About Us/Contact us
The Northern Ireland Lymphoedema Support Group (NILSG) was established in October 2002 to provide information and support for people suffering from lymphoedema and to work towards the availability of better resources for lymphoedema treatment. At that time, information and treatment for the condition available in Northern Ireland was very limited.
As a result of a strategic review of the NILSG carried out in 2011, the name was changed to ‘Lymphoedema Support NI’. It was recommended that ‘Lymphoedema Support NI’ would be a more appealing name and would better reflect the aspirations of the organisation. It would also enable a wider audience to be reached via the website. Revisions to the website will follow in due course.
Members include people who suffer from lymphoedema, their families and friends, doctors, physiotherapists and nurses. Through fundraising and philanthropic donations, we have provided a telephone helpline service and current information about lymphoedema and its treatment, and lobbied for better resources for lymphoedema in Northern Ireland.
Additional achievements to date include:
- Contributing to the policy, planning and health initiatives undertaken by statutory agencies.
- Contributing to Clinical Resource Efficiency Support Team (Crest) Guidelines for the Diagnosis, Assessment and Treatment of Lymphoedema in Northern Ireland. (www.gain-ni.org)
- Producing the patient information booklet 'Lymphoedema - your questions answered' in partnership with the Physiotherapy in N &W Belfast Health Trust when the first (Pilot) Lymphoedema Service in Northern Ireland was set up there in 2003. Lymphoedema Support NI was responsible for all production costs and has, to date, issued 10,000 copies free of charge to patients, healthcare professionals and others throughout Northern Ireland. The booklet was adopted by the CREST Lymphoedema Guidelines Development Group as the patient information booklet for the Northern Ireland Lymphoedema Network (LNNI) and a large print version is available via our website.
- Lobbying to ensure that Complex Decongestive Therapy (CDT) is recognised as the treatment of choice for lymphoedema.
- Providing funding for the training of a Consultant Vascular Suergeon, twelve physiotherapists and two nurses at the world-renowned Földi Clinic for Lymphology in Germany (www.foeldiklinik.de).
- Members appointed as patient representatives on the Board of the Northern Ireland Lymphoedema Network, set up in 2008 to coordinate and focus development of lymphoedema services across the province in accordance with the CREST Guidelines.
- Members acting as patient representatives in various Northern Ireland Cancer Network (NICaN) groups, including the Patient Information Forum, Information Audit Group and Readers Panel.
- Collaborating with and being supported by many individuals and voluntary and statutory organisations, including Marie Curie, Ulster Cancer Foundation, Action Cancer, Cancer Lifeline, The Vascular Surgical Society of Great Britain and Ireland (VSSGBI) and Business in the Community and its associated organisations.
- Membership of the Patient and Client Council, the Northern Ireland Council for Voluntary Action (NICVA), the Long Term Disability Alliance (LTCANI) and the Patient Information Forum (PIF).
Lymphoedema Support NI is committed to its ongoing development as an independent charity working in support of lymphhoedema patients across Northern Ireland. We would like to encourage everyone affected by lymphoedema to attend one of our meetings - where they will be made most welcome.
WHAT LYMPHOEDEMA SUPPORT NI OFFERS:
1. Telephone helpline 028 9066 7570
2. Current information about lymphoedema and its treatment
3. Support Group meeting twice a year.
(For details see website: www.nilsg.co.uk)
If you would you like more information or a free copy of our patients' information booklet, you may contact us at:
Lymphoedema Support NI
PO Box 851
Belfast
BT9 6WY
Tel/Fax: 028 9066 7570
E-mail: info@nilsg.co.uk