How do you find the support for lymphoedema sufferers ... - LSN

LSN
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How do you find the support for lymphoedema sufferers in the hospitals in the UK?

PaddyZ
PaddyZ

What kind of support do you get?

Does your lymphoedema specialist provide massges or other treatments such as laser, etc.?

38 Replies
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Simply: I do not have a lymphoedema specialist.

If there is no service near you then it is worth finding an MLD therapist on MLDuk.org.uk you may be able to get PCT funding for treatment by a private therapist in special circumstances

How can you get this funding please? I am paying for a private MLD therapist as there is nothing in Reading for people like myself, with non-cancer related Lymphoedema.

My therapist is Vodder trained.

same here and i have had lymphodema now for 6 years no compression garments nothing asked the gp many times for help but nothing yet x heather

I see a lymphoedema nurse every 6 months; she checks whether I need any bandaging and if I don't she just measures for a new set of compression garments. She is not allowed to massage me as I receive my treatment on the N.H.S. and massage is not covered.

I was diagnosed with lymphoedema about four months ago and have just started to see a lymphoedema nurse who has taken measurements and organised a compression sleeve and gauntlet. She is allowed to do massage (even on the NHS) but told me my case isn't severe enough to warrant it. She mentioned that hospices offer complementary therapies such as massage to cancer sufferers but wasn't sure if my local hospice (Harborne, Birmingham) was involved with the scheme. I intend to ask for a referral when I attend my next oncology appointment this month. I have had cancer for nearly twenty years but this is the first I've heard of complementary therapies.

Please ensure that any therapist at any service Hospice or NHS are qualified MLD/ Lymphoedema therapists..ie. have trained in either Vodder, Casley-smith, Foeldi or Leduc methods. Whilst Hospice's do offer wonderful services by qualified massage therapists few offer treatment specific ie. Manual Lymphatic Drainage by qualified MLD therapists and if you have had Lymph node removal then you should be seeing an MLD therapist

Whilst hospices offer complementary therapies ie. massage, please be aware to ask if the massage therapist is trained by either . Vodder, Leduc, Casley-smith or Foeldi these are the european schools of MLD training and we are taught where to encourage fluid to. Many hospices employ massage therapists but they are not MLD trained .

The three hospice/ cancer clinics local to Reading, do not offer massage (Complex Decongestive Therapy) to those like myself with non-cancer related Lymphoedema.

Massage i.e. Complex Decongestive Therapy (CDT) is supposed to be started as soon as possible, to give the best results, according to all the research I have done. Here in Reading it is not available if the Lymhoedema is non-cancer related.

I was asking because I lived in Australia for 3 years (where I was diagnosed with breast cancer, etc. etc. and where I then developed lymphoedema in my arm) - While over there I was given all kinds of treatments (massages, laser, a regular physio) for the lymphoedema. This was all free of charge through their health system. Since I have been back all I get is measured for compression garments every 6 months. Only recently they started providing the made to measure garments (which is an improvement) but I still think it's not enough. I think they should provide regular massage to help it improve. I was advised that regular daily massage (done correctly) could teach the body to find a new route to expel the toxins (and therefore with time reduce the swelling), regardless of whether the lymphoedema is severe or not. Is it not better to prevent than have to act once the swelling has become incapacitating?

The support and care in my area is awful ive been refused a lympcintigraphy scan in the only hospital around this area which does it ( about 25 miles away ) ive had to apply for funding to get it done ... i have just been given a compression stocking for one leg even though i have it in both legs and both arms ....

I get great support from my Specialist Nurse in Cumbria on NHS I have my leg bandaged once a month along with a massage and a referral for prescription hoisery when required.

I did have to pay privately to have a lymphosintogram (can't spell it) last year followed by an appointment to see Prof Mortimer in London.

The lymphodiema support network sell a DVD in self massage and havea number you can call for advice on treatment in your area lymphoedema.org/

The lymphodiema support network sell a DVD in self massage and havea number you can call for advice on treatment in your area lymphoedema.org/

there seems little support generaLLY, ive never been to a lymphodema clinic but manged at surgerey and practice nurse who did A GREAT JOB THEY WERE ADVISED TO APPLY THE COMPRESSION BANDAGES BUT SOME WERE BETTER THAN OTHERS, IVE JUST MOVED AND I IM NOT SURE WHAT HELP I WILL GET, jUST HADA FLARE UP SO HAD LEGS IN COMPRESSION BANDAGES, mY HUSBAND AND I APPLY THEM AND NOW IM BACK IN MY COMPRESSION KNEE HIGHS, I GET THREE PAIRS AND 3 PAIRS LINERS ON PRESCRIPTION EVERY THREE MONTHS. i WOULD LOVED TO HAVE GONE TO A SPECIALIST CLINIC BUT NO JOY

Although the lymphoedema nurse at my NHS hospital was very nice, she was obviously overworked and spent at least ten minutes of each of my three visits (6-months apart) telling me how much worse her other patients were. I started out with (according to her) 30 percent swelling and am now down to about 15--she has dismissed me, which feels a bit scarey. She did measure me for a sleeve, and I can get two every six months, not enough, since I wear a sleeve/gauntlet which gets filthy and wears out at about three months. I would love to feel like I could get more support from her, but no way, and also no way I can afford any of the things I think might help: lessons on wrapping, night garments, more MLD massage coaching. Ah well.

On the other hand, there are two places I have gone for really good bc-related arm/truncal lymphoedema help. One is a US website called step-up step-out (you can google it + lympoedema) and the other is the lymphedema section of the breastcancer dot org website. Although they are US based and you have to discount the insurance chat, (and the way they spell lymphoedema) both sites have both been a gold-mine of information, including sleeve information, links to videos on self-massage, and current best practice and research.

Oh, yes, also Michigan State University has an interesting selection of Lymphoedema resources on Youtube, including ones on MLD for both UPPER AND LOWER extremity Lymphoedema.

Sorry, I seem to have rabbitted on a bit, but developing lymphoedema has seemed pretty much like a DIY experience this past year, and there are not many places where I have found help ..

mldmassage
mldmassage
in reply to quail

Hi Can you message me and I'll see if I can give you any pointers for services, self help etc

I see a Macmillan Nurse who specialises in primary and secondary lymphoedema who is based in Skegness which is 25 miles away from me. I see her every 6 months. The Skegness clinic has been going for a couple of years now. There is a clinic in Lincoln but they only deal with secondary lymphoedema. My other nearest clinics are Nottingham and Grimsby which are way too far for me living in South Lincolnshire.

When my GP suspected I had some sort of lymphoedema he had no idea who he could refer me to. I ended up doing my own research and passing the information to him so he could refer me.

I have been told my lymphoedema isn't severe enough for MLD but I think I would benefit from it. I have not been seen by a vascular specialist and haven't been sent for that thing where they inject dye into the toes then scan me either (not that I would want it done - I have aneedle phobia!). I get measured every 6 months and qualify for 2 pairs of stockings on the NHS every six months as well, although I have gone over my quota a couple of times after putting my fingers through my stockings when putting them on and nobody has told me I cannot have them replaced as I've had my quota yet ;-)

I've not been offered any other treatment (if there is any out there)

Simply not enough resources to provide adequate treatments - the leg measurments and compression garments issued annually is the very least available - and that too only for those lucky enough to live in certain areas. As PaddyZ states, MLD is vital to stop the condition from worsening, but very few clinics provide MLD. The idea that we can slef MLD with or without the aid ov DVD is wishful thinking - tried several times to no avail - infact did more harm than good! The trained therapist at the clinic is overworked and the 30 minute time slot once every 6 months is not enough to give any sort of advice or MLD instructions.

All the leaflets provided by the LSN give a general overview of the condition and always finish off by saying - for more help or assistance speak to your doctor or lymphodema specialist - a real cop out! In most cases they know less than we do. Most up to date information is toi be found on the internet networks - this link is very friendly and informative

. . . facebook.com/groups/2824159...

all are fellow sufferers with more help and support than you will generally find in the UK.

Often ignored or refused adequate care, it is easy to become depressed and disheartened, but we need to fight for our rights - Lymphodema is a debilitating disease - the numbers of sufferers, especially Secondary following cancer treatments, is growing rapidly. The NHS cannot ignore the condition and adequately treating it. If left untreated or correctly managed it will progress into a more expensive stage of treatment. It is vital to diagnose it and start treatments as early as possible.

Best wishes to all fellow sufferers!

Christo

I was diagnosed in January 2011 with Cervical Cancer and James Cook Hospital were fabulous to get me in and sort this out really quickly, by having a keyhole hysterectomy and removing the lymph nodes from my groin. I then underwent 24 sessions of radiotherapy. Everything was done and dusted by April, and I even did the Race for Life the day after my radiotherapy finished. Organised a big garden party for my 40th and as a photographer did weddings and portrait sessions and got back into normal life (in a fashion). It was only this year from about June that problems started with my legs and the lymphoedema started.

I did say to my consultant about my legs and they transferred me to the lymphoedema nurse within the Holistic Care Centre. I was given compression tights and have been wearing them since July. I've recently been given a different make and these do crease in the back of my knee and at the front of my ankle, which causes the area to get red and angry and quite painful. I'm only wearing them through the day, and getting up on a morning my legs are hot and tight. I work part time in an art college as a lecturer so I am on my feet all day Tue/Wed/Thurs. Obviously the clothing within an art college is quite liberal and I didn't ever wear skirts/dresses as I felt overdressed, lived in jeans and trousers, if I wear tights under jeans this just doesn't work, and all of the dresses available at the moment are above the knee... not hiding my large legs (calves, knees and ankles) making me feel very self conscious. Getting shoes on is also a problem, my flat pumps hurt around the toe area, boots my feet are too swollen to flex my foot to get them in. So I've bought some rather nice brogues (luckily bang on trend) and haven't worn heals at all since June!

The only exercises I have been given were buttock crunches, leg raises and rotating of ankles/flexing. I am quite an active person who has two dogs which I am missing taking out on long walks, because my legs are so painful and my hubby is starting to feel the brunt. I am due to go back to the consultant on the 26th and have been using the tights but feel surely there is something more that I can do????

Any help would be much appreciated.

Jx

alfie19
alfie19
in reply to jansec

You might be able to get your GP or Lymph Clinic or Nurse to refer you to the hospital orthotics department as they will measure your feet and order your footwear which is made to your measurements.

This is a brilliant service at the hospital but you have to be referred.

Unfortunately not much of a choice of style. The Boots with velcro tabs are brilliant for the rain and snow but too hot for the summer.

There are shoes available but they don't support the ankle.

Also ask for Cir-Aid Support Strapping using velcro tabs for night time this helps the circulation and to reduce the swelling so you are more in control.

You might be able to get your GP or Lymph Clinic or Nurse to refer you to the hospital orthotics department as they will measure your feet and order your footwear which is made to your measurements.

This is a brilliant service at the hospital but you have to be referred.

Unfortunately not much of a choice of style. The Boots with velcro tabs are brilliant for the rain and snow but too hot for the summer.

There are shoes available but they don't support the ankle.

I might point out that while you all want help and advice, on the 5th October I did post that if anyone wished to message me direct I'd be happy to try and point people n the right direction... only 1 person has done this....

Contact LSN for support and addresses of Clinic

As someone who has come through breast cancer, my friend who works in the medical profession in Australia and also Canada told me how people are fed into exercise classes within 6 weeks of treatment and are given advice re diet, massage, etc. That would surely be so easy to do here and I'm sure cost effective. Dragon boating is supposed to be an excellent exercise with proven benefits for arm/chest lymphodema, I tried to organise a team for other survivors and only got four responses. In the afore mentioned countries there are many teams of survivors undertaking this form of exercise. I think there is a lot of highlighting the immediate care and treatment in the form of survival rates and research into improved treatments and this is right. However I feel there is so little in after care and support for conditions that affect the remainder of a persons life and this is so wrong . I'm sure the NHS must be paying millions in coping with affects of treatments if not only in regard to depression, infections etc surely not cost effective?

I was managed by my gp and tissue viability team initially it took me over a year to get to a lymphedema clinic by which time I was coping with the prescribed treatment, I was cross I needed their support initially, and they say they may have helped save my nursing career, so all new patients fight to get to a clinic.

Like Jinger I had to do my own research to find out where the nearest Lymphoedema specialist was so my GP could refer me. I now go every 6 months where the nurse measures me and arranges for 2 new pairs of knees to be sent to my home. Like someone else said 3 pairs would be nicer one on, one off and one in the wash so I keep a couple of old pairs just for emergencies. When I was first referred I had compression bandages and got a massage once they were finally taken off and then I got my first pair of socks. Haven't had any massage since as the nurse that now sees people is a MacMillan Nurse and not trained to give a massage. They had to let the MLD therapist go due to cuts in funding

7 years with lymphodema still havnt been able to get an appointment with anyone so just put up with it on my own only had 2 pairs of compression garments to the knee never been seen by a lymphodema nurse etc feeling very lonely right now

From what I've gathered recently, there is little or no support but I have yet to investigate more thoroughly. Any advice would be welcome.

I find the lack of treatment in central London by the NHS lacking, information bad. I have tracked down that the Royal Marsden and hospitals in Enfield, Kent, etc. have better services. I am still trying to find someone local to the London WE. I intend to take up this matter with UCH. My nearest hospitals are UCH and St.Mary's but as far as I know neither have clinics or facilities for treatment.

Lynora
Lynora
in reply to warren20

Hi Warren20 - there is a lymphoedema clinic at UCLH, as part of the Cancer Services Division. If your lymphoedema has developed as the result of cancer treatment, then your GP will be able to refer you to the service with no hassle. There are also services at Charing Cross Hospital, Guy's, Queen Charlottes and Chelsea and Hammersmith. The Royal Marsden has two l/e clinics - one in Chelsea and one in Sutton.

I have been lucky in not having cancer but the lymphoedema is very severe and I receive no treatment whatsoever from a visiting nurse or a hospital. I am going to look into the situation at UCH in London as I am a member of their interaction scheme. There is a meeting on 25 March where I hope to bring up this and similar issues. As far as pain goes, the legs do not give me too much trouble unless banged against and the fact I can't wear even wide shoes - hideous big boots and sandals only. My pain comes from an arthritic hip/back condition which prevents my walking more than 50 yards at a time. Another condition which is hard to alleviate, plus high BP and all the tablets and after effects, but so far I have been lucky with cancer - but who knows my sister was undiagnosed with stomach cancer and by the time they opened here up it was too late to operate. But of course the scans and tests which could be preventative are blocked by most hospitals because of the cost involved - THEY SHOULD BE ROUTINE FOR THE WHOLE POPULATION.

Hi! My secondary lymphoedema was not diagnosed by surgeon until 3 months after I had gone to him with visable swelling. Then he sent me to a breast cancer care nurse for fitting into off the shelf sleeve and glove (which cut into my skin around the wrist area). Was given some leaflets and that was about it. Was very upset.

Was told that I would be prescribed two sets of new compression garments every 6 months by my GP. I asked about MLD massage etc but was told that the BC nurses aren't qualified. I found out about a specialist Lymphoedema service in my city and asked to be referred. 6 months on from first noticing the swelling I'm finally going to get an appointment to see a specialist nurse...All the info that I can find on the internet says that it is vital to be treated as soon as possible...

I have been contacted by the lymphoedema charity. They have sent me leaflets, and given me information about clinics in London. My GP has not made much effort. The question I would most like answered is "What is the source of lymphoedema?" There must be root cause. The present remedies obviously do not work, and, as far as I can see, do not improve or cure conditions. Not enough research is being done. Perhaps micro surgery is the answer. I suffer from arthritis and attended an osteopathy college in North London. They actually spotted things my GP had not; they thought my heart might need attention. Circulation would become poor if the heart not operating efficiently. My GP more or less said that all the tests I have had recently for cancers of womb, ovaries and bowels showed nothing against my heart, but now I am going to insist on a proper heart examination, ECG I think it is called. I asked him to refer me to a good osteopath in central London - easy for me to get to - but he said you had to go first to a physiotherapist. I have seen one whom, in my opinion was useless for an old person with arthritis, from the point of view of pain relief. Now I am going to ask to see a physio at a good hospital where they will, I am sure, refer me on to an osteopath. Otherwise, I would be willing to pay a good one. They have to be registered, and hopefully not too dear. The Osteopathy College near Finchley Road is very good and reasonably priced, but you have to climb a very steep hill (pedestrianised) to reach the college at the top. Hard for disabled people.

none existent. Been suffering for 28 years after cancer, only just been told that our local hospital Airedale has a lymphodema nurse by a friend in last few weeks. No medical professional despite years of issues has ever mentioned this service

HI, I see a lot of you have a specialist , my hospital has offered me nothing so far. After diagnosis they said they would refer me to one but that was a few months ago and still nothing not even a leaflet - my local hospital is Southend-on-Sea, they have been put on special measures recently for poor performance so I'm not surprised!! I attended a thyroid clinic there for a short while but then they said they couldn't

offer me any more appointments as the consultant had resigned and they had nobody to replace him! I have developed bulging eyes and double vision but have to rely on my GP for blood tests and medication management now. I have crohns and ulcerative colitis too and feel pretty miserable just now. NHS? what NHS!

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