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PREVIOUS LYMPHLINE ARTICLES 2000 & 1999

These articles have been taken from previous issues of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.

Jessica Scotton - A Star is Born - Winter 2000
Questions & Answers Part 2 - Autumn 2000
Questions & Answers Part 1 - Summer 2000
The best of many worlds at the Marie Curie Centre in Glasgow - Spring 2000

Wrexham clinic shows way forward in North Wales - Winter 1999

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WINTER 2000 ISSUE

Jessica Scotton - a star is born


By Anita Wallace

Jessica Scotton
Jessica Scotton

At the tender age of eight, Jessica Scotton already works hard for the LSN, hoping to help other children who - like her - have lymphoedema.

Jessica developed lymphoedema two years ago following a fall in the playground at Doods Brow Preparatory School in Surrey. This year, she has become something of a media star, featuring on television and radio, as well as in print.

Her mother Sharon, aged 34, gave up her job as a head teacher at Doods Brow School, so that she could care for Jessica. She says the whole family has been happy to work together on raising awareness.

"Jessica has found all these experiences fascinating, as have the rest of the family," she told Lymphline. "We have been really pleased to be able to highlight 'the cause' so to speak."

Neither Sharon, nor her husband Neil, who is a Director of Business Development, knew about lymphoedema before Jessica's accident. They were lucky enough to be referred by East Surrey Hospital to the St. George's Hospital paediatric lymphoedema clinic, where she was seen by Dr. Michael Sharland, consultant paediatrician, and the LSN's Chief Medical Adviser Dr. Peter Mortimer, who diagnosed lymphoedema.

Since then, Sharon Scotton has trained in Manual Lymphatic Drainage (MLD), the recommended therapy for Jessica's condition, so that she can provide the daily care needed by her daughter. Sharon's life is busy; she also has a son Harry, aged 6 who has dyspraxia and a beautiful new baby, 5 month-old Maisie.

The Scotton family's efforts to raise awareness of lymphoedema started in April this year when they were featured in an article in the Saturday Telegraph colour supplement, after being contacted by the LSN.

Jessica, particularly, hoped that other children with lymphoedema would get in touch with her. She enjoyed talking to journalist Angela Neustatter, who wrote the article, and was happy to be photographed.

After the Telegraph article appeared, a German television company asked the family if they would be willing to feature in a short documentary. They filmed Jessica taking part in her ballet classes and playing in the garden. Sharon demonstrated on camera just how she carried out the essential Manual Lymphatic Drainage therapy for her daughter.

"It was weird having to do things over and over again all day" Jessica comments about the long hours of filming.

This sparked still more media interest in the Scottons. BBC Southern Counties Radio asked them to participate in a programme "Me and my Medic" with Kate Marshall, lymphoedema therapist at St George's Hospital, London.

"Because we were on holiday we went to BBC Radio Devon and spoke to the DJ on the phone through a big red microphone" Jessica told Lymphline. "Mummy, Daddy and I all had headphones on. It was really hard at first because I couldn't see who I was talking to and it was live so I didn't have time to get used to it. But after the first few minutes I started to enjoy it and when we had finished, the lady on reception showed us around the studios, which was really interesting"

Through their media work, Jessica and her family have reached thousands of people with lymphoedema - and the LSN is hugely grateful to them.

Sharon Scotton is keen to stress, though, that family life is just the same as it always was. Being the star of the show hasn't gone to Jessica's head.

"She doesn't want to be famous when she grows up," she comments.

"She wants to be a vet".

Note from Editor: The LSN has managed to put Jessica in touch with another member of the same age and they are now in regular contact.


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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
Dr. Peter Mortimer


Question:
I have had a swollen limb since 1987 but only got help in the 1990s when it was diagnosed as primary lymphoedema. I thought I could work very hard and control it. I tried alternative medicine but have now reached the stage that I don't know whether I should continue working at it. Has anyone ever been cured and, if not, is there any hope in the future?

Answer:
A cure means solving the problem and, in that respect, at the moment we cannot cure lymphoedema. If you use the definition of significant improvement of the condition, then we can do that, but it is a fickle condition. If you do all the right things, a number of primary patients do improve to the extent that lymphoedema is no longer so much of a problem, and I have also seen cancer patients who manage to clear it if it is dealt with very quickly.
With primary lymphoedema it may fluctuate, but at the stage that it has become permanent, I don't think it is likely to go away. But don't give up, because, if left, lymphoedema tends to get worse and treatments in the main will control the condition. It is a question of finding a balance in your life that you are comfortable with, so that you are doing sufficient to control it but not so much that the treatments and problem are ruling your life.


Question:
I have numbness in the fingers - is that caused by lymphoedema?

Answer:
Numbness in the fingers after breast cancer treatment can be due to a number of factors. Firstly, with carpal tunnel syndrome the nerve travels through a tunnel at the wrist. Swelling at the wrist can increase the pressure on nerves, reducing their effectiveness, and this can affect the fingers and thumb. Another cause may well be that nerves as they pass through the armpit can be affected by radiotherapy. Also, nerves emerging from the neck and into the arm can be affected by arthritis in the neck and the extra weight of the swollen arm.


Question:
I have had lymphoedema for 35 years. I now have eczema on the lymphoedematous skin and am worried about the long-term use of a steroid cream.

Answer:
There is a relationship between lymphoedema and the development of eczema on the lymphoedema and although eczema is quite common, one must associate it with lymphoedema in this case. It can be caused by:
1.   Congestion in the leg, particularly in the veins, as that in itself can cause eczema.
2.   Lymphoedema does dry the skin, despite there being so much fluid in the limb. The skin can dry out and split a little, particularly when the skin is stretched over the swelling, and that process is a strong drive for the development of eczema.
The safe use of Cortisone depends entirely on the strength. Hydrocortisone is the weakest and is quite safe; the next strength up is Eumovate which is also quite safe for regular use. But the strongest ones, if used too much and too long, can thin the skin. So do review the treatment if it is not working.
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:
Does muscle tone make a difference to lymphoedema?

Answer:
Muscle tone and muscle power are undoubtedly important as they are the main stimulus for pumping lymph. The weaker the muscles, the less effective the limb drainage, so the answer must be - the greater the tone, the more effective the pump and the better it will be as far as lymph drainage is concerned. However, everyone is different - you cannot control that - so get into the best condition for you.


Question:
I have had primary lymphoedema for many years and I have found that through exercise and keeping the limb properly supported you can make a fundamental difference to its size. But can you give me advice about how to deal with ankle, knee and joint stiffness? I find that it is agony in the morning.

Answer:
My first response would be "What is causing the stiffness"? Is it the joint itself or is it the fact of the thicker skin and fibrotic effect from the skin encasing the joint makes the joint stiffer? Probably both. Also, in cases where patients have had a debulking operation, scarring particularly affects the ankle as the skin is so tight from the scars it makes it difficult to move the skin.
I don't know the incidence of arthritis purely as a result of lymphoedema, but from seeing my own patients I feel there must be a link between arthritis and lymphoedema. The weight of a swollen limb must have an effect on muscles and joints. With a lower limb, it makes a difference to your gait and that will affect the hip and back.
To be blunt, you must massage from within and massage from without, and keep the joints as supple as possible. Also be careful in aeroplanes - try to move about as much as possible and wear loose non-restrictive clothing other than your compression hosiery.


Question:
Does athlete's foot have anything to do with lymphoedema?

Answer:
Athlete's foot is a fungus. It appears between the toes in athletes with sweaty feet from trainers. It is also very common in lymphoedema as compression stockings do not allow sufficient air to get to the skin. Soggy skin remains moist allowing the fungus to get in. It needs treatment because athlete's foot is the single most important portal of entry for bacteria to cause cellulitis. The important components of treatment are:
1.   Prevent the fungus - I always recommend half strength Whitfields ointment regularly.
2.   Apply creams to clear it up - Lamisil cream (Terbinafine cream) will clear it in about a week.
3.   Then address the soggy skin - dry well between the toes and keep well aerated.


Question:
If one has lymphoedema in one limb, does it affect the whole body?

Answer:
This question crops up quite often and is very difficult to explain. Quite often with patients who have breast cancer and arm swelling, the trunk and breast area will impact on other sites because the lymph will only drain by escaping to other areas.
Some patients notice after MLD that they have sensations they can feel in other areas and during an MLD trial, there was a significant response to this question. The MLD changed the sensations in and beneath the skin implying that there was something going on elsewhere. Also some patients felt the lymph glands hurt at other sites - perhaps the answer is the lymph glands are having to work harder than previously.


Question:
My leg is quite fibrotic. For many years I have had acupuncture of the limb and although I know it is not advisable, I have never had any problems and only one case of cellulitis. Yesterday I felt sensations in my foot and thought it might be the onset of cellulitis. My doctor has recommended Augmentin. Will this help?

Answer:
Augmentin gets into the tissues very well and is good for treating cellulitis. If you go to an acupuncturist for lymphoedema, they will want to put needles in the lymphoedematous area but that will increase your risk of cellulitis. An injury to the skin may allow dormant bacteria to get in. Ninety out of 100 people may not have a problem, but ten out of 100 may get terrible cellulitis, so you should avoid it if at all possible in the limb at risk.
We have had too many reports of women developing arm swelling after having blood taken or an injection into that arm. If you happened to be the patient who developed lymphoedema within the following 24 hours, you would be quite bitter about it.


Question:
The only treatments I know of are self massage, bandaging and sleeves and MLD. Why is it very difficult to get MLD in hospital?

Answer:
Random controlled trials have said that MLD is effective but the NHS is driven by drug and surgical treatments. The perception of MLD as an alternative treatment makes it difficult for it to be accepted as a conventional treatment. Even something as well understood as physiotherapy treatment is not seen in the same light as surgery. There is also the question of allocating resources between cancer treatments and other treatments and their cost effectiveness. How much MLD must you have to make it effective? Three weeks? Once a year? Three times a year? And we don't have the answer to that.
On the continent, MLD is in general usage. They have simply decided it is just the best way without having the proof. At St George's and Royal Marsden Hospitals, MLD is available but it is time-consuming and there are not very many fully trained staff. The last thing I want is for MLD to be done by someone who is not fully trained.
I think we just have to keep working to educate everyone that there is evidence that this works. I recommend one course of treatment, then self-massage, and a follow-up every few weeks followed by a review after a year, and the Health Authorities seem to accept that. The problem is that health purchasers much prefer dealing with a single episode such as a hip replacement and do not like chronic conditions such as lymphoedema where treatment is open-ended.


Question:
What is the update on benzopyrones? Are they safe to take and when will they be available in this country?

Answer:
Benzopyrones are a peculiar and complex group of drugs. They are a concoction of plant-based chemicals and all of them - Coumarin used in Australia and Paroven, the only one licensed for use in this country - are essentially the same group of drugs. A lot of the others, like Grapeseed extract, are of the same category. The problem is that no one really knows how they work and one might be accepting of that if we knew that they did work. We did trials of Paroven and found it was very weak in effect by comparison with physical therapies.
Coumarin received a lot of publicity when it was withdrawn because of liver damage, which makes us somewhat nervous of the drugs in this same group. The figure for reactions was very low, but life threatening if it did have a bad effect.
We do sometimes use Paroven to soften a limb, but it is not a first line therapy.


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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
Dr. Peter Mortimer


Question:
Three years ago my wife had a mastectomy. Lymph nodes were removed from the armpit; now her wrist has swollen. What is the mechanism that causes swelling of the wrist and not the armpit?

Answer:
When lymph glands are necessarily removed for the treatment of breast cancer, this clearly undermines the drainage of the lymph, not only from the entire upper arm but also to some extent from the associated quadrant of the trunk. The number of lymph glands at any one site varies from person to person and the number of lymph glands that may be removed also varies considerably. The lymph vessels absorb the tissue fluids that arrive from the blood, draining into the lymph glands under the arm. It seems that lymph vessels are under strain when the lymph glands have been removed and increased pressure may create escape routes for the fluid causing regional failure of lymph vessels. The whole effect is much the same as damming a river and the outcome may well depend on the geography of that particular person's lymph system.


Question:
I have primary lymphoedema of the leg. Have there been any advances in treatment since MLD?

Answer:
Although treatments have improved, I don't think we are anywhere near providing the right treatment for lymphoedema and will not be until we understand more about the condition. Irrespective of the cause of lymphoedema, treatment mainly consists of massage to stimulate lymph drainage from without and exercise,while wearing compression, to stimulate the drainage from within.

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:
What are the symptoms of primary lymphoedema? Does it start with pains?

Answer:
The symptoms of primary lymphoedema may not be any different from those of secondary lymphoedema. The fault for primary lymphoedema may be present at birth, even though it may not become apparent at birth but at puberty or some time after then. Under those circumstances it is usually in the lower limb and proportionally 3:1 or 4:1 female and the usual symptom felt is pain. This is often quite acute and may be due to sudden stretching or swelling, after which it may then become discomfort rather than pain. Intermittent at first, the swelling then becomes more general and permanent, usually starting in an ankle. It may also start with cellulitis and may then manifest quite dramatically.

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.


Question:
I have primary lymphoedema, but I think I remember that pain started off in the groin region before my leg swelled.

Answer:
I think that is quite likely. With some primary lymphoedemas the problem starts with the lymph glands, which might enlarge. A surgeon may well then perform a biopsy worrying about a cancerous growth and everyone is very relieved on finding that this is not the case. But the fact that lymph glands have been removed may well start lymphoedema in the leg.


Question:
I would like to ask about removal of lymph glands in the upper body and lymphoedema manifest in the lower body. I had TB in the lymph glands of the neck when five years old and these glands were taken out, but I have lymphoedema in the ankle.

Answer:
I cannot think of any medical or scientific reason why they should have been linked and this may have been coincidental, as there is no reason why a problem in the upper body should affect the leg. I have heard of some reports of TB leading to lymphoedema, but in such cases the TB would involve the lymph glands at the root of the affected limb.


Question:
Over the last few years I have had a general intolerance to heat. Is this caused by lymphoedema?

Answer:
General body heat is more likely to be a hormonal factor, not necessarily caused by the menopause, but perhaps by other factors like thyroid. A lymphoedematous limb can get hotter and sweat more, which is a mechanism we do not fully understand, but this should not affect your body overall.


Question:
What is the incidence of lymphoedema after breast cancer if you have a preventative treatment like MLD or physiotherapy, as is the case abroad?

Answer:
We don't know because the research has not been done. The frustration for me is that even in places like Germany, France, Switzerland and Austria where the use of MLD and other therapies is much greater than ours, they don't provide the evidence to show whether MLD and wearing a sleeve for two hours a day would make a difference. In this country, we have done trials on MLD and bandaging and our evidence that it works is now known and quoted world-wide However, it requires many resources and, as in other countries, qualified staff are not necessarily keen. We need more evidence before the Health Service would agree to the use of resources in this way. There is also a balance between doing something we are sure is right and yet not imposing more on a patient after breast cancer surgery than is absolutely necessary as breast cancer is a very stressful business.


Question:
In 1985 I had my first breast cancer operation and before the treatment was finished I had a swollen arm and hand. I had further treatment in 1990 for a lump the other side and then last year had a mastectomy and reconstruction. I was told it is very rare to have a mastectomy on both sides. I was put back onto tamoxifen and now both arms are swollen. Does tamoxifen accelerate lymphoedema? I understand that one of the side effects is oedema in the ankles and feet.

Answer:
During research in the 1990s we found that the tamoxifen did seem to be a risk factor for lymphoedema. Although this may be the case, the overwhelming fact is that tamoxifen helps to keep cancer under control and that is by far the most important point. I think it is an over-statement to say that bilateral mastectomy is very rare because when we looked at 1,200 patients in one area, we found that 29 per cent of the 1,200 had lymphoedema and about 47 of them had had bilateral breast cancer treatment. The incidence of arm swelling was no greater than in those who had had treatment on one side only. Overall 29 per cent had one arm swollen and 24 per cent of those who had had treatment on both sides had just one arm swollen. However, it is a fact that the more surgery you have, the greater the damage and the greater the risk of lymphoedema. Three operations would increase your chances of lymphoedema and any intervention does run the risk of destabilising the lymph drainage again; so further surgery always has to be a planned decision.


Question:
Have you any knowledge of the potential link between lymphoedema of the trunk and indigestion. Is it entirely coincidental?

Answer:
I do not know of any relationship between truncal lymphoedema and indigestion, but indigestion symptoms are incredibly common - 25-35 per cent of the population have tablets to control stomach acidity, for which most patients are put on Zantac or Losec.


Question:
Is it possible to change your genes with nutrition? People in the US are now looking at Soya products to prevent heart disease and so on.

Answer:
I don't know the answer. I don't think anyone does. How diet influences many diseases is a mystery. Many patients know more about how their bodies work than the doctor will. But, fundamentally your genes don't change - we get older, but we don't basically change. You get the genes from your mother and father. They are the templates that have made every cell in your body - like using a jelly mould. When genes misbehave and go wrong, mutations occur. This is how cancer develops. At the moment, trying to change genes is proving to be very difficult. I cannot see how food would influence the genes and I don't believe that claim could be substantiated at the moment.


Question:
I have had lymphoedema for 35 years and it does not get any better. I am on a low dosage of antibiotics and have now developed arthritis of the knee. Do you advise people to be on this low dosage to avoid cellulitis?

Answer:
The lymphatic route is a means of policing and dealing with infection, so when lymph doesn't drain properly, two things happen. Firstly the plumbing goes awry and brings swelling and secondly infections are not dealt with properly. When the lymphatic system does not operate effectively, the infection goes wild and the patient develops cellulitis. This is a problem that affects one-third of all lymphoedema patients; it is not only debilitating but it makes the lymphoedema worse and further infection more likely. The only way of dealing with that is:

1. To put the patient on a low dose of antibiotics all the time.
2. Try to reduce the swelling.

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.
As far as joint replacements are concerned, which is of course an option, I used to say "If you cannot walk very well, it does not help the lymphoedema and you are probably in pain". More and more lymphoedema patients are having joint replacements and in general if we have managed to avoid infection and look after the lymphoedema, the likelihood of problems seems to be small. More mobility afterwards means that exercise will help to keep the lymph moving, but make sure the orthopaedic surgeon is fully aware of lymphoedema and what should be done.


Question:
I have had cellulitis and lymphoedema. What is the medical link between the two?

Answer:
The lymphatic system is important in controlling infection. Bacteria get into the system and are either killed by the immune system which is ready because it has met the bug before, or if it has not met that particular bug then it is up to the lymph vessels and the lymph glands to respond. Bacteria should not get any further than that point. However, if you have lymphoedema or your lymphatic system is not working very well, there will be no challenge to the bacteria. Bacteria will be free to multiply and if unchecked in the area next to the lymphoedema site, will be able to get into the blood stream unchallenged. One moment you are feeling fine, then the next moment terrible, and very quickly you are in danger of blood poisoning.


Question:
Does weight make a difference to lymphoedema?

Answer:
Weight is important. There is evidence that overweight increases the likelihood of lymphoedema in breast cancer patients. A gain in weight will also increase the severity of lymphoedema. The trouble is that hormonal therapies do tend to make you put on weight and also retain fluid to some extent.

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
All lymphoedema referrals are accepted by the clinic covering primary, secondary and children. Primary patients account for approximately 8 per cent of the total, with post breast cancer treatment generally accounting for the major part of the secondary referrals. The clinic takes a great interest in children but no very young babies with lymphoedema have been treated. The clinic would do so but only after a thorough investigation of the baby had been carried out. Among the child patients at present are a brother and sister aged 12 months and 14 years with an inherited condition related to their father's lymphoedema. In these respects, LymphLine was interested to note that the clinic has recently begun a study into the experience of parents of children with lymphoedema and will be informing the LSN about the findings in due course.

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
The clinic tries to see new patients within a month, with patients with advanced cancer being assessed within a week. The clinic sees around 18 patients a day with appointment times averaging one to one and a half hours. All patients, including children, are seen as frequently as required. All elements of CDT treatment are provided, together with training in self massage.

Hosiery
Off the shelf and made to measure hosiery is supplied free, as are aids for easy application of compression sleeves.

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....

  • the types of treatment available
  • doctor/patient supervision
  • the number of lymphoedema therapists
  • the percentage of primary and secondary lymphoedemas
  • the length of the patient waiting list
  • the appointment time for patients receiving therapy
  • the average number of patients through the clinic daily
  • the number of patients registered with the clinic
  • the frequency with which hosiery is replaced

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

WREXHAM CLINIC SHOWS WAY FORWARD IN NORTH WALES


LymphLine reporter Derek Parsons keeps a date with Nurse Eilish Lund, manager of the Lymphoedema Clinic at the Wrexham Nightingale House Hospice.

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 Jan Renshaw, sharing her time 50:50 with her duties as a Breast Care Nurse at the nearby Wrexham Maelor Hospital. Jan is commencing a Key Worker Lymphoedema course next January, which will enable her to be even more of a right hand woman for Eilish Lund - if that were possible!
  • Additionally there is a full time Key Worker Nurse Paula Hughes, whose specific responsibility is caring for advanced palliative care patients in the Hospice and
  • Nursing Auxiliary, Tracey Grice, who works in the Clinic for ten hours a week.
Assessments
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



Lymphoedema Specialist Eilish Lund and Nurse Jan Renshaw




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