Malcolm stresses the benefits of nurse specialist support for Lymphoedema
Debate on Lymphoedema Services in Scotland Malcolm Chisholm (Edinburgh North and Leith) (Lab):
As members will know, lymphoedema is swelling that results from an accumulation of fluid in the tissues and is usually due to an inability in part of the lymph system to return fluid to the blood circulation. There can be many causes, not all of which are cancer related by any means, but I lodged the motion as part of Breakthrough Breast Cancer's current campaign on lymphoedema services. I pay tribute to its work on that and many other issues.

It is estimated that at least one patient in five who undergoes surgery for breast cancer goes on to develop lymphoedema in their arm. Because of the good news that more women are surviving breast cancer, more women are now at risk of developing lymphoedema. However, the exact number is not known as information is not collected nationally and scientific estimates vary. It is also not clear how many people develop lymphoedema in other parts of the upper body after breast cancer surgery or other breast cancer treatments.

As the motion states, lymphoedema impacts on quality of life in terms of movement, discomfort and appearance. That can be distressing and can make it difficult to perform everyday tasks, while the complications of lymphoedema such as skin damage can result in serious infections that lead to hospital admissions and long-term dependency on antibiotics. Appropriate treatment and support are vital, not just to avoid the complications but to minimise the impact of a condition that cannot yet be cured.

As the Breakthrough Breast Cancer briefing for the debate emphasises, people with lymphoedema and health care professionals report that lymphoedema services are not currently meeting the needs of all patients in Scotland. Where services exist, some patients still experience problems with being referred to them. Moreover, there are no national guidelines on lymphoedema management in Scotland.

Some of the problems were illustrated for me when Breakthrough Breast Cancer introduced me to a women with lymphoedema. She comes from elsewhere in Scotland and not my health board area. She described to me the practical consequences - for example, she cannot lift her grandchild and she has had to give up her job - and she also emphasised the psychological issues and her concerns about treatment. She emphasised the importance of 10-day intensive bandaging, which should be repeated every three to four months, and said that she had had much longer waits of six to seven months, even culminating in a projected wait of 10 months this year, although that was subsequently improved.

As she said, if the next treatment is too far off, the increase in swelling between treatments can be greater than the reduction that is provided by the bandaging treatment. She also complained that there was no manual lymphatic drainage, or massage, as it is sometimes called, and no nurse-led support group, which she had experienced with her earlier treatment.

The main problem in that example is staffing. Only one part-time specialist nurse ran the service. It is no criticism of that nurse to say that she quite simply could not cope with the demand on the service. We all recognise that the health service is facing great funding challenges, but the required investment in staff for a lymphoedema service is not very large in the scale of things. We are talking about one or two specialist nurses or physiotherapists, as the case may be. We all know that, in the development of the cancer strategy, there is now an emphasis on living with and beyond cancer. As part of that, the focus on lymphoedema is absolutely central.

Other examples of problems could be given, but there is also plenty of good practice. Hence, Breakthrough Breast Cancer emphasises inequity and ensuring that high-quality services exist everywhere. There is an example of recent excellent investment over the past 18 months in the NHS Lothian area, which is my health board area.

A new primary-care-based lymphoedema clinic has been established in addition to the excellent services at the Western general cancer centre and St Columba's Hospice. Indeed, the only complaint that I have received recently about lymphoedema services relates to someone who was advised that she would benefit from liposuction surgery, which is available only in Dundee and only for women who live in Tayside. I am told and accept that only a very small number of women would benefit from that surgery, but it is clear that there would be an issue if one of them did not live in Tayside.

I was pleased to meet someone recently who used to work as a specialist nurse in Lothian, but is currently doing a PhD in lymphoedema services. She informed me that people with primary lymphoedema, which is an intrinsic problem that is not related to cancer treatment, can often wait for many years before they get a correct diagnosis, and she pointed out that those who undergo breast cancer treatment also experience delays in being referred to appropriate treatment and support. She emphasised that more clarity and consistency on referral and treatment pathways for patients with lymphoedema are needed. She also highlighted the importance of providing mainly nurse specialist support for self-management and the need for guidance in Scotland so that best practice is disseminated in an effective way and all relevant health professionals are fully informed.

Margo Macdonald (Lothians, Independent):
I, too, have reason to know about the lymphoedema service. As far as I can see, the best way to spread the benefits of self-management would be to teach carers or family members who have patients with lymphoedema, whether or not they got that after a cancer operation.

Malcolm Chisholm (Edinburgh North and Leith) (Lab):
Obviously, Margo MacDonald knows far more about the matter than I do. The patient whom I spoke to said that her husband performed that role.

I should emphasise that the director of Breakthrough Breast Cancer in Scotland, Audrey Birt, is currently chairing a group that is considering guidance. I expect that the minister will mention that in her concluding remarks.

In conclusion, I again pay tribute to Breakthrough Breast Cancer and fully support its campaign for equitable lymphoedema services throughout Scotland. All national health service boards should commit themselves to providing a high-quality lymphoedema service so that everyone who is diagnosed with it can access the care that they need. There should be guidance on best practice services, including on referral guidelines and systems, to ensure that patients can access the services that are appropriate for them.

Motion S3M-6180, in the name of Malcolm Chisholm, on Lymphoedema Services in Scotland
That the Parliament welcomes the increased numbers of women surviving breast cancer in NHS Lothian but is concerned that many survivors are still at risk of developing lymphoedema; recognises the impact that lymphoedema has on quality of life in terms of movement, discomfort and appearance of the arm and other parts of the upper body; is further concerned that access to and provision of high-quality lymphoedema services varies across the country, and believes that a high quality and equitable service that meets the needs of people in Scotland with or at risk of lymphoedema is needed.
May 19th 2010 (Column 26362-4)