Hi
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
What a good idea. It is very obvious that the NHS just doesn't have the funds to provide enough care, and we are way down the pecking order. To start off, I have down-sized from a London property (which I loved - and miss my friends) to a home in Oxfordshire, purely so that I can have a more comfortable life, and can afford to go privately when NHS can't/won't provide. Because of Polio I can't wear compression garments, but no provision is made for that - so I have to pay for M.L.D. which works a treat. Cost is £40 per month as opposed to £80.
What about starting a country-by-county list with good things available - if LSN can't do this, I am very willing to host this on my website aftercancers.com
Just to prove I mean what I say..... see aftercancers.com/lymphoedem...
Thanks Veriterc that is a brilliant idea. I will have a look at your link now. Good idea to plan I think. Might not happen for a couple of years but do need to think of my treatment.
As far as I know Wrexham has amazing lymphedema services from the hospice. Good Luck
Thanks Patsy, do you know if you can access the treatment at the hospice if they did not find cancer.. after surgery to remove pre cancerous cells? Or do all patients with lymphedema get treatment? Many thanks Ellie
My mother had sedentary lymphedema and was user the hospice. Try giving them a call if that part of the world suits you. She died 6 years ago so things might have changed. They were very helpful especially as her GP didn't diagnose LE. I pushed the care home she was in to contact them..... usual story.
I get a very good service in Fife, Scotland and there is a good choice of housing of various sizes. There are a number of places that have good transport (public and private) links to the major cities of Edinburgh and Glasgow. I know there are also good services in Edinburgh.
Not everyone gets good service in Fife, sadly. Lothian and Glasgow will not take on ‘out of area’ referrals.
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
X
Ring or email LSN they will help I think they have a list if you become a member £15 year
Eleanor,
Sorry tohave replied inadequately by email. I have only just seen that you gave 3 areas for preference.
My worry is that budgets are fluid so an area that might be well funded now might not be by the time you have moved.
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..
I live in Eastbourne and asked my GP where I could get support.. so now I have ongoing help for lymphedema. It is free of charge, and supplies and measures for my stockings. I also attend a training college for Podiatry in the town, and they use me and others for training their students in nail cutting and testing for sensation etc in your feet.
Has anyone undergone amputation with lymphedema?
International petition to fight lymphedema ignorance around the world without frontieres to bring awareness and Real treatments.
Hi all just popped in to day Hello.
Daughter born with congenital lymphedema - any advice or information please would be a massive help.
LSN Chair announced as Guardian Charity Trustee of the year winner
