Health: Lymphoedema

Baroness Finlay of Llandaff Excerpts

Wednesday 9th September 2015 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, like others who have spoken, I am most grateful to the noble Lord, Lord Hunt of Kings Heath, for introducing this debate so comprehensively. He gave us a very good tutorial in the pathophysiology of lymphoedema. I declare my interests: I am president of the Chartered Society of Physiotherapy and the clinical lead for palliative care in Wales. I will be speaking about our Welsh service because we have a strategy and people can learn from it, just as the noble Lord, Lord Maginnis, outlined the one for Northern Ireland, where the advances have happened because of having a national strategy, just as we do. Unfortunately, as has been said and as personal stories have outlined, there is inequitable access in England because there is no strategy and there are no NICE guidelines.

What has been our experience in Wales? We published a national lymphoedema strategy in 2009 and invested £1 million in 2011 to focus on a clinically effective service that had to be value for money. There are now 9,300 patients with lymphoedema, which works out at 450 new referrals each month to the service. Fifty per cent are cancer-related and in 93% the lymphoedema is secondary to another cause, rather than being primary lymphoedema. Forty-three per cent of the cases are considered complex or severe and there is a direct correlation with age, 86% of the patients being more than 51 years old.

However, the waiting time has gone down since we have had our strategy. In 2011 it was 24 weeks; in 2015 it is 14 weeks, with 95% of patients being seen within 14 weeks. Palliative patients are seen within two weeks and urgent patients within four weeks of referral. Garment dispensing has radically improved. In 2011, 50% of garments were wrongly dispensed; it is now only 5%. The waiting time for garments has reduced from 42 to 10 days. With our surgeons, we have also been able to develop a unique microsurgical technique, which is a real pioneer and has shown a 96% reduction in cellulitis episodes and a 70% reduction in the need for compression garments. I do not think that investment in research would have happened without the rest of the clinical infrastructure being in place. It is estimated that there has been an overall saving, per patient each year, of more than £9,700, while the national contract for purchasing garments is saving £135,000 annually. The cost pre-service was more than £89,500,000 but post-service it has fallen to £41 million, so there is an annual saving of more than £48,500,000 from having a co-ordinated strategy in place.

Let me turn back to England. It is a myth that lymphoedema is so rare. A recent study by Moffatt and Pinnington noted that almost four in 1,000 people have lymphoedema, which is three times the current estimate. This means that somewhere between 72,000 and 227,000 people in England have it, making an average of somewhere around 700 patients per clinical commissioning group. Cancer-related lymphoedema gets the publicity but is only 25% of the workload. Breast cancer, about which most of the public-facing work in educating patients has been done, actually represents 14% of the workload in England.

One of the difficulties is obesity, which has a serious role. I know that when I was setting up the lymphoedema service in the cancer centre, we would get patients referred and, quite often, their bigger problem was obesity. The lymphoedema was very much secondary to it and almost unmanageable until the obesity was tackled. With the predictions of increasing obesity that is a major problem, as 63% of lymphoedema patients have been found to be obese and 21% severely obese. The noble Baroness, Lady Smith of Newnham, who—for those who cannot see her—is very far from obese, outlined that the patients’ experience is poor. That is borne out by all the other data. As has been said, 80% of people have had to take time off work. Half have uncontrolled pain of some sort and about a third were told that they have lymphoedema but have not received treatment.

There is a lack of a national contract for compression garments, which means that prices are inappropriately high. As the noble Baroness outlined so clearly, patients with a condition that appears to be relatively minor feel quite guilty when they are referred to a service linked to a hospice but are also quite often really scared that there is something else going on that they have not been told about.

Services are spread across numerous sectors and there is currently no audit surrounding the level of practitioners’ training or skills. There are then high knock-on costs from primary care into secondary care. This patchy service has effectively meant that there is discrimination against those with non-cancer lymphoedema, because a lot of services have been set up that are linked to cancer centres. The other problem is that there has been a 2.37% reduction in the lymphoedema workforce from 2010 to 2011. The services that are there are vulnerable as a third of them are run by single-handed practitioners. If that person goes off sick, retires or leaves, there is a tendency for that service to fold.

I suggest that there is a need for a national strategy, which should follow the lymphoedema framework and would: identify those who are at risk and their clear clinical grades; empower people who are at risk of or have lymphoedema to manage their own conditions, which frees them up from dependency on the health service; have integrated community, hospital and hospice services, with high-quality clinical care, particularly for the very early management of cellulitis and erysipelas; provide compression garments—the right ones, properly fitted by people who know what they are doing; and require multiagency health and social care. I would stress that some of the best services around the UK have been led by physiotherapists rather than by clinicians of other sorts. I want to give credit to them, because they really have been pioneers.

As for education, since the BMJ produced a learning module, more than 2,000 doctors have completed it. They have sought this out and recognised that they need to learn about it. The noble Baroness, Lady Masham, vividly described the problems when lymphoedema is not properly diagnosed and treated. The National Cancer Survivorship Initiative has shown how early diagnosis and symptom management through improved access to information and treatment would heavily reduce escalation and the need for hospital admissions, as well as reducing morbidity and complications.

The NHS could save £100 in reduced hospital admissions for every £1 spent on lymphoedema treatments that limit swelling and therefore avoid complications. I understand that England currently spends more than £178 million on admissions due to lymphoedema, with a rise in costs of £7 million from 2013 to 2014, equating to more than 22,904 additional admissions. It is predicted that the NHS, as the noble Lord, Lord Maginnis of Drumglass, said, could save £32 million a year by having a proper national strategy that provides a national service. That would mean that patients have fair access, rather than feeling discriminated against due to either the type of lymphoedema they have or where they live. It just does not make sense not to proceed with a strategy.