THE LYMPHOEDEMA SUPPORT NETWORK
Registered charity No. 1018749

The Lymphoedema Support Network (LSN) takes the lead role in educating and supporting other patients with this condition by providing a high standard of information and promoting self-help. Since its inception in 1991, when there was very little information or help available for patients, the LSN has evolved into an independent and influential charity. It is the only national patient-led organisation offering information and support to people with this condition and has a unique understanding of the patients' experience.

The Charity has become the largest information resource for lymphoedema in the UK, producing an on-going series of fact sheets, initially for patients; however, the high standard of this information has lead to healthcare professionals ordering them for use in hospitals and lymphoedema clinics. Two self-help videos produced for patients have also proved to be a valuable resource and teaching aid for healthcare professionals. In addition, the Charity operates an information and support telephone line, produces a quarterly newsletter, maintains a website, promotes the formation of self-help support groups around the country and campaigns at national level for improved standards of care.

The LSN is a membership organisation and receives no statutory funding. The Charity relies solely on membership subscriptions and donations to continue its valuable work.

The work of the LSN

For many patients, this is the first opportunity they have had to speak to someone who understands the condition.

Information about Treatment
General guidance on how and where to obtain treatment is offered. However, the Charity receives numerous telephone calls, letters and emails each year and as a result, we are fully aware of the difficulties experienced by countless patients in obtaining access to treatment. We know that whilst parts of the country have very good lymphoedema clinics, elsewhere, services are limited in scope and are, in effect, rationed. In some areas there are no lymphoedema clinics, or they are only available for patients who have lymphoedema following treatment for cancer; therefore, patients with non-cancer related lymphoedema receive little, or no, help at all.

Fact Sheets
The LSN produces an on-going series of fact sheets covering a wide range of related topics including 'Swollen Feet', 'Coping with Lymphoedema following a Mastectomy or Lumpectomy', 'Skin Care', 'Holidays and Travel', 'What is Cellulitis?' and 'Healthy Eating'. These fact sheets are generally considered to be a 'gold' standard and are written by health care professionals, with additional input from LSN Trustees and members; and are reviewed by the Charity's Chief Medical Advisor before publication.

Fact sheets are free to members and a charge is made to cover publication costs and postage and packing for orders received from lymphoedema clinics and hospitals. Click here to go to clinic order form

Self-Help Videos/DVDs
Two self-help videos have been produced as a joint initiative between the LSN and the Leeds Teaching Hospitals NHS Trust. The videos demonstrate techniques that can help manage and control lymphoedema of the arm and of the leg. Each video covers the self-management aspects of care; including compression garments, skin care, exercise and in particular, highlighting the Simple Lymphatic Drainage (SLD) technique. The videos are now available in DVD format.
Click here for more details.

Newsletter
Members receive the quarterly newsletter 'LymphLine'; an excellent medium with which to reach the entire membership keeping them informed of current issues. Many members have commented that it also helps them to feel less isolated as they are able to relate to the 'patient experience' in the published articles and letters. Click here to go to the recent articles page.

Publicity
LSN Trustees attend various conferences during the year, an essential part of the Charity's work to raise awareness of the condition. The LSN also works hard to initiate publicity within the media. All articles generate a great deal of interest and the number of letters, telephone calls and email enquiries received in the LSN office increases substantially following publication.

Campaign and Advocacy Programme
The LSN is fully committed to raising greater awareness of the condition within the patient population, the medical profession and in Parliament and is now recognised as a strong patient voice representing lymphoedema patients throughout the UK.
The Charity launched a political lobbying campaign in Autumn 2001 and as a direct result, an Adjournment Debate on 'The Treatment of Lymphoedema', was delivered in the Westminster Hall Debating Chamber on 10th December 2002. This was undoubtedly, the first ever formal mention of lymphoedema in a House of Commons debate. Working alongside its successful political campaign, the LSN launched a new campaign to target the Primary Care Trusts (PCTs) in Autumn 2004. The aim is to raise greater awareness of lymphoedema and the lack of equitable services.
Click here to go to the Campaign and Advocacy Programme page.

Support Groups
The LSN encourages the formation of independent lymphoedema support groups throughout the UK. There are currently 65 of these groups; these are usually based at hospitals, hospices or local health centres. At least one representative from each group is a member of the LSN. The support group at the Royal Marsden Hospital, Chelsea holds regular meetings with a guest speaker and all LSN members are welcome to attend.
Click here to go to the Support Groups page.

The Organisation
An Executive Committee of nine trustees, including a nursing advisor, manages the organisation. Six trustees have primary or secondary lymphoedema.
Two administrators, Jenny Richardson and Joan Stokes, together with members of the Executive Committee, handle the day-to-day running of the office. Karen Friett joined the LSN team as Fundraising and Development Manager, in May 2006, supported by a Big Lottery Fund grant.

Current Trustees

Anita Wallace   Chair Barbara Burbidge   Hon. Sec. Jill Babington   Treasurer Denise Hardy   Nursing Advisor Jed Bailey Ros Lam John Robertson Vera Williams Ruth Yeeles

Medical Advisor
The Chief Medical Advisor to the LSN is Professor Peter Mortimer MD., FRCP., Professor of Dermatological Medicine, University of London at St George's Hospital Medical School. Consultant Skin Physician at St George's Hospital, London and the Royal Marsden Hospital, Sutton, Surrey. The UK's leading lymphoedema authority.

Patron
In the summer of 2001 the Charity was pleased to announce that Zoë Wanamaker had agreed to become the LSN's first patron.

Other Organisations
The LSN works closely with the British Lymphology Society (BLS), the national organisation for healthcare professionals involved in the management of lymphoedema and with MLD^UK, the organisation for Manual Lymphatic Drainage therapists. The Charity is also an active member of the LMCA, the umbrella organisation for people with long-term health conditions.

The LSN also has links with many of the major cancer charities including, Breast Cancer Care, Breast Cancer Campaign, Breakthrough Breast Cancer, Macmillan Cancer Support and Cancer Backup.

Membership
The Charity receives no statutory funding and relies solely on membership subscriptions and donations to continue its valuable work. Annual membership is £15. The LSN strives to keep the cost of membership to a minimum in order to help and support as many people with lymphoedema as possible. Click here to go to the membership application page.

Click to return to front page