Since being diagnosed with lymphoedema early this year as a result of surgery/trauma I have been trying various stockings and tights which wouldn't make my sensitive skin itch.
I phoned my lymph team up today to discuss where to go from here and I have been told that they can no longer support Lymph patients unless it is cancer related.
GUTTED!
that’s no good news. Did they give a reason why? I have primary lymphoedema and only last discovered that there’s an actual clinic. Went last year for the first time where they gave me below knee socks/stockings. Hope this isn’t the end and I’m back to being on my own as it was when I was diagnosed.
Also did they tell you where to now go for help?
I was told that I could contact the district nursing team if I develop sepsis or cellulitis. I have never had these conditions and wouldn't know what to look out for.
Shocking! I hope you get some suggestions/advice from your local support group.
That's very harsh to block you on the grounds of you not being a cancer sufferer, and condescending just to say you can see the district nurse if you get sepsis. The level of awareness by them is not that great so if I were you, I would watch out for any redness or soreness on your skin, flu like symptoms, shivering, excess sweating and feeling generally unwell. In my case I didn't act upon it straight away as I was convinced I had flu and ended up in hospital for 2weeks and nearly had my leg amputated !So be aware, and if you are unlucky enough to develop sepsis or cellulitis, get some antibiotics into your system as quick as possible. Good luck!
Oh dear, I'm sorry to hear about your experience and hope that you are managing okay.
Thank you, it's far from perfect but I'm not as bad as some other people on here. Be thankful for small mercies! 😁
Oh dear, poor you. Sounds like a step backwards... 😔
Absolutely! All the documentation I have read about lymphoedema is that prevention and management is paramount. Fortunately I have found a support group which meets every two months and I am hoping someone there might have suggestions too.
You should still be entitled to treatment, though, and it's disappointing that you're being turned away - but I'm glad the support group is helpful.
I had excellent care for 20 years at a clinic funded by a charity. Their fundraising suffered at the height of the measures against the (ongoing) pandemic, so they also now only deal with cancer-related cases. The only positive I've seen is my GP being primed to prescribe a double-length course of antibiotics, when necessary.
Sorry to hear this. Hopefully there are other lymphoedema clinics in your locality? Tell your GP about your situation and ask for a referral.
It seems it's not an uncommon experience for lymphoedema sufferers to encounter difficulties with getting professional advice/treatment.
I was diagnosed with lymphoedema (cancer related in my case) in 2017. I'm now on my third clinic; the first one shut down due to Covid and the second one wasn't able to cater for my needs. I've also used 4 different private lymphoedema care providers to address unmet needs.
Eurgh that really sucks. The LSN might be able to advise on alternative clinics near you!
I’m sorry to hear your clinic stopped your treatment just because you didn’ have lymphoedema from cancer treatment…this happened to me last year…in Leicestershire! It really is outrageous!
Your Gp should be able to point you in the direction of the nearest clinic…also the LSN have lists of clinic and local support groups who may also be able to help.
Best Wishes and Hope you can find help soon.
Go online to. Lymphoedema Support Network and search their site it has everything on it. Also they have a help line staffed by knowledge real people. They’ll help you find a clinic.
Will do thank you
This is not good news. To me it sounds like you are being given short shift. I was given short shift as I too have very itchy skin as I regularly have stress related eczema related flare ups all over my body. Sometimes the flare ups become infected and I then get cellucitis. I have to keep my skin moisturised a lot and this is not suitable for compression. Again depending on how severe my skin gets I may have to do viscopaste wrapping so again its not suitable for compression.
When I have used compression it has seriously aggravated my skin, causing extra ridges lines of sores, serious pins and needles and cutting off my circulation around my toes and ankles. The pain has also been intense and all I have wanted to do is cut the compression off, or get them off asap.This is despite the fact that the compression has been hell to get on in the first place.
I also think that, if you think you have found something better than what the Lymph team can come up with, this is possibly another reason why they have given you short shift. There are thousands of lymph sufferers who haven't got cancer, who have it mildly or very badly and nearly all of us at some point will be given short shift.
It is also apparent that this giving of short shift sometimes comes after feelings of , oh well as a team we have tried, and enforced the need for compression as the only option available for lymph treatment on the NHS, but I also say that funding could also be another reason why some of us don't get the services we need.
There is also ageism to consider too. If you are a 20 something young person with lymph troubles you may be eligible for Liposuction and this I have seen on TV recently. It was fantastic as this young girl with very large upper legs and ankles due to lymph issues, went to a gp who recommended that she see a skin and lymph specialist. As she felt down and in a constant low mood with the pains of everyday life, due to her lymph issues. On seeing the specialist they gave her an appointment to have this liposuction on both legs and then after this, she had a follow up gp appointment to view the results and the results were breath taking, she had normal legs and ankles after the treatment. No more pain, no more fluid build up and she felt much better in herself.
I am 61 and I asked my GP about this option and they told me flat out, I was in the wrong age group, had a selection of skin problems that rendered this treatment as not appropriate, due to its invasive nature and the fact that it was also dependent on a complete change of lifestyle for it to be beneficial, so would not be financially expedient for the health service to provide lipo suction to me.
Strange that a young person with issues, would be offered this treatment and not someone in later life with the same issues. Ageism and discrimination is rife about who is deserving and who isn't in the health service. So again we suffer. Victims in some instances of the postcode lottery, others of age, and others becasue we dare to question what is and isn't appropriate treatment for our issues.
So if I were you 1VernOn, I would get second opinion from another GP and find out if you can attend a different Lymph clinic.
Hi, sorry to hear about your trouble. That has happened to me 3 times over the past few years. I'm a primary case in Hertfordshire. Speak to your GP, sometimes the local hospice offers Lymphoedma Services with GP referrals.Also write to your local health authority and MP.
My MP kicked up a stink and the decision about treatment was withdrawn.
Best of luck
I have been told that I cannot access any services because I am housebound (lymphodema so bad I cannot lift my legs into a car and easier to pull hens teeth than to order non-existent wheelchair taxis). My lympho is getting worse and I have not had cancer either.
That's absolutely outrageous !The NHS do, and should provide suitable, assisted hospital transport for you.
Contact your GP and your Lymphodema clinic.
Cannot get hospital transport because it is a clinic in a medical centre not a hospital and I would have to go under my own steam in a taxi - I cannot get my legs in a car and a wheelchair taxi only does school runs. The lymphodema clinic will not provide compression stockings, etc even though the Lymhodema Nurse finally came to the house and took measurements. You have to go to the clinic. NO CLINIC - NO TREATMENT.
The only way I could get anything is to go private. I cannot afford to do so as I am now on a pension and all my savings have gone on complete renovation of my bungalow (new roof, rotten joists and floorboarding and flooring, adaption for bathroom, etc,)
I understand what you have written.This is a shocking situation and can't, for your health's sake, go unchallenged.
But is not the clinic in the health centre, not a NHS facility ?
I would consider the following, in no particular order . . .
Contact:
The Practice Manager at GP Surgery
Adult Social Care Team at your Local Authority.
Age Concern UK ( I'm assuming you are of an older age, if not my apologies).
PALS (Patient Advice & Liason Team)
Your local MP (if all else fails).
ADDITIONALLY, there is an organisation called Driving Miss Daisy. They offer a fully accessible transport service (you stay in your wheelchair), so no getting in and out.
They are private, open to anyone who needs assistance, but their rates are really affordable, way cheaper than a regular taxi.
I have used them myself.
The drivers are extremely kind.
drivingmissdaisy.co.uk
I really hope you can get this sorted out.
Kindest regards.
Your situation sounds horrific. Do you live in an area that has a district nursing team to help or could your GP make a social worker referral to advise? Have you spoken with anyone from Lymphoedema Support Network?
Hope you get some much needed support.
Hi, hope this finds you well. I have had a similar experience, I have been diagnosed with Psoriasis, had idiopathic Lymphedema for years in both lower legs but the onset of Psoriasis has been awful. The clinic nurses now refuse to see me as I can’t tolerate wraps or stockings, I need dressings and comfifit tubular bandages all the time on both legs because lymph leaks and messes the psoriasis up big time. I cannot get the psoriasis under control in my legs or feet and I have now been in a flare for well over a year.
I feel your pain re no help with lymphedema, my legs are again huge but what can we do !!!??? My doctors are more concerned about treating the psoriasis and the recurring infections. When I told my gp I had been discharged from lymphedema services for basically “none compliance “ obviously not my fault, he said well we will have to do the best we can !!
So sorry we have this constant battle to get care, everything I have read over the years indicates lymphedema needs treating and it is not something that should just be left, it does not go away. I posted on the psoriasis board on a very big and well known site to see if anyone had the same problems, psoriasis and lymphedema and although I got some replies not one person had both conditions. So like you I am left with with no help or treatment for goodness knows how long, it’s been around 14 months already. I guess all we can do is vent our frustration and keep complaining to the medical profession. Take care, hope you get help soon.
I'm sorry to hear about your battle, you're not alone and thank goodness for this support group.
That is just outrageous !Obviously I don't know your situation, but you might be interested to read a post that I have just submitted.
Don't give up, make a fuss, whatever it takes.
Suspicion of primary lymphoedema
Please help interpret results!
Do compression pumps reduce a swollen limb?
Advice on stage 0 / 1 Lymphedema 
