Why is lympheodema getting less and less recognised by the medical profession?

[galtyboi]

I was attending a hospital every six months to get measured for compression garments , after about two years they told me they were not treating anymore lympheodema patients, so they referred me to another hospital and lone behold they stopped lympheodema treatment also, now i got no place.

[Perido]

Is this an effect of the covid19 crisis? My lymphoedema clinic recently suspended all services because of the crisis. I hope it's a temporary situation - if not I'll be writing to my MP. My custom fit stockings are my medication, as important as a lot of other medications, without which my condition will deteriorate.

[galtyboi in reply to Perido]

Mine was before covd virus, and its permenant, big loss to me, dont know what im going to do now, i got no letter from nobody.

[bulldogbyrne]

They do not prioritise lymphoedema. I know my clinic has found it really hard to recruit to.

[DeadfootMo]

There are 3 reasons I can think of;- 1) Covid-19 has literally closed down a load of medical services. My crown tooth came loose 6 weeks ago and then almost immediately after that when I tried to book a dental appointment, I was told they were closed until further notice and that I should try again in three months. I recently suffered some rare bleeds but on this occasion, I was given a hospital appointment in less than a week, which the hospital then cancelled for another 5 days later. Even trying to re-book repeat prescriptions is a serious issue as the service is only available for 2 hours 10-12 Monday - Friday only. Its the biggest GP practice in Newcastle upon Tyne, so getting to leave a message via connecting to the link is horrendous. In fact, I have resorted to email because if I hadn't, I may not get my preventer inhaler next Tuesday when I will run out. This is also after a week of trying to book one via the recorded message service.

2)Many health professionals don't see our Lymphoedema issues as true medical conditions, many believe that they are self caused by poor diet, lack of exercise and for some of us being overweight and obese.

3)A third reason for this closure of services or stopping them in certain areas, Is that due to a shortfall in medical professionals specializing in lymphoedema issues, those patients with this problem are now no longer being prioritised. In fact it is possible that due to the majority of Lymphodema clinics, having taken place in hospices, that they may also have to re-site this service as it is unsafe to run with lymphodema clinics to close to some patients who may have Covid-19.

I sincerely hope that you can at least refresh any orders for your compression socks if you need them as your records should still exist online and someone will be responsible for keeping track of these and any new prescriptions for medications and other medical treatments.

[galtyboi in reply to DeadfootMo]

Thank you for your reply and i read your three possible causes. My last appointment was well before covid 19 and i think its possibly caused by not enough trained doctors know about lympheodema and nurse are not been trained on it, but i’m just hoping my doctor will do percription for me.

[BADFoote in reply to galtyboi]

In the U.S. it isn't always covered by insurance. If your hospital doesn't cover it, your doctor's office should be helping you find the care you need. If you do an internet search, you can find smaller clinics and physical therapists who can help you. You will have to pay for it yourself. Or, you can contact your insurance company and ask what your options are for treatment.

Also, it is true that with the rise in obesity the insurance companies have seen a huge increase in lymphedema and are not covering it because of the cost increase. Your doctor doesn't know what your insurance covers. It is up to you to contact them and ask what is covered by your insurance and who they can recommend you see.

[galtyboi in reply to BADFoote]

Hi Thank you for your reply, Here in the Uk we have NHS (National Health Service) which we pay into through out our working careers, which covers us for any sickness and health issues we recieve during and after our working years.Iv’e ben very happy with the NHS and NHS has been very good to me over the years, they do a terrific Job , but now i am retired the NHS pay for my compression garments and doctor and nurse care, Thank heavens for the NHS , last thing i want is to be dipping into my megre little pension and have to pay for my compression garments , after all my years contributions to the NHS, but thank you for your input.much appreciated.

[legseleven13 in reply to galtyboi]

I have recently been told that I can no longer have my knee length, open toe compression stockings on the NHS - after years of getting them on the NHS! I now have to pay £43 for a pair of stockings - and am buying 3 pairs at a time to maintain their effectiveness. I have been seen by Professor Mortimer in London - it was that lovely man who diagnosed Lymphoedema after lots of tests.

Worked until I was 68 - paid into the system all my working life - and now I’m having to pay for garments that were once on prescription. No Lymphoedema clinic at my large local surgery either - closed over a year ago.

I feel very angry about this - and at 76 plus feel overwhelmed with this injustice.

Lymphoedema is bottom of priority list nowadays - and the consequences are dire for so many of us.

Christina Bennett

[Chris21]

In forty odd years I’ve never found any help from hospitals. The GP surgery would measure for renewal of stockings.

[galtyboi in reply to Chris21]

My GP’ knos nothing about lympheodema , thank fr reply Chris.

[On_porter]

Correct me if I’m wrong but I don’t think you’re having trouble because of covid? This is temporary and affecting a lot of services due to the risk involved of catching it in a medical environment. Where are you based? Is your GP able to reorder things for you that still fit on prescription? How bad is your lymphoedema- I find it hard to believe no one will see you ... unless this is a problem of the last few weeks rather than years!

[galtyboi in reply to On_porter]

Its not a case of nobody will see me , its a case of two hspitals whom i was getting treatment has stopped treating lympheodema patients , now i got no place, and no communication from the nurse to gp . What should happen is the nurse should tell my gp that treatment has stopped and gp should find an alternative hospital that does treat lympheodema patients, the way it happened was not good , i turned up for my appointment was given stockings measurments and told this appointment is your last one, we are no longer treating lympheodema patients here and that was my lot.

[Trn20 in reply to galtyboi]

I’m really sorry to hear that as it sounds like a general problem as you say of shortage of doctors or priorities in the hospital funding. Has your GP been able to find you another place yet? I’m not in the UK but in the Netherlands but here the treatment for lymph drain massage and fittings for compression stockings are done by Dermatologists. I first needed a referral from theGP to the hospital for diagnosis (which I have to do every two years as the insurance companies insist that lymphodema is recoverable over two years rather than accepting it as a chronic condition). This is done at the dermatology department. I then get a second referral to a dermatological clinic who then give the actual treatments.

Maybe your GP could find a clinic that specializes rather than the hospital? Just a thought. Hope you get treated again soon.

[Perido in reply to Trn20]

Hi, it must be very frustrating for you to have to continually reapply for referrals. I'm wondering if it could be worth getting some information, endorsed by a lymphoedema specialist, which informs that your lymphoedema is incurable and forward it to your insurance company?

[Perido]

When I approached my GP for compression stockings they offered me an off the shelf product; all the ones I've tried don't work well for me. I need a custom fit stocking for which I need to be precisely measured by a trained lymphoedema specialist. After many phone calls and e mails my GP has ordered me a custom fit stocking, based on old measurements which I managed to procure from my stocking manufacturer - I'm crossing my fingers I get the right thing.

[galtyboi in reply to Perido]

Best of luck , it pays to get measurements copy just in case all lmpheodema patients will be refered back to gp , the way things are going

[Ap8440]

Yes I find after 3 years and no better in this time they want me to see a nurse as a monitoring system . It’s all about money . As a nurse gets less than a lymphodema specialist nurse .

I find many docs / consultants know very little about this illness . After getting my compressions and wraps from hospice based clinic I could get them on prescription from my doc . That’s ok for wraps as they are off shelf .

But custom made if old ones are ok you could ask for your measurements to be sent to docs . I’m only getting a telephone conversation instead of my usual visit to them . ( but this is because of cov 19 . Now it’s only 6 months

But you are allowed 2 new pairs every 6 months

And you need these renewed .

[galtyboi in reply to Ap8440]

Thank you for you reply , it’s a good job i copied the measurements from the nurse when i had one, it will have to be the doctor now for a note, , but doplar tests are out , it’s just a shame the medical profession know nothing about lympheodema , sad days ahead for lymphatics.

[violetsnowdrop in reply to galtyboi]

I have only been to the Lymphoedema clinic once--to get measured for initial hose, briefed (briefly) about what to do , then discharged to GP practice. The clinic is located in the local hospice and only deals with hospice patients. Fortunately, one of the practice nurses takes a keen interest in Lymphoedema and advises the GPs accordingly. I have noticed, in the 10 years since I have had Lymphoedema that the practice GPs have shown more awareness ( due in part, I think, to that nurse giving a presentation during a Practice Training Day).

Separate from this I also have Diabetes 2 and, at the end of February this year was admitted to A & E because my legs suddenly ceased to support me. I spent 15 day on intravenous antibiotics before being released to home care. I am still only able to walk with a Zimmer frame. The incident is being treated as "unexplained", although there was evidence of both cellulitis and sepsis attacks. It was also muted that periphal neuropathy could have been a factor. The good news was that, even though my legs felt frozen(movement wise) all the lymph fluid disappeared leaving my legs thinner than when I started. Unfortunately, in the intervening 2 months the movement has slowly returned to my legs but with the unfortunate side-effect of the lymph collection returning.

[galtyboi in reply to violetsnowdrop]

Looks like theres good nurse at your clinic who takes keen interest,lets hope she will keep her job,Ive already been to two clinics and both have stopped treating lymphoedema patients.It's like no gp is interested or knows anything about it,I read about great things happening at Stamford University in the states,but over here it's dead duck,maybe lack of government funding who knows?

[Perido]

An update on my situation (in the UK) as of 5th Aug: I recently wrote to my local Clinical Commissioning Group (CCG) explaining my concern about the suspension of my lymphoedema clinic. The CCG have just e mailed that I should expect to get a date for a rescheduled lymphoedema appointment by 18th August and they have given me a number to call if I don't hear by that date. Normally I wouldn't put this out until I was sure I had an appointment but I thought I would give a heads up to let others know that writing to your local CCG should be a way forward if you are experiencing problems getting NHS lymphoedema treatment.

[galtyboi in reply to Perido]

Thank you for that valuable piece of information, i’ll certainly will be getting in touch with them .

[Benita88 in reply to galtyboi]

you are welcome!

[galtyboi]

Thank you for that valuable information, i will certainly get in touch with them.