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House of Commons Hansard
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Lymphoedema Services
27 March 2018
Volume 638

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I beg to move,

That this House has considered provision of lymphoedema services.

It is a pleasure to serve under your chairmanship, Mr Gray, and I thank the Minister for being here to respond. This is the first Westminster Hall debate I have secured, and I am proud it is on an issue that affects many people in the United Kingdom. It was first drawn to my attention by my constituent Melanie Thomas MBE.

Lymphoedema or chronic oedema is a chronic swelling due to the lymphatic system failing. It mainly occurs when the lymphatic system is damaged by surgery, radiotherapy, trauma or infections. People can also be born with lymphoedema if the lymphatics have not developed properly. It affects people of all ages, and the swelling can occur in any part of the body. People think it is rare, but it is not, and research suggests that about six people per 1,000 have lymphoedema which, to put that into perspective, is about 400,000 people in the UK. If we look at the legs and feet of people in supermarkets or even here in Parliament, we will see swollen oedematous legs.

The problem of chronic oedema is getting worse as we get fatter and live longer with the consequences of other health conditions. Fifty-five per cent. of the average community district nurse case load is people who have swollen oedematous legs, with or without wounds. Such nurses, however, are not lymphoedema experts, and most do not have the skills in lymphoedema bandaging or prescription of compression garments.

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I congratulate the hon. Lady on achieving this Westminster Hall debate. She referred to 400,000 people suffering from lymphoedema. Macmillan Cancer Support has estimated that there are 124,000 sufferers in the UK. Does she agree that there must be a better NHS support system, including more practice nurses, and specific training in lymphoedema care? The Government need to allocate the funding to support those suffering from this chronic condition.

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I wholly agree with the hon. Gentleman. I will discuss training needs later—there is a definite need.

Lymphoedema can affect people physically, psychologically and socially. It has a significant impact on quality of life and prevents people from undertaking the normal activities of daily living. Reported issues include: massively swollen limbs that leak through clothes and soil carpets and beds; poor mobility; the inability to find shoes that fit and a limited choice of clothes; increased pain; inability to work; frequent admissions to hospital with cellulitis; stigmatisation and people being scared, anxious and depressed; and inability to cope and a feeling of lost control.

We might think that people can get treatment, but they cannot—that is the problem. Lymphoedema services are scarce. People suffering with lymphoedema cannot access the treatment they need or deserve. There is wide variation in the organisation and delivery of lymphoedema services throughout the United Kingdom. Some areas have commissioned full lymphoedema services—services for both cancer and non-cancer patients—others offer cancer-only services, and others provide no lymphoedema services at all.

Lymphoedema services that have been commissioned range from lone practitioners to small teams, so waiting and treatment times vary, as do treatment options. That diversity is not a result of patient need and is not patient-centred. Most people with lymphoedema go undiagnosed and untreated for long periods as a consequence of the poor level of knowledge among health professionals and the limited support from healthcare managers and commissioners. Lymphoedema is a growing condition, so what support are the Government providing to develop pre-graduate and postgraduate education for healthcare professionals to raise awareness of the condition? Something has to change.

Becoming aware of the lack of lymphoedema services in Wales, the Welsh Government listened to its members. I am very proud of that. The Conservatives might slate the Welsh NHS in the Chamber, but this is a wonderful area of work that has been developed in Wales, and I want to hail it. In 2009, the Welsh Government commissioned a lymphoedema strategy for Wales, which sets out clear aims to enable access for all lymphoedema patients to the appropriate services at the right place, at the right time and with the right person, regardless of whether their lymphoedema is related to cancer. Lymphoedema strategies have also been written in Northern Ireland and Scotland. England is the only nation not to have one.

In 2011, the Welsh Government invested £1 million to implement their lymphoedema strategy. The funding enabled lymphoedema services to be set up under every health board in Wales, managed by Lymphoedema Network Wales to maintain strategic oversight of the strategy for lymphoedema in Wales. Services are also made available in the more rural areas of Wales by the Tenovus Cancer Care mobile unit, which works closely with Lymphoedema Network Wales and the Abertawe Bro Morgannwg University Health Board.

Lymphoedema has always been a chronic, incurable condition, but new evidence suggests that significant improvements can be made for patients. In Japan and Europe, a super-microsurgical technique, which joins the defunct lymphatics to a functioning vein, has seen a 96% reduction in cellulitis episodes, and 70% of treated patients have stopped utilising compression garments as a result. The technique—lymphatic venous anastomosis, or LVA for short—is available on the NHS only in Wales. The Welsh Government supported the investment to make that happen and 42 patients per year can now have the innovative surgery that has the potential to cure their lymphoedema.

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I have a constituent called Caroline, who is in her late 30s. She has had lymphoedema affecting her leg for several years. She recently had an infection and had to go to accident and emergency three times. She now has to wear surgical stockings for the rest of her life. Had she been diagnosed earlier, she would not be in that situation. Does my hon. Friend agree that, if a strategy had been in place, my constituent would not have needed to go to the NHS so often, saving money by controlling the condition when she was first diagnosed?

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My hon. Friend makes a valuable point about the waste of money. The money is wasted on services because the lymphoedema is not being treated properly with the correct garments. We hope that that will be addressed so that the NHS can save money and be more effective.

We want better outcomes for patients as well as to save the NHS money. LVA is available privately in the UK, but not everyone has the £15,000 needed to have the surgery. LVA has the potential to cure lymphoedema and stops the need for admissions to hospital for cellulitis and for expensive compression garments. When will this surgery be available on the NHS for England, Scotland and Northern Ireland?

Wales also leads the way in developing a national paediatric lymphoedema service. Children can have lymphoedema, and in Wales 260 have the condition. Last summer I had the opportunity to meet some of them in Margam at an event organised by the Lymphoedema Wales Network. I saw them participate in a wide range of sports—that is important, because having lymphoedema does not mean people cannot participate in sport, and those young people were being actively encouraged to play football and rugby. The most important thing that came out of that day was the opportunity for young people to meet people like them, and for parents to meet one another. It was absolutely invaluable for those young people and their families to discuss things and have a support network.

Hon. Members should not think that Wales has it easy, because it does not. When it got the funding, the prevalence of lymphoedema was two per 1,000. It has now tripled to six per 1,000. It is the same story in Northern Ireland—when the Lymphoedema Network Northern Ireland was started, the prevalence was 1.33 per 1,000; it is now five per 1,000.

A small change can make a difference. If Wales and Northern Ireland can do it, why can we not have an equitable service among all nations? In England, I have been made aware that Herefordshire, Bedfordshire, Tamworth, Coventry, Luton, Southport and Aintree have services available only for cancer patients. Warrington, Barking and Bolton have no lymphoedema services at all. Morecambe bay’s services were under threat, but there was good news of additional funding. What is NHS England going to do to support its clinical commissioning groups in commissioning lymphoedema services, to end the inequity of service provision and patient suffering?

The NHS is wasting money trying to treat lymphoedema patients, as well as having a huge impact on patients’ lives. Many tell stories of wasted time, of being referred to numerous hospital specialties, of inappropriate wound dressings, with bandages often used, and of patients being admitted to hospital with cellulitis because the lymphoedema has not been treated. We need to save money and start treating patients with lymphoedema better. Let us improve education on chronic oedema, get more clinical expertise in the community to prevent complication and admissions, and ultimately, stop the current postcode lottery as well as the non-cancer inequity.

In 2002, a debate was held in this place. Very little has changed in the 16 years since. What will the Government do to support our constituents to gain the lymphoedema services they so rightly deserve? I would welcome the opportunity to facilitate a meeting between Lymphoedema Network Wales and the Minister at his earliest convenience.

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I congratulate the new hon. Member for Gower (Tonia Antoniazzi)—I knew the last one—on securing her first debate in Westminster Hall, as she said, which is on a very important issue.

Lymphoedema Awareness Week took place earlier this month, so today’s debate is timely. We heard much from the hon. Lady on the impact of the condition, which she set out very well, although Members should watch themselves looking at people’s legs and feet in supermarkets. I am sure therein lies a problem for me in Winchester, but I take her point. She set out very well the difference that high-quality care and support can make. We can all agree that we want that for people affected by lymphoedema. I hope the debate will encourage service providers across England to consider the improvements that they might make.

It is estimated that between 75,000 and 220,000 people in England are affected by lymphoedema. The condition is caused by abnormal accumulation of lymph fluid in body tissue, which can be the result of a congenital defect, of damage to the lymphatic system or of removal of lymph nodes by surgery, radiation, infection or injury. Obviously, cancer plays a role in that, which I will come to. Regardless of the cause, it is important that the NHS responds appropriately in diagnosing and managing the condition, and that it provides appropriate support and advice to those affected. A lot has changed since we had the last debate.

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Will the Minister say more about consistency of services for lymphoedema across the country, and acknowledge the role of our hospices? In my constituency, the Mary Ann Evans Hospice, of which I am a patron, has a lymphoedema care service, which is very valuable to local people.

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In my response I will touch on services across England. My hon. Friend is right to mention the hospice movement. Many people working in hospices become experts in this field by virtue of their day-to-day work. I am very happy to endorse what he said, and I thank everyone working in the hospice movement who is helping patients affected by lymphoedema.

In Scotland, Wales and Northern Ireland, certain national lymphoedema initiatives have been developed—we have heard about the initiatives in Wales. Health is a devolved matter, and devolution is important. The devolution settlement from the last Government stands, and allows the four nations of our United Kingdom to develop the services that they believe meet the needs of their resident populations and the respective size of them. In England, responsibility for determining the overall strategic national approach to improving clinical outcomes for healthcare services lies with NHS England, and the provision of lymphoedema care is the responsibility of local NHS commissioners.

Although lymphoedema has no cure, interventions such as decongestive lymphatic therapy, skincare, exercise advice and weight management can ease symptoms and improve quality of life for those affected. The hon. Lady was absolutely right to raise the issue of weight management—there is a lot of discussion in this place about the obesity challenge that we face. This condition is a not-often-talked-about consequence of the obesity challenge, and I am grateful she raised it. People with lymphoedema can usually be treated through routine access to primary or secondary care services with access to dedicated lymphoedema clinics. I have experience in my family of attending such clinics.

To support clinicians in the diagnosis, treatment and support of patients with lymphoedema, an international consensus document on the condition was produced in 2006, which is endorsed by the British Lymphology Society and the Lymphoedema Support Network. Additionally, the Royal College of General Practitioners offers an e-learning course on lymphoedema—the hon. Lady said that that was one of her concerns. That often supplements GPs’ existing understanding of the condition, which is covered in the GP curriculum, and I am pleased to say that it is identified as a key area of knowledge that we expect of them in their qualifying exams.

We heard from the hon. Lady about calls for a national lymphoedema service in England. Hon. Members may be aware that, in 2015, the British Lymphology Society submitted a proposal for a nationally commissioned specialised lymphoedema service to the Prescribed Specialised Services Advisory Group—we like our titles and acronyms in health—which is an expert committee appointed by the Department to consider these very matters.

Four factors should be considered when determining which prescribed specialised services should be directly commissioned by NHS England, the first of which is the number of individuals needing the service. The second factor is the cost of providing the service—after all, it is a publicly funded health service. The third consideration is the number of persons able to provide the service—the workforce—and the fourth is the cost to clinical commissioning groups in England for providing the service.

Taking account of those four factors, the advisory group concluded that lymphoedema services were not suitable for national commissioning. As the patient population was high in England, there were numerous providers and the burden to commissioners was low. However, we keep that under constant review, which links to my next point about Wales. We recognise that there can be opportunities to learn from our partners in the devolved Administrations while taking high-quality clinical advice from our advisers, such as I just mentioned.

We are aware of the recent evaluation of the lymphoedema service in Wales, which was published in the British Journal of Nursing, and we agree that the results appear to be very positive in addressing the challenges faced in Wales. We also note the caution applied to some of the figures but, as I say, we keep it under constant review, and the hon. Lady’s debate is helpful in that regard.

In my experience as a Health Minister, NHS commissioners are always keen to hear about services that have demonstrated savings and improved care in other parts of the country and the United Kingdom. For example, the Healthy London Partnership, a collaboration including London’s NHS, councils and Public Health England, for which I have responsibility, has drawn on the work of the Welsh lymphoedema service for its own service. We watch that closely. NHS England is also aware of the evaluation of the Welsh service and—the hon. Lady asked about this—is in touch with the national clinical lead for lymphoedema in Wales, who is one of her constituents. That relationship is ongoing and bearing fruit.

The hon. Lady mentioned cancer, for which I am the Minister responsible. Lymphoedema resulting from cancer treatment, which, sadly, has touched my life, is common. About one in five people have lymphoedema of the arm after breast cancer treatment that affects the lymph nodes, which are so difficult. Much of the lymphoedema service improvement in England has developed as a result of national initiatives to improve cancer services and, sadly, the high number of breast cancer incidents. There is growing recognition of the need to support cancer survivors after they fall off the cliff edge when their treatment ends. Lymphoedema services are a key part of that, and I have seen them when out and about doing my job.

Over the years, the Government have driven forward the cancer survivorship agenda, which I am passionate about and committed to, first through the national cancer survivorship initiative, and then through the living with and beyond cancer programme, for which I am responsible. Central to that work has been embedding in mainstream NHS commissioning a recovery package, which is a combination of interventions that, when delivered together, can greatly improve outcomes and the co-ordination of care beyond the cancer pathway, which is what we are looking at, including through better and earlier identification of the consequences of treatment for conditions such as lymphoedema.

Members will be aware that our world-class cancer strategy for England, which has another two years left to run, was published in July 2015 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 I just mentioned. That specification was published in April 2016 and includes provision of lymphoedema care. It was followed by £200 million of funding to support the implementation of the recovery package and other areas of the strategy, which I am sure I will talk about again in debates in this place. Those services should be provided on the basis of need, not of whether someone has had cancer.

Finally, let me highlight the research that is being undertaken. We invest more than £1 billion a year in health research through the National Institute for Health Research. The NIHR is currently supporting three important lymphoedema studies: an analysis of genes and their functions in primary lymphoedema; an investigation of the pathophysiology of breast cancer-related lymphoedema of the arm, which I mentioned; and a feasibility trial of early decongestive lymphoedema treatment for women newly presenting with breast cancer-related upper limb lymphoedema, which is very important.

As well as thanking you, Mr Gray, for sitting through what I hope has been as interesting a debate for you as it has been for us, let me thank the hon. Lady again for using her first Westminster Hall debate to raise this important issue and highlight the many challenges that people with lymphoedema face. I am confident that, by continuing to build our expertise, increasing the research I listed and ensuring that our commissioners and clinicians have the training, tools and guidance to deliver high-quality lymphoedema care, we can ensure that patients receive the treatment and support they need and deserve. As ever, I am grateful to Members. We keep everything under constant review, because ultimately we have a publicly funded health service that is there for patients. As the Minister with responsibility for primary care, I have responsibility not only for cancer but for prevention, and I am interested in anything that can help us to reduce people’s suffering and the cost to that publicly funded health service.

Question put and agreed to.

Sitting suspended.