Lymphoedema Services
The final item of business is a members’ business debate on motion S3M-6180, in the name of Malcolm Chisholm, on lymphoedema services in Scotland. The debate will be concluded without any question being put.
Motion debated,
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.
17:02
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 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.
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.
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.
17:08
I welcome this members’ business debate on lymphoedema, which has been secured by Malcolm Chisholm: once a health minister, always a health minister. I also congratulate Breakthrough Breast Cancer on the excellent work that it does.
I learned about lymphoedema during a meeting in the Parliament in which a lady from the Western Isles talked about her experience. I admit that I knew nothing about it until then.
The debate is an excellent opportunity to address an issue that is related to breast cancer care, and which could affect more than 9,000 women in Scotland. The motion is about provision in NHS Lothian, but the issues that are raised in it apply equally to the rest of Scotland. There is no doubt that the service needs to be more equitable and of higher quality. Breakthrough Breast Cancer highlighted that, for some people, lymphoedema serves
“as an unwanted, constant reminder of breast cancer.”
It is worth mentioning that point.
In NHS Highland, the main problem is that there appears to be no specific service for lymphoedema management and no one department that provides the service. Although oncology units provide a service to some people, it is patchy. Some staff are trained in lymphoedema management, but they are also trained in the management of many other conditions and their time is split. We need the right guidelines and the right focus on lymphoedema.
In the NHS Highland area, more than 200 women are registered as lymphoedema patients. That might or might not be an underestimate. As Malcolm Chisholm said, the symptoms can range from a small swelling in the hand to full-blown swelling of the arms or legs. Although lymphoedema services are available part time in Inverness, Caithness, Sutherland and Skye, at present no service operates in other areas, including Lochaber.
Following treatment for breast cancer, patients are given a leaflet that offers advice and information on the disease and which details specific exercises to help with lymphoedema. There is also good advice on the National Cancer Institute website, but neither of those is a substitute for high-quality care and advice from an experienced professional who specialises in lymphoedema management. Although light exercise and maintaining a healthy weight are important factors, as stated on the National Cancer Institute website, they are not guaranteed to eradicate lymphoedema.
There is no doubt about the condition’s impact on individuals’ quality of life. As well as the emotional distress, there is the impact of severe swelling of the arms and legs, and it continually prevents many people from doing simple tasks such as washing the dishes.
I support the motion in the name of Malcolm Chisholm. I hope that the debate will raise awareness and encourage the production of national guidelines for patients for management of lymphoedema. That is a part of good cancer care. We must get the cancer care right, but it is equally important to get the aftercare right.
17:12
I congratulate Malcolm Chisholm on securing this debate on an important topic. The motion correctly states that access to and provision of lymphoedema services varies throughout the country. We need a high-quality and equitable service that meets the needs of people in Scotland who have lymphoedema or who are at risk of acquiring it.
My knowledge of lymphoedema comes from the issue having been for several years a standing item on the agenda of the cross-party group in the Scottish Parliament on palliative care, and from family experience. My mother currently benefits from the services that are provided for her by a lymphoedema clinic. However, to access that necessary service—which she obtained only in the past few years, having suffered from the condition for almost 50 years—she has to travel by ambulance from her home in Lanarkshire to a hospital in Glasgow three times per week. Although I appreciate the assistance and treatment that she is receiving, I cannot help but wonder why she cannot receive the service at one of her local hospitals or health centres.
The lymphoedema research report that the University of Glasgow published in 2008 confirms the information that has been provided by Breakthrough Breast Cancer—that there is inequity in provision of lymphoedema treatment in Scotland. The report states that some services actually exclude lymphoedema sufferers who did not acquire the condition because of cancer. My mother suffers from lymphoedema as a result of childbirth, not cancer treatment, but her pain is no less real than that which is suffered by my wife, who contracted lymphoedema as a result of breast cancer. However, their treatment has differed significantly, and that must be addressed.
Patients with primary lymphoedema and those with lymphoedema that has resulted from causes other than breast cancer are least well served. I know of a young boy who fell from his bike and damaged the lymph nodes in his groin, which resulted in lymphoedema. He did not receive treatment for his condition, because the priority at that time went to cancer patients.
The University of Glasgow study concluded that a referral to a specialist lymphoedema service provides patients with a feeling of security and assurance that their condition is taken seriously and is manageable. It can transform patients’ lives, even in cases when the condition is long-standing and less amenable to treatment. However, late referral is causing a burden for our NHS.
It is amazing to see statistics showing just how far the service has to go to provide the service that lymphoedema patients require. A study that was carried out in 2008 showed that there were only three full-time practitioners treating lymphoedema in NHS boards in Scotland at that time. In addition, only 9 per cent of practitioners reported having undertaken comprehensive training to the level of a recognised qualification in lymphoedema management. The study also revealed that at that time the perception was that there was often a mismatch of skills. In some areas practitioners with limited training struggled to manage patients with complicated problems, while in other areas specialists treated fairly routine and uncomplicated patients. I seek assurances from the minister that the situation has now been identified and that it is at least substantially on the way to being rectified, with the appropriate staff carrying out the necessary treatment with the required resources.
Lymphoedema is a growing problem for our NHS as the incidence of this long-term condition increases with age and there is no known cure. Therefore I urge the minister to make adequate funding available to treat all sufferers and to set out a national perspective and approach to planning. I thank Malcolm Chisholm again for giving us the opportunity to raise the issue.
17:16
I congratulate Malcolm Chisholm on securing the debate on a condition that is still widely misunderstood among the general population. It affects many women who have already had to take on breast cancer and win that battle and, as Michael McMahon said, it affects others as well.
Speaking to a number of my colleagues, friends and family about the issue recently, I have found that there is a great deal of ignorance about what lymphoedema is, how it affects people and what can be done to treat it. That includes many women who have had breast cancer but are still unaware of what could happen to them and what condition they could be in if they do not receive the proper care and treatment.
The impact on the quality of life of individuals is always the most important thing that we should focus on in debates such as this one. There was an interesting piece in the Scotland on Sunday last weekend that highlighted the real impact that lymphoedema has on an individual, the discomfort that she suffers on a daily basis, and the problems that affect her everyday life. When we are talking about statistics, the numbers of nurses and the different ways to treat the condition, such a piece brings home how the condition actually affects the individuals in question.
Malcolm Chisholm also raised the important point about specialist nurses. As someone who used to work for the Royal College of Nursing before entering Parliament, I agree with him on that. The specialist nurse can provide not only excellent clinical care but the emotional support and advice that is very important to people while they undergo treatment.
As Margo MacDonald said, we must go further. We will probably never have enough specialist nurses in lymphoedema or any other condition to treat everyone to the extent and in the locality that they wish. Therefore, we must bear in mind the role of general practitioners, carers in their homes and anyone in the primary care sector. We cannot leave the treatment of lymphoedema to a small number of individuals.
I thank Shirley-Anne Somerville for referring to my remarks. The other thing that would be of great help to lymphoedema sufferers is better provision of special compression stockings and other things that they need to control the condition. It can be problematic getting things to fit.
Margo MacDonald raises another excellent point. Given her knowledge of the issue, I would expect no less. It is a question not only of the people who are involved but of ensuring that sufferers are adequately provided for and have what they need available to them at every opportunity. That is still lacking across the country.
In conclusion, I congratulate Malcolm Chisholm again on the event this evening and on ensuring that there is a call for equitable lymphoedema services throughout the country so that people can get the treatment that they deserve, when they deserve it.
17:19
I congratulate Malcolm Chisholm on bringing the debate to the Scottish Parliament and join him in welcoming the increase in the number of women throughout Scotland who are surviving breast cancer.
It is indeed a cruel irony that there is a direct correlation between the increase in the number of lymphoedema sufferers and the successful treatment of breast cancer, which we now know can damage the lymphatic system during surgery or radiography or both. Current estimates suggest that one in five women who undergo treatment for breast cancer go on to develop lymphoedema in their arm. Having fought cancer, those individuals find themselves suffering from a chronic condition for which there is no known cure, which not only affects their quality of life but is a constant reminder of their battle with breast cancer, as Mary Scanlon pointed out.
NHS Lanarkshire has confirmed that if the sufferer is able to access massage and bandaging services on a regular basis, which is considered to be every three to four months, that helps to keep the swelling down to a level of 20 per cent or less, at which the condition is deemed to be under control. Ensuring that patients have access to such services within that timeframe not only makes a huge difference to their lives but prevents the condition from developing into a more serious problem that ultimately claims more extensive NHS resources. For example, according to one of my constituents who suffers from lymphoedema, if she is stung or her skin is cut, there is a 90 per cent chance that it will result in septicaemia.
That same constituent’s experience provides a clear insight into how lymphoedema sufferers in Lanarkshire are being badly let down by the NHS. That lady moved to Lanarkshire from Wales, where she had access to treatment every six weeks, which included massage and bandaging. Her experience in Lanarkshire was as follows. Having requested an urgent appointment, she was referred to the clinic in March 2008. On assessment, the swelling in her arm was found to be 26 per cent, which is more than the 20 per cent control limit. Thereafter, the earliest appointment for the multilayer bandaging that she required was some eight months later in November 2008. Even then, the treatment that she required was not available at the Lanarkshire clinic, so a referral letter had to be sent to the Haven centre for manual lymphatic drainage to be carried out by a therapist, which I believe was done at the patient’s own cost.
Unfortunately, when bandaging commenced, the swelling volume had increased to 30 per cent, and therefore two weeks of daily bandaging had to be undertaken to reduce her swelling to 23 per cent. By 15 May 2009, her limb swelling volume had reduced to 17.8 per cent, but she was told that she did not come into the category to access services at the Glasgow lymphoedema clinic, with which NHS Lanarkshire has a contract. The upshot was that although the swelling had reduced to 17.8 per cent by May 2009, her next appointment was in January 2010—almost eight months later.
In response to my taking up the issue, NHS Lanarkshire told me that there would be an audit of services and that I would be kept fully informed. That was in July 2009. To date, I still have not received a response and I have had to contact NHS Lanarkshire to pursue the issue.
It is evident from my constituent’s experience alone that there is an issue. Ideally, a universal, comprehensive lymphoedema service that operates at the same standard throughout Scotland for those who suffer from primary and secondary lymphoedema should be established.
I look forward to the minister’s response and hope that a system of best practice with effective referral guidelines can be put in place in order to ensure quick diagnosis and swift access to specialist services.
17:24
I congratulate Malcolm Chisholm on securing the debate. I thank Breakthrough Breast Cancer for its helpful briefing. I should declare that one of my staff members works jointly for me and for Breakthrough Breast Cancer, so I am doubly delighted to speak in the debate.
I know that lymphoedema has been mentioned in other debates in the Parliament, but I think that this is the first time that we have discussed it on its own. As we can see from the estimated lymphoedema figures, the condition is becoming much more prevalent throughout Scotland as more people survive breast cancer. We know that the number of people who have breast cancer-related lymphoedema will continue to grow. However, as information is not gathered nationally, it is impossible to know exactly how many people have lymphoedema. As a first step, we need to consider getting that accurate picture. I hope that the minister will give an undertaking to ensure that the data are collected properly.
As a former general practitioner, I have seen at first hand the effects of lymphoedema. As other members have said, it is a swelling or tightness in the skin that is caused by a build-up of excess lymph fluid in the surface tissues. Lymphoedema is, of course, uncomfortable and at times very painful. It can impact on a person’s life in a variety of ways: it can limit their movement and make it difficult to perform ordinary tasks. At times, it can lead to further complications such as cellulitis, which is an inflammation of the skin, particularly if the skin becomes infected. As other members have said, lymphoedema is often a reminder of breast cancer or other underlying conditions. When combined with the debilitating nature of the condition, lymphoedema can lead to low self-esteem, which is distressing for individuals and their families.
Again, as other members have said, lymphoedema is a long-term condition that at present can be managed but not cured, and therein lies the problem. For early identification, people need to be adequately informed and made aware of the potential for developing lymphoedema after treatment for breast cancer. That is also the case for those who have had cervical and prostate cancer. People need to know that lymphoedema is a potential complication of those conditions and that they should seek treatment and advice as soon as the symptoms develop. Once the condition is fully established, it is much more difficult to control. Lymphoedema is not always an immediate complication. The symptoms may present at any point after treatment for a condition—indeed, sometimes years later. It is important that people know that it can present over a period of time.
There are many ways to help those who have lymphoedema, as members have described. I pay tribute to healthy steps, which runs a specialist exercise class in Glenrothes in my constituency. As others have said, we need a combination of initial care and advice, followed by specialist care interventions, after which we need to train people at a lesser level and train families to provide support. We need all of that to be delivered in a comprehensive and integrated service.
It is sad that, once again, we are discussing the postcode prescribing of heath care. That is an inevitable consequence of the individuality of local health boards, but it is unacceptable in any discussion of a universal basic standard and quality of care. That postcode prescribing of services must end. I support Malcolm Chisholm’s motion, in which he calls for
“a high quality and equitable service that meets the needs of people in Scotland with or at risk of lymphoedema”.
I hope that the debate will raise awareness. Again, as in many health debates, a variety of information has been provided, both personal and from our constituents. When she responds to the debate, the minister has the opportunity to consider once again whether national action is required on lymphoedema services and whether the accountability of health boards should be enforced. I support Malcolm Chisholm’s motion.
17:28
I, too, thank Malcolm Chisholm for bringing the debate to the chamber this evening.
As Scotland’s population ages, treatments advance and screening programmes prove to be increasingly effective at detecting cancers earlier. As a result, many more people will find themselves living longer with cancer. For that reason, we are beginning to see cancer being treated increasingly as a long-term condition. As we know, breast cancer is the most common cancer among women, with incidence rates up 9 per cent over the past decade. We have, of course, seen great improvements in breast cancer survival rates, whether in NHS Lothian or across Scotland more generally, with five-year survival now standing at over 84 per cent. With more people being treated for and surviving breast cancer, the number of people who are affected by lymphoedema is likely to increase.
The Scottish Government recognises lymphoedema as a serious long-term condition. As members have said, lymphoedema is not always caused by cancer; nonetheless, it is a serious long-term condition. As we have heard today, living with lymphoedema is very challenging for individuals, their families and carers because of the physical and emotional impacts of pain, disfigurement, limited mobility and disruption to normal daily life that it can cause.
The Government is concerned that people who are living with lymphoedema that results from breast cancer treatment or any other cause should receive the care and support that they need. I recognise the importance of emotional and psychological support for people living with long-term conditions, especially conditions such as lymphoedema. We know that people living with long-term conditions are more likely to experience psychological problems, stress and depression, which makes recovery more difficult. For that reason, support is an essential aspect of self-management, to which a number of members have referred. That is why we are supporting the work that the Long-Term Conditions Alliance Scotland is doing with our lead clinician for self-management to help NHS boards to adopt models that offer a range of emotional and psychological support to people who are living with long-term conditions. That is just one of the many commitments that we have made in the long-term conditions action plan, which forms an important part of the new health care quality strategy.
A number of concerns have been expressed about variances in lymphoedema service provision. Margaret Mitchell outlined eloquently some of the challenges in that area. As I said, not everyone living with lymphoedema has the condition as a result of cancer. I emphasise that lymphoedema services should be made available to everyone who needs them, whatever the cause and wherever they live. We have some work to do to ensure that there is equity in that respect.
A comprehensive picture of lymphoedema services would help to address the issue and contribute to the improvement of care. A working group of the Scottish Medical and Scientific Advisory Committee is already scoping lymphoedema services in Scotland. I hope that that work will help to pave the way for wider work by the voluntary sector, lymphoedema practitioners and people who are living with lymphoedema to develop a best-practice model of care, for which a number of members have called this evening. I look forward to hearing about the group’s findings and vision for the way forward.
A number of members made the point that better data need to be gathered. The study of Edinburgh breast unit patients with lymphoedema that Queen Margaret University is undertaking and which is nearing completion may yield some insights into incidence. We will look at the study’s findings once they are published. A lot of good work is being done and we need to pull all of it together.
We are committed to working collaboratively not just with health care professionals but with the voluntary sector to find new ways of delivering services that can make a real impact and real improvement. One such innovation is the Breakthrough Breast Cancer service pledge for breast cancer. As other members have done, I pay tribute to that organisation for its work. The innovation involves NHS boards and breast units signing a pledge to improve services based on patient feedback, and will include support for women who require services to treat and manage lymphoedema. That partnership approach to service improvement, based on local patient experience, is exactly the kind of initiative that we want to encourage through the new quality strategy. I am pleased to note that Breakthrough Breast Cancer will receive £46,500 of Scottish Government funding over the next three years, through a section 16B grant programme, to support the roll-out of the service pledge across the NHS in Scotland.
I am also pleased that two projects supporting self-management were successful in their applications to the self-management fund, for which the Scottish Government has given £4 million until 2011. One of those projects is the Haven Centre in Lanarkshire. I hope that that will help to support patients after their treatment. Breast Cancer Care has received funding to deliver a range of “moving forward” information sessions across Scotland to support people in adjusting to, and to facing living beyond, breast cancer treatment.
Wearing my public health hat, I say that we want to do what we can to reduce the number of people who develop breast cancer and the number of people who are likely to be affected by lymphoedema, so our actions on prevention are vital.
A number of members mentioned some of the risks that we know can be reduced. Our programme of encouraging healthy lifestyle choices will, I believe, help to reduce the incidence of cancer and so, I hope, that of lymphoedema.
I wish to highlight the work of the Scottish Government’s living with cancer group, which is tasked with overseeing the implementation of the “Better Cancer Care” action plan. The group is holding a workshop at the end of May to discuss its vision for cancer care in Scotland in supporting people who are affected by the long-term consequences of a cancer diagnosis. Lymphoedema will be among the issues that the group will consider.
I hope that people are reassured that a lot is happening. If we bring it all together, it will start to ensure that the best practice that exists in many parts of Scotland, and which members have talked about, extends to the areas in which there are still clearly challenges. That means ensuring equity of service.
I again thank Malcolm Chisholm for focusing attention on an important issue. I have no doubt that this informative and productive debate is another step on the pathway towards achieving better awareness and understanding of the condition, both within the NHS and among the public in general. It has focused attention on the good things, and on areas in which there are still challenges—and it can bring a sharper focus to what we can do about those challenges.
Meeting closed at 17:36.