Towards a national framework for lymphoedema management - Winter 2001National drive to improve lymphoedema services - Autumn 2001Zoë Wanamaker becomes LSN Patron - Summer 2001Wellcome Trust award nearly £700,000 for Lymphoedema research - Summer 2001Questions & Answers - Professor Peter Mortimer - Sent out with Summer 2001 issueShipshape and Bristol fashion at St Peter's Hospice Lymphoedema Service - Spring 2001Back to index of all previous articles|
WINTER 2001 ISSUE Towards a national framework for lymphoedema management Improved recognition of lymphoedema is in prospect following new research funding; Professor Christine Moffat & Professor Peter Franks talk to Lymphline about their project. As a patient suffering from lymphoedema, you will have a deep understanding of your condition, and how it affects you and those around you. Yet, it was the realisation that few health care professionals had even a basic understanding of lymphoedema that led us to try and describe the problem in order that we could fight for better services for people living with this condition. As researchers and clinicians we have been working for over ten years with people suffering from leg ulcers (wounds on the leg that fail to heal). During this time we have struggled with a condition, which like lymphoedema is not well known, in order to offer improved care. On the way, we learnt many lessons about the need to raise the profile of the condition in order to improve provision of care. We began working with Professor Peter Mortimer in 1996 in the joint leg ulcer clinic at St George's Hospital. As we developed this partnership, we became more and more aware of the difficulties that lymphoedema practitioners and patients had in accessing appropriate care. Two and half years ago we decided to develop a strategic plan to improve this situation. The very first priority was to try and understand the impact of the disease on patients, and their experiences of treatment.We then tried to estimate the size of the problem in the UK. We needed to understand how care was delivered and why there were deficits, while at the same time recognising that there were many areas of good practice. Why do we need to do this kind of research?
How did we undertake the research?
What we found
Where we are now.
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AUTUMN 2001 ISSUE National drive to improve lymphoedema services Political lobbyist and LSN member Clare Cox heads major campaign for better services for lymphoedema patients. Clare Cox is a political lobbyist and public affairs consultant; she is also a lymphoedema sufferer and LSN member. She was diagnosed with lymphoedema of the lower limbs two years ago at the age of 25. Whilst her lymphoedema is now under control and her quality of life much improved, she has been left with a feeling of frustration and resentment born when she discovered how difficult it was to obtain specialist care in Britain. She became determined, she says, to use her own professional lobbying skills to help achieve radical improvements in the standards and availability of lymphoedema treatment in the UK. And, not just aimed at medical professionals but also at members of parliament and government ministers - the arena of power where opinions are influenced, budgets created, and where her own expertise was at its strongest. She asked the LSN if she could help to devise a strategic public affairs programme. Given enthusiastic approval by LSN's Trustees, the result is a powerful lobbying campaign that is already under way and now needs the help of every LSN member to ensure its complete success. The basic aims and how you can help
The campaign's first phase strategy has three elements and the first of these, directed at Members of Parliament, is where LSN members can play a vital role by writing to their local MPs asking them to raise with the Secretary of State for Health the crucial issues of levels of funding and availability of treatment. A suggested draft letter is enclosed with this issue of LymphLine and members can of course tailor the letter to suit their own circumstances. However, Clare Cox does advise that consistency of approach is the key to maximum effectiveness with such lobbying, so members should stay with the basic arguments if they can. The name of your MP can be obtained from your local library or town hall. The second element of the campaign is underway already and this is to encourage health professionals to write to the Health Minister, Yvette Cooper, asking her to refute her recent statement denying the existence of a causal link between intravenous treatment and the onset of lymphoedema following treatment for breast cancer. The third element of the campaign, and this will be starting soon, is the mailing of general briefing letters to all relevant Ministers, officials and parliamentarians who have responsibilities or a particular involvement in related policy areas. The widespread lack of knowledge by too many in the health and medical world is as serious as it is unacceptable. Too many clinics are having to reduce their services because of budget reductions and there are large areas of the UK that continue to have no treatment at all. Participating in the LSN lobbying campaign is an opportunity that the membership has never had before - to do something really positive in order to improve matters. So please send off your letters and support the LSN in this major drive towards recognition by governmental and medical authorities alike that lymphoedema is a serious condition of national consequence that deserves and demands urgent and substantial assistance.
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SUMMER 2001 ISSUE
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SUMMER 2001 ISSUE Wellcome Trust award nearly £700,000 for Lymphoedema research LSN Chief Medical Adviser Professor Peter Mortimer comments on recent major breakthrough in research funding. Professor Peter Mortimer, ably supported by Professor Rod Levick at St George's Hospital Medical School have, for ten years, been trying to unravel the conundrum of lymphoedema following breast cancer treatment (BCRL). The traditional (and accepted) view of cause has been that the necessary surgical removal of lymph glands from under the arm, together with radiotherapy, result in obstruction of lymph drainage from the arm. If this was the explanation, why is it that all women do not develop swelling and why is BCRL so unpredictable? Why is there often such a delay in onset (from the time of the cancer treatment)? Why do some women have the hand affected while in others the hand is totally spared despite swelling of the forearm and upper arm? Research work funded by the Wellcome Trust (1992-95) and the Medical Research Council (1996-99) and principally performed by Dr Anthony Stanton in Professor Mortimer's laboratories has shown that a simple "stopcock" explanation for BCRL is almost certainly not true. We have shown essentially that lymph flow, while reduced in parts of the arm subjected to swelling, is not impaired (and may even be increased) in parts of a swollen limb where oedema is absent, eg: the hand. We have also been unable to demonstrate any lymphatic abnormality in the skin of breast cancer patients unless oedema is obvious. This suggests that BCRL cannot be explained simply by lymphatic obstruction under the arm affecting the entire limb. A more complex mechanism emerges involving regional differences in lymphatic function within the limb, possibly arising from local failure of lymph vessels and re-routing of lymph through different tissue compartments. eg: skin and subcutaneous tissues. Professor Mortimer's team are now seeking to investigate what happens deep in the muscle of the forearm after breast cancer treatment as well as whether any lymph fluid can escape via other routes, eg: the blood stream, and so prevent swelling. The team have been awarded a large Programme Grant by the Wellcome Trust totalling £697,382 over a five-year period. Not only does this secure the team's future work in this area but it is a recognition by the Wellcome Trust of the importance of lymphoedema - quite an achievement!
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SENT OUT WITH SUMMER 2001 ISSUE Questions and Answers The LSN's Chief Medical Adviser, Professor Peter Mortimer, MD, FRCP Professor of Dermatological Medicine attended a meeting in March 2001 at the Royal Marsden Hospital Chelsea and answered members' questions. Question: In Scandinavia they are using liposuction to treat lymphoedema - do you have any information on this treatment? Answer: The process involves inserting a hose under the skin and suctioning out as much as possible. I don't know any patients who have had this treatment and therefore I haven't got first hand information, but I do know it can be a troublesome procedure sometimes needing blood transfusions because of excessive bleeding during the operation. However, the 100% volume reduction claimed is very impressive when dealing with severely swollen arms following breast cancer and the plastic surgeons are of course very pleased with these results. It is essential to wear compression garments afterwards, for 24 hours a day indefinitely, or the swelling just comes back again. They have also tried the procedure on legs but it does not seem to control the problem as it does for the arms. It is basically a crude debulking operation which I suppose is a possibility to consider if you have a huge arm that is not responding to physiotherapy, but there is nobody in this country at the moment doing liposuction for lymphoedema and in my view it is not the future solution to managing lymphoedema. Question: Can this procedure be used to help patients with lipoedema? Answer: Lipoedema is a condition peculiar to females where you get fat excessively deposited on the legs, from the waist down to the feet (but not affecting the feet). This is not caused by obesity or overeating and can come on at the time of any hormonal change, e.g. puberty, pregnancy or even at menopause. The treatments used for lymphoedema are not very successful in treating lipoedema and patients often consider liposuction. I do not recommend liposuction and neither do most plastic surgeons because it is difficult to treat a large area. Essentially, liposuction doesn't work well on the legs for either lipoedema or lymphoedema. Question: What is the correct treatment for lipoedema? Answer: I am very frustrated with the treatment for lipoedema and have found it a more difficult condition than lymphoedema. Many of the patients I see are young women in their teens and it is a very distressing condition for them. It can also be very painful, which is not usually the case with lymphoedema. There is a fluid component to it which can get worse over the years, becoming true lymphoedema in addition to the lipoedema. It is possible to clear the fluid with lymphoedema treatments, but this will not make a difference to the fatty deposits. A low fat diet is usually recommended but lipoedema is fat deposited for reasons other than overeating. The patient can go on a very strict diet, lose a lot of weight on the face, arms and body - in fact everywhere else except the legs. Then when they put back the weight, it goes onto the legs. The problems of funding also mean that there is no research being done into the condition and therefore there is a complete lack of information and help. Question: Do you have results of the Marsden study into Hyperbaric Oxygen Therapy? Answer: No, not at the moment, although I am very involved with the study which requires entering a depth chamber as though you are descending to the bottom of the sea. The research project has come from the Royal Marsden and the principal investigator is Dr Yarnold, who has obtained funding from the Medical Research Council. Essentially the study arose out of observation of three breast cancer related lymphoedema patients who had severe fibrosis (scarring) from radiotherapy many years ago. They noticed that the high concentration of oxygen delivered during hyperbaric oxygen trials had an effect on the fibrosis and in some cases the lymphoedema got better. At the moment patients are undergoing trials to see if there is any benefit from this treatment and until all tests are completed no results will be available. Question: Professor Mortimer, how is your own research progressing? Answer: When I first started investigating breast cancer related lymphoedema, about ten years ago, I managed to get money together for my first PhD student, David Bates, who I am pleased to say is still involved with breast cancer related lymphoedema. Now I am much more knowledgeable but not sure that I am any the wiser as to what it is all about! The complexities of lymphoedema have certainly come to the fore with the studies we have done. For the first six years we spent most of the time looking at the blood vessel contribution to arm swelling. What I usually say to patients is that "what goes in must come out" and fluid comes in through the blood and leaves via the lymph. We have been looking at what factors influence the way fluid is filtered from the blood vessels and have been making sense of a lot of conflicting results. The past three or four years have been spent looking at the lymph drainage. You might say "why didn't you look at lymph drainage first?" and the answer is because it is very difficult to look at lymph drainage from an absolute measurement point of view and gradually we have been improving the tests to do this. What we have shown is that with breast cancer related lymphoedema the principle of there being an obstruction under the arm as a result of lymph glands being removed or irradiated is almost certainly not the case. There is no evidence to support the view that lymph flow is obstructed. We are finding that the lymph has been diverted and in being diverted, particularly to the skin and the subcutaneous levels, a chain of events has been set off that bring more blood vessels and more fluid, so that it becomes an overloaded system rather than an obstructed system. That's the simplest answer I can give at the moment because every time we do a study we answer the question posed but then throw up three more questions and we go on to the next stage until the jigsaw starts to fall into place. At the moment we are at the point where we have gone away from thinking there is an obstructed system to thinking of a diverted system which causes a knock-on effect which then gives rise to the lymphoedema. Some say "why can't you unblock it or drain the fluid off?" but it doesn't work that way because other knock-on effects have created the problem that is the lymphoedema. Changes in breast cancer treatment have also complicated the picture. For example, in the 1970's surgical treatment mostly involved radical mastectomies when the whole breast, the muscle and all sorts of things were removed. Swelling of the trunk or the shoulder were rarely seen and swelling was mostly confined to the arm. Now, since more conservative surgery and radiotherapy are used, we are seeing much more body, breast and shoulder lymphoedema and, again, I think this indicates that there is a problem with the diversion of the lymph and the way that the tissues are reacting to it. Question: What relationship is there between angiosarcoma (cancer of the blood vessels) and lymphoedema of the body. Is there any treatment other than MLD? Answer: Angiosarcoma is a cancer arising specifically from the lining of blood vessels or lymph vessels. It can arise just out of the blue and for no obvious reason or long term after radiotherapy and very very rarely with lymphoedema that has been untreated for 25 or 30 years. But I must emphasise that it is extremely rare and I have only ever seen about four or five cases. The treatment is basically surgery and depends on how quickly it is diagnosed and how extensive it is. Question: Primary lymphoedema - would breathing exercises and yoga help people with lymphoedema? Answer: I can't tell you a lot about yoga, but whatever type of lymphoedema you have I don't see a problem with it. As far as breathing is concerned, I do believe it is very important for lymphoedema and lymph drainage. You will find that MLD therapists do teach correct breathing but in general I don't think lymphoedema therapists emphasise correct breathing as much as they should. It is interesting that you asked about breathing because my mentor from Oxford, Professor Ryan who first got me interested in lymphatics, wrote to me about references on breathing and lymphoedema and they are very difficult to find. I suspect there is very little hard evidence, but common sense tells us that breathing must be important because lymph drains according to pressure gradient changes and breathing is actually the most important influence on pressure gradient changes in your chest and abdomen. Question: What do you mean by pressure gradients? Answer: In your house, water comes out of the taps because your water tank is in the roof, which creates a water head pressure - that is the pressure gradient from the tank in the roof to the tap - ensuring that the flow goes in one direction. But if your tank were put in the basement, no water would come out. So, when you breathe in you are actually reducing the pressure in your chest, which to some extent sucks blood and lymph up into this area; the diaphragm goes down increasing pressure in the abdomen. It is the changing of pressure intermittently in different chambers that encourages the flow, then stops the flow and so on according to the cyclical effect of the breathing. So it must help, but actually it is very difficult to find proof of that in the medical and scientific literature. Question: Are aerobics good for people with lymphoedema? Answer: Aerobic exercise is good from the point of muscle activity, and your lymphoedema therapist will tell you that exercise and movement are very important. When a muscle contracts it puts pressure on a lymph vessel locally and empties it, and when the muscle relaxes the lymph vessel opens up and invites more fluid into it, whereupon the muscle contracts again in a cyclical nature and squeezes the lymph vessel again. That happens within muscles but it also happens to some extent in close proximity to the muscle. The thing to remember about exercise is that once a muscle gets tired it calls up more blood - and if it calls up more blood, it calls up more fluid - and then the benefit of improved lymph drainage is outweighed by too much fluid flooding into the system to help the muscle because it needs more oxygen. This is why we say gripping muscle action is not good - carrying something heavy is a classic example. It is a bit like holding your arm out in front of you - you can do this with your good arm, not your lymphoedema arm. After a while if you grip hard it aches because the muscle is not getting any oxygen and is not clearing out any lymph, so it starts to hurt. Then you relax and more blood suddenly floods back into the muscle because it has been struggling, and so more fluid also goes in. It is important therefore that any exercise is a controlled and relatively gentle cyclical movement that does not overtire or overstrain the muscles or sustain muscle contraction, because that calls up too much blood and is counter-productive in improving lymph drainage. Question: Following a mastectomy/breast cancer, is there any association with post- operative drainage and subsequent arm lymphoedema? Answer: When someone has had breast cancer treatment and mastectomy, and lymph glands have been removed, it is not unusual when the drain is removed 3-5 days after the operation that a collection of fluid the size of an orange will develop. The fluid is lymph and this lymphcyst (or seroma) indicates that the lymph cannot find its way out easily but in fact if it is left it does tend to disperse naturally anyway. I've always hypothesised that it must be a risk factor for lymphoedema, but actually when we look at a series of patients the relationship between the development of the lymphcyst and subsequent lymphoedema seems very poor. I think the condition probably resolves quicker if you keep syringing to empty them, but the poor patient sometimes has to have this done many times and I think it would be preferable for the breast cancer team to put adequate pressure on the area to discourage filling up again. Question: Is MLD treatment more beneficial than compression bandaging for genital lymphoedema? Answer: Genital lymphoedema can affect males and females and I call it a mid-line lymphoedema because it needs a completely different approach than treating an arm or a leg. It can develop for no obvious reason, when we call it primary genital lymphoedema, or it can occur following cancer treatment - so bladder, prostate or any cancer in that area can damage the lymph system and allow the fluid not only to accumulate in a leg but also in the genitals. It is problematical because of the difficulty of exercising or bandaging the area and MLD is really the only thing that is going to help disperse the lymphoedema. Once the swelling has gone down, it is important to be alert to other factors that can sustain the lymphoedema, such as inflammation or infection. It is an area not dissimilar to the breast as it tends to be dependent and that always makes swelling sit as a reservoir and be difficult to move, so we do use MLD. But it is still important to wear some degree of support so that you are discouraging new fluid to form and preventing the dependency - the hanging effect that encourages fluid to accumulate. The problem, as we all know, is that there are not enough therapists and the funding is not there to provide it for those who need it. Question: Do you recommend hip or knee replacements? Answer: My attitude has changed somewhat. Previously I was hesitant to recommend joint replacements for patients with lymphoedema because of the problems of poor healing, seepage or infection. But now that the replacement operations are more generally performed, I have begun to see lymphoedema patients who have successfully had it done. And, after all, if your mobility deteriorates, your lymphoedema will get worse, so it's a Catch 22 situation. The big enemy is the danger of infection in the prosthesis. Many orthopaedic surgeons write and ask me what I would recommend at the time of the operation to prevent problems. I say that the antibiotics are crucial and obviously trying to reduce the swelling both before and after the operation minimises problems. We have been trying to audit lymphoedema patients who have had a hip or knee replacement and we would like to know through the LSN of patients who have had this done successfully. Question: Is there a problem having surgery for Carpal Tunnel Syndrome? Answer: Carpal Tunnel Syndrome is when the muscles and the nerve that supplies feeling to most of hand gets trapped in the tunnel at the wrist - or rather it gets pressurised by a build up of tissue or swelling around it and so therefore it is more likely with lymphoedema of the arm. Although an operation is the standard way of dealing with it you can often treat it without going to operation. I have seen a number of patients who have had surgery done without a problem so far as their lymphoedema is concerned, but the carpal tunnel symptoms have tended to slip back again because the relapse rate is higher with lymphoedema than it would be in the general population without lymphoedema. I have seen some work from Scandinavia showing that extension exercises to the wrist can make a difference. Sometimes the problem can settle down of its own accord over a long period of time and certainly MLD might help the inflammatory swelling around the area. Once again it would be helpful to hear from members who have had carpal tunnel whether the operation had been successful or unsuccessful. Question: Is it proven that compression sleeves are beneficial in the long term? Answer: Yes, the principle is sound and proven in trials. What you are doing with compression garments is not to physically squeeze the fluid out, but to provide an outer collar against which muscle movement can massage from the inside so that intermittent muscle activity means the sleeve presses down on the tissues and influences the lymph drainage - and of course MLD gives massage on the outside. The garments also compress any leaky blood vessels and reduce the amount of new fluids trying to leak into the tissues of the limb. Having said that, they are not ideal. They have to stretch in order to get them on, but ideally they would not stretch once they are on the limb except to allow some movement. There is also a lot of skill in fitting them properly or they can make the problem worse - so if you have a sleeve that makes the hand swell, then it is not right for you. They are not perfect but they are the right thing to wear and you should not discard them. Question: How do we persuade doctors to prescribe the right hosiery? Some doctors are only prescribing Boots brands and not Medi Answer: One of the problems is that before 1988 hosiery was only available from the hospital and a GP could not prescribe it for lymphoedema. Now hosiery is prescribable but in order to make it within the limits of the budget the government allows for the prescription, the quality of the hosiery is much less. For example, Medi make a garment that is used in hospitals and they make an inferior one for the GP to prescribe because the government don't cover the costs for a proper garment. There is a skill in getting the right combination of manufacturer and compression class and the choice of whether the garment should be below the knee, above the knee or panty-hose and it is doubtful whether the pharmacist has the training to get this right. It is most important to be fitted for hosiery at a lymphoedema clinic if at all possible and then ask your GP or hospital to prescribe what you need. We are also working to try and get hosiery for lymphoedema patients improved generally. Question: Why do swollen limbs turn blue? Answer: This does not mean that there is anything dangerous or nasty, despite the colour change, and it can happen with all forms of lymphoedema. There is no problem with the veins as such, but for the limb to turn blue, means there is some enlargement in the veins and therefore slow flow in the blood vessels which encourages pooling of the blood, particularly if the limb is dependent (hanging down so that gravity is having an effect) and not allowing the blood to drain quickly and freely. It is similar to being cold when the skin becomes bluish and mottled. The cold narrows some of the blood vessels to try and conserve heat and this slows the flow of the blood, which becomes sluggish so the blood becomes deoxygenated and that is when it goes blue. Lymphoedema allows that to happen more readily, not just when you are cold. Also when hosiery is taken off the limb looks bluish for a while and then suddenly goes red as the blood rushes in. Question: Why does my child with lymphoedema wake up cold at night? Answer: You say your child wakes at night and says she is cold - even in summer? - even under a duvet? I cannot explain that on the basis of lymphoedema and of course it might not be related at all. If anything, lymphoedematous limbs tend to get warmer, not colder, because lymphoedema is not just fluid; there is a lot of deposited fat that has not been cleared away through the lymph drainage route and the fat acts as an insulating layer. Some patients will find that they can actually feel quite warm because the blood flow can be increased, particularly after an infection. So, I cannot give an overall answer here, it depends on the circumstances. Question: Why do red patches appear on the affected limb lasting approx. 30 mins? Answer: I don't know what the cause is, but the diagnosis is nettle rash or hives as it used to be called, and on skin unaffected by lymphoedema it looks like a rash with a white raised central bit (oedema) surrounded by red skin. It causes the blood vessels to release a lot of histamine and makes the skin itch. Like any nettle rash, an antihistamine will damp it down, even if it does not clear it completely. Lymphoedema in my view is more prone to this and it can sometimes be a problem after pressure has been exerted - either from bandaging or hosiery. Sometimes a red blotch appears, which is unlikely to be anything you have eaten and may be caused by pressure changes to the skin which influences the tissues. This is not dangerous and will probably disappear in an hour or two. Question: Are there any major dos and don'ts with lymphoedema? Answer: Everyone will tell you it depends on where the lymphoedema is but most of them are common sense, based on the principles I spoke about earlier, such as: don't carry suitcases; don't have your blood pressure taken on the affected limb; don't have blood taken from that arm etc. It is true, in a limb that is dependent (i.e. hanging down) fluid will just sit there and elevation would help drainage, but it does not need to be excessive. Question: Can diet help or hinder lymphoedema sufferers, e.g. certain foods? Answer: There is good evidence in breast cancer patients that being overweight can increase the chances of lymphoedema and make it worse. The problem is that the Tamoxifen given can cause fluid retention and weight gain both of which are counter-productive to the lymphoedema. But if your weight is correct for you, I am not aware of any dietary influences affecting lymphoedema. There is no evidence that diet will influence lymphoedema in the absence of obesity; but then I don't think there is any research either so that is all we can say at this stage. Question: Doctors advise elevating the bottom of the bed - is this beneficial? Answer: When we talk about elevation, I think you should raise the end of the bed on blocks rather than prop up the mattress or put something in the bed and lift up the limb. It is a question of posture and position; for example, if you want to raise your head and you just put on another pillow, you will probably put a strain on your neck - it is much better to put the feet of the bed onto 4 inch blocks at the head or the bottom, whichever part you wish to elevate. With leg lymphoedema, the swelling only goes down a certain amount overnight and I advise patients to try elevating the bed and find out if the benefit outweighs the discomfort. If you do wish to use bed blocks, they do supply them at Appliance Shops. Question: Has there been any research done regarding taking healthy lymph nodes out, dividing them into four and replacing them where there are bad nodes? Answer: I would not expect that to work because lymph glands don't sprout lymph vessels and the lymph glands are depending for survival on a flow of lymph. If you cut the supply of lymph to a lymph gland, it just shrivels up and goes away. Question: Are diuretics the right thing for lymphoedema patients to take? Why do doctors prescribe them? Answer: I am afraid this is a problem. If you go to your doctor with oedema (for instance swelling of the ankles) the easiest thing for him to do is to write a prescription for a diuretic, which is the proper name for a water tablet. In the beginning you might notice a little difference, but not over a longer period. And of course it is not good for the kidneys over a long period of time. Also it does not improve lymph drainage so it is not addressing the problem that is causing the swelling. There are of course other causes of oedema, for instance heart failure, when there is a reason to take diuretics. Convention in medicine is that for oedema you give a diuretic. We are trying to educate, but it is probably going to take a generation to work this through. Question: Can you sleep with the sleeves on? Are there any dangers from leaving two sleeves on? Answer: We sometimes recommend using a little bit of night-time compression, particularly if the swelling goes down during the day but swells up again at night. The problem is it is not using the hosiery to its best ability because the hosiery is there to enhance lymph drainage through muscle action whereas presumably when you are sleeping you are not exercising very much! It all depends of course on the level of compression you have been given by your therapist, but I would think that with high compression or two layers it would probably be worth taking them off. Question: Is it possible to bandage the torso - midriff? Answer: I'm afraid that is very difficult. I would like to move to a situation where we can provide compression on the trunk, but at the moment it is not possible to do so. I can only recommend applying the principles of breathing, MLD and trying to wear something that does provide a little compression. Question: What causes pins and needles in the affected limbs? Answer: Pins and needles are usually caused by temporarily getting into an awkward position which cuts off the blood supply to the nerves rather than to the arm. If the arm is tingling, it is probably some pressure either under the arm or at the elbow and moving the arm should release it. Question: Has there been any progress in the treatment of primary lymphoedema patients (non-cancer patients)? Answer: I started the lymphoedema clinic at St George's Hospital when the Royal Marsden decided to treat only cancer patients, and it is now mainly a non-cancer clinic. Sadly there are just too few clinics around the country that cater for non-cancer patients, and if you are looking for a quantum leap improvement in treatment and therapy, we have unfortunately not reached that point yet but we are still hoping! Question: What views do you have on vibrating belts for the torso? Answer: When some years ago I looked into the effect of vibration on lymph drainage, I did not find it was very effective, which surprised me at the time. However, with hindsight I realise that vibration, like gripping, is not pushing the lymph in one direction or the other. I cannot really answer the question, but if it hurts then don't do it. Question: Is lymphoedema on the increase? Answer: No, I don't think it is on the increase. In terms of lymphoedema following breast cancer treatment, it is much less severe than it was 20 years ago. The present surgical treatment means that the lymphoedema is not as severe and of course breast cancer patients in the main do have access to lymphoedema clinics. I think that early treatment intervention has made a huge difference because it is better to treat early than try to treat someone where the lymphoedema has been established for 20 years. We know from a recent audit that 30% or one in four breast cancer patients still get lymphoedema to some degree, but it is not as severe as it was some years ago. Question: What is the correct treatment for lymphoedema sufferers? Answer: We have no drug that is very effective, certainly not clinically important for treatment. Surgery is a last ditch resort and, even then, it is not improving the lymph drainage but is purely trying to reduce volume. The correct therapy for the treatment of lymphoedema is a combination of the right exercises and movement, wearing the right compression garments and receiving the right massage. In other words, it is a physical process that we know improves lymph drainage under normal circumstances and also under lymphoedema circumstances. Question: Is there any research related to mammography to the breast? Answer: It is true that mammography does give you quite a bit of radiation, but then this is very little relative to the breast radiation that cancer patients would receive. I have not heard of any research into the breast screening procedure and the pressure it puts on the breast being forced up against the screen. However, there is research going on at the moment in Cardiff into the effects of bras on the development of breast cysts. The principle I assume is that it may limit lymph drainage in the normal breast, encouraging the formation of breast cysts because cysts do contain fluid. Question: Is poor lymph drainage related to lymphoma and leukaemia? Answer: There is no evidence that poor lymph drainage equates with malignancies like lymphoma or leukaemia. This causes a lot of alarm and it is worthwhile making the point because lymphoma is often confused with lymphoedema and the two are quite distinct. |
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SPRING 2001 ISSUE Shipshape and Bristol fashion at St Peter's Hospice Lymphoedema Service LymphLine's Derek Parsons visits a busy lymphoedema clinic in Bristol. With rail travel adding another dimension to "braving the elements" - restricted speeds, signal failures and yet another derailment occurring in the Bristol area the very night before the visit - it was hardly surprising that spirits were flagging when I eventually arrived at the Hospice. Happily, the exuberant welcome that awaited me from Anne Clements and Paula Byrne, who manage the clinic, more than compensated. Lymphoedema Nurse Specialist Clements and Lymphoedema Sister Byrne are both registered nurses with a considerable breadth of experience in cancer and palliative care. Anne Clements founded the original part-time lymphoedema service at St Peter's Hospice in 1993 when she was working in an inpatient unit, and realised the need for specialist care to manage and reduce the incidence of what need not be an inevitable unimprovable side effect of cancer and its treatment. By 1996, Anne was providing a full-time lymphoedema service and was joined by Paula Byrne, who was destined to become her stalwart partner in the development and operation of the clinic. By 1997 both had undertaken specialist lymphoedema training and were providing fully comprehensive treatment for all forms of chronic oedema, including the LeDuc method of MLD (Manual Lymphatic Drainage). The clinic operates in an area where the level of breast care services is excellent and well focused on the management of lymphoedema. Two of the city's hospitals provide primary prevention and the management of mild, uncomplicated, breast cancer lymphoedema. Anne Clements' clinic works closely with the breast care nurses at the hospitals, and any patient who develops severe arm lymphoedema is transferred to the clinic for further assessment and, usually, decongestive lymphoedema therapy. Once restored, the patient is returned to the breast care nurses. A similar practice applies to other medical areas such as gynae/oncology, ensuring that patients receive prompt and high quality care appropriate to their needs. It was clear that the clinic's exceptional involvement and arrangements with these hospitals and other medical professionals in the area is a major underlying strength and a principal reason for its continuing success, despite ongoing funding problems. It has not been all wine and roses though! Their first dedicated treatment room was based in a Portacabin at the hospice's second Day Centre being established in North West Bristol. Although it was basic and makeshift, the two nurses felt they had arrived - which of course they had! Anne and Paula provided all of the rapidly growing outpatient work in the Portacabin until the second hospice building opened in 1998, when they moved into their current clinic. Although their one small room is hardly a purpose-built facility, it is functional and comfortable, but too small for both nurses to work together at the same time. This means that the clinic's work is divided over the two hospice sites, which the nurses say is all right as far as it goes - the trouble is, they add, the two sites are 8 miles apart! In spite of such problems, made even tougher by ongoing financial constraints, the clinic's two centre system provides close, high quality support for the Day Hospices, the inpatient units, the community teams and the ever increasing numbers of outpatients. And, although the base for the lymphoedema service is modest, the clinic enjoys all of the benefits of being part of the Hospice with immediate access to a wide range of services covering physiotherapy, occupational therapy, oncology and palliative medical consultants, social workers and complementary therapists. In addition, a volunteer Vodder therapist, Judith Fox, provides MLD in the Day Hospice, and Vodder training funded by a Millennium Award is being provided for Jayne Moffatt, a volunteer massage therapist. Importantly, there are also five independent, fully qualified MLD therapists in the region to whom patients needing regular MLD treatment are referred. Primary/secondary referrals Whilst the service was founded for cancer related patients only, non cancer primary patients have been treated at the clinic for many years, and these had increased to 24 per cent of referrals by 1999. Although it was decided for financial reasons to curtail the admission of new primary patients from January 2001, the clinic now accepts a total of 30 new primary patients a year provided that the cost of care is met by the referrers. The clinic anticipates that most of the primary referrals will come from the Avon Health Authority and any patients being referred in this way are asked to initiate and establish finding with the referring GP before contacting the clinic. There were 1168 consultations in 1999 which covered lymphoedema outpatient clinics, inpatient units, visits to hospitals and patients' homes and, on average, there are 20 new referrals each month. All of this means that, with 278 patients currently registered with the clinic, ten patients are seen every day, peaking to 14 a day in busy periods. Following their treatment in the clinic, the service is able to discharge patients to their key workers (where available) to provide long-term follow-up. Although individual patients have treatment tailored to their needs, these are usually one hour for an initial assessment, one hour for intensive lymphoedema treatment* and 30 minutes for follow-up appointments. All elements of CDT (Complex Decongestive Therapy) are offered, although pneumatic compression is omitted as little evidence has been found to support its use. During a two-week course of treatment, patients experience on average a volume loss of 30-40% and demonstrable improvements in the areas of pain and function. The physiotherapists accept referrals on an individual basis when problems with limb movement and function are identified and the same applies to any other health professional who the clinic thinks should be involved with a patient's care. The waiting list is two months but more urgent cases can be seen within one week of referral. Somehow the two lymphoedema nurses also manage to find the time and energy to contribute to training programmes covering a wide range of subjects, such as District Nursing, Palliative Care, Oncology, Community Physiotherapy, Community Nursing Forums, Fifth Year Medical Students, and many professional placements from every aspect of health care - all absolutely essential in increasing awareness and understanding of lymphoedema and its treatment. The clinic also runs introductory lymphoedema Study Days and is staging its first Key Worker course next autumn. Hosiery A wide range of continental compression garments are used as no one company has been found that meets all of the needs of patients with a range of conditions and levels of chronic oedema. The majority of the clinic's patients have severe complicated lymphoedema and many need to wear a combination of compression garments to achieve control of their oedema. Custom made garments are used, but only when off-the-shelf garments have failed to produce the desired response. Usually this is when patients have significant body or trunk oedema which off-the-shelf fails to address. Garments are replaced every six months, but only two sets at a time are supplied for cost reasons, except in exceptional circumstances. No charge is made for any garment. It has been noted that the majority of the clinic's patients are either overweight or obese, and the service is investigating the possibility of a link between obesity and lymphoedema treatment and/or a poorer response to CDT. Advice and support is therefore given to patients with regard to weight management. Blood pressure checks have not so far been taken but because of the increasing incidence of obesity, the clinic is planning to introduce routine blood pressure tests and urinalysis to screen patients for diabetes and hypertension. Obesity is increasing worldwide, and faster in the UK than anywhere else in Europe and, because of her interest in the problem, Anne Clements participated in the first National Obesity Conference which was held in London in December. LymphLine is in no doubt that the Lymphoedema Clinic in Bristol is another outstanding example of success achieved in spite of all kinds of problems - some unique to Bristol and others typical of the lymphoedema clinics visited over the last two years. Lymphoedema Specialist Nurse Managers are a unique breed and Anne Clements and Paula Byrne are no exception. They have developed a level of awareness and expertise in the area with a high degree of knowledge and energetic resolve. Their ability to handle well over 1,000 consultations a year speaks for itself, as does their continuing heavy involvement in teaching; and it is clear to LymphLine that it is their ability to develop and maximise the benefits of working closely with the hospital breast care nurses and other medical professionals in the region that is one of their particular strengths. Although both nurses are obviously totally committed to their work, they amazingly still find time for very active private lives with Anne Clements listing making homemade wine, D.I.Y., art appreciation and international travel (India is next). Paula Byrne's private life is pretty well mapped out for her by her three children aged nine, six and four, with the eldest son having just won a bronze medal at the recent British Gymnastics Championships. Very impressed, LymphLine asked whether this put a particular load on her? Paula replied proudly "Well, he does spend sixteen hours a week training!" *Decongestive Lymphoedema Therapy comprises skincare, manual lymphatic drainage, compression/bandaging and exercise.
BRISTOL CASE HISTORY ILLUSTRATES NEED FOR EARLY DIAGNOSIS AND CORRECT TREATMENT The major costs of the lack of knowledge and understanding of the need for the specialist management of lymphoedema are underlined by a case history from the Bristol Clinic. A 30 year old male patient with chronic oedema following cellulitis in his left leg was told to "get on with his life". He received the wrong treatment for eight years, during which time the cost to health and social agencies involved a minimum of £43,000. The leg was grossly distorted and 230% bigger than the unaffected limb. It cost the Bristol Clinic £1,800 to correct the condition. "Even without discussing the effect of all this on a young person's quality of life, the economics of the case", Anne Clements says, "must surely make an excellent basis for lobbying at both public and professional levels." LymphLine thoroughly agrees!
When visiting clinics, the LymphLine team looks out, among other things, for...
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