Confuseds: Cant seeL ist appointmebt with Lymphoeodma... - LSN

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Cant seeL ist appointmebt with Lymphoeodma nurse until 26th May. Just got over Cellulities, howdo i treat my legs ubtil then, i moisterise ecery day but can i put tubi grips on. Thankyou

14 Replies

It is totally unacceptable that you have to wait so long. Can I suggest you phone every so often to ask if there has been a cancellation, and complain to your doctor.

Agree with Verite - only start with the GP and ask him to give you an urgent referral to the clinic - but still contact the clinic daily!!!!

Tubigrip? Do you mean the stuff from a packet or do you have compression garments? Tubigrip should not be used for lymphoedema as it can get too tight and damage the skin.

I cannot believe that you are having to wait another 2 months to see your lymphoedema nurse especially as you have just had cellutis. I can ring and leave a message for my nurse and she phones me back the same day and, if necessary, will see me asap - certainly within a few days and sometimes the same day. Keep badgering them and they will soon get fed up and fit you in

I understand that you have not seen the nurse before so will not have been measured for compression garments. As already said, you must not use tubigrip - it will do more harm than good.

I hope you are successful in your quest for an earlier appt. In the mean time, keep moisturizing and try and exercise if you are able to get the lymph moving. You could contact the LSN - they might have suggestions for you while yout are waiting. Keep us posted. Best wishes xx

I feel for you.

The sad fact of life is that Lymphoedema gets shoved to the back of the back of the queue time and time again. It's scandalous that you should be asked to wait for months to see a therapist but I'm not surprised.

Here in Cambridge the CCG have recently completed a 12-month study into the plight of lymphoedema sufferers.

As a stakeholder and lay member of a panel looking at how to raise the profile and understanding of the Lymphoedema Service Specification, I have asked for the results of that survey.

The shortage of MLD therapists is not confined to this area. It seems to be a nationwide problem.

in reply to heretohelp

I have been informed by several MLD therapists it costs £3K to train one nurse for LE and MLD

I only had bandaging for7 minthsbecause of fluid retentionand being enciuraged to take sater tablets, Kymphodema wasnt mentioned till ill i looked it up, so they put tubigrqip on both legs,thenballcame on my feet so tubi grip put n legs. Sent to wrong consultwnt so he sent letter to gp, got phone call from Lymph nurse because my daughter gotworried but 26th mayis appt. Nowi am worried, whilei am waiting shalligo up and asklocal nurse to bandage my legs again, iwillalso takeyour advice and get in touch with GP. I am 82 does age make age make age makedifference. Got nothing on legs. Thankyou

If you have any leaking from the legs you will need your District or Practice Nurse to bandage. Otherwise keep a close eye on the skin for any signs of cellulitis recurring, moisturise daily as you are with an unscented cream. Try and elevate the legs when you are sitting and gently exercise by flexing your ankles regularly. A double layer of tubular bandage from toes to below knee can be comfortable. You can ask for it on prescription if you are unable to buy it. There are many brands, but it is not the same as Tubigrip which should not be used.

in reply to Whitesugar

Years ago I was prescribed Tubigrip bandages which I wore and they did nothing at all the swelling just got a lot worse apparently there is not enough compression in tubegrip.

Please keep badgering for an appointment. Hope this gets resolved x

The same thing happened to me. I had a wait of 3 months for app. I kept ringing them with questions and I think I wore them down. They saw me after 6 weeks. It's such a post code lottery across the country. Good luck. Xx

T1affia what did you wear in the meantime?

I rang the Lymphoedema Support Network and was advised not to wear anything as tubegrip ( which my GP prescribed) would do more harm than good.

And there lies the biggest problem of all.

That some GP's just do not understand how to treat lymphoedema which is partly to do with the fact that as soon as MLD is mentioned, they pass the problem over to the hospital who in turn, refer patients to the nearest hospice.

I've always thought that was wrong, but sadly can't see that changing.


Hi, I was forgot about when my last app was due so I went 5 month before I got to see my nurse from Aug to 4th Jan so my next app is due next month so I'm going to ring and make sure I'm not forgot about again.

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