Lymphoedema Services

Marcus Jones Excerpts

Tuesday 27th March 2018 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

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.

[Mr Marcus Jones (Nuneaton) (Con)]

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.

[Steve Brine]

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.