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.