I think it's good to talk about lymphoedema with someone who is trained and understands, but as you say, Starfish, a bit of activity would also be welcome.
New developments, such as they are, in the treatment of lymphoedema, don't seem to be promulgated very efficiently to health professionals. I think it is very often regarded (literally and metaphorically), even by those who work in the speciality, as a medical backwater where there is little new to be learned.
Consequently, it often seems to be patients, who spend their free time researching this condition, who have more up-to-date knowledge, mostly thanks to the internet, it has to said.
I agree the internet support is brilliant for lymphoedema if nothing else.
The support from the specialist I was referred to apart from sitting and listening was a bit lacking I feel. There is much more info from yourselves and other sources.
Thanks for replying. I have to say that the response was pretty much what I expected in that the Govt says responsibility for lymphoedema services fell to PCTs to organise in accordance with local needs. Which is rubbish because there are people with lymphoedema all over the country and they all need the the same thing: prompt referral and access to properly funded lymphoedema services manned by adequate numbers of fully trained staff. That basic requirement is the same wherever you go! It also leaves PCTs free to 'determine' that local needs are much less acute than they actually are and then provide the minimum they think they can get away with.
Furthermore, if I were a sufferer from primary lymphoedema (what we get after cancer treatment is secondary lymphoedema), I would be infuriated at this response as there is no mention of this condition whatsoever (altho the petition specifically included it). I would be none too thrilled if I had developed secondary lymphoedem as a result of some kind of cancer (cervical, prostate, etc) in the pelvic region either, as the wording implies that only arm lymphoedema arising from breast cancer treatment is currently recognised and treated.
The second half is the usual drivel about research funding.
The only point of interest for me was the mention of lymph node transplants, especially as I read in 'Lymphline' a few months ago that the PCT of a lady who had travelled to Germany for one (up to last year they weren't available at all in the UK; this may still be the case) had refused to contribute any money whatsoever towards the costs she incurred.
I started the petition because I felt that any kind of agitation was better than none and that it might be good to shove the issue under a few flunkies' noses, if only briefly.
I agree, it's hard to say if we are going anywhere with lymphoedema. I feel the internet is our friend here. It's easy for sufferers everywhere to link up and swap information and news about research (which you don't get much of any other way).
As for me, on a day-to-day basis, I try to draw my lymphoedema to the attention of every 'health professional' I meet (whether it's relevant or not!). Most of them aren't very interested, of course....
And if I get any interesting info', I try to pass it along to everyone I can.
I'm a bit of a coward out in public tho', I'm afraid - I can talk about having lymphoedema to people, but I'm not one to expose my sleeves (unless they are my smart black or white ones) as a rule, as I find personal questions about my appearance rather impertinent, to say the least.
Bye for now
I received my e-mail, and read the response, but I'm not sure if we got anywhere with this -- seems to still be reliant on "cancer networks" & PCTs identifying & meeting local needs, including provision of adequate lymphoedema services, resources & training.
What did you think of the response?
For those of you who didn't get the chance to sign the petition (and receive your own e-mail concerning the response), here's the reply:
'The Government is committed to taking positive action to improve services and treatment available for people with lymphoedema.
Whilst there is currently no cure for this distressing condition, it can be managed with appropriate treatment such as a combination of skin care, exercise, massage and compression garments or bandaging. In a few cases, it is possible to help surgically, for example, by transplanting lymph vessels.
The Government is keen to ensure that all patients have equal access to treatment in the NHS and we have provided substantial extra funding to help this to happen. The National Institute for Health and Clinical Excellence (NICE) helps ensure that the most effective new drugs and treatments become available to all patients. In 2002, NICE updated the Improving outcomes in breast cancer guidance and made recommendations on the associated lymphoedema. This guidance recommends that cancer networks should agree guidelines for identification and management of lymphoedema and that a lymphoedema service, staffed by nurses and physiotherapists who have experience in dealing with this condition, should be available for all patients who experience arm swelling or discomfort.
Some people with lymphoedema have experienced difficulties in obtaining treatment for their condition. It is the role of Primary Care Trusts (PCTs) to decide which services to provide for local people, including the management and treatment of lymphoedema. Local health professionals in PCTs are best placed to understand local health needs and commission services to meet them.
The Government has delivered substantial extra investment in the NHS which is helping to deliver real service improvements. Funding of the NHS has increased from £34.7billion in 1997/98 to over £96billion in 2008/09.
The main agency through which the Government supports medical and clinical research is the Medical Research Council (MRC), an independent body funded by the Department for Innovation, Universities and Skills via the Office of Science and Innovation. The MRC is dedicated to improving human health through the best scientific research. While funds are not generally earmarked for particular topics, the MRC always welcomes high quality applications for funding to support research into any aspect of human health. Awards are made according to scientific quality and importance to human health and are judged in open competition with other demands on funding. Further details are available on the MRC’s website at: http://www.mrc.ac.uk.
The Department of Health also funds research for health policy development, clinical and applied health research in the NHS, and meets the costs to NHS organisations of supporting research funded by other bodies, such as research councils and charities. The Department’s research budget for 2008/09 is £825million.
A new system for funding NHS research has been introduced as part of the Government’s health research strategy Best Research for Best Health. This is to make sure that research funding is transparent, sustainable and based on the quality and volume of research undertaken. Under the new system, funding follows research activity, and cross-subsidies between research and other funding streams are being eliminated.
The way research funds are being allocated is based on consistent principles of fairness, transparency and contestability. Some funding will be awarded to the best researchers and the best centres, whilst some will be allocated across the whole of England on a population-based model. The funding model used for the different schemes is dependent on the aims of the individual scheme. More information about the Department’s implementation of the new funding system can be found at: http://www.nihr.ac.uk. '