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.
5.52 pm
Lord Maginnis of Drumglass (Ind UU): 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.
5.59 pm
Baroness Finlay of Llandaff (CB): 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.
6.08 pm
The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con): 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 15 October.
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 19 July 2015,
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.