PROBLEMS WITH LYMPHODEMA NURSE: I am really annoyed with... - LSN


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pigsty213 profile image
13 Replies

I am really annoyed with my lymphedema nurse, I was referred to her from a specialist who diagnosed my lymphedema. The specialist gave me a stocking with Velcro as I have oxygen and get breathless due to scoliosis. The lymphedema nurse said it wasn't suitable and I should have a stocking for both legs, she prescribed a different Velcro stocking which is very hot and made my leg hurt. She has recently prescribed me another stocking without Velcro, I put talc on which helped me put it on, she suggested I use kitchen gloves, a friend suggested talc. She has only given me a small size and said it would be tight, I had diffulty with the aid due to my breathing problems, I ca manage the one from the specialist fine! My partner tried to help me take the stockings off but he's not always with me and got annoyed as its not easy! I can just about take them off but get very breathless, wears me out, I did tell the nurse this all along, I find the Velcro one from the specialist a lot easier. I struggle anyway, what annoys me even more is that the nurse has said that if the latest stockings without Velcro are OK she will sign me off, last time I went she said she would see me in 3 months, she said the Dr can sort any extra pairs of stockings for me!!

13 Replies
joannie profile image

I have a heart problem and am just like you huffing and puffing, and sometimes it makes me quite ill - BUT I am lucky enough to have really good nurses and I asked for knee highs with zips in and they are great (at the moment I have knee highs and the top from waist to knee) - I often need help putting garments on and these are so much better. Mine are really high compression. Maybe you could suggest that you would be better with them. I'll keep fingers crossed!

pigsty213 profile image
pigsty213 in reply to joannie

I am pleased you are having help, my nurse doesn't seem to want to help apart from giving me a stocking!!! Thanks

AnneBury profile image
AnneBury in reply to pigsty213

Have you tried one of the metal frames that helps get stockings on? My sister has struggled with getting her thigh length compression stockings on (I am OK at the moment as I wear knee length and have spent the last 25 years just yanking them on). Anyway, we got a frame for my sister (who has learning disabilities as well as primary lymphoedema) and it works brilliantly - she is ace at using it. I have "googled" it and found one at Amazon. I googled "compression stocking aid" and Amazon came up - the one she has is the one they have from Mobility Smart @ £27.08. Obviously I can't say whether it will work for you but it has made a huge difference to my sister and her family/carers. I can't see it helps with the taking off of stockings, though.

Ahousewife profile image

I also have problems with my nurse she told me to wear compression bandages whilst i have cellitus! I can't beacuse my legs are sore.

And she also gave me compression socks which wont even fit over my big toe let alone my ankles or legs, I feel as little dispondent to say the least.

Dosen't help the fact that im disabled and confined to a wheelchair either!

pigsty213 profile image
pigsty213 in reply to Ahousewife

How awful, mine seems to think she knows more than the specialist, have you told your GP, where do you live?

Ahousewife profile image
Ahousewife in reply to pigsty213

GP knows.....he is refering me to a demotologist as I have had cellitus for almost 6 months now, I have never been refered to a specialist didn't know there were any!!

norberte profile image

a few ideas:

say you want a second opinion, either from her boss or from further afield if she's a lone practitioner (but you'd have to travel)

can you get to the lsn conference in october in birmingham? the garment manufacturers will be there & the reps may be happy to talk to your lymphoedema nurse themselves if you give consent

if you can't get there, ask for their brochures & take them to an appt to show her you know there are alternatives she hasn't offered

make an appt at your nearest disabled living centre (google it) to look at aids for getting them on & off (although it is part of her job to show you those as well)

ask her if she's worked with people in your circumstances & whether she needs extra training or support; refuse to leave her clinic with stockings you know aren't suitable cos you can't get them on; take a bolshy friend with you!

if all else fails, you may need to approach your local social services adult care team for people to come & help you put them on - i have an agency carer to zip me into my corset every day as, even with lots of trying by orthotics & the manufacturer, we can't find a way for me to get it on by myself cos of my other health issues. this may sound great, but you'll need to bear in mind that you have to be ready to get dressed at the same time every day, some weeks i have 7 different people come, it's means tested so you may have to pay for some or all of it, & they're unlikely to agree a care package if there are off-the-shelf options that would suit you

make a formal complaint that the service isn't meeting its duty under the equality act - as someone disabled in other ways as well, you have the same rights to a service that meets your needs as everyone else; if you do this, copy the letter to your local commissioners (your local pals - patient advice & liaison service - will know who they are & also be able to help with complaining)

it is possible that the funding constraints on her service mean she can't dispense the whole range of garments, but if that's the case she should tell you that & not palm you off with something that's no use

hope that's helpful

pigsty213 profile image

Thanks for all your help, the nurse has now sent me a youtube video to show how to get the stocking off with an aid, however I'm sure she's given me the wrong size, small as it is far too tight for me and I can't get it off properly, I don't think she has dealt with people with breathing problems before, not even sure any in her department have as they don't seem to know a lot!!

harpy1 profile image

this brings back memories of my GP prescribing a certain brand of compression stocking. After the original Duomed ones disappeared (please bring them back!) I got this pair of stockings. To say they were inadequate was an understatement. I could not get the stocking over my arm let alone on an extremely swollen lymph leg! I went back to the doctor and said you try putting that on my leg! He was not to impressed I dont think. He then gave me the name of the brand that the NHS will provide and told me to go find a pair that is suitable and then he would order some. I have as yet not found any suitable alternative to the original Duomed ones. I also have problems pulling them on because I have arthritic hands, have tried one make of aid and promptly threw it across the room when it did not work! Good luck.

pigsty213 profile image

I don't understand why there is not a better alternative than these stockings they give us, I don't think they get tested proplerly by the nurses or Drs before prescribing. Do you have massage?

Hwrdbrdly profile image

Just found this site. Have had to wear a below knee compression stocking on right leg for over 20 years now due to accident damage to leg. The new duomed are useless and slip down and then my leg resembles a link of sausages where it has blocked circulation. I suggest everyone complains to their GP and duomed. Get them listening.

Lynora profile image
Lynora in reply to Hwrdbrdly

Hi Hwrdbradly - have you been remeasured for the new garments? If they haven't caused problems before, they could be a duff knit, and your supplier should be contacted. Have you ever been tried with other products?

Hwrdbrdly profile image

Hi Lymora,

Yup. Been fully re measured and tried several pairs from different batches. still same result and in fact if you do a search on Duomed on this site there seems to be a general issue with their new forumla.

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