After 10+ years I've been discharged from the Vascular Department

[Applekenke172]

Morning AllI live in London, UK and just before Christmas was discharged from a Vascular Department in a London hospital. I had been under their care for over 10 years, this was the place I went to have the xray where they inject the dye between your toes that will show how and light up how your lymphatic system is or isn't working. I apologise the name hasn't come up me as yet..I know it begins with L.

Moving on, I'm sure I will remember later on. In my case it flagged that I had primary lymphedema in both my feet and legs over my knees to my thighs.

Before Covid-19, I was being seen every 3 to 6 months sometimes 9 months and I was on a waiting list to have a liposuction surgery to remove the built up fluid from my right leg because at the time that was the leg that was swollen and painful as well as filled with fluid that would slowly seep out of over stretched old scars.

After Covid-19 things had changed I had to fight to stay under the care of the Vascular Department, because the thoughts of where would I get the prescription for the grade four compression garments or the fact that I continued to raise the issue of the operation I was supposed to be on the waiting list for. But they didn't seem to care I was shoved onto a telephone clinic while making requests to be seen as my worst leg had swapped from my right leg to my left leg. I was on this telephone clinic for 3 years even though I kept pleading to be seen face to face to no avail. To be discharged ment that I have had to start the process over again with one of the GPs in the medical centre I attend. It's disheartening and depressing because the compression garments I was last fitted for over a year ago are so tight and dig in..both my legs are a lot bigger than before. I have started to exercise more, however my legs are extremely swollen and heavy, footwear and speciist footwear have become too tight as well as uncomfortable.

I'm having to explain to the GP about the process of getting compression garments, how the condition affects me and the types of exercise I use to and want to take up again. I'm telling her about hospitals in London that deal with primary lymphedema.

Although she came back to me and informed me that those hospitals deal only with secondary lymphedema and they weren't willing to even take me on because I don't have cancer...

So I'm at a loss as I don't have the compression garments I need to wear or someone or somewhere that specialises in primary lymphedema in London under the NHS.

[Lynora]

(Lymphscintigraphy - the dye scan)

Ask to be referred to St George’s - Professor Peter Mortimers team.

The GP is poorly informed. Give the Lymphoedema Support Network a call - or click on their icon on the right hand side of this page - they will give you contact information.

[Applekenke172 in reply to Lynora]

Good evening Lynora

That's it the Lymphscintigraphy dye scan. When I saw her last, I told her about St George's Hospital and she informed me about 2 weeks later sometime in February, that St George's Hospital would not see me as they only deal with patients with Secondary lymphedema.

However I will contact her again once I have gathered more information from LSN.

Thank you very much for your response and guidance. It's much appreciated.

[CCT67 in reply to Applekenke172]

Your GP is dead wrong about the Lymphoedema Service at St George’s only accepting Secondary Lymph. It certainly does accept Primary Lymphoedema referrals. In fact, they are the leading hospital in the world re Primary Lymphoedema genetics research. They also accept Lipoedema referrals. However, only Wandsworth residents can be referred in by GP. If you’re not in Wandsworth, your GP will need to refer you to a local NHS lymph clinic, if there is no local lymph clinic then ask for referral or to a Consultant. (The Lymphoedema Support Network charity based in London can tell you what local lymph clinic catchment you’re in.).

Any type of consultant can refer a patient to the St George’s Lymphoedema Service. Ask your GP for referral to Vascular Consult or Dermatology Consultant, it doesn’t matter what hospital the Consultant is based. Alternately, you could see a Dermatology or Vascular Consultant privately, request they refer you to St George’s Lymphoedema Service.

The head of the Lymphoedema Service is Prof Peter Mortimer however he will be retiring in April 2024. His colleague Dr Kristiana Gordon will take over, she’s been the clinical lead of the Service for many years. Like Prof Mortimer, she is a Primary Lymphoedema specialist. The lymph clinic at St George’s also has loads of Primary Lymph patients. Not sure why your GP thinks they only deal with Secondary, very misinformed s/he is!

The scan you had was Lymphoscintigraphy aka Lymphoscintigram.

[Applekenke172 in reply to CCT67]

Good Morning CCT67

Oh my goodness 😳. Thank you so much for this information. I will ring today for an appointment to see the doctor and share this information with her.

Thank you once again for this information. I will let you know how I get on.

I was beginning to feel quite depressed about my condition.

[CCT67 in reply to Applekenke172]

stgeorges.nhs.uk/service/ly...

[Applekenke172 in reply to Applekenke172]

Good Morning All

I hope that you are all well.

I just wanted to give an update to what's happened so far after being discharged from a Vascular department clinic last year.

First of all thank you CCT67 & Lynora and others too.

My GP hade made a request/ referral to the Lymphoedema Clinic at St John's and St Elizabeth hospital at the beginning of this year. The appointment came through earlier month and I went and realised that I've had the incorrect treatment for my Primary Lymphoedema for the last 15 years...wowwww I was shocked and I broke down because I remember being told by consultants and other medical professionals that compression garments were the only way.

However I learned at my appointment at St John's that I should have been measured for and wearing toe caps, foot wraps and legs wraps for a period of at least 12wks before transitioning to compression garments.

And when I would speak about how my skin on my shins had stretched and become cracked and itchy there wasn't any advice as to what I could use to alleviate the cracked skin or itchy skin

I now feel that at last I am finally in the right place of care for my lymphedema, it was refreshing to speak with people who knew exactly what care I needed ...I broke down again but I left my appointment with new hope and new knowledge. I'm on a new journey as I wait patiently for my lymphedema prescriptions.

I will update you all in the next month or so.

Once again thank you all for the advice and support given. 😃👌🏾

[6thplanet]

I have primary lymphedema and suffered for 14/15 years I live outside London, UK, Berkshire. and my Dr tried to refer me to St George's as there is no specialist hospital locally, I was allocated an appointment with St Georges's and then it was canceled by St George's saying that the GP could not directly refer me and I had to be referred via Basingstoke hospital who do have a lymphedema service, although as I understand it is just one nurse. The waiting list to be seen here is over a year. My original hospital that provided me with compression stockings no longer provides this service and my stockings are too tight as my leg has increased in size. I haven't had a consultation re my Lymphedema since my original diagnosis in 2010. I'd like to be referred to an expert and it's proving very difficult. In the meantime I have found a private lymphedema nurse who will see me and measure me for new stockings, hopefully this will help whilst I have to wait years to see an expert. This can't be right - I'd be interested to know how you get on being referred to St George's as I am in a similar position.

[Perido]

I hope you can get the help you need from the NHS as per advice above. If it proves difficult, and if affordable, consider seeing a MLDUK therapist: those with member DLT after their names are fully trained to treat lymphoedema including prescribing compression. I've seen a couple of such therapists and was happy with their services: mlduk.org.uk/therapists/

[6thplanet in reply to Perido]

Thanks for the info will investigate once I have my stockings sorted.