Health: Lymphoedema

Lord Hunt of Kings Heath Excerpts

Wednesday 9th September 2015 Lords Chamber

Asked by

[Lord Hunt of Kings Heath]

To ask Her Majesty’s Government whether they will publish a national strategy for the treatment of lymphoedema in the NHS.

[Lord Hunt of Kings Heath (Lab)]

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?