Hello everyone- I am flagging this up again because not enough signatures have been collected. the number to date stands at less than 1,000 signatures and yet there are 1,288 followers of this forum - a disconnect I feel!!! A lot of what this petition is asking for is stuff that concerns us all for example; slow diagnosis, patchy services, not enough consistent training and provision of medical staff and NO NATIONAL STRATEGY FOR LYMPHOEDEMA in England OR TARIFF. Please, please click on the link at the bottom, sign immediately and spread the word further. I'm sure we can achieve more than 1,000 signatures. The NHS isn't listening to The Lymphology Society's recommendations (or even bothering to reply it seems) so WE HAVE TO MAKE OUR VOICES HEARD SO THAT THIS CAN'T BE IGNORED ANY LONGER.
ORIGINAL POST FROM LSN:
For many years the Lymphoedema Support Network, which is run by lymphoedema patients, and has provided you with this forum, has worked tirelessly to raise the profile of lymphoedema within the patient population and the medical profession, those of you who are our members will have read about our work in our newsletter, LymphLine. We are very well known and respected in the lymphoedema community and have won several awards for our work.
Over the years the LSN has had meetings with department of health officials, politicians, carried out political and healthcare campaigns and each campaign has taken us a few steps forward in our work to ensure that all lymphoedema patients receive appropriate treatment. However without robust evidence based research, the NHS is reluctant to provide treatment for many patients. Therefore, we have also worked together with The British Lymphology Society and The International Lymphoedema Framework to produce the building blocks for this evidence based research to show that lymphoedema treatments do work and are cost effective within the NHS. More recently, we have worked with these organisations to produce a document calling for a National Strategy for Lymphoedema Care in England, which was sent to NHS England. The LSN also had a meeting with the Domain 2 Lead, Dr Martin McShane, but despite all of our hard work, this document was turned down. Nothing is easy in the lymphoedema world!!
Our colleagues in The British Lymphology Society have now launched an online petition, once again calling for NHS England to develop a national strategy for lymphoedema. It currently has 477 signatures, the LSN is fully supportive of this action, we will be flagging it up in our next newsletter and posting it on our Facebook site. With the help and support of patients, we would like to see this number rise dramatically! Whilst there are no guarantees that it will bring about any change at all, we would encourage you to sign this petition and send it to your friends and family, lets support our healthcare professionals and see what patient power can do!
you.38degrees.org.uk/petiti...
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Thanks for re-posting the link. Both myself and my husband have just signed. Does anyone know if there will be anything in the national media about this. That would be so good..... LSN - perhaps you could consider something.....
Hi Naomi -sorry, link (that works) is in my first reply to this post. As soon as posted it realised link was cut short so wrote it in a 'reply' as I don't know how to edit once a post is up. If anyone else could teach me I'd be grateful.
Please support this call for a National Lymphoedema Strategy for England. This particular petition is mainly for England because as of yet, it doesn't have one... 'National strategies for lymphoedema services have already been established in Wales, Northern Ireland and Scotland. (NCAT 2013)' (wording from the petition).
Hi Morganite -what seems to be the problem? Have you got through to the orange' 38 degrees' webpage? If not, try the (full) link in my first reply to this post.
Husband retweeted my tweet - which in 5 mins has led to at least 4 other signatures - he tweets tons about QPR ( football) and has several thousand followers so here's hoping to many more signatures.
Hi my name is Kay I had breast cancer 5 years ago 2 years later I cut my arm and subsequently ended up with septicemia in my arm, ever since , I have suffered with lymphodema and constant infections and pain and ill health issues, but two years ago I had an operation, conducted by Alex Ramsden and Dominic Furness in oxford they took the lymphatic vessels and sewed them into the veins so the blood removes the lymphatic fluid subsequently I have had few infections. They have since done the same procedure to my left hand which did not take to the original op, so hopfully I will have the same results
I have just signed the origanal petition that i somehow missed. Come on guys lets do this we need a vioce and we need to be heard and taken seriously!!!!
I wasn't aware of this petition so a big thank you to all the previous posts for flagging it up and showing the link. I have now signed and hopefully posted it on Facebook.
i think i sign ed the other day cannot see a link in this one
Hi like so many other people, I did not see the first posting for this petition. I have just signed. I am very lucky to receive very good management of my lymphoedema - I live in Warwickshire. I have a lymphoedema nurse who I see regularly but, if I need her, I can contact her in between appointments. This should be the same for everyone nationally.
Since the website changed, the posts do not seem to come through as well as they did before. Does anyone else seem to have this problem? Maybe it is because I do not use facebook or twitter!!
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