THE LYMPHOEDEMA SUPPORT NETWORK
Registered charity No. 1193800
‘The Lymphoedema Support Network (LSN) is a registered charity and the UK’s national patient support charity for those living with or affected by lymphoedema.’
The Lymphoedema Support Network takes the lead role in supporting and empowering people with lymphoedema 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. As a charity run by people with lymphoedema, the LSN has a real understanding of the lived experience of the condition which it uses to inform its work.
The Charity has become the largest information resource for lymphoedema in the UK, producing an ongoing series of fact sheets, for those living with lymphoedema ; however, the high standard of this information has led to healthcare professionals ordering them for use in hospitals and lymphoedema clinics. In addition to producing gold standard information in a variety of formats, the LSN also provides online and telephone support, active social media and online presence, a quarterly newsletter, encourages the formation of local support groups and works with others to promote equity of care for all those with lymphoedema and increased research. The LSN has also commissioned and worked with British Medical Journal Learning to produce two online learning modules about lymphoedema aimed at doctors and other health care professionals to assist them in better supporting those in their care living with the condition.
The LSN has been awarded the PIF TICK quality mark for its health information. The PIF TICK is the only UK-wide quality mark for health information. It is run by the Patient Information Forum (PIF) on a non-profit basis. To achieve the quality mark, organisations have to demonstrate that their processes and systems produce information that is accurate, impartial, balanced, evidence-based, accessible and well-written.
While we aim to support all adults and children in the UK with lymphoedema, 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 09.30 -16.30, Monday – Friday.
‘For many patients, this is the first opportunity they have had to speak to someone who understands the condition.’
Information About Clinics and 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 and Legs’, ‘Upper Limb Lymphoedema’, ‘Skin Care’, ‘Holidays and Travel’, ‘What is Cellulitis?’, and ‘Maintaining a Healthy Weight in Lymphoedema’. 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 the clinic order form.
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 From Our Newsletter page.
This publication is made possible by an educational grant from medi UK.
Self-Management Online Videos
A series of online self-management videos, initially funded by Welsh Government, have been made by Lymphoedema Network Wales, the group of health care professionals leading lymphoedema care in Wales. The videos are informative and practical, aimed at giving information directly to those living with lymphoedema, they also include first-hand experiences from people living with the condition. Click here for more details.
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.
The Organisation
An Executive Committee of ten Trustees, including a Nurse Advisor, manages the organisation. Eight 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 took up the post of Chief Executive. For more information on our team go to the Meet the Team page.
Medical Advisor
The founder of the LSN was Professor Peter Mortimer MD, FRCP, who was our Chief Medical Advisor until his retirement in October 2023. We are delighted that Dr Vaughan Keeley has taken over the postition.
Multi-Disciplinary Team of Advisors
The members of the advisory team are Dr Vaughan Keeley, Consultant Physician specialising in Lymphoedema; Garry Cooper-Stanton, Lymphoedema Nurse Specialist; Professor Dominic Furniss, Professor of Plastic and Reconstructive Surgery; Dr Kristiana Gordon, Consultant in Dermatology and Lymphovascular Medicine, Lymphoedema Clinical Lead; Dr Andrew Hughes, Consultant in Palliative Medicine; Dr Catherine O’Leary, portfolio GP, Oxfordshire; Mr Alex Munnoch, Consultant Plastic Surgeon specialising in liposuction; Mr Kelvin Ramsey, Consultant Plastic and Reconstructive Surgeon.
Patron
In the summer of 2001 the Charity was pleased to announce that Zoë Wanamaker CBE had agreed to become the LSN’s first patron and in November 2017 we were delighted that Dame Judi Dench, CH, DBE became our Honorary 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 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 Now, Macmillan Cancer Support and Cancerbackup.
Corporate Sponsors
The LSN is very grateful for the continued support from its Corporate Sponsors:
BSN medical Ltd
Compression Therapy UK
Cosyfeet
Haddenham Healthcare Ltd
Huntleigh
Juzo UK Ltd
L&R
SIGVARIS GROUP Britain