“Patients know more about lymphoedema than doctors”

World-renowned medical expert on lymphoedema Professor Peter Mortimer told Irish patients at an open day in Cork at the weekend that they are “likely to know more” about the condition than the doctors who see them.

Lymphoedema, which is caused by problems within the body’s lymphatic system, is incurable and can be life-threatening because of the risk of serious infections.  Professor Peter Mortimer of St George’s Hospital, London said that there is a lack of awareness among the medical profession about the condition.  This means that there are often delays in diagnosis and that treatment options can be deficient.

Speaking at the open day organised by the patient support group Lymphoedema Ireland, Professor Mortimer said: “Lymphoedema is one of the few conditions where patients are likely to know more than the doctors. If lymphoedema is diagnosed, and that’s a big if, and patients are referred to a surgeon they are usually not interested”.

“Lymphoedema is not on the radar.  There is just not enough education at medical schools.  Patients have to keep educating their doctors.  All they can do is diplomatically suggest what needs to be done, give doctors leaflets or the details of websites where they can get more information.”

Irish lymphoedema patients shared the problems they experienced with the medical profession and in accessing treatment at the open day.  Some said that they had waited years for the condition to be diagnosed.  Others spoke of conflicting opinions being given by consultants and of incurring large costs for lymphoedema treatment which they are unable to recover.

Around 15,000 people in Ireland are estimated to have the condition and the numbers are rising, with over 1,200 developing lymphedema each year following treatment for cancer.  Lymphoedema patients fall into two groups, those who suffer from:

  • Primary lymphoedema, which is usually caused by congenital or genetic abnormalities. Around 1 in 6,000 are born with primary lymphoedema each year

 

  • Secondary lymphoedema, which is often caused by damage to the lymphatic system due to radiotherapy, advanced cancers, infections and other conditions.  The number of secondary lymphoedema patients in Ireland is estimated at close on 10,500.

Nina Murray, Chairperson of Lymphoedema Ireland, said that educating the medical profession and advocating for improved services are two of the patient group’s major objectives.  She said that the group wants to reach out to GPs, consultants and healthcare professionals through their representative bodies but also through social media and other channels to ensure they become more knowledgeable about the condition.

“We want to work with the Irish medical professional and with healthcare professionals to raise awareness about the condition and to ensure that there is a better understanding of the treatment options,” she said.  “If the medical community is better informed about lymphoedema, we are confident that some of the problems our members encounter around diagnosis will be addressed.”

“Working in partnership with the medical community will also help to highlight what we regard as the ‘treatment deficit’ for lymphoedema.  Many parts of Ireland have poor or non-existent lymphoedema services, despite evidence that the provision of such services provide long-term benefits in terms of healthcare costs.”