MLD on NHS

[veriterc]

With rugby player sized legs in a tiny frame, I was delighted when my MEP (yes - the one in Brussels - when MP in UK was less than helpful) got me a course of MLD. My legs went down to near normal, but now I find that I still have some slight swelling - face, arms and mostly around ankles.

Lovely Nurse in Lymphoedema clinic said "you had polio - that will make it difficult for you" and proceeded to do her very, very best to find garments that I could pull on. Even put one pair of stockings on, which that night I had to use a breadknife to cut off - as arms and fingers not strong enough even to pull onto gadget.

So we have now decided that I am going to need MLD for rest of time; I am paying for this.

Does anyone know of any scheme whereby I could get the cost of garments out of NHS to go towards paying for MLD?

[Lynora]

Doesn't your lymphoedema clinic offer MLD? Probably a daft question!

[veriterc in reply to Lynora]

Not daft at all. Clinic will consider giving me ONE session - then that's it! And then only to selected patients - which I suspect won't mean me as Nurse was reluctant to even tell me this!

[ofcourse]

hi

If you are spending weekly on MLD to keep your ankle down suggest making the MLD less

frequent and trying Lymphapants.

They were advertised in this month's LSN

newsletter but I've been using for several years

They may do free trials .

They are worth every penny because they put

continuing treatment under our control, and

may mean you can use a lower class of compression hosiery.

If you have to stay with the tighter ones - NHS

will arrange custom made with a zip.

Good Wishes to you

'ofcourse'

[Hidden]

Hello, conventional treatments made little difference to my rapidly escalating secondary Lymphoedma. I was eventually diagnosed with Lipoedema at St George's hospital. This site :

lipoedema.uk

Will tell you more about it.

[Hidden in reply to Hidden]

Sorry, posted the above in the wrong place... Suggest you read about minimu standards of care on the British Lymphology site.

[veriterc in reply to Hidden]

Sadly, have found whatever knowledgeable people say there are none so deaf as some GPs, CCGs, and other quangos. I would love to have care as set out - but find that London's NHS is split in to different factions, and none acknowledge the other - unless they want to palm you off! Cynical - but I am fed up with the way we are sent round-and-round hospitals. However, nice to have this Forum so one can see one isn't alone!

[Hidden]

Hello, don't give up.. You are entitled to garments on the N H S & although you have no faith in your G P I would encourage you to encourage them or at least one medic in the practice to undergo the L S N learning module. It is free of charge and is fully accredited so will count towards their yearly contractual learning. You might also find it useful to check out Lipodema U K's site as your posting mentions " elephant legs " which can, like mine be a symptom of Lipoedema. Apologies if this causes alarm. I live in Surrey by the way but I am under the care of St Georges in London which is the centre of excellence for L E Patients. My Consultant was happy to refer me & although my funding is never likely to come through from my C C G for liposuction as recommended by Proff Mortimer all other treatments, including garments prescribed are paid for by the N H S.

Good Luck with it all & I am sure your privately funded treatments will go well.

[veriterc in reply to Hidden]

Thanks - and I won't giv up - but I do wish we didn't have to fight, fight all the time! The NHS is full of vague promises, which I chase after only to come up against a brick wall. Thanks to MLD, my "elephant legs" are almost back to normal, but I am paying for more massage to keep them under controll otherwise they start swelling again.

If only the NHS would pay me the money that it happily spends out on garments, in giving me MLD. ANOTHER pair of socks arrived today, which thanks to polio and weakness in hands and arms I can't put on! But NHS can't seem to understand that one can have Lymphoedema AND polio at the same time - they expect one to have either - or! Moan over - but am enjoying meeting others with lively minds!

[veriterc in reply to Hidden]

If you don't get enough garments, it might be worth while lobbying your MEP in Brussels. Mine was MUCH more effective than my MP (Europe understands Lymphoedema better). This might be helpful after-cancer.info/2011/11/2...