(Written at the request of NICaN)

 18.02.2011

 

In 1980, when I was 38 years old, I was diagnosed with a malignant melanoma in my left leg. I underwent surgery for removal of the tumour and the lymph glands in my groin. This was a devastating experience for our family, not least because I had four small children, aged seven, five, three and one.  

I was discharged from hospital three weeks following my surgery, and shortly afterwards, developed lymphoedema in my leg. Lymphoedema is a swelling, which occurs due to a failure in the lymphatic system. This can be caused by damage to the lymphatic system as a result of surgery (for example, the removal of lymph nodes during surgery for cancer), or as a side effect of radiation or chemotherapy treatment for cancer. 

 

I was referred to physiotherapy, where treatment consisted in my being fitted with a compression stocking for my swollen leg. For the next sixteen years, I attended every six months for measuring and replacement of this made-to-measure compression stocking.  Throughout that period, I suffered frequent episodes of flu-like symptoms, redness and burning pain in my leg. It was so disheartening to see the condition of my leg deteriorate over this time, and this prompted me to search for information about lymphoedema and its management. 

 

In 1984, I heard about Intermittent Compression Pumps (IPC), which were/are being used in some centres to treat lymphoedema.  Unaware of the dangers of these pumps, I used one on my leg at home. In March 1991 - eleven years after my surgery - I went to see a lymphoedema specialist in London, who prescribed an off-the-shelf compression stocking, but no further treatment was offered! I next learned of a German surgeon, who was performing microsurgery for lymphoedema. I went to see him in Munich in October 1996 in the hope that this might be the answer. He offered an operation that would by-pass the obstruction in the lymph channels in my groin, and, hopefully, reduce the lymphoedema in my leg. 

 

On my return from Germany, I decided to seek a second opinion on this surgery, and

contacted a friend, who is a  dermatologist in Australia, where there is a very high incidence of malignant melanoma. He recommended that I consult another Australian doctor, who was an authority on lymphoedema (deceased 1997). I telephoned him and he strongly advised against this surgery, and warned me that it risked making matters much worse.  Instead, he informed me about specialist treatment, known as Complex Decongestive Therapy (CDT), and recommended that I go for this treatment to a specialist Clinic for Lymphology in Germany. He also sent me a copy of his information booklet entitled, ‘Informationabout Lymphoedema for Patients’, 5^th Edition, May 1995, which he had written. This information was a revelation to me, being very informative, and it was the first time in sixteen years that I saw information aimed at lymphoedema sufferers, explaining the condition and how it should be treated.

 

Lymphoedema is a chronic disease and cannot be cured at present, but with the correct

treatment it can be kept under control. When left untreated, it progresses, leading to

complications, such as fibrosis (hardening of the tissues), infection and increased swelling.

 

Complex Decongestive Therapy (CDT) is virtually free from side-effects and is regarded

as the treatment of first choice for lymphoedema.  It consists of four elements: Manual Lymphatic Drainage (MLD), compression bandaging, skin and nail care and remedial exercise, and is performed in two phases.

Phase 1, the Intensive Phase aims to increase lymph flow, reduce fibrosis, if present, and prevent complications. It must include all four elements: Manual Lymphatic Drainage (MLD), compression bandaging, skin and nail care and remedial exercise. This treatment takes approximately one-and-a-half hours per day for a minimum of two weeks in the early stages of lymphoedema, and may last up to six weeks if the lymphoedema has become more advanced.  It is important to stress that lymphoedema should always be treated at its earliest stage, when it is soft and more easily managed. It is delivered by specially-trained physiotherapists, who also instruct patients in self-care.

Phase 2, the Maintenance Phase aims to maintain and further improve the treatment outcome of Phase 1.  It includes wearing compression garments, carrying out self-treatment and further MLD and Intensive Phase CDT, as required.    

 

I tried to seek this treatment closer to home. In November 1996, I again got in touch with the Lymphoedema Specialist in London, whom I had previously attended in 1991, for a second opinion on treatment at the German Clinic for Lymphology, which had been recommended to me.  He informed me that the principles of the treatment regime at the German Clinic were much the same as those employed at his clinic, but before I could pursue this further, I had to be admitted to hospital with a serious infection (cellulitis) in my leg.  I was given a course of antibiotics, and because areas of inflammation remained in my hip and at the top of my leg, long-term antibiotics were prescribed for me. I received a four-week course of MLD and bandaging at the hospital, however, the areas of inflammation remained unchanged, and my compression stocking was uncomfortable to wear. I later received further treatment at the hospital, but these problems remained unresolved. 

 

In April 1997, I went for a consultation to the Lymphoedema Specialist in London. He informed me that the fact that my compression stocking did not extend over the affected areas and the pneumatic compression therapy (pump) had pushed the lymphatic fluid up to this point had contributed to the chronic inflammation and fibrosis in my hip and at the top of my leg. I now understood the warnings in the Australian doctor’s information booklet about the dangers of compression pumps and the devastating effect they can have. The ill-fitting compression stocking was due to a band of fibrosis which had developed at the top of my leg and the lymphoedema had progressed to my hip, rendering it infinitely more difficult to treat and control. The London Consultant said that he would make enquiries to see if he could identify anyone who was suitably trained in Northern Ireland to treat me, and failing that, that he would arrange for me have a three-week course of MLD by a therapist in London. However, I heard nothing further. I then found a physiotherapist in Northern Ireland who was treating lymphoedema, but was not given treatment on grounds that the increased volume of my leg was less than 20%! 

 

In October 1997, I went for a consultation to the German Clinic for Lymphology, which had been recommended to me by the Australian Specialist, and in January 1998, my Hospital Consultant in Belfast referred me there for a four-week course of treatment. Finally, after eighteen years of searching, I received the first effective treatment for my lymphoedema.  The antibiotics were discontinued and, following four weeks of Complex Decongestive Therapy at the clinic, the inflamed areas of fibrosis in my hip and leg had gone and I was fitted with a made-to-measure compression stocking, which was now comfortable to wear.  The experience of this high quality treatment was the impetus for me to do something to redress the inadequate treatment I and so many other lymphoedema patients in Northern Ireland had encountered.

 

It was my exposure to this high standard of care that led me in 2001 to start writing repeatedly to the Chief Medical Officer and others in positions of authority with the objective of increasing awareness of this condition and the need for all aspects of treatment to be made accessible to local patients with lymphoedema. At that time, information and treatment for patients with lymphoedema in Northern Ireland was very limited. 

 

An opportunity arose in 2001, when a generous benefactor agreed to support me financially in my endeavours. This enabled me to arrange for the funding of two physiotherapists to attend a three-week MLD/CDT Certification Training Course in June 2002 at the German Cinic for Lymphology.

 

Subsequently, together with one of these two physiotherapists and another patient, who is sadly now deceased, I set up the Northern Ireland Lymphoedema Support Group (NILSG) in October 2002.  Our aims and objectives were to:

a) provide support for people with lymphoedema

b) provide information about lymphoedema and its treatment

c) work towards the availability of better resources for lymphoedema treatment and

d) work in partnership with local healthcare professionals and others in furtherance of our goals

 

In November, 2002 the then President of the Vascular Surgeons of Great Britain and Ireland, invited the Lymphologist, who is Medical Director of the German Clinic as a guest speaker at the Annual Scientific Meeting of the Society at the Waterfront Hall in Belfast. The visiting Lymphologist gave a comprehensive lecture on lymphoedema and the treatment carried out at her Clinic. NILSG provided the funding for her visit.

 

NILSG became a registered charity in 2003, and through fundraising and philanthropic donations, we provide a telephone helpline service and current information about lymphoedema and its treatment.  On 12^th April 2006, we launched our website (www.nilsg.co.uk) and patient information booklet, entitled ‘Lymphoedema - Your Questions Answered’, which was produced in co-operation with the Physiotherapy Department of North & West Belfast HSS Trust. We had been invited to participate with them in setting up the first (Pilot) Lymphoedema Service in Northern Ireland there in 2003. The NILSG was responsible for all production costs of the booklet, and, to date, we 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.  

 

In furtherance of our goals, the NILSG 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 the Voluntary Sector, we have provided funding for ten physiotherapists, two nurses and a Consultant Vascular Surgeon to attend a three-week MLD/CDT Certified Training Course at the German Clinic for Lymphology.

 

The NILSG committee and members have played a crucial role in informing, influencing and contributing to the policy, planning and health initiatives undertaken in regards to lymphoedema by statutory agencies.  In March 2003, the Chief Medical Officer established the first ever working group to review lymphoedema services in Northern Ireland. The remit of the Review Group was to examine the services which were currently available for people with lymphoedema and to make recommendations to improve the future pattern of lymphoedema services. Patients and healthcare professionals from the NILSG were members of the Review Group. In September 2004, the findings of this 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." These conclusions are familiar to me and other members of the NILSG, and we remain determined to continue to campaign for improvement of services.

 

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 the 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. The 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 Guidelines for the Diagnosis, Assessment and Management of Lymphoedemawere launched on the 1^st February 2008 by the Chief Medical Officer for N. Ireland.  Copies of these guidelines are available from the Guidelines and Audit Implementation Network (GAIN) Castle Buildings, Belfast, BT4 3SQ (Tel: 90522351) and online: www.dhsspsni.gov.uk/index/hss/gain.htm 

 

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. 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, involved in the development of a standard for patient information in the Services Framework for Cancer. 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 Patient Information Forum (PIF), 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, Marie Curie, 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 support group for lymphoedema 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. 

 

Further information and free copies of our information booklet, ‘Lymphoedema your  questions answered’  are available from:

 

       E-mail: info@nilsg.co.uk

       W: www.nilsg.co.uk