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, only limited information and treatment for the condition was available in Northern Ireland
Not many people know what lymphoedema is, and do not understand the depth of pain, discomfort and embarrassment caused by a swollen arm, leg, neck, face, chest or abdomen. Internal organs can also be affected. Too often it is regarded as a trivial condition, and unfortunately, there is a general lack of knowledge and expertise in giving the correct diagnosis and early treatment, which are essential for the optimum control of the disease
Lymphoedema is much more common than most people realise. It was estimated to affect 2,500 to 3,000 people in Northern Ireland, however this figure has been found to be an underestimate.
NILSG 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.
Since its inception, NILSG has worked in partnership with local healthcare professionals and others in the statutory and voluntary sectors involved in furtherance of our goals.
NILSG committee and members have played a crucial role in informing, influencing and contributing to the policy, planning and health initiatives undertaken by statutory agencies.
In March 2003, the Department of Health and Social Services in Northern Ireland (DHSSPS) initiated a review of lymphoedema services in Northern Ireland, in which members of the NILSG were invited to participate. In September 2004, the findings of this review group were published in a report entitled, “Lymphoedema Services – Report of the Lymphoedema Services Review Group” (Ref: 284/2004). This report concluded that, "In general there is limited provision of lymphoedema education and a lack of knowledge or awareness amongst healthcare professionals, leading to under diagnosis and inappropriate management of patients." ………."The survey of HPSS provision of lymphoedema care, which was commissioned by the Review Group, has revealed a distinct lack of lymphoedema care. There is inequality in service provision, with some areas having limited service and other areas having no service at all. There is also inequality in access to service provision for patients with cancer related lymphoedema and patients with non-cancer related lymphoedema."
Following the Review of Lymphoedema Services, which highlighted a lack of evidence based guidelines, an expert panel, which included patients and healthcare professionals from varied backgrounds, was set up, under the auspices of the Clinical Resource Efficiency Support Team (CREST), to develop Guidelines for the Diagnosis, Assessment and Treatment of Lymphoedema in Northern Ireland. NILSG played an active part in this process to ensure that Complex Decongestive Therapy (CDT) was recognised as the treatment of choice for lymphoedema. The CREST Lymphoedema Guidelines were launched on the 1st February 2008 by the Chief Medical Officer for N. Ireland, Dr. Michael McBride. Copies of the Lymphoedema guidelines are available from the CREST Secretariat, Castle Buildings, Belfast, BT4 3SQ (Tel: 90522351) and online: www.gain-ni.org.
In an effort to increase the provision locally of this much-needed high quality care, the NILSG, in partnership with local Health Trusts, provided funding for the training of ten physiotherapists and two nurses at the world-renowned Földi Clinic for Lymphology in Germany (www.foeldiklinik.de). Complex Decongestive Therapy (CDT), regarded as the treatment of first choice for lymphoedema, is practised very successfully at the Földi Clinic. Over the course of 23 years, over 100,000 patients from all over the world (including patients from Northern Ireland) have been examined and treated at the Földi Clinic under the supervision of Professors Michael and Ethel.
On 12th April 2006, we launched our website and patient information booklet , entitled ‘Lymphoedema - your questions answered’, which was produced in co-operation with the Physiotherapy Department of N&W Belfast HSS Trust, when they set up the first (Pilot) Lymphoedema Service in Northern Ireland. The NILSG members, including patients and healthcare professionals, together with patients in the N & W Belfast area and Cancer Lifeline, were widely consulted and involved throughout the process. The NILSG was responsible for all production costs, and to date, have issued 10,000 copies free of charge to patients and healthcare professionals in Northern Ireland. This booklet was adopted at CREST as the patient information leaflet for the N. Ireland Lymphoedema Network (LNNI). A revised edition was published in May 2009, and a large print version is available in PDF format via our website.
Several NILSG members were appointed as patient representatives to the Board of the Northern Ireland Lymphoedema Network (LNNI), when it was launched in February 2008 to coordinate and focus development of lymphoedema services across the province.
NILSG members are also patient representatives in various Northern Ireland Cancer Network (NICaN) groups, including the Patient Information Audit Group and the Patient Information Forum, which is developing a standard for patient information within the Cancer Services Framework for Cancer Prevention, Treatment and Care. Our information booklet, ‘Lymphoedema - your questions answered’, was submitted for audit to the NICaN Patient Information Audit Group, the feedback from which was very positive.
The NILSG is a member of The Long Term Disability Alliance (LTCANI), The Northern Ireland Council for Voluntary Action (NICVA) and the International Society of Lymphology (ISL), and has collaborated with and been supported by many individuals and voluntary and statutory organisations, including 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 companies.
The NILSG is committed to its ongoing development as an independent patient-led support group for patients across Northern Ireland, and we would like to encourage everyone affected by lymphoedema to join our support group, where they will be made most welcome.
WHAT NILSG 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:
Northern Ireland Lymphoedema Support Group (NILSG)
PO Box 851
Belfast
BT9 6WY
Tel/Fax: 028 9066 7570
E-mail: info@nilsg.co.uk