The future
Clearly, it is important that we provide the government with the best possible information to justify the case for quality lymphoedema services.We have begun the process in evaluating where we are now. An article has recently been accepted by the Quarterly Journal of Medicine, which concentrates on our previous study that outlined the size of the problem and lack of care available to patients (LymphLine, Winter 2001).We expect this process to continue as more evidence is made available to justify the need for more co-ordinated and better services to patients.We look forward to next year as we start the service in Wandsworth and see what can be done with collaboration and support from patients, professionals and industry.

Dr Liam Fox, Shadow Secretary of State for Health, tabled an Early Day Motion* (EDM) in the House of Commons in March; this action followed several pertinent written questions tabled by Shadow Health Minister, Tim Loughton, MP for East Worthing and Shoreham. On 10th March 2003 Dr Liam Fox tabled the following motion:

"That this House notes that there are around 100,000 men, women and children in this country who suffer from lymphoedema and its frequent associate condition, cellulitis, and that it particularly affects women who have had breast cancer and suffered consequent damage to their lymphatic system; congratulates the Lymphoedema Support Network (LSN) and the British Lymphoedema Society in its commitment and tireless hard work in advising and helping people with lymphoedema, with the LSN receiving over 2,000 referrals for advice each year, yet which receives no statutory funding; is deeply concerned that the Government has not committed any resources to lymphoedema prevention campaigns, and has failed to issue any specific guidance to hospital trusts and PCTs for the provision of services to lymphoedema sufferers and that there are no specialist lymphological consultants employed in any hospital or university in this country; and urges the Government to take the provision for the prevention and treatment much more seriously than it currently does"

LSN Chair, Anita Wallace, and the Charity's Chief Medical Advisor, Professor Peter Mortimer, met with Dr Fox at the House of Commons last year. This meeting provided an opportunity to outline the LSN's concerns for people with lymphoedema, including the lack of NHS service provision for many patients. They were also able to highlight many of the difficulties experienced by both patients and lymphoedema practitioners. Anita commented, "It is very encouraging that the Senior Opposition Health spokesman has supported the LSN lobbying campaign by tabling an Early Day Motion, thereby further raising the awareness of lymphoedema within Parliament and that he recognises the vital role of the LSN. However, I remain concerned that any Government response is usually centred on the breast cancer patient. Consideration must also be given to the patients who develop lymphoedema due to treatment for other cancers, including gynaecological, prostate and melanoma, as well as the thousands of patients suffering from non cancer related lymphoedema".

The LSN is very much aware of the huge demands on NHS resources. However, it is undoubtedly far more cost effective to diagnose and treat lymphoedema patients as soon as possible, thus avoiding the high costs of hospitalisation as a result of infection and neglect. The Trustees of the LSN therefore remain committed to enlisting the support of all MP's and opinion formers generally to ensure that all people with lymphoedema receive equitable access to information, education and a suitable level of care, whatever the cause.

This is an ideal opportunity for members and supporters of LSN to once again play a vital role in this campaign, by encouraging MP's to add their signatures to the Early Day Motion. Please complete and send the letter enclosed in this issue of LymphLine to your local MP, providing their name is not already on the list below. The name of your MP can be obtained from your local library or town hall. Please support the LSN by sending off your letters as soon as possible.

List of signatures - Lymphoedema EDM
	Baldry Tony Baron John Beggs Roy Brazier Julian Burns Simon Calton Patsy Campbell Gregory Dodds Nigel Doughty Sue Evans Nigel Flight Howard Fox Liam Garnier Edward George Andrew Gillan Cheryl Gray James Grayling Chris Hammond Philip Heald Oliver Hermon Sylvia Hunter Andrew Jones Nigel Laing Eleanor		Lewis Julian Loughton Tim Marsden Paul McIntosh Anne Mercer Patrick Murrison Andrew O'Brien Stephen Page Richard Pugh John Roe Marion Rosindell Andrew Sayeed Jonathan Selous Andrew Smyth Martin Spelman Caroline Spink Bob Swayne Desmond Tyler Paul Watkinson Angela Widdecombe Ann Wiggin Bill Wilshire David Winterton Ann

*An Early Day Motion (EDM) is another way of drawing attention within Parliament to an issue and to elicit the support for it by the means of inviting other MP’s to add their signatures to the motion.

As a culmination of the parliamentary lobbying campaign launched by the LSN Trustees in Autumn 2001 the charity was contacted by Tom Levitt, MP for High Peak, Derbyshire, who expressed his willingness to support the LSN in their campaign. Mr Levitt had been initially introduced to the LSN by member Mrs. Brignall who had sent him her LSN campaign letter.

At an initial thorough briefing by the LSN Chair, Anita Wallace highlighted the gross lack of funding for research and treatment, together with the appalling lack of knowledge by far too many medical professionals and the countless difficulties experienced by both lymphoedema patients and practitioners. Anita was delighted when Mr Levitt suggested he could help the LSN by applying for an Adjournment Debate on the 'Treatment of Lymphoedema'. At a subsequent meeting, Anita was supported by Professor Peter Mortimer who was able to expand on the medical perspective. "All we had to do now was to hope Mr. Levitt was successful in his application" said Anita, "we were confident that our cause was in the hands of a worthy champion, whose own views had been considerably sharpened by his unsatisfactory experiences when suffering from severe cellulitis".

Anita went on to say that confirmation of the date of the debate generated great excitement, and that she and three Trustees who had played an active role in the campaign, namely Barbara Burbidge, Kathleen Harvey and Ruth Yeeles, were all delighted to join Mr Levitt at the House for a pre-debate lunch. Later they were joined by a small group of supporters, including Professor Peter Mortimer and Professor Christine Moffatt.

Mr. Levitt, an accomplished parliamentarian, presented a compelling picture of the problems that are so familiar to all of us. He paid particular attention to his own hospitalisation on two occasions when suffering from severe attacks of cellulitis which caused one of his legs to swell alarmingly and prevented him from walking for ten days. He also said that apart from intravenous antibiotics, the only treatment he received was to have his leg elevated to help drainage. He was not given any massage or physiotherapy, he said, and there was no advice provided on how to prevent further attacks. He pointedly added that the word lymphoedema was never mentioned once!

Ranging over the many key aspects concerning the management of lymphoedema, including a clear explanation of what the condition is and the simple and effective ways in which it can be controlled, Tom Levitt said that his personal experience as a patient, combined with his knowledge of the lack of services available for non cancer related patients in his area and with only two lymphoedema clinics in the whole of Derbyshire, had given him a much better appreciation of the problems confronting the LSN.

Mr. Levitt concluded by putting the following seven specific questions to the Minister replying to the debate, Mr. David Lammy, Under Secretary of State for Health and the MP for Tottenham:-

• Why are statistics related to lymphoedema not collated centrally and not maintained by the NHS?
• Why is there no official NHS guidance on the treatment of lymphoedema?
• What plans does the Minister have to ensure that lymphoedema has a higher profile in terms of training and academic research, perhaps through the creation of a Chair of Lymphology at a major training institution?
• Will lymphoedema be specifically included in the preparations for the national service framework for long-term conditions - and if not, why not?
• Is the Minister satisfied that the onus for the care of lymphoedema patients appears to rest on nurses and the charitable and voluntary sectors rather than GPs in the NHS?
• Do patients receive specific guidance to access nursing services?
• How can additional funding be provided not only for the treatment of lymphoedema but for advice? The Lymphoedema Support Network itself could be funded - it receives some 2000 referrals for advice each year but has no statutory funding. The numbers of referrals are a fraction of the estimated 100,000 who suffer from the condition each year.

Whilst Mr. Lammy's response* to these and other points tended to be somewhat non-committal it was, on balance, sympathetic and later Mr. Lammy very kindly provided some direction in taking the campaign forward. There have been other 'knock on' effects from the campaign already. Mr. Levitt took part in a radio interview in the Derbyshire area and BBC Leeds have made a short film on lymphoedema to be shown in the Leeds area in February on a Sunday lunchtime as a part of a new political programme - which is all very encouraging since such activity continues to raise the profile of lymphoedema.

"All in all" says Anita, "I am very much encouraged by our successful campaign".

It certainly says a lot about the growing professionalism of the LSN that they were able to arrange for what was undoubtedly the first ever, formal mention of lymphoedema in a House of Commons debate! And, Anita adds "It is wonderful that we were able to plan it in such a way as to actively involve our members in the campaign."

* Lymphline regrets that the lack of space precludes the inclusion of the official transcript of the debate. This can be viewed online however, at www.publications.parliament.uk

The LSN Trustees would like to express their thanks to member and professional lobbyist Clare Cox, for her help in the establishment of the strategy for the campaign.

ABOUT TOM LEVITT Tom Levitt was elected MP for High Peak in 1997 after 14 years service at all levels of local government. He is Parliamentary Private Secretary to Barbara Roche MP and has worked with her since 1999, currently in the Office of the Deputy Prime Minister and formerly in the Home Office. Once in Parliament, Mr. Levitt was soon appointed to the prestigious Standards and Privileges Committee. This committee is responsible for monitoring standards of MPs' professional conduct. He was involved in the investigations into such well-known cases as Neil Hamilton, Keith Vaz, Peter Mandelson and Geoffrey Robinson. He is also an officer in three All Party Groups. These are forums in which MPs from different parties, but with common interests, can meet with professionals in those fields to discuss matters of common concern. These include the voluntary sector and charities.