Health CommitteeWritten evidence from the Lymphoedema Support Network (LTC 10)


Lymphoedema is a long term condition which current research and expert opinion supports, affects between 1.33 and 3.99 per 1,000 population. Prevalence increases significantly with age and based on these figures it is estimated that between 76,000 and 227,000 men, women and children in England are living with the condition. This would equate to an average of 400 to 1,000 per Clinical Commissioning Group.

It is a common, chronic, disabling condition which has significant impact on patients’ quality of life.

Current NHS and social care provision to stabilise and improve the condition and to support on-going self-management is poor, with patients reporting difficulties in gaining a diagnosis, a lack of adequate provision to assess, treat and support self- management.

Current lymphoedema services in England are demonstrably wholly inequitable with many services discriminating against those with non-cancer related lymphoedema and children who live with the condition.

The incidence of the condition will increase with longer survivorship in cancer, an ageing population and increasing obesity rates as all are known to be contributory factors in the condition. There is currently poor strategic alignment between workforce planning, health care education and social services which is worsened by the current lack of NICE guidance, no agreed national tariff, no minimal education standards for lymphoedema practitioners, no agreed commissioning guidance and no National Strategy—it should be noted that all other home countries have, or are working on National Strategies for lymphoedema management.

36% of current services are managed by single handed practitioners and there has been a 2.37% reduction in the number of lymphoedema practitioners between 2009–11.

Lack of timely, accurate diagnosis leads to increased complexity, increased costs and increased hospital stays as well as having a significant negative impact on the lives of those affected.

It is estimated that for every £1 spent on lymphoedema treatments to limit swelling and prevent further damage and infection, the NHS saves £100 in reduced hospital admissions. Untreated lymphoedema costs the NHS more money in the longer term.

Once treated and controlled lymphoedema can be self-managed with the right support both in terms of a good clinical and social services infra-structure. This may be as simple as a need for help to carry out skin care and put on compression garments—yet patients are told that this is not a community nurses job by the health teams and told it is a health problem by the social services teams—this lack of joined up care often sees patients’ condition return to levels at least as bad as they were before treatment and sometimes even worse.

1. What is Lymphoedema?

The lymphatic system is a network of vessels and nodes all over the body. Its main function is to transport lymph (a colourless fluid containing excess protein and immune cells) that forms naturally in the tissues. It also plays an important part in the body’s defence against infection. Lymphoedema is the name given to a swelling of the limbs, body or head that is chronic in nature (over three months), does not go down following elevation and does not respond to diuretics (water tablets). Lymphoedema is broadly divided into two types:

Primary lymphoedema

Usually develops as a result of a genetic fault with the lymphatic system. With under development or weakness of the lymph vessels, swelling can appear at or around birth or more often later in life such as at puberty. It can affect infants, children and men and women of any age and often runs in families.

Secondary lymphoedema

Develops when the lymphatic system is damaged. This may happen following treatment for cancer ie surgery or radiotherapy, but may also occur as a result of infection, traumatic injury, burns or when blood vessels are not working properly ie Deep Vein Thrombosis, varicose veins or leg ulcers. Patients who have reduced movement due to other causes are also at risk such as following a stroke, MS or paralysis.

2. How common is the problem?

It was once assumed that lymphoedema was mainly a problem associated with the treatment of cancers, particularly breast cancer and as a result most studies have focused on this. Studies in Wandsworth (Moffat CJ, Franks PJ et al (2003) lymphoedema: an underestimated health problem. QJ Med; 92: 731–38) and Derby (Moffatt CJ, Pinnington L. (2012) HIEC Project Evaluation Report. Facilitating the development of community based lymphoedema services through clinical education) found a prevalence of between 1.33 and 3.99 per 1,000 population respectively which rises steeply with age: 10.3 per 1,000 in those aged between 65 and 74 rising to 28.6 per 1000 in those over 85 years of age. It is therefore estimated that there are between 76,000 and 227,000 people in England living with lymphoedema. That equates to an average of 400 to 1000 individuals per CCG.

Three identified risks for lymphoedema are older age, having a cancer diagnosis and obesity—current projections suggest that all of these categories are expected to increase dramatically and as such the prevalence of lymphoedema will inevitably increase. With the current service provision already failing to meet current need this situation is a health and social care time bomb.

3. How is the condition managed?

3.1 Prevention

Whilst the primary form of lymphoedema cannot be prevented research suggests that in its secondary form, particularly in relation to breast cancer, quality patient information and early interventions can reduce the chance of developing lymphoedema or limit its consequences (Torres Lacomba M et al (2010). Effectiveness of early physiotherapy to prevent lymphoedema after surgery for breast cancer; a randomised, single blinded, clinical trial. BMJ; 340; B5396). This approach is reliant on both healthcare professionals and those at risk knowing about the condition and risk reduction factors. The LSN produces a wide range of patient information that is available via NHS Choices and the Information prescription initiative. Patients who are in contact with the LSN report that many GPs and community and hospital nurses have an alarming lack of knowledge about the condition and it is certainly true that the recognition, prevention and management of lymphoedema is not a priority in nursing, medical or physiotherapy training programmes. Last year the LSN commissioned a BMJ eLearning module on the subject aimed at GPs. In the first 12 months 2,141 UK doctors/physicians had completed the unit and whilst that is pleasing it is against a total number of GPs approaching 31,000 all of whom will be responsible for the long term condition support of lymphoedema patients.

3.2 Treatment

Although lymphoedema is not currently a curable condition, treatments are available to reduce and control the associated swelling and skin changes and reduce the most common complications of cellulitis and leaking fluid (lymphorrhoea) (Ko DSC et al (1998) Effective treatment of lymphoedema of the extremities. Atch surgery; 133; 452–458). These treatments include:

External compression—via multi-layer bandaging, intermittent pneumatic compression devices and, most commonly, compression garments.

Skin care.

Exercise and movement.

Specialised massage—manual lymphatic drainage (MLD) or a self-administered version of this called simple lymphatic drainage (SLD).

3.3 Emerging technologies

No drug therapies have proven to be consistently effective for most types of lymphoedema. A number of important new technologies are being developed which will influence the future management of the condition—these include genetic, new methods of compression, surgical techniques such as lymph node transplants, liposuction and low level laser therapy.

4. Why should the NHS act?

4.1 Cellulitis

Due to the impact on the immune system that lymphoedema has, the most common complication of lymphoedema is cellulitis. This serious infection is a significant burden on the National Health Service. NHS Choices states that:

“In England in 2009, around 80,000 people were admitted to hospital as a result of cellulitis. The number of annual cases of cellulitis has increased three-fold over the past 15 years.” The cost of hospital admission for cellulitis in Derbyshire, Nottingham and Lincolnshire was approximately £4.1 million in one year against a population of Approx. 2.5 million. An average admission for cellulitis associated with lymphoedema in the previously mentioned Wandsworth study was 12 days and an estimated cost of £2,300.

4.2 Impact on the individual

Studies have demonstrated the significant impact lymphoedema has on the lives of those living with it (Todd J et al (2011) Service user research into social difficulties and appearance concerns in lymphoedema secondary to cancer. Macmillan Cancer Support) In the previously mentioned Wandsworth study the following data was found, which is backed up by the Todd study and direct patient feedback from the Lymphoedema Support Network.

80% of people with lymphoedema had to take time off work for treatment.

8% had to stop work completely because of their lymphoedema.

29% had experienced cellulitis in the previous year and 27% of these required hospital admission.

50% of patients suffered uncontrolled pain.

36% of people had received NO treatment for their condition.

A case study by the Lymphoedema Support Network Nurse Advisor graphically demonstrated these issues. A 63 year old gentleman developed lymphoedema as a complication of long term venous leg disease—for 18 months his case had been overseen by the community nursing team who had struggled to manage extensive ulceration. Lymphorrhea and the emotional, physical and social burden of illness that the gentleman was living with. He was finally referred to a specialist lymphoedema service with the patient identified goals at commencement of treatment being “to stop smelly fluid leaking from my legs, to be able to play with my children again, to reduce my pain, to be able to get back to work and stop claiming benefits and to get my life back”. The cost of his medical treatment over these 18 months had been £20,560 and this did not include his benefits or other social costs. Following just nine sessions of treatment, at a total cost of £1,041 the gentleman’s legs were no longer leaking, his pain was significantly reduced, his swelling had reduced from the original 63% larger to just 5% larger, he had been reinstated to his job and was no longer claiming benefits, he said he had his life back!—he also required no visits from community nursing teams and was being supported in his on-going management by his GP.

4.3 Lack of appropriate initial assessment and treatment as well as a failure to support long term management is undoubtedly costing the NHS both in direct terms and in staff time and resources as well as causing many lymphoedema patients to be claiming benefits and needing significant social services input due to reduced mobility, pain and infection.

5. What could be done to improve the situation?

Improved health and social care professional knowledge of the condition.

The creation and adoption of a National Strategy for England for lymphoedema management.

Improved access to Specialist care and on-going maintenance care for all living with lymphoedema regardless of cause, age or geography.

NICE guidance on the management of lymphoedema/chronic oedema.

The adoption of individualised joint health and social care care plans to assist with self-management of this long term condition.

7 May 2013

Prepared 3rd July 2014