§ Mr. Tom Levitt (High Peak)Twice in recent years I have suffered from a medical condition that affects around 100,000 men, women and children in this country every year. Its name is lymphoedema and it has a frequent associate, cellulitis. Very few people who have not known the condition in their immediate family would be able to name it or describe it. In brief, it is a chronic swelling due to the failure of the lymphatic system to drain properly.
The lymphatic system pervades our whole body and usually receives only cursory coverage during the training of general practitioners. Usually, when the lymphatic system is working properly, a clear liquid is squeezed from blood capillaries into our tissues by the pressure of the heart's pumping and it bathes all the living cells in our body. That liquid then flows back into the lymphatic ducts and is returned to the blood system through the lymph nodes in our groin, chest and armpits. The lymphatic system is part of our immune system, which is why infection is so common when it is working at less than 100 per cent. efficiency.
It is amazing that so few conditions that affect the lymphatic system are recognised as key areas for medical study or feature in the popular vocabulary. Contrary to the situation in some other European countries, I understand that no specialist lymphological consultants are employed in any hospital or university in this country.
Lymphoedema is typically associated with women who have had breast cancer and have suffered consequent damage to their lymphatic system from the cancer, from surgery or from radiography. It can be a chronic condition or it can be a one-off. It can come and go. The associated infection—the non-specific infection called cellulitis—can be excruciating, chronic and, in some cases, life-threatening. However, the condition is not exclusively related to cancer, as my own experience shows.
One evening in 1995, I developed an inexplicable fever and a terrible feeling of cold. That passed after a few hours, but by the next day a tickling sensation in one leg was followed by a swelling in my calf. By the following evening, a severe swelling and red discoloration of my entire leg had caused lameness. By the third day, the fever had returned, the swelling was worse and red lines were visible all the way up to my thighs, tracking the lymphatic vessels in the general direction of my kidneys. This was cellulitis. I was finally persuaded to see a doctor. I was rushed to hospital. Within an hour, I was completely lame and, by evening, my temperature had reached 104° F. I was given eight intravenous antibiotic injections every day for the next week. It was 10 days before I could walk again and I had to use walking sticks for about six weeks.
Apart from the intravenous antibiotics, the only treatment that I had was to have my leg elevated to help the drainage. I was given no massage, no physiotherapy and no advice on how to prevent the circumstances from arising again. However, at least I recovered. Interestingly, the word lymphoedema was not used throughout the period that I was in hospital.
65WH In the middle of the general election campaign, it happened again. One afternoon, at 12.30 pm, I felt ill; at 2.30 pm, I phoned NHS Direct; by 4.30 pm, I had been diagnosed with cellulitis again and was back in hospital; and, by 6.30 pm, I was having intravenous antibiotics and my temperature had shot up yet again. However, this time I had recognised the symptoms and taken swifter action. NHS Direct had done its job and, although the symptoms were just as bad as before, at least my recovery time—just two or three weeks—was significantly faster.
Since that time, I have altered my lifestyle a little. I pay a sports masseur for a deep lymphatic massage two or three times a year. She often reports fluid retention that I was not aware of in my leg, and she shifts it manually. I have regular pedicures to keep the skin of my feet supple and to prevent it from cracking—which makes it more difficult for microbes to enter the skin.
Two episodes of cellulitis linked to lymphoedema have scared me so much that I do not want to go through that again. I am more acutely aware that lymphoedema is a chronic condition and a fact of life for some people and that cellulitis is therefore a constant risk.
I do not want to criticise the medical staff who treated me but I now understand the concerns of bodies such as the lymphoedema support network, which is a voluntary sector organisation that advocates and encourages self-help for lymphoedema sufferers and campaigns for better medical understanding and care. Most of its work is done with chronic lymphoedema sufferers. It believes that insufficient is being done to counsel sufferers on ways to avoid flare-ups of lymphoedema or cellulitis. It believes that the non-specific bacterial infection that causes cellulitis never really goes away in many cases. It also believes that there is widespread ignorance of prophylaxis in the medical professions.
For example, the network advises lymphoedema sufferers to keep a two-week supply of antibiotic tablets handy to treat cellulitis immediately, if it arises. However, it is very rare to find a general practitioner who will prescribe antibiotics under such circumstances.
The Under-Secretary of State for Health, my hon. Friend the Member for Salford (Ms Blears), in a written answer last year said:
specialist nurse training"—for lymphoedema—is carried out mainly in the charitable sector by organisations such as Macmillan Cancer Relief and Marie Curie Cancer Care."—[Official Report, 23 November 2001; Vol. 375, c. 570W.]That reflects the high incidence of lymphoedema among cancer patients, and especially the one in four breast cancer patients who suffer from it. There is increasing evidence that prostate and gynaecological cancer patients are at a significant risk of lymphoedema and cellulites, although cancer specialists in our hospitals have little professional expertise in treating lymphoedema, with a few notable exceptions. People who have had their spleen damaged or removed are under an equivalent risk of the condition and the infection. However, private health insurers avoid lymphoedema and cellulitis like the plague, and people who suffer from the conditions find it very difficult to get private health insurance.66WH About 1 per cent. of pensioners in this country suffer from swelling that could be treated by specific physical therapy designed to improve lymph drainage, such as massage. Diuretics and prolonged treatment using pressure pumps are often wrongly prescribed by GPs to treat such swelling. They can, and do, cause further damage to such patients. Too many patients find that lymphatic clinics are simply not available, and even if they are, consultants and GPs alike are not always aware of their existence and do not routinely refer lymphoedema patients there.
A week's occupancy of a hospital bed taking antibiotics intravenously—as I did twice—is a very inefficient way of treating a condition that is relatively simple to avoid and of which it is relatively easy to identify high-risk patients. The present reactive response of treating the condition after it has arisen rather than preventing it makes no sense from a cost perspective. I might add, to give an international scale, that elephantiasis—the Minister will be familiar with it—which is a swelling of the legs commonly associated with water-borne tropical diseases, is an extreme and chronic form of lymphoedema that causes permanent changes to the tissues of the limbs and affects about 40 million people throughout the world.
The British Lymphology Society says that the treatment of lymphoedema should be relatively simple. It should consist of skin care to maintain good tissue condition and to reduce the risk of infection. External support and elastic compression garments, which can he used throughout the entire life of a person with a chronic condition, should be used to reduce lymph formation and to enhance its drainage capacity. There should be a programme of exercise to maximise lymph drainage without overexertion. Lymphatic drainage by simple hand movements that are designed to be easily accessible to patients and their relatives should be taught, because that allows people to self-massage to keep the lymph flowing. There should be prompt administration of antibiotics to cure cellulitis and to ensure that, if there is the risk of recurrent attacks, a prophylactic approach of taking antibiotics in advance of the problem arising should be adopted.
Clinics with experience of treating lymphoedema are listed on the BLS website. In the whole of Greater Manchester, only three national health service facilities are listed—predominantly associated with cancer—and only two in my county of Derbyshire. Lymphoedema patients who do not have cancer may not have access to the people who are likely to be able to refer them with knowledge to the correct clinic for the correct treatment. Every general practitioner's surgery should be able to offer such good quality advice to patients with lymphoedema, but that is not the case.
I end by putting seven specific questions to my hon. Friend the Minister. Why are statistics related to lymphoedema not collected centrally and not maintained by the NHS? Why is there no official NHS guidance on the treatment of lymphoedema? What plans does he have to ensure that lymphology has a higher profile in terms of GP training and academic research, perhaps through the creation of a chair of lymphology at a major training institution?
Will lymphoedema be specifically included in the preparations for the national service framework for long-term conditions, and, if not, why not? Is my hon. 67WH Friend satisfied that the onus for medical care of lymphoedema patients appears to rest on nurses and the charitable and voluntary sectors rather than GPs in the NHS? Do patients receive specific guidance to access nurse services?
How can additional funding be provided not only for the treatment of lymphoedema, but for advice? The lymphoedema support network itself could be funded—it receives some 2,000 referrals for advice each year but has no statutory funding. The number of referrals is a fraction of the estimated 100,000 people who suffer from the condition each year.
I thank my hon. Friend the Minister for his attention in the debate. He will know that lymphoedema is a major concern to many people. However, it is largely ignored by a medical establishment that simply does not find the condition sexy enough to develop a proper strategy for patients who are at risk of, or suffering from, a condition that is at best uncomfortable and unpleasant, and, at worst, very dangerous. Having suffered the condition myself, and knowing the pain and discomfort that it can bring over a long period, I hope that my hon. Friend the Minister will respond positively to my points.
§ The Parliamentary Under-Secretary of State for Health (Mr. David Lammy)I commend my hon. Friend the Member for High Peak (Mr. Levitt) on securing this debate. All hon. Members will be sorry to hear that he suffers from lymphoedema. He describes in the most moving way how distressing the disease can be as well as the pain and the swelling of the limbs and the body that go with the complaint. There are many types of lymphoedema, including primary and secondary. The lymphoedema support network estimates that 2 per cent. of the United Kingdom population could be affected. My hon. Friend draws attention to the website.
There is currently no cure, but lymphoedema can be well managed with appropriate treatment. As my hon. Friend explained, such treatments consist of a combination of skin care, exercise, massage and compression garments or bandaging. In a few cases, it is possible to help surgically, for example, by transplanting lymph vessels.
My hon. Friend asked why we do not collect and maintain statistics on individual conditions such as lymphoedema. I understand why he, other hon. Members and voluntary organisations would like to have such information. However, I am sure that he will appreciate that we do not ask the NHS to compile such statistics because of the enormous range of conditions and diseases that exist.
§ Mr. Deputy Speaker (Mr. Edward O'Hara)Order. I ask the Minister to speak nearer to the microphone, as the Hansard reporter is having difficulty in hearing him.
§ Mr. LammyThe administrative burden of developing and maintaining a conditions database would be huge and tremendously expensive, and it would divert energy and resources away from the main function of the NHS, which is treating patients.
68WH However, we do have some statistics on finished consultant episodes of lymphoedema that I can share with the House. A finished consultant episode is defined as a period of patient care under one consultant in one health care provider. The figures do not represent the number of patients, as one person might have several episodes within a year, but they show that since 1996 there have been around 2,000 such episodes a year.
Treatment for lymphoedema is generally seen as a supportive therapy. Good management will enhance the patient's quality of life and reduce morbidity. The condition can include infection, which sometimes leads to prolonged hospital admissions.
§ Mr. LevittI am sure that my hon. Friend would wish to confirm that consultant episodes are a very small minority of all of the episodes, the vast majority of which would never reach consultant stage.
§ Mr. LammyMy hon. Friend is correct. The condition pertains to both secondary and primary care. The information that the NHS currently collects shows that 2,000 people receive secondary care, so it is clear that that figure represents less than the overall total.
My hon. Friend expressed concern about the fact that nurses are largely involved in the care of patients with lymphoedema. I think and hope that he will agree that once the initial diagnosis is confirmed, nurses should be able to manage the day-to-day treatment of patients with lymphoedema—or of some of them, at least. However, there will always be support from doctors, if that becomes necessary.
After diagnosis, patients will be able to access the full range of appropriate NHS services. If that is not the case, it is important that all of our constituents ensure that they are communicating with our new primary care trusts. We have devolved power in the NHS to those local trusts and they should be ensuring that the ranges of services from primary care through to secondary care, and their relationships with local hospitals, are bearing dividends for patients with this chronic disease.
My hon. Friend talked about poor service provision in the NHS. We start from a particular base, and I hope that the extra resources that we are putting into the NHS—such as the £40 billion that my right hon. Friend the Chancellor announced earlier this year—along with the reform, will bring better services across the board for patients with lymphoedema, and for others. That is our wish. We are all proud of our NHS, but it can do better.
I am, however, pleased to say that there are many examples of good practice throughout the country. I will mention two. In 1997 a clinic was established at St. George's Healthcare NHS trust to treat patients with primary lymphoedema and cancer. Other clinics in south-west London treat patients with cancer and lymphoedema, but the St. George's service also meets the particular needs of patients with non-cancer lymphoedema. St. George's provides a specialist service and receives nationwide referrals. That trust is also one of the places where academic and epidemiological work related to lymphoedema is progressing, including a recent study run by the lymphoedema epidemiology project group. Another good service is based at Arthur Rank house in Cambridge, where lymphoedema services are provided for patients with primary, secondary and palliative lymphoedema.
69WH My hon. Friend asked for guidance on the treatment of lymphoedema to be made available to the NHS. I sympathise with that request. Although lymphoedema is a condition that is well understood and managed in the NHS, extra guidance would help raise the profile of that condition.
The National Institute for Clinical Excellence is currently developing guidance for supportive and palliative care as part of its cancer service delivery programme of work. That will provide guidance on best practice in supportive care for all cancers. The areas covered will include evidence-based recommendations for supportive care networks; information delivery and communication; inter-professional communications; symptom control and access to specialist palliative care. The guidance will underpin the development of supportive and palliative care strategy, which is one of the national cancer director's top priorities. It will complement the guidance relating to the current programme of cancer service delivery that covers the treatment of the main tumour groups. The guidance will help people with primary and secondary lymphoedema. I also understand that the British Lymphology Society has produced guidance on the use of manual lymphatic drainage and simple lymphatic drainage for lymphoedema, which can be downloaded from the BLS website. There is also a useful section on lymphoedema on the NHS Direct website.
My hon. Friend mentioned raising the profile of lymphology through GP education and academic research. I hope to deal with research later on, but I agree that the availability of appropriately trained staff is one of the key determinants of the quality of the care that a patient receives. Medical education is a continuum that begins at medical school and continues through basic and higher training and beyond through continuing professional development. Most doctors who are trained in the UK will work primarily in the NHS, so it is essential that the priorities of the NHS are identified and integrated throughout the training continuum. I hope that my hon. Friend will agree that the responsibility for the content, standards, management and delivery of medical education is properly shared between the professional regulatory bodies and others.
It is not practicable or possible, nor is it desirable, for the Government to prescribe exactly the training that each doctor should receive. There is no syllabus for general practice training. The training that each GP receives depends on the case mix and the patients that he or she sees during their time as a general practice registrar. Training for GPs will, however, always deal with a broad spectrum of health problems and will include information about the treatment and management of patients, their families and their carers. I am, as I have already said, sympathetic to what my hon. Friend suggests and I recommend that he take the matter up with the Royal College of Physicians. I can, of course, make a copy of this debate available to that society.
I have heard what my hon. Friend said about research. Recent research that has been carried out in Australia into the molecular mechanisms that control blood vessel growth has led to the identification of molecules that also regulate development and growth of the lymphatic vessels. That is generating a great deal of interest in the molecular control of lymphatics.
70WH I hope that, over time, such research will provide a breakthrough in the understanding and treatment of lymphoedema. We must be realistic about such a process, however, and make sure that people understand that scientists are not offering immediate solutions. That research approach is no magic wand and it may be some years before an effective drug becomes available. Nevertheless, it is an important development and we remain in close touch with what goes on throughout the world.
The main research agency in this country through which the Government support medical and clinical research is the Medical Research Council, an independent body that receives grant in aid from the Office of Science and Technology. The MRC is not currently funding any research into lymphoedema. It did, however, fund a two-year trial entitled "Hyperbaric oxygen therapy for chronic complications of radiotherapy in breast cancer patients". The trial ended in December last year and it is being followed up.
Since 1997, more than 30 research projects on lymphoedema have been carried out within the national health service or are ongoing. The largest of them are funded by charities, in particular, the Wellcome Trust. The Department meets the costs to the NHS in supporting the research. The remainder are carried out in-house with no direct funding. In addition, the Engineering and Physical Sciences Research Council has recently awarded a grant of £262,225 to the Institute of Cancer Research. The project will develop advanced imaging techniques for the clinical assessment of lymphoedema and tissue fibrosis that occur as side effects of breast cancer treatment.
The MRC always welcomes high-quality applications for support into any aspect of human health, including lymphoedema. They are judged in open competition with other demands on funding. The MRC does not as a rule earmark funds for particular topics, such as lymphoedema. When appropriate, high-quality research in all areas that the MRC is promoting may be given priority in competition for funds, but research excellence and importance to health will continue to be the primary considerations when making funding decisions. I will ensure that the chief medical officer brings the debate and my hon. Friend's request for more research into lymphoedema to the attention of the Medical Research Council.
My hon. Friend asked whether lymphoedema would be included in the national service framework for longterm conditions. National service frameworks are set out in the White Paper "The New NHS", and they are intended to set national standards and define service models for particular services or care groups. The NSF for long-term conditions will have a particular focus on the needs of people with neurological conditions and brain and spinal injury. We are also clear that that NSF must tackle some of the generic issues that affect a wide range of people with long-term conditions as well as their families and carers. It will not address lymphoedema directly, but the NSF is likely to set some general standards that will improve the quality of treatment and care for all people with long-term conditions.
71WH My hon. Friend asked about sources of funding for voluntary sector organisations. The Department runs an annual award scheme, the section 64 general scheme, which represents the greatest single source of financial support that the Department provides to the voluntary sector. The closing date for this year's exercise has now passed, but there is nothing to stop voluntary organisations active in lymphoedema from applying in 72WH next year's round. In 2001–l02, 575 grants totalling £21 million were awarded to about 400 voluntary organisations.
I hope that my hon. Friend will agree that we are providing services that help patients cope with lymphoedema and that developments in research offer some hope for the future.
Question put and agreed to.
Adjourned accordingly at one minute to Two o'clock.