To ask Her Majesty’s Government whether they will publish a national strategy for the treatment of lymphoedema in the NHS.
My Lords, it is a great pleasure to put the case to the House for the development of a national strategy for lymphoedema services. I thank all noble Lords who have put their names down to speak in today’s debate and the noble Lord, Lord Prior, for responding on behalf of the Government. I pay tribute to the British Lymphology Society and the Lymphoedema Support Network for the tremendous work they do and the excellent briefings they have given me.
Lymphoedema affects more than 200,000 people. It causes swelling of the limbs or body and an increased risk of infection. Although it is a long-term condition that cannot be cured, its main symptoms can, with appropriate treatment, be controlled and often significantly improved. However, it remains an underestimated health problem and many healthcare professionals know little or nothing about how to treat it appropriately. As a result, it has a significant long-term impact on patients’ quality of life and the current disparate and unco-ordinated approach costs the NHS more money in the longer term.
Primary lymphoedema usually develops as a result of a genetic fault within the lymphatic system. With underdevelopment or weakness of the lymph vessels, swelling can appear at or around birth or, more often, later in life. It can affect infants, children and men or women of any age and often runs in families.
Secondary lymphoedema develops when the lymphatic system is damaged. This may happen following treatment for cancer—surgery or radiotherapy—but may also occur as a result of infection, severe injury, burns or any other trauma. Research has shown that for every cancer-related patient, there are three non-cancer related patients, but a point I stress to the Minister is that non-cancer related patients often struggle to get treatment.
Chronic lymphoedema has been shown to have a significant impact on sufferers, affecting the quality of their lives and causing loss of time from work. There is also a significant cost to the health service for the treatment of the most common complication, cellulitis. This is supported by statements which have been sourced from patients living with the condition by the Lymphoedema Support Network, Breast Cancer Care and Dr Todd. They showed that of the patients surveyed, 80% had had to take time off work for treatment, 8% had had to stop working completely because of their lymphoedema, 50% of patients with lymphoedema had experienced recurrent episodes of cellulitis, 27% of the people with cellulitis required hospital admission for intravenous antibiotics—and I understand that the mean hospital in-patient stay for treatment of cellulitis is 12 days—36% had received no treatment for their condition, and 50% of patients suffered from uncontrolled pain. That statistic is symptomatic of a wider problem of a lack of availability of pain relief in the health service. Here, I pay tribute to the work of the Chronic Pain Policy Coalition.
Professor Peter Mortimer, consultant dermatologist at the Royal Marsden and St George’s Hospitals, London, and the UK’s leading lymphoedema authority, is clear that patients with chronic swelling should all expect to receive, first, an explanation about the most likely cause of their chronic swelling; secondly, prompt referral to a lymphoedema practitioner; thirdly, a treatment programme incorporating the four cornerstones of lymphoedema treatment as appropriate; fourthly, ongoing care according to accepted standards; and, fifthly, the option of additional treatment at intervals as needed. Unfortunately, this is not the experience of most patients and we need to see a step change in approach by the NHS.
Reducing the risk of developing lymphoedema is an essential element of any national strategy. Many groups of potential lymphoedema sufferers can be identified; for example, breast cancer patients and those with several episodes of skin infection. We know that early intervention is the most effective way of dealing with lymphoedema. Good- quality advice and support can help reduce complexity and assist patients to self-manage. Improved access to the correct information, treatment and self-management support could significantly reduce hospital admissions. The extent of treatment needed should be assessed and managed by a qualified lymphoedema practitioner. Long-term monitoring and treatment are subsequently required, with the emphasis on strategies to control swelling and prevent infection.
It is pretty clear that education of both healthcare professionals and potential patients is required to increase awareness and to ensure an early diagnosis and timely referral if required. But the problem is that lymphoedema is not currently included in most undergraduate nursing and medical curricula. Nor does the United Kingdom have regulated education standards for those working in lymphoedema practices. An education strategy is needed to formalise training and to ensure that practitioners are trained appropriately and continue to update their learning and practice. This is particularly important in relation to non-cancer patients. Cancer patients are likely—not always, but likely—to be picked up within cancer services by practitioners who have some knowledge and understanding of the issues, but there is a particular problem in relation to non-cancer patients.
The National Cancer Action Team was asked in autumn 2012 to put together a case of need to inform the development of a lymphoedema strategy for England. A group of clinical experts and representatives of support groups and voluntary sector organisations were invited on to the lymphoedema reference group to undertake the work. This led to the publication in March 2013 by the National Cancer Action Team of an excellent paper which argued the case for a national strategy. It pointed out that existing service provision is not related to the level of patient need, lacks uniformity in approach and ignores the fact that high-quality lymphoedema services can improve outcomes in all domains of the NHS outcomes framework. It described the service as a Cinderella service struggling for recognition. Services are generally small, 36% of them being delivered by single-handed practitioners. As I have already mentioned, there are no key performance indicators or minimum education standards.
The work done for the National Cancer Action team also said that obtaining an accurate diagnosis is difficult, especially for non-cancer related, late onset and children. It warned that lack of early, accurate diagnosis leads to increased complexity and increased costs, some of which could be avoided. It warned also that increases in cancer and obesity will show a corresponding increase in the incidence and prevalence of lymphoedema.
Following the National Cancer Action Team report, the NHS England board was asked to consider developing a national lymphoedema strategy for England, but this has not happened. The National Cancer Action Team has been disbanded and it is my understanding that no formal response has been received from NHS England. Those people who devoted their time and effort to serve on the reference group for the National Cancer Action Team have not even had the courtesy of a letter from NHS England to say what action will be taken. At the very least, someone in NHS England should apologise for that gross lack of courtesy and tell the members of the reference group what is happening. I hope that the chairman of NHS England will take on that personal responsibility.
Since then, very little progress has been made. I know that the Minister is sympathetic to these kinds of issues, which fall between a number of stools. I hope that he will agree to a sympathetic look at my request to take forward a strategy. At the very least, lymphoedema ought to be on the list of prescribed nationalised services and be commissioned at a national level. If the Minister’s response to is to say that it should be left to clinical commissioning groups, it is quite clear that nothing at all will happen. I have said this before: clinical commissioning groups simply do not have the capacity or the wherewithal to deal with a service of this sort. There has to be some kind of national framework or direction.
I hope that the Minister will also agree to look at minimum standards for the training of health professionals and the development of key performance indicators and commissioning guides. If his response is that CCGs will be handed this responsibility, they must have some guidance about what kind of service they should be commissioning.
Finally, will the Minister agree to meet representatives of the British Lymphology Society and the Lymphoedema Support Network, who do so much to raise these issues of concern?
My Lords, I am grateful to the noble Lord, Lord Hunt, for introducing this debate on the subject of lymphoedema, which arises when the lymphatics fail to regulate the fluid balance in the tissue spaces. That results in oedema, usually of the arms and legs. For example, normally in the legs there are four or five lymph channels each measuring one millimetre in diameter travelling up the inside of the leg to the lymph nodes in the groin, and from there they go up into the chest where the lymph is discharged into the veins in the chest.
Lymphoedema can be due to underdevelopment of the lymphatics, known as primary lymphoedema, which usually manifests itself in a person’s 20s or 30s. But if the lymph channels are completely absent, the symptoms of the condition appear much earlier. That is due to a genetic fault. Secondary lymphoedema is where there is a blockage in or removal or disease of the lymphatics, and is far and away the commoner of the two. The blockage can be due to cancer infiltrating the system or to worms—a condition called filariasis, which is quite common in the Far East. It is transmitted by mosquitoes, but noble Lords can be reassured: one has to be bitten many times by many mosquitoes before one gets the disease. The condition is common in Sri Lanka, but in the old days of the British Empire it was pretty well eliminated by reducing the mosquito population, which also reduced the incidence of malaria.
Lymphoedema occurs when the lymphatics are removed in certain cancer operations such as the old radical mastectomy or operations where the lymph node system is removed or reduced. As I mentioned, primary lymphoedema is due to underdeveloped or—rarely—absent channels. The first symptom is a slight swelling of the front of the foot. But if that is not dealt with, the whole leg can become enormously swollen and the skin grossly thickened—maybe as much as a centimetre in thickness. The legs become huge and very heavy, which makes it difficult for the patient to walk. To reduce the symptoms, an operation was designed by the surgeon Mr Charles, where the skin is resected, all the subcutaneous tissue is removed and then the skin is put back. The cosmetic results are not good, but the procedure does enable the patient to walk. That kind of radical surgery is rarely necessary these days.
As the noble Lord, Lord Hunt, has already emphasised, the important point is to have early diagnosis so that the swelling can readily be reduced by elevation and the use of close-fitting elastic stockings. The treatment has to continue for life and it is important that the patient understands this. The elastic stockings have to be applied before the patient gets out of bed, and this requires a lot of attention to detail. It is also important to avoid infections of the skin because they can make the condition worse by interfering with the underlying lymphatics. Elevation, compression, massage and physiotherapy are extremely important.
It should also be stressed that primary lymphoedema due to the genetic affection of the lymphatics is actually fairly rare. People are critical of doctors if they do not diagnose the condition right away, but it should be pointed out that the initial symptoms of puffiness can be due to a hundred and one different conditions. Primary lymphoedema is not often seen in general practice but, as I say, people are critical if doctors do not spot rare diseases immediately. However, a GP may not see one of these cases in a lifetime.
We have heard a lot of discussion about teaching on this subject in hospitals and medical schools. Of course they teach it. Swelling of the ankles is a very common condition and there are many different reasons for it; they are gone into in some detail. Discussion about a national strategy would be interesting, but what one must really emphasise is that diagnosis has to be made early on. There are computer-assisted ways of helping in diagnosis which alert the doctor as early as possible when someone comes into the surgery with, say, a puffy ankle or front of the foot. Diagnosis can be made early and suitable treatment started right away. Lymphoedema of the arms is usually due to previous cancer surgery and is less common today as radical surgery for cancer of the breast has been replaced by more conservative surgery along with radiotherapy and chemotherapy.
Early diagnosis must be encouraged before the swelling becomes severe, and effective treatment must be initiated in the form of elevation, physiotherapy, compression, exercise and meticulous attention to detail to prevent infection. Also, of course, obesity should be avoided; it is the greatest epidemic affecting this country for 95 years.
My Lords, I am most grateful to the noble Lord, Lord Hunt, for raising this issue for debate today. Many people have no idea what lymphoedema is. When I saw that this was to be raised as a Question for Short Debate, over the course of the summer I said to various people, including Members of your Lordships’ House, “I am speaking in a debate on lymphoedema”. The reaction of most was, “What is that?”, and in the case of someone I was speaking to last week, “What a waste of time. Has the House of Lords not got anything better to do than talk about medical things? Surely that is a waste of taxpayers’ money”. I might have added the last sentence about taxpayers’ money, but there was a sense of incredulity that noble Lords would talk about a medical issue. Clearly, we cannot spend all our time talking about specific medical issues, and yet as we have heard, particularly from the noble Lord, Lord McColl, lymphoedema is a lifelong condition that needs greater awareness and earlier diagnosis. Sufferers need to be aware of what needs to be done.
I declare an interest as someone who has secondary lymphoedema. I do not have it from having had cancer but from having had an infection in the foot. Last week, when I told my GP, who has been a doctor for 20 years, that I would be speaking in a debate, he said, “Yours is the first case I have seen of someone with lymphoedema following an infection”. That is part of the problem. A cancer sufferer who has their lymph glands removed is immediately told, “There is the potential that you will get lymphoedema. Here are the things you need to look for”. That will include massage, compression and so on. It is not so easy to diagnose a person who suffers from secondary lymphoedema as a result of surgery.
In my case, the diagnosis came almost by chance, as I was perhaps a bit too vain. My foot was puffy, although not particularly sore and there was not any infection, but I kept going back to the doctor. Eventually, a GP said, “It has been puffy for a year. We will send you for further diagnosis”. I was sent to a lymphoedema clinic in Cambridge. From what I have heard today, Cambridge is clearly a beacon because the clinic has several lymphoedema nurses. They all seem to know what they are doing, whether or not they have been taught to a common framework. The clinic went through the diagnosis and eventually said, “You can go and we will try to find out what the problem is”. The answer was that there are no lymph nodes in my foot because somehow they had been killed.
The formal diagnosis is fascinating but not something that most people will have to go through. Obviously, I went on line to find out more about lymphoedema and began to realise that it is potentially a hugely dangerous, lifelong condition. It will not immediately kill you, so one may understand to some extent those people who said, “Why is the House of Lords wasting its time talking about this condition?”. For most people, it will not be life threatening but the complications need to be considered carefully. If it is not managed in the way referred to by the noble Lord, Lord McColl, there is a danger of severely thickened limbs and loss of mobility. There is also the danger of cellulitis, the repeated need for antibiotics and a potential need for intravenous antibiotics. Clearly, the NHS does not want to have to deal with more in-patients with conditions that are preventable, which is an issue. It is almost impossible to prevent lymphoedema in the first place but there are ways to ensure that its aspects associated with further infection can be minimised.
As someone who was diagnosed in my 30s, I particularly would like to make a case for talking about how we raise awareness for younger sufferers. People may say that being in one’s 30 is not very young but, relatively, if you are diagnosed in your 30s and told that you should wear a surgical stocking—please do not look but I am not wearing my surgical stocking—it is not something that you really want to do. If we think about people in their teens or their 20s being told that they have to wear a compression garment for something that does not immediately seem to be a very serious condition, their immediate reaction is, “Yeah, yeah, maybe”. They will not do it unless someone is able to make clear why it is so important.
There should be greater awareness and information that is not only on cancer sites. When one explores where lymphoedema comes from and what it means, much of the information is on cancer sites, which is also true for the information given to us by the Lords’ Library. Many pages do not come from general sites but from sites associated with breast cancer. You would not think to look there if you had not had breast cancer. The clinic that I went to in Cambridge is collocated in a hospice. Again, you go along and think, “I have a condition that appears to be relatively minor and I’m going along to a hospice”. Again, that was not the best introduction to how to deal with a condition.
The issues that one needs to think about on prevention or ensuring that development does not get worse are ones that most people do not necessarily want to think about on a daily basis. If you have some conditions that you are aware of and you take a tablet every day, that is fine, but to avoid lymphoedema getting worse you need to avoid infection, to ensure that you do not get stung or cut, that you do not do many things that just happen in everyday life. If most people fall over, get a sting or cut themselves, it does not matter: they heal up very quickly. If they have lymphoedema, the potential infection or the sting does not get out of their system. They need to ensure that they minimise the opportunity of that happening. But if you are in your 20s and you want to go off on holiday, you do not want to pack steroid tablets, antihistamines and antibiotics in case you get stung or cut, but those are the sorts of things you need to think about. Something that makes awareness available for young sufferers would be beneficial—that makes GPs think about non-standard sufferers of lymphoedema, not people who have had cancer or cancer surgery.
Would the Minister consider whether manual lymphatic drainage could be part of the strategy? It is an extremely effective way to deal with the symptoms of lymphoedema and to begin to manage the condition. It can go alongside compression. However, it is not always available on the NHS. If you can afford to go to a private practice to have treatment that is fantastic, but ideally it should be available. If there is to be a national strategy, would the Minister consider making manual lymphatic drainage available for those sufferers who would benefit from it?
My Lords, I thank the noble Lord, Lord Hunt of Kings Heath, for enabling your Lordships to discuss this very important and sometimes neglected subject. First, I ask the Minister: why are there national strategies in Northern Ireland, Scotland and Wales for lymphoedema, but not in England? Being Scottish, having been born and lived in that country, but having married an Englishman and living in England, I cannot understand why England is neglecting this very complex condition. England is without doubt more complicated, with so many more diverse sections of the community and with far greater numbers than the other three countries put together.
Lymphoedema is a long-term condition defined as tissue swelling due to a failure of lymphatic drainage. The condition can be inherited, though it is frequently caused by cancer treatments and by parasitic infections, as the noble Lord, Lord McColl, said. Though lymphoedema is incurable and progressive, a number of treatments can ameliorate symptoms. Tissue with lymphoedema is at risk of infection.
For many years, my husband had several complicated long-term conditions after a stroke and after developing type 2 diabetes. He developed cellulitis in both legs, which were hard and swollen, and he got agonising cramp at night. Sometimes he had to go into the local hospital when there was infection. As he was a rather tall, large man, the bed was often not long enough, so often when I visited him his legs were not elevated as they should have been. Whoever I had with me, and I, would elevate his legs on pillows. He hated his depression stockings. I think that there are better devices which might have been better for him. It was an uphill struggle and frustrating. I feel so strongly that with these long-term conditions there should have clear guidelines for hospitals, the community staff and the people at home. Correct management and care are so important and help to alleviate the discomfort of the patient.
To this day, I do not know whether my husband’s condition had developed into lymphoedema. One of the members of the Spinal Injuries Association, a paraplegic whom I knew well, was a remarkable person and a great campaigner for better facilities for disabled people. Patricia got breast cancer and, after her treatment, developed lymphoedema in her left arm. When she showed it to me, the arm was huge and swollen. There needs to be good aftercare for these patients. It seems to be patchy. Patricia died recently but a short time beforehand she took part in the programme “Countdown” and was unbeaten, having won every time.
I hope that one day a way will be found to beat lymphoedema. I ask the Minister: how much training do doctors, nurses and therapists have in treating lymphoedema? How much research is being undertaken worldwide into this most distressing and confusing affliction? I hope that the Minister will give us the satisfactory answer tonight that England will join the rest of the UK in having a strategy for lymphoedema.
The National Health Service should aim for the best quality of care for all long-term conditions throughout the UK. At the moment, it is patchy across the country.
My Lords, while I am not going to pretend to have any deep medical understanding of the problems arising from lymphoedema, I have, as a long-term sufferer from diabetes and a cancer survivor, a great deal of gratitude to our health service in Northern Ireland for having made me aware of the dangers. In fact, although it is not every day I can say so, I am rather proud that, for all the things that we tend to get wrong in my part of the United Kingdom, Northern Ireland leads the way in the diagnosis and treatment of what is an incurable but manageable condition.
This debate has a core issue—national equity. Wales and Northern Ireland have already received permanent, recurrent investment, and Scotland is finalising its work plan. Northern Ireland and Wales have utilised the managed clinical network model, building upon existing services and linking all healthcare trusts to enable partnerships and prevent duplication. This efficient model has facilitated both communication and education strategies, all necessary for a successful outcome. Both services are now award winning and have service users inherent in their advisory groups.
Another key component is that of leadership. I am pleased to say that Northern Ireland has an identified leader, who I am delighted to say was awarded an MBE for her services in this discipline. I welcome her here today. The strategy for England must include a leadership plan in recognition of the complexity of the clinical commissioning group areas of responsibility and the many other stakeholders, such as cancer networks and charitable bodies, that are contributors within this discipline. I am aware that some CCGs have been funded by Macmillan to complete council-wide lymphoedema needs assessments. While this is a great step forward and to be applauded, the project’s remit is for cancer-related lymphoedema only. We must ensure that new service delivery is equitable to all potential patient groups, both adults and children, and not restrict it to cancer-related lymphoedema, which is currently recognised to be the smaller referring lymphoedema group—probably about 25%. Equity at all levels and leadership need to be core to the strategy for England.
Encouraging figures show that in Northern Ireland in 2013-14, 642 patients were able to be discharged, meaning that they were able to self-manage their condition, freeing up important hospital resources. Only around 8% of those 642 needed to be re-referred in 2015—proof of the effect self-management can have on lymphoedema. But early identification would not have been possible without increased awareness of lymphoedema in Northern Ireland. In 2008 an undergraduate programme was developed and piloted in conjunction with Ulster University, where there are now dedicated modules on lymphoedema. This is complemented by regional study days to provide more in-depth learning for those acting as ward or clinic link staff.
It has been suggested that for every £1 invested in lymphoedema treatments in England, £100 would be saved in reduced admissions. The British Lymphology Society has estimated that the National Health Service could save at least £32 million a year by providing a national service. There is a great need for a national strategy in England and to sustain and increase provision of services in Northern Ireland, to create an equitable service across the whole United Kingdom. I do not want to end on a sour note but in the realisation that increasingly in the UK we are finance-driven before all else—so often moral justification seems to be dismissible —it is surely worth investing in a service that literally would show a profit.
My Lords, like others who have spoken, I am most grateful to the noble Lord, Lord Hunt of Kings Heath, for introducing this debate so comprehensively. He gave us a very good tutorial in the pathophysiology of lymphoedema. I declare my interests: I am president of the Chartered Society of Physiotherapy and the clinical lead for palliative care in Wales. I will be speaking about our Welsh service because we have a strategy and people can learn from it, just as the noble Lord, Lord Maginnis, outlined the one for Northern Ireland, where the advances have happened because of having a national strategy, just as we do. Unfortunately, as has been said and as personal stories have outlined, there is inequitable access in England because there is no strategy and there are no NICE guidelines.
What has been our experience in Wales? We published a national lymphoedema strategy in 2009 and invested £1 million in 2011 to focus on a clinically effective service that had to be value for money. There are now 9,300 patients with lymphoedema, which works out at 450 new referrals each month to the service. Fifty per cent are cancer-related and in 93% the lymphoedema is secondary to another cause, rather than being primary lymphoedema. Forty-three per cent of the cases are considered complex or severe and there is a direct correlation with age, 86% of the patients being more than 51 years old.
However, the waiting time has gone down since we have had our strategy. In 2011 it was 24 weeks; in 2015 it is 14 weeks, with 95% of patients being seen within 14 weeks. Palliative patients are seen within two weeks and urgent patients within four weeks of referral. Garment dispensing has radically improved. In 2011, 50% of garments were wrongly dispensed; it is now only 5%. The waiting time for garments has reduced from 42 to 10 days. With our surgeons, we have also been able to develop a unique microsurgical technique, which is a real pioneer and has shown a 96% reduction in cellulitis episodes and a 70% reduction in the need for compression garments. I do not think that investment in research would have happened without the rest of the clinical infrastructure being in place. It is estimated that there has been an overall saving, per patient each year, of more than £9,700, while the national contract for purchasing garments is saving £135,000 annually. The cost pre-service was more than £89,500,000 but post-service it has fallen to £41 million, so there is an annual saving of more than £48,500,000 from having a co-ordinated strategy in place.
Let me turn back to England. It is a myth that lymphoedema is so rare. A recent study by Moffatt and Pinnington noted that almost four in 1,000 people have lymphoedema, which is three times the current estimate. This means that somewhere between 72,000 and 227,000 people in England have it, making an average of somewhere around 700 patients per clinical commissioning group. Cancer-related lymphoedema gets the publicity but is only 25% of the workload. Breast cancer, about which most of the public-facing work in educating patients has been done, actually represents 14% of the workload in England.
One of the difficulties is obesity, which has a serious role. I know that when I was setting up the lymphoedema service in the cancer centre, we would get patients referred and, quite often, their bigger problem was obesity. The lymphoedema was very much secondary to it and almost unmanageable until the obesity was tackled. With the predictions of increasing obesity that is a major problem, as 63% of lymphoedema patients have been found to be obese and 21% severely obese. The noble Baroness, Lady Smith of Newnham, who—for those who cannot see her—is very far from obese, outlined that the patients’ experience is poor. That is borne out by all the other data. As has been said, 80% of people have had to take time off work. Half have uncontrolled pain of some sort and about a third were told that they have lymphoedema but have not received treatment.
There is a lack of a national contract for compression garments, which means that prices are inappropriately high. As the noble Baroness outlined so clearly, patients with a condition that appears to be relatively minor feel quite guilty when they are referred to a service linked to a hospice but are also quite often really scared that there is something else going on that they have not been told about.
Services are spread across numerous sectors and there is currently no audit surrounding the level of practitioners’ training or skills. There are then high knock-on costs from primary care into secondary care. This patchy service has effectively meant that there is discrimination against those with non-cancer lymphoedema, because a lot of services have been set up that are linked to cancer centres. The other problem is that there has been a 2.37% reduction in the lymphoedema workforce from 2010 to 2011. The services that are there are vulnerable as a third of them are run by single-handed practitioners. If that person goes off sick, retires or leaves, there is a tendency for that service to fold.
I suggest that there is a need for a national strategy, which should follow the lymphoedema framework and would: identify those who are at risk and their clear clinical grades; empower people who are at risk of or have lymphoedema to manage their own conditions, which frees them up from dependency on the health service; have integrated community, hospital and hospice services, with high-quality clinical care, particularly for the very early management of cellulitis and erysipelas; provide compression garments—the right ones, properly fitted by people who know what they are doing; and require multiagency health and social care. I would stress that some of the best services around the UK have been led by physiotherapists rather than by clinicians of other sorts. I want to give credit to them, because they really have been pioneers.
As for education, since the BMJ produced a learning module, more than 2,000 doctors have completed it. They have sought this out and recognised that they need to learn about it. The noble Baroness, Lady Masham, vividly described the problems when lymphoedema is not properly diagnosed and treated. The National Cancer Survivorship Initiative has shown how early diagnosis and symptom management through improved access to information and treatment would heavily reduce escalation and the need for hospital admissions, as well as reducing morbidity and complications.
The NHS could save £100 in reduced hospital admissions for every £1 spent on lymphoedema treatments that limit swelling and therefore avoid complications. I understand that England currently spends more than £178 million on admissions due to lymphoedema, with a rise in costs of £7 million from 2013 to 2014, equating to more than 22,904 additional admissions. It is predicted that the NHS, as the noble Lord, Lord Maginnis of Drumglass, said, could save £32 million a year by having a proper national strategy that provides a national service. That would mean that patients have fair access, rather than feeling discriminated against due to either the type of lymphoedema they have or where they live. It just does not make sense not to proceed with a strategy.
My Lords, first, I thank the noble Lord opposite for raising this very important matter. We have had a number of serious contributions to this debate. Like the people that the noble Baroness, Lady Smith of Newnham, spoke to, I had not heard of lymphoedema until about two months ago. The noble Baroness said that they were surprised that we talked about medical issues in the House, but at times I think that we talk of little else. I start by saying that if an apology is due from NHS England, I will raise that directly with Malcolm Grant when I see him next week. I am sure that he will offer one, if it is right to do so.
A number of general issues have come up from the contributions that we have had today. The first is the importance of early diagnosis, which is critical. My noble friend Lord McColl made that point very strongly. That applies to so many issues, not just lymphoedema. The link with obesity is another issue that has come over strongly in the debate today. It is another example of the damage that obesity is doing.
I think that I will pick up most of the issues raised by noble Lords during my speech, but I shall refer back to them as I go through.
It is generally accepted that somewhere between 76,000 and 250,000 people in England suffer from lymphoedema. As we have heard, the condition is caused by abnormal accumulation of lymph fluid in body tissue, which can be the result of a congenital defect or of damage to the lymphatic system or removal of lymph nodes by surgery, radiation, infection or injury. Any medical undergraduate who wishes to get up to speed on this condition should just read this debate. Both the noble Baroness, Lady Finlay, and my noble friend Lord McColl went into the condition in considerable detail.
Regarding the issue of a national strategy for lymphoedema, which is the essence of this evening’s debate, I should first explain to the House that the
British Lymphology Society has submitted a proposal for a nationally commissioned specialised lymphology service to the Prescribed Specialised Services Advisory Group, which I will call PSSAG for the rest of this debate, which is due to be considered at its next meeting on
Ministers established PSSAG in April 2013 to advise the Government on whether certain services for people with rare and very rare conditions are specialised and should be prescribed in regulations for commissioning by NHS England. Section 3B(1)(d) of the NHS Act 2006, as amended by the Health and Social Care Act 2012, gives the Secretary of State the power to require NHS England to commission such services nationally.
PSSAG is a Department of Health-appointed expert committee with membership drawn from a wide geographical spread, involving clinicians, commissioners, independent experts and members of the public. I stress members of the public because we have heard in this debate the power of personal experience from several noble Lords, including the noble Baroness, Lady Masham. Its chair is appointed by the Secretary of State for Health. The chair is Sir Ian Gilmore, who some in this House will know. Sir Ian is a very distinguished gastroenterologist and a former president of the Royal College of Physicians, so it is what I would call a proper committee.
Specialised services are those services provided in relatively few hospitals to small numbers of patients. National commissioning ensures that there are enough centres delivering care to nationally set standards to meet the needs of small patient populations requiring specialist treatment, and that those centres receive sufficient throughput of patients to maintain the expertise of the clinicians operating within them.
The Health and Social Care Act sets out four factors that should be taken into consideration when determining which prescribed specialised services should be directly commissioned by NHS England: first, the number of individuals who require the provision of the service or facility; secondly, the cost of providing the service or facility; thirdly, the number of experts able to provide the service or facility; and, finally, the financial implications for clinical commissioning groups if they are required to arrange for the provision of the service or facility.
PSSAG discusses each proposal with regard to the four factors set out above, but these are not prescriptive criteria or set tests, so there are no particular thresholds which must be met. Each proposal is considered on its own merits, in light of what is known at the time.
PSSAG may also seek advice from professional bodies. It collates all advice on a proposal and then considers the proposal against the four factors. If it agrees that a service meets the four factors, it advises Ministers accordingly. However, the regulations require that Ministers must consult NHS England before a final decision is made. I will of course advise the noble Lord on the outcome of PSSAG’s decision in due course, and should the British Lymphology Society wish to discuss the outcome of its decision I am sure that Ministers—myself or others—or officials from the Department of Health will be happy to meet them.
A number of noble Lords have raised the issue of devolved Administrations in Wales, Northern Ireland and Scotland. It is true that national lymphoedema initiatives have been developed. The question was asked whether it was equitable that there should be national guidelines in the devolved Administrations and not in England, but health is a devolved matter. It may not seem equitable, but the point of devolution is that the devolved parts of the country will have different ways in which they treat different conditions. In England, responsibility for determining the overall strategic, national approach to improving clinical outcomes from healthcare services lies with NHS England, and the provision of lymphoedema care is the responsibility of local NHS commissioners. I would be very pleased to arrange a meeting with Martin McShane, director for long-term conditions at NHS England, so that the British Lymphology Society may discuss its concerns about improvements in lymphoedema care. Of course, that would include any noble Lords or noble Baronesses who want to attend that meeting.
The issue of education has been raised. The regulatory organisations of the UK medical professions, such as the General Medical Council and Nursing and Midwifery Council, set the standards for education and training and ensure educational institutions meet those standards in their delivery of the curriculum. I have no direct personal experience of this, and I know that the noble Baroness, Lady Finlay, for example, and my noble friend Lord McColl, do have direct experience, but, as I understand it, the lymphatic system and its important physiology is a fundamental part of undergraduate medical, nursing, physiotherapy and occupational therapy courses. I cannot verify that myself, but I am told that it is the case. This enables nurses, occupational therapists and physiotherapists to apply their clinical reasoning and manual skills to a patient suffering from lymphoedema. There are universities that offer postgraduate qualifications, including to Masters level, for those qualified healthcare professionals who wish to specialise in this area. In addition to this, the British Medical Journal provides an online learning course on lymphoedema.
Much of the service improvement guidance in England around lymphoedema has developed as a result of the national initiatives to improve cancer services and, more recently, a growing recognition of the support cancer survivors need for ongoing health problems after cancer treatment. A number of noble Lords have raised the point about the equity of those who suffer from this conditions because of cancer and those who suffer from other causes. That raises a broader issue about cancer more generally—that we spend more resource on cancer than almost any other condition, for all kinds of reasons. It is perhaps inevitable that those conditions associated with cancer get possibly earlier diagnosis and greater resources devoted to them. That raises broader issues about cancer and the treatment of other conditions.
Over the last five years, this Government have worked with Macmillan Cancer Support, NHS improvement organisations and NHS England to continue to drive forward the cancer survivorship agenda—first, through the national cancer survivorship initiative and then through the living with and beyond cancer programme, which was set up in June 2014. On
Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020 was published by the independent cancer taskforce. It recommended that NHS England should accelerate the commissioning of services for cancer survivors, including the development of a minimum service specification to be commissioned locally for all patients, based on the recovery package.
The noble Baroness, Lady Masham, raised the issue of research. Through the National Institute for Health Research, we are funding a £1.8 million programme of research, looking at how breast cancer treatment can be individualised to improve survival and minimise lymphoedema and other complications.
I am sure that what I have said has not resolved a number of the issues that were raised by noble Lords.
However, this debate has raised the issue and awareness of it. The issues are quite profound, and the differences between different parts of the United Kingdom are relevant to this debate. Whether the curriculum for medical students—undergraduates and postgraduates—is sufficiently geared to lymphoedema is a question that needs to be looked at by Health Education England and the various deaneries. I can assure the House that the PSSAG and Sir Ian Gilmore will read this debate and will no doubt take into account the issues that have been raised. As I promised at the beginning, I will raise it with Sir Malcolm Grant at NHS England and ensure that the British Lymphology Society gets a proper apology.