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WINTER 2000 ISSUE Jessica Scotton - a star is born By Anita Wallace
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AUTUMN 2000 ISSUE
QUESTIONS AND ANSWERS PART 2 Our Chief Medical Adviser, Dr. Peter Mortimer, Consultant Dermatologist, attended a meeting in March 2000 at the Royal Marsden Hospital, Chelsea and answered members' questions. ![]() Dr. Peter Mortimer Question: Answer: Question: Answer: Question: Answer:
Make sure you moisturise the skin well. Vaseline is the best moisturiser: it can be put on at night and then washed off in the morning before putting on a different type of moisturiser more acceptable to daytime use. Question: Answer: Question: Answer: Question: Answer:
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SUMMER 2000 ISSUE
QUESTIONS AND ANSWERS PART 1 Our Chief Medical Adviser Dr. Peter Mortimer, Consultant Dermatologist, attended a meeting in March 2000 at the Royal
Marsden Hospital, Chelsea and answered members' questions. ![]() Dr. Peter Mortimer Question: Answer: Question: Answer: The most exciting advances taking place at the moment are in understanding the genetics of primary lymphoedema.
St George's Hospital in London, linked with St Thomas's Hospital, is making more progress than anywhere else in the world in
this field. We are trying to understand how genes influence the formation of lymph vessels and how they work.
We are also beginning to get very close to understanding Milroys Disease (Primary Congenital Lymphoedema). At the moment
the best hope to finding better treatment is going to come through this gene research, which is making fairly rapid
progress at the moment.
Question: Answer: With lower limb lymphoedema you may also get pain in the vicinity of the groin if that leg is affected. The pain may be
due to how the lymph glands are responding.
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1. To put the patient on a low dose of antibiotics all the time. Most patients can take penicillin V - which is very old-fashioned and the first type of penicillin invented, but it
is totally safe to take for life as it only treats the infection of cellulitis and does not treat anything else.
The problem comes if you have to take broad-spectrum antibiotics; these are very clever and can deal with any number of
infections in one go. But, in covering a whole range of infections, they will knock out the good bugs as well as the bad.
Question: Answer: Question: Answer: In primary lymphoedema of the lower limbs, I have no doubt that the heavier one is, the greater the strain on the body
and the worse it will make the lymphoedema. Weight loss should help with the swelling. You lose fat and muscle when you
diet. Lymph does not travel well through fat. The more fat there is, the less easy it is for lymph to drain (probably).
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SPRING 2000 ISSUE
THE BEST OF MANY WORLDS AT THE MARIE CURIE CENTRE IN GLASGOW LymphLine's Derek Parsons meets some of the team at the Lymphoedema Clinic at Hunters Hill. A successful partnership between the Marie Curie Centre in Glasgow and one of Britain's biggest businesses - the NHS - is playing a leading role in the management of lymphoedema in Scotland. With a comprehensive service covering not only the Glasgow area but all of West and North Scotland, the Hunters Hill Clinic provides help and assistance for the rest of Scotland too, if needs be. As the only major full time specialist lymphoedema clinic in Scotland, the clinic's management is well aware that coverage of the rest of Scotland is patchy to non-existent. There are too few trained lymphoedema specialists spread too thinly over a country whose geography, scattered population and sometimes difficult communication lines does little to help. All of this, together with the familiar problems of lack of funding and a low awareness of lymphoedema, means that there is much scope for aspiring lymphoedema specialist staff in Scotland. Encouragingly, there are any number of indications that a clear vision does exist of the need to improve the coverage and quality of lymphoedema treatment in Scotland. In Aberdeen alone, no fewer than nine nurses recently completed a Key Worker course and there are new developments either already operational or actively pending in Elgin, Dumfries, Fife, Galloway, Inverness, Orkney and Shetlands. The Hunters Hill Clinic was established in 1991 by Dr John Welsh who was the Medical Director of the Centre. Dr James Adams was also involved in the set-up and since that time has become Medical Director. Dr Welsh is now a Professor in charge of the Palliative Care Department at the nearby Beatson Oncology Unit. Both continue to be closely associated with the lymphoedema clinic. Margaret Key was also recruited from the Centre's wards where she had been a Staff Nurse. Margaret Key, Marie Todd and Margaret Brien obtained their diplomas in the Specialist Management of Chronic Oedema in 1996 when such training courses became available. The Marie Curie lymphoedema service is provided by a multi-disciplinary team based in three sizeable rooms at the Centre and managed by these three full time lymphoedema practitioners who provide a high level of intensive on-going lymphoedema care covering a wide range of individual assessments, treatments and monitoring for the Centre's in-patients and out-patients. Margaret Brien is now in charge of the running of the Clinic, having taken over from Margaret Key who continues as a full-time lymphoedema practitioner following the birth of her son. Margaret Brien is also particularly involved with the development of the domiciliary service that provides palliative treatment for patients either at home or as in-patients in other hospitals. Marie Todd is the third MLD therapist. The day unit at the Centre is run by Sister Gaghan who is a Lymphoedema Key Worker so that she is herself able to care for patients with moderate lymphoedema. Day patients needing intensive on-going care are of course treated by the clinic. The medical practitioner team is made up of the Centre's Medical Director, Dr James Adams and Dr Sheila Mackay - both working full time in the Centre. Professor John Welsh visits the clinic regularly taking a special interest in the child patients and seeing all child referrals. All other referrals are seen by one of these three doctors accompanied by one of the lymphoedema therapists. Other members of a very complete team include physiotherapists, occupational therapists and social workers, advising patients on such subjects as disability allowances and travelling expenses. There are no volunteers at present but there is a vigorous patient support group that, apart from general activities, actively raises funds for the purchase of equipment like Centromed pumps. Substantial Growth Over the years the number of lymphoedema patients receiving treatment at the clinic has increased substantially. There were only 31 patients during the first year, 1991; currently there are 607 registered patients. These figures underline both the considerable success of the clinic and the potential scope that existed and still exists to provide care for the many who still do not receive proper treatment. The LSN receives many calls from patients who have suffered from lymphoedema for years not only without treatment but without a proper diagnosis or information about where to obtain the specialist care and understanding that they so badly need. Education Every year the clinic runs two sessions for 250 medical undergraduates and twice a year key worker programmes are held at the Marie Curie Centre, Hunters Hill. Specialist MLD therapist courses are planned for the near future. The Hunters Hill clinic's commitment to educational development does not stop there. Lymphoedema Specialist Nurse Marie Todd for instance attended Palliative Care Conferences with Prof. Welsh and keeps up with international thinking on treatment of pain in lymphoedema by attending Pain and Palliative Care Conferences such as those recently held in Vienna and Geneva. Marie also writes articles for a Glasgow health board newsletter for patients, carers and professionals. Margaret Key and Margaret Brien attended the Breakthrough Breast Cancer Conference in London last year. Other Features: Referrals The clinic receives referrals from all of the 15 Health Boards in Scotland, although there is an accent on the West and North. With the Boards meeting the treatment costs of referrals and the Marie Curie Centre paying for staff and facilities, the many advantages of such a positive financial equation are very evident. Waiting lists and treatments Hosiery Interestingly, the clinic plans to undertake a study on the relative cost effectiveness of made to measure against off the shelf hosiery and has kindly agreed to give LymphLine the results when they are available. LymphLine was very impressed with the size, professionalism and organisation of the Hunters Hill Clinic and the Marie Curie organisation is to be congratulated for the visionary support that it gives to the National Health Service in Glasgow and other parts of the United Kingdom. There surely can be no doubt in the great debate about the funding of the NHS that this kind of sharing of the load can be a very positive way forward for the NHS, whether its partners come from the voluntary or the commercial sector. WHEN VISITING CLINICS, THE LYMPHLINE TEAM LOOKS OUT, AMONG OTHER THINGS, FOR....
PRIMARY LYMPHOEDEMA IN CHILDREN Some pointers from Professor John Welsh, head of the Department of Palliative Medicine at the Beatson Oncology Centre at Glasgow Western Infirmary. Professor Welsh takes a special interest in the management of primary lymphoedema in children and infants at the Marie Curie Lymphoedema Clinic. "Primary lymphoedema may become manifest in affected children and infants at any time. The child may be born with obvious lymphoedema. This condition is likely to be life-long and, although treatable, it is not curable. Children with lymphoedema have to learn to adapt and cope with the psychosocial problems they will undoubtedly experience; they may also have functional difficulties. Treatment should commence as soon as the diagnosis is made: the approach must be holistic. Depending upon the age of the child, their parents will be involved and educated in the practice and principles of care. However, the child must increasingly be facilitated to become responsible for his or her treatment and supported by a specialist in lymphoedema treatment to ensure the best possible outcome." |
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WINTER 1999 ISSUE
LymphLine reporter Derek Parsons keeps a date with Nurse Eilish Lund, manager of the Lymphoedema Clinic at the Wrexham Nightingale House Hospice.WREXHAM CLINIC SHOWS WAY FORWARD IN NORTH WALES In a widespread geographical area with a large but scattered population - in Wrexham County, Flintshire, South Denbighshire, parts of Gwynedd - the lymphoedema clinic at the Wrexham Hospice shines out like a beacon. A success story that points the way forward towards a future where the plight of lymphoedema patients is fully recognised and high quality treatment and advice is standard and readily available, rather than the exception. This applies not just to North Wales, but across the United Kingdom, wherever large numbers of lymphoedema patients suffer needlessly from a lack of knowledge and understanding that generates neglect. Founded in 1995 Lymphoedema Specialist Nurse Eilish Lund founded the full scale Wrexham Clinic in August 1995. She was invited to do so by the present Matron of the Hospice, Mrs Linda Johnson who, with commendable foresight, realised that the successful management of lymphoedema would require a considerable increase in funding if the modest service then being provided was ever to cope with the large numbers of patients in need of treatment. With significant funding in place, thanks to Matron Johnson's efforts with Macmillan Cancer Relief and the Health Authority, Eilish Lund was appointed full time and helped by a Lymphoedema Diploma Course at Crawley, set about developing the first comprehensive clinic in Wales. During the four short years that followed, Nurse Lund has not only created a lymphoedema clinic of the highest quality. She has also managed to improve radically the knowledge and understanding of lymphoedema by the area's medical profession and uplift general attitudes towards lymphoedema in the community as a whole. "Education, education, education" Nurse Lund's secret - although it is hardly confidential - is "education". She felt from the outset that teaching and training was almost as important as the treatment she was providing to her rapidly increasing number of patients. Prevention a priority The clinic goes from strength to strength with the number of patients increasing from just 50 in 1995 to 260 currently. Interestingly, there were 1,125 therapy sessions last year - a record indeed for such a modestly staffed clinic operating in just two to three small rooms, albeit as an integral part of an outstanding hospice. Crucially, the clinic decided early on that prevention would be a high priority since, in 1995, 80% of the patients were breast cancer patients. Working closely with the breast care nurse, a system was set up for the rapid referral of patients and an ongoing prevention programme was established for those at high risk (axilliary clearance and radiotherapy to axilla). Tuition in skin care, exercises and Simple Lymphatic Drainage (SLD) are provided, together with the use of Bowen Therapy which is particularly useful for breast cancer patients after their treatment and also for maintaining volume reduction after complex therapy. Husbands and partners were encouraged to come to the Clinic to learn SLD and a video was produced in co-operation with the lymphoedema clinic at the Marie Curie Centre, Liverpool. Funding for the video was obtained from the Wrexham Mayoral Fund and instruction leaflets were produced for left and right arm treatment. After all this expert endeavour, LymphLine finds the result particularly interesting. These days, the Clinic has very few arms to bandage - and all of these are referrals from outside the catchment area! The effects of lymphoedema can be substantially reduced by proper management, and this is particularly effective with post mastectomy conditions. Irrepressible LymphLine found Eilish Lund to be exuberantly Irish! Born in County Clare, she trained as a General Nurse at Whipps Cross Hospital, London, and has a diploma in Counselling. Her background is in district nursing and she has a BSc in Community Health. She worked in oncology in New York and returned to nurse in Ireland for a further 15 years, the final two of which were spent as a District Nurse on the Aran Islands off the West Coast. She is married to a Swedish artist and software programmer and has a daughter. As such a proactive person, it is not surprising that she prefers to take life by the scruff - but does so with the high degree of sensitivity and perception that you would expect from such a compassionate person. It is not surprising either that, in her thirties, Eilish and her husband seriously considered sailing around the world in a 24 foot boat, or that she is running for Macmillan Cancer Relief in next year's London Marathon! Further highlights Staffing levels and accommodation Fully integrated within the Hospice with two to three pleasant but small rooms, staffing levels at the Wrexham Clinic are modest, but very high quality and efficient. Specialist Nurse Eilish Lund is the senior full time MLD therapist and she both manages the clinic and leads a team of three:
Nurse Lund is the principal assessor, assisted by Nurse Renshaw. There is no regular involvement by a doctor but the Clinic can call upon one of the three Hospice doctors at any time during the day. Additionally, one of the vascular surgeons at the Maelor Hospital is available to see any patients with arterial or venous complications. All patients having compression to the legs have Doppler assessment, which is done on a six month basis if the patient is deemed to be at risk; otherwise regular blood pressure checks are not considered necessary. Referrals Lymphoedema referrals of all kinds from within the catchment area are accepted by the Clinic from the North Wales Health Authority, general practitioners and hospital consultants. Referrals from outside the area are considered for acceptance on merit. At present the Clinic does not have an involvement with local Primary Care Group (PCG) negotiations. Children are accepted but so far the youngest patient is aged 16. Primary patients Although 21% of the patients have primary lymphoedema, the Clinic devotes 42% of therapy time to them because it is felt that they are in a particularly disadvantaged situation. Waiting lists and appointment times Waiting times are never longer than a month for a first assessment and shorter for cancer secondary cases. Appointment times for patients naturally vary depending on the treatment involved, but are usually half an hour for a routine check-up, one hour for arm CDT (Complex Decongestive Therapy) and one and a half hours for leg CDT. Frequency of visits Depending on the severity of the circumstances, patients on CDT are treated five days a week for two to three weeks. In more routine situations, patients are seen two or three times a year. Hydrotherapy The Clinic has the use of the Hospice's hydrotherapy pool which primary patients use for an hour every morning. The use of this facility is popular with patients, most particularly because the physiotherapists have devised a programme of exercises set to music. Cellulitis Clinic Unusually, there is a bi-monthly Cellulitis Clinic which is attended by Dr Chris Cefai, Consultant Microbiologist who has been able to make a sizeable contribution to the reduction of long term infection problems. Other specialist facilities Physiotherapy, dietary advice, occupational therapy, aromatherapy, reflexology and stress management groups are all regular services provided by the Hospice which are available to the Clinic. Computer Programme A computer package for the measurement of limb volume and the provision of statistics is part of the routine of the Clinic, enabling computerised case notes, referral patterns and clinical attendances to be available at short notice. One immediate patient benefit of the system is that the Clinic is able to provide patients with take home copies of a computer graphic demonstrating volume reduction progress of arms and legs. Whilst such visual aids are intended to give patients encouragement, as Eilish Lund succinctly says - "They also help compliance - those patients who work with you do well, and those who don't, won't"! Support Group There is a support group that provides valuable back-up to the Clinic. The group meets twice a year and has speakers provided by the Clinic giving up to date developments within lymphoedema management. Run by the Clinic's therapists, it is hoped that patients will soon take on this responsibility themselves. Hosiery Hosiery replacement for legs is every six months, unless the size changes, when hosiery is changed more frequently until the condition is stable. Arm hosiery is changed every four or five months depending on the need. Circaid is used on selected patients after CDT but the Clinic has not yet used Legacy, although it is under current consideration. Made to measure hosiery is rarely used because the Clinic's policy is to use CDT to get limbs to conform to the range of off-the-shelf garments. Maelor Hospital patients have hosiery supplied by the hospital via the Hospice. Out of area patients have hosiery supplied by the Hospice at no charge. Fund raising Fund raising is managed by the Hospice as part of their regular general fund raising programme, which finds £750,000 out of a total hospice cost of £1,000,000 every year. Even more education! Eilish regularly provides lymphoedema lectures for doctors visiting the Hospice as part of post graduate Palliative Care Seminars - a vital ingredient in Nurse Lund's promotional programme to medical professionals. Similarly, she writes articles on lymphoedema care for publications like the Practice Nurse Newsletter. And, if all of this were not enough, it has been agreed that the Clinic can use the Key Worker Lymphoedema course from the Marie Curie Centre at Ardenlea, Ilkley, in order to be able to franchise the course and deliver it to nurses within the Hospice's own education department. LymphLine is in no doubt that the development of new lymphoedema services in Wales is to some considerable extent attributable to Nurse Lund both because of the exemplary way in which the Wrexham Clinic has been created and also because of her progressive educational activities. The Hospice at Home Community Care Centre at Bangor now has a full time lymphoedema practitioner and there will be a similar development next June at the Glan Clwyd Hospital at Rhyl, the new North Wales Cancer Centre where two nurses are being trained in lymphoedema management. There is a full time practitioner on a year's appointment at the Velindre Hospital in Cardiff and the Telford Hospital in Shropshire has just appointed a lymphoedema therapist. Eilish is delighted with such gains. She knows that they will reduce the high level of referrals to the Wrexham Clinic, enabling her to offer more patients intensive therapy. And when the Key Worker training course begins to produce lymphoedema specialist nurses, she knows that this can only increase the number of trained personnel locally, easing the load on the Clinic and the GPs in the area. Specialist Nurse Eilish Lund - LymphLine suspects that everyone is glad you never sailed around the world. Who knows, you might have found some idyllic beach and never come back, and that would have been everyone's loss, most especially the lymphoedema patients in North Wales. Best of luck in the Marathon! ![]() Lymphoedema Specialist Eilish Lund and Nurse Jan Renshaw |