Not quite so new now... update - feedback to GP

[DeborahS32]

Hello there, I thought there might be others in a similar position to me, ie still finding their way through the maze that is getting appropriate diagnosis and treatment of lymphoedema through NHS services.

I only recently realised (through a really helpful vascular consultant appointment) that I have lymphoedema and what it is - though with hindsight believe that earliest symptom was 2011; also that all the obvious possible causes have been ruled out (ie not vascular, not heart related, not kidney related, no cancer history). A shame I didn't realise that earlier, as have been treated for vascular insufficiency in lower leg for a year, when actually that cause had already been ruled out then and the lymphoedema actually affects my whole leg, groin and buttock on same side.

Through reading everything on LSM website, lots on here, asking you lot for advice, and reading whatever else I could find online, I've become a much more educated and expert patient. I was able to use my GP appointment yesterday well - went along having extracted from my patient records a summary of my history with this, showing clearly that I have been incorrectly treated for the past year, with several missed and bungled opportunities for correct treatment that could perhaps have prevented the massive decline in past 6 months (affected leg now 60% bigger than the other; was much much better than this till the autumn; first time in the two years I've had this that anyone has actually examined and measured whole leg and whole area).

Anyway, moving on from here, had a really helpful and supportive meeting with GP, she was very willing to accept that the practice isn't sufficiently familiar with identifying and treating lymphoedema, and happily accepted the LSN and other info I passed on to her, which she will disseminate in their next practice meeting (next week as it happens).

Plus she's written a supportive request for referral to St Georges. Will have to wait and see what happens.

In the meantime, I can't thank you enough for all the info and support. Don't know where I would have been without it!

[Whitesugar]

Do you have a local lymphoedema service your GP can send you to? St Georges only accept referrals from a lymphoedema clinic or a consultant (see their website). It would be easier for you to be treated locally as with such a large excess leg volume you may need to be seen daily or at least several times a week for several weeks if you need intensive treatment. Of course, if you are in the St Georges catchment area there will be no problem with a referral.

[DeborahS32 in reply to Whitesugar]

Hi there, and thanks for this.

The local hospital lymph service is for post cancer patients only. The community clinic is nurse-led and can't prescribe. Nor do they offer the kind of intensive treatment you describe. Hence my GP request to local vascular consultant to refer to St Georges, as there isn't anything locally that can provide diagnostic tests and proper treatment.

Luckily for me my son lives in south London, so if I do get the referral, I can be available for whatever they are able to provide.

Shouldn't be like this though - my lymphoedema is lymphoedema just as post-cancer lymphoedema is. Shouldn't need to jump through pointless hoops like this to get a remedy for something that I suspect is a result of medical treatment just as much as post-cancer lymph is (am feeling a bit raw today, partly the heat and partly the prospect of a fight to get what I need).

[Whitesugar in reply to DeborahS32]

The inequality across the country is unacceptable. When you feel strong enough it would be worth writing to your local Clinical Commissioning Group (CCG) telling them you need treatment, with the support of your GP and Vascular Consultant. Also your MP should know. I am sure the Lymphoedema Support Network (LSN) would help you with wording for letters. I hope you are able to be seen somewhere soon.

[DeborahS32 in reply to Whitesugar]

Thanks, I agree with you. Life's a bit full on a the moment, but when I get the energy I will definitely be pursuing this. Am waiting to see what happens with my request for a referral.

[Poppet21]

Hi there. I have secondary lympodena and have had cellulitis 3 times in two months. Although I have had really good treatment from the lympodena clinic my Doctor and cancer nurse the info they have given me has all been slightly different. I think I have sorted it for Cellulitis take 14 days antibiotics another 14 days if still feeling unwell and if u have cellulitis more than 3 times at least a years penicillins. I seem to be doing ok but it’s been a struggle. Good luck.

[DeborahS32 in reply to Poppet21]

Thanks for this. Sorry to hear that you've had such inconsistent advice. It's hard going isn't it, and I haven't had the awful stuff of going through cancer beforehand. Good luck with yours anyway! and thank goodness for the advice here and on the LSN website.

[lovesradio]

So glad for you that you are finally finding a path out of the maze, good luck with future appointments x

[DeborahS32]

Well I've got all fingers and toes crossed at the moment, and am just hoping consultant this end agrees to make referral and the one the other end agrees to accept it. Thanks so much for taking the time to reply.