Areas of UK that have excellent support and treatment services?

6 months ago•13 Replies

My husband is due to retire in the next year and we plan to move to a bungalow. I would like to move to an area that has good support for patients who have lymphedema and of course treatment.

From your experience can you tell me the better areas please? Scotland? North Wales and Yorkshire are areas we are interested in.

Any

Or who to contact. As there is little in England.

Many thanks Ellie x

13 Replies

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ssc123

6 months ago

Hi Eleanor, what a great idea and experiences are certainly a postcode lottery. It may be worth mentioning if you have primary or secondary lymphoedema and any specific treatments you have in mind.

I live in Warwickshire and no hospices here will help with the management of primary lymphoedema but I understand there are a couple that will help with secondary. Unfortunately I can not rate these. We travel (1 hour) to St Giles hospice in Lichfield which I could highly recommend. They do MLD for my son and daughter and advise on compression etc. They are really lovely and my children both enjoy going.

I’m not sure if you are looking for a consultant led service. Obviously St George’s in London are very well known but I don’t believe they deal with adults that are out of area. I met another consultant at a lymphaletics meeting (activity day for children with lymphoedema) that works closely with St George’s but is based more Northern (Sheffield I think). Unfortunately I can not recall his name but maybe someone else can help with that? Also the nurse that organises the lymphaletics is based in Sheffield called Jacquline Todd. She is very active in promoting awareness regarding lymphoedema and explores lots of management techniques. This may mean that the services there are good but unfortunately I can not rate these first hand. Hopefully someone else can help with that too.

Good luck

eleanorshutie

in reply to Aprille

6 months ago

Hi Aprille

Sorry for late reply. Yes I think it's a shame treatment is a lottery, especially when you suffer pain and discomfort. This government should be ashamed that only people who can afford treatment receive relief and treatment. It should be on the NHS... it is a national disgrace. I still haven't been able to get a referral to lymphedema/ vascular consultant. I'm still under a Vascular consultant who will not refer me.. he wants to remove the veins in my leg. I would like a reason why I have it and what stage I have it. So I can provide evidence so I can hopefully receive financial help to see a Lymphodema therapist in my local town. It makes such a difference but not everyone can afford £65 for each treatment. You really need 2 sessions each week. So you suffer pain and swelling in silence because you don't know what else to do. You wear compression garments and exercise as much as you can and work fulltime. I'm ashamed that this government makes us suffer pain... because we can't afford treatment. I don't know if it will work but would it help if we start lobbying our local Mps? So wherever you live and whatever your income we are all entitled to see a Lymphodema Consultant and receive relevant treatment to relieve pain. Over the weekend I'm going to lobby Anne Milton my local MP - if we all lobbied our MP.. tweeted our concerns, follow on Facebook maybe just maybe we will all receive treatment quickly to prevent the disease moving to the next stage.. fingers crossed 🍀let's hope so..