Breige's Story

HOW I CAME TO SET UP THE NORTHERN IRELAND LYMPHOEDEMA SUPPORT GROUP 
(Written at the request of NICaN)
 
In 1980, a malignant melanoma was diagnosed in my left leg. The tumour, together with the lymph glands in my groin, was removed surgically and three weeks later I was discharged from hospital. For a 38-year-old mother of four small children (aged 7, 5, 3, 1) this was a devastating experience for all of us.
 
The cancer treatment had apparently been successful, but shortly afterwards, lymphoedema developed in my leg. This is a serious, painful and debilitating condition that can arise as a result of surgery (e.g., removal of the lymph nodes, or as a side effect of radiation treatment for cancer). Lymphoedema is a swelling that occurs due to a failure of the lymphatic system. 
 
My lymphoedema was treated by physiotherapy, which consisted of wearing a made-to-measure compression stocking on my swollen leg. Twice a year for the next sixteen years, this garment was replaced after re-measurement. During that time, I suffered frequent episodes of redness and burning pain in my leg, accompanied by flu-like symptoms, which I later learned was due to cellulitis. I was so disheartened by this prolonged and progressive deterioration of my leg that I was motivated to search for information about lymphoedema and its management. 
 
In 1984, I learned about intermittent Compression Pumps (ICP), which were/are used to treat lymphoedema. Unaware of any danger, I used it on my leg at home. Only later did I become aware of the untold damage it had caused. In 1991 - eleven years after my surgery - I consulted a lymphoedema specialist in London, who prescribed an off-the-shelf compression stocking, but nothing more!  Next, in 1996, I visited a vascular surgeon in Munich. Knowing that he was performing microsurgery for lymphoedema, I hoped this might be the answer. He discussed with my husband, who is a Consultant Cardiac Surgeon, and myself, an operation to by-pass the obstructed lymph channels in my groin, which would, hopefully, reduce the lymphoedema in my leg.
 
After returning from Germany, we decided to seek a second opinion on the surgery offered. On the advice of a Consultant Dermatologist practicing in Queensland, Australia, where there is a high incidence of malignant melanoma, my husband telephoned and spoke with an Australian doctor, who was an authority on lymphoedema. His strong advice was against this surgery because of the risk that it could make matters much worse. Instead, he recommended that I go to the Földi Clinic for Lymphology (www.foeldiklinik.de) in Germany for specialist treatment – Complex Decongestive Therapy (CDT). He also kindly sent me an information booklet he had written, entitled:  ‘Information about Lymphoedema for Patients’, 5th Edition, May 1995. This most helpful text was a revelation to me. For the first time in sixteen years, I was given information aimed at lymphoedema sufferers, explaining the condition and how it should be managed. Lymphoedema is a chronic condition, at present incurable, but with the correct treatment (CDT), it can be kept under control. However, left untreated, complications develop, such as fibrosis (tissue hardening), infection (cellulitis) and increased swelling.
 
Complex Decongestive Therapy (CDT)
CDT is virtually free from side effects and is the first choice treatment for lymphoedema. The precisely coordinated interaction of Manual Lymphatic Drainage (MLD), Multi-layer Bandaging, Skin and Nail care and remedial exercise is effectively combined as CDT for patients with lymphoedema. Patients are treated in two phases:
 
Phase 1. This Intensive phase aims to increase lymph flow, reduce fibrosis, if present, and prevent complications. It must include all four elements: Manual Lymphatic Drainage, Multi-layer Bandaging, Skin and Nail Care, Remedial Exercise. 
This Phase requires daily treatment, delivered by specialist physiotherapists, of about 90 minutes, lasting a minimum of two weeks for early stage lymphoedema, but up to six weeks for more advanced disease. It is essential that lymphoedema be treated at the earliest possible stage, when it is soft and most easily managed. 
 
Phase 2. This Maintenance Phase aims to maintain and further improve the treatment outcome of Phase 1. Compression garments are worn, self-treatment is continued and, as required, further MLD and Intensive Phase CDT.
 
My Personal experience of CDT
Initially, I tried unsuccessfully, to source CDT treatment close to home. In November 1996, I again consulted the lymphoedema specialist in London (seen previously in 1991) for a second opinion on the treatment recommended at the Földi Clinic for Lymphology. He informed me that the treatment regime at the Földi Clinic was similar to that employed at his clinic. However, all further action had to be deferred because I was admitted to hospital with a serious leg infection (cellulitis). This was treated with antibiotics, and because areas of inflammation remained in my upper leg and hip, long-term antibiotics were prescribed, together with a four-week course of CDT. However, the inflamed areas remained unchanged and my compression stocking continued to hurt me. Further hospital treatment failed to resolve these problems. 
 
Problems unresolved, I consulted the lymphoedea specialist in London again (April1997). He found that the stocking was causing pain at the top of my leg because the pneumatic compression therapy (ICP pump) had pushed lymphatic fluid up to this point, thereby contributing to the chronic inflammation and fibrosis in my upper leg and hip. I now understood the warnings in the Australian doctor’s information booklet about the dangers of compression pumps and the devastating consequences they can have. The compression stocking was ill fitting because a band of fibrosis had developed in my upper leg. Even worse, the lymphoedema had progressed to my hip, rendering it infinitely more difficult to treat and control. The London lymphoedema specialist promised to try to locate a suitably trained physiotherapist in Northern Ireland to treat me. Failing that, he would arrange a three-week course of MLD with a therapist in London. However, I heard nothing further. I found, for myself, a local physiotherapist, specialising in lymphoedema, but I could not be treated because the volume increase of my affected leg was less that 20% greater than the volume of the unaffected leg! After all this wasted effort, finally, in 1997, I went for a consultation to the Földi Clinic in Germany, earlier recommended by the Australian doctor. In January 1998, my Hospital Consultant in Belfast referred me to the Földi Clinic for a four-week course of treatment.
 
After eighteen years of searching, at last I received the first effective treatment for my lymphoedema! Antibiotics were discontinued and I received four weeks of Complex Decongestive Therapy at the clinic. This was most successful and I was prescribed for the first time an effective made-to-measure compression stocking, which was now comfortable to wear. 
 
The experience of this high quality treatment gave me the impetus to do something to upgrade the inadequate treatment I, and so many other lymphoedema patients in Northern Ireland, had encountered. The improvement resulting from this excellent care motivated me (in 2001) to write repeatedly to the Chief Medical Officer and others in positions of authority, to increases awareness of this condition and the need for better treatment to be made accessible to local patients with lymphoedema. At that time, information and treatment for lymphoedema patients in Northern Ireland was very limited. 
 
An opportunity to improve treatment here arose in 2001, when a generous benefactor agreed to support my endeavours financially. This enabled me to arrange funding for two physiotherapists to attend a three-week MLD/CDT Certification Training Course at the Földi
Clinic in June 2002.
 
Formation of the Northern Ireland Lymphoedema Support Group (NILSG)
Together with another patient, sadly now deceased, and one of these physiotherapists and I set up the Northern Ireland Lymphoedema Support Group (NILSG) in October 2002. Our aims and objectives were (and still are) to:
 
Provide support for people with lymphoedema
Provide information about lymphoedemaandits treatment
Work towards increasing the resources available for lymphoedema treatment
Work in partnership with local healthcare professionals and others involved
 
Following discussions with me in November 2002, the then President of the Society of Vascular Surgeons of Great Britain and Ireland and a Consultant Vascular Surgeon at the Royal Victoria Hospital, Belfast, invited Professor Ethel Földi, Medical Director of the Földi Clinic and eminent Lymphologist, to be a guest lecturer at the Annual Scientific Meeting of the Society at the Waterfront Hall in Belfast. This lecture was a comprehensive review of lymphoedema and its treatment. Professor Földi also gave a presentation to the members and guests of NILSG. Her visit to Belfast was sponsored and fully funded by NILSG.
 
NILSG became a registered charity in 2003. Through fundraising and philanthropic donations, we provide a telephone helpline (028 90667570) and information about lymphoedema and its treatment. On 12th April 2006, we launched our website (www.nilsg.co.uk) and our patient information booklet entitled: ‘Lymphoedema   your questions answered’, produced in co-operation with the Physiotherapy Department of North & West Belfast HSS Trust. NILSG paid all production costs of this booklet, and to date, we have issued 10.000 free copies to patients and healthcare professionals, including every G.P. in Northern Ireland. The third edition is currently being developed and a large print version is available in PDF format via our website. 
 
The organisation has, since its inception, worked in partnership with local healthcare professionals and others in the statutory and voluntary sectors. In partnership with local Health Trusts and Marie Curie Cancer Care, we have provided funding for ten physiotherapists, two nurses and a consultant vascular surgeon to attend a three-week MLD/CDT Certification Training Course at the Földi Clinic. In addition, we have provided funding for five of these physiotherapists to attend Advanced and Review courses at the Földi Clinic. We also funded their attendance at the meeting of the International Society of Lymphology (ISL) in Freiburg, Germany in 2003.
 
NILSG has played a central role in informing, influencing and contributing to the policy, planning and health initiatives undertaken by statutory agencies for lymphoedema management. Patients and healthcare professionals from NILSG were members of the Review Group. Following this review of lymphoedema services, which highlighted a lack of evidence based guidelines, an expert panel, which included patients and healthcare professionals from varied backgrounds, including NILSG, 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 first choice for lymphoedema. Our information booklet entitled, ‘Lymphoedema   your questions answered’, was adopted at CREST as the patient information leaflet for Lymphoedema Network Northern Ireland (LNNI).
 
The Chief Medical Officer launched the CREST Guidelines for the Diagnosis, Assessment and Management of Lymphoedema together with Lymphoedema Network Northern Ireland (LNNI) on 1st February 2008. Copies of these guidelines are available from the Guidelines and Audit Implementation Network (GAIN), Castle Buildings, Belfast, BT4 3SQ (Tel: 905522351) and online: www.dhsspsni.gov.uk/index/hss/gain.htm.
 
As a result of a strategic review in 2011, the name of the charity has been changed to ‘Lymphoedema Support NI’, seen as more appealing. It will also enable a wider audience to be reached via our website.   
 
LYMPHOEDEMA SUPPORT NI
 
Lymphoedema Support NI committed to its ongoing development as an independent organisation for the support of lymphoedema patients across Northern Ireland, and we encourage everyone affected by lymphoedema to join our group, where they will be made most welcome.
 
Further information and free copies of our information booklet, ‘Lymphoedema    your questions answered’, are available from:
 
Lymphoedema Support NI
P. O. Box 851
Belfast
BT9 6WY
 
Tel: 028 90667570
 
Lymphoedema Support NI is recognised as a charity by the Inland Revenue under reference XR68639