one)?
Where is the best place to get advice on this if you breast care nurse doesn't have any information?
I am also having problems with sleeves and gloves........I was issued with the wrong ones then they forgot to put in my prescription. So now I have a couple which are different sizes but also have trouble having to wash them before my next shift and I have just got some more but they have started to fall to bits already. I am returning to lymphoedema nurse and I gonna complain about this and see what alternatives there are. I am not keen to pay but we shall see.
I'm the same - two every six months and it really bugs me. I just wear a glove which like most other people's gets really manky, even though I cover up with a latex glove for cooking/nappy changing! When I saw my nurse at one appointment and said that they don't last six months, she said my GP would be able to override my prescription. When I asked my GP she said she couldn't. All to do with funding I guess - my GP is great but obviously didn't want to spend the money!
got mine from GP before the change in budget holding. I got the initial ones from LD, but after that, just asked for a repeat prescription when necessary - no problems at all from any of the GPs so far.... I feel guilty, cause I have a drawer full of sleeves as various options have been tried and found wanting. Including an expensive Juxtafit thing (which didn't suit me at all) When I know that I'm not going to need them, I recycle them back to the LD, and they use them to tide people over until the order comes through.
That's interesting that you get yours from the GP. I suppose as they are holding the budgets now there might be more flexibility. I was told by my lymphodema nurse last week that the 4 per year was dept of health rules.
My nurse was not at all keen on buying sleeves other than the exact prescription ones because they can cause more problems as the fit needs to be just right. Luckily mine are £27 to buy privately - that's still a lot but better than some.
I haven't been limited. I asked my GP for more, and she said 'having just treated someone with infected lymphedema, you have what you need. It's,important'. they do get Manky, and lose eir stretch... Fight for them girls!
LS - I think you may well be able to get a sleeve for a long-haul flight but you would need to be assessed by a lymphodema nurse/lymphodema clinic (or however this is set up in your area). I was told that anything over around 5 hours would meet the criteria for having a prophylactic sleeve.
It is important that you go to the clinic to be properly measured. A badly fitting sleeve may do more harm than good. It's also good to have a baseline measurement done anyway. If you have any problem getting an appointment then may I suggest that you use the 'ask the nurse' facility on BCC. They have nurses that are extremely knowledgable on lymphodema who would be able to advise.
You may have already have a bracelet/band warning about lymphodema risk but these are a good idea to wear on holiday too. Basically, in case of any medical problem it warns clinicians not to use that arm for needles, BP etc.I've got a mauve silicon band from this company (they also do pink).
Janice - I'll take a look at the site. I have a lot of difficulties with my sleeve and have finally found one that seems okay. £22 is really good as my sleeve costs around £60. Won't chance anything yet though as still trying to get things back to normal.
Thanks everyone else. Jax I did wonder whether the company my sleeve comes from would just allow a purchase without a prescription.
Four sleeves a year is okay if we sit in our houses wrapped up in cotton wool but if we want to have a life then it really isn't!!!
As far as I am aware you have to be seen as having lymphodema before a sleeve will be issued as they are very expensive but check out the site I put up Daylong as they do lots of different compression garments you just measure 3 sections of your arm and order , simples lol , they also do socks etc so worth a look for people that travel a lot
I have to wear a glove and a sleeve. The 2 gloves I had are really bobbly and I've only had them for 3 months, due another set end June, So I ordered a glove from the company used by my therapist, it cost £49!!!.........I had to get the prescription from the therapist then when I placed the order the company would not accept it unless the therapist vouched for me as being a patient!!
Hi have a question re the sleeves- what is the criteria for being able to have a sleeve? I had an ANC in January. And I'm going on a long haul,flight in September. Does the flight count-as I think a long haul is risky for developing lymphoedema or do I have to have developed it before i can have a sleeve for flying?
Hi Elinda ,
Just to update you, I received my sleeve on Saturday it is actually very good quality , now my Lymphodema is mild so I ordered a medium compression and I have tried it out over the weekend and it seems very good, its comfortable to wear and cooler too as its lightweight fabric , the company is called daylong if you google compression sleeves uk it will appear , yep im pleased with it and at 22.00 its not bad , hope it helps you
Yes please do let me know. It's taken me quite a while to get the sleeve that's exactly right for me so I wouldn't be able to have just any sleeve even if it was the right level of compression. I'm going to ask my nurse about ordering an extra one privately as I'm getting desperate!
This isn't right. I hope others might want to challenge this too. I'm going to find out who the best person is to write to and I'll update on here if anyone is interested.
Yes 2 every 6 months is standard im afraid and its not enough ! but I found a good site when I googled compression sleeves its a uk site and they have them from £ 22.00 in different fabrics/strengths as well I have ordered a lighter 1 for summer ( if summer ever arrives ) I will let you know what its like quality etc,
Oh dear, that seems to be the standard then maybe. perhaps we should start campaigning for more sleeves. I'm seeing my nurse in a couple of weeks and I'm going to ask her who to write to. There are changes in the NHS and services are being commissioned now by CCGs so we need to make sure we have a voice. I'm also going to contact BCC to see if we can do more to push for lymphodema services.
Tolliebelle, yes, they are expensive but compared to a lot of NHS treatment they really are not (think of the cost of lots of medications, treatments for diabetics etc). Also I know in some regions that nurses will give MLD for relatively mild lymphodema and that isn't available in my area. I think the main problem is that we are most definitely not a high profile group and relatively small in number.
I just wanted to say that I have had quite a few gloves/sleeves in the last 6 months but think that this may be because they have been needed to get my lymphodema under control and its been a bit trial-and-error.
I wear a glove/sleeve all-ine-one, and the glove part gets really manky. I have only had my current one since Jan and its already falling apart at the seams (literally!). Will I really be expected to make 2 garments last 6 months?
I was wondering if others were limited to a strict total allowance of just 4 compression sleeves a year? I'm finding this very difficult as I like gardening and cooking and they always end up getting marked (I wash them every day but not all marks come out).
I get 2 every 6 months which frankly isn't enough. I'd like at least one for best, two decent ones and then one for things like gardening. So I need 4 every 6 months.
Is this just my area or are others finding the same?