Call for Improved Services for Lymphoedema Patients

The standard of care for thousands of Irish people with a medical condition called lymphoedema is deficient and falls below recognised international standards, according to a patient support group. This is despite the fact that there is growing evidence in other countries that early diagnosis and treatment can result in savings to public health services.

Lymphoedema is a chronic and incurable condition, which is caused by impairment in the body’s lymphatic system. It affects an estimated 15,000 people in Ireland and can be life-threatening because of the risk of serious infections.

Approximately a third of those with lymphoedema in Ireland have what is called primary lymphoedema, which is caused by congenital or genetic abnormalities. The remainder have secondary lymphoedema, caused by radiotherapy, advanced cancers, infections and other diseases. Each year in the region of 1,300 people in Ireland develop secondary lymphoedema as a result of cancer treatment.

Nina Murray, Chairperson of Lymphoedema Ireland said that many Irish lymphoedema patients face difficulties in securing medical care. “The HSE has not acknowledged the international medical consensus on how lymphoedema should be treated and the need for early intervention, “she said. “There is a diagnosis and treatment deficit in Ireland. Some parts of the country are fortunate to have good quality publicly-funded services but other parts are under-resourced while other parts have no lymphoedema resources at all.”

“In some instances, people with primary lymphoedema wait decades for a full diagnosis of their condition. Even then, they cannot access appropriate treatment. Some patients resort to expensive private treatment, including going abroad to specialist clinics, while others are forced with the option of going without treatment. Therapists working in the public system report that they are not sufficiently qualified to treat patients and are also concerned with the poor provision of services.”

“Private patients also have difficulties in accessing treatment as some private hospitals do not provide lymphoedema services. Many run up large medical bills of several thousand euros a year. Irish health insurers provide little cover for treatment and do not recognise lymphoedema as the serious condition it is.”

By contrast, services in Northern Ireland and other parts of the UK are far more advanced – a review of services in 2004 led to lymphoedema being considered a priority for the medical services.  Not only are patients benefitting, Nina Murray adds, but there is good evidence that early intervention and better treatment services provide long-term financial returns. The NHS estimates that it saves £100 for every £1 invested in lymphoedema services in the UK.

Calling for improved public and private services, Lymphoedema Ireland has pointed out that the numbers being affected by lymphoedema is set to increase: “This is due to the widely predicted increase in the number of people affected by cancer, surviving cancer, experiencing longer cancer remissions, the increase in life expectancy rates, particularly among women and the increase in obesity levels and decrease in exercise levels.”

Lymphoedema Ireland, which is supported by the Irish Cancer Society, is engaged in an awareness campaign this month as part of the international Lymphoedema Awareness Month initiative.