THE LYMPHOEDEMA SUPPORT NETWORK
Registered charity No. 1018749
The Lymphoedema Support Network is a registered charity and the UK's national patient support organisation for lymphoedema.
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 DVDs 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 has been awarded the Information Standard quality mark for its fact sheets, newsletter and website. The Information Standard scheme has been developed by the Department of Health to help the public identify trustworthy health and social care information. To achieve the standard, organisations have to demonstrate that their processes and systems produce information that is accurate, impartial, balanced, evidence-based, accessible and well-written.
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.
Introduction to our work
The LSN's mission statement:
"The Lymphoedema Support Network represents, supports and empowers people
affected by lymphoedema, promotes awareness of the condition and campaigns for
appropriate, equitable treatment for all."
The LSN's aims are:
- To provide support for people with lymphoedema
- To provide information about lymphoedema and its treatment
- To work towards the availability of better national resources for lymphoedema treatment
- To maintain contact with healthcare professionals working in lymphoedema management
- To promote a network of support groups throughout the UK for people with lymphoedema
The LSN provides information and support to people with lymphoedema due to any cause and those 'at risk' of developing the condition. An information and support telephone line is available between 9.30 - 4.30, Monday - Friday.
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.
The LSN produces an on-going series of fact sheets covering a wide range of related topics including 'Swollen Feet and Legs', 'Coping with Lymphoedema following a Mastectomy or Lumpectomy', 'Skin Care', 'Holidays and Travel', 'What is Cellulitis?' and 'Healthy Eating'. The information has been produced and verified by accepted experts in their field, with additional input from LSN Trustees and members, and is reviewed by the Charity's Chief Medical Advisor prior to publication. The fact sheets reflect current best practice and evidence based research where appropriate; they have been designed to assist in managing the condition and are not intended to replace advice received from healthcare practitioners.
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
Two self-management DVDs have been produced as a joint initiative between the LSN and the Leeds Teaching Hospitals NHS Trust. The DVDs demonstrate techniques that can help manage and control lymphoedema of the arm and of the leg. Each DVD covers the self-management aspects of care; including compression garments, skin care, exercise and in particular, highlighting the Simple Lymphatic Drainage (SLD) technique.
Click here for more details.
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.
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 recognised as a strong patient voice representing lymphoedema patients throughout the UK.
Although our priority at present is raising awareness among healthcare professionals, a record of our previous campaigning and advocacy work can be viewed on the Campaign and Advocacy Programme page.
The LSN encourages the formation of independent lymphoedema support groups throughout the UK. There are currently 61 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.
An Executive Committee of eleven trustees, including a nursing advisor, manages the organisation. Nine trustees have primary or secondary lymphoedema.
Administrators, Jenny Richardson and Samantha Oswald, together with members of the Executive Committee, currently 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 three year Big Lottery Fund grant. On completion of this project, Karen has taken up the post of Chief Executive.
|Anita Wallace ||Chair|
|Linda Patel ||Hon. Sec.|
|Jill Babington ||Treasurer|
|Denise Hardy ||Nursing Advisor|
|Lindsey Summerhill |
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.
Multi-disciplinary Team of Advisors
The members of the advisory team are Dr Vaughan Keeley, Consultant in Palliative Medicine; Dr Andrew Hughes, Consultant in Palliative Medicine; Mr Alex Munnoch, Consultant Plastic Surgeon specialising in liposuction; Mr Stan Kholhart, Breast Surgeon; Professor Christine Moffatt, International Lymphoedema Framework; Dr Jacquelyne Todd, Physiotherapist Consultant – Lymphoedema; Mr Matthew Waltham, Senior Lecturer and Honorary Consultant Vascular Surgeon.
In the summer of 2001 the Charity was pleased to announce that Zoë Wanamaker CBE had agreed to become the LSN's first patron.
The LSN is a full research partner in the International Lymphoedema Framework which has produced an international consensus document on Best Practice for the Management of Lymphoedema within a Primary Care Trust.
The LSN also works closely with the British Lymphology Society (BLS), the national organisation for healthcare professionals involved in the management of lymphoedema and with MLDUK, the organisation for Manual Lymphatic Drainage therapists. The Charity is also an active member of National Voices, 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 Cancerbackup.
The LSN is very grateful for the continued support from its Corporate Sponsors:
3M Health Care UK
BSN medical Ltd
Haddenham Healthcare Ltd
Juzo UK Ltd
Sigvaris Britain Ltd
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.
Revised February 2013.