The HSE is aware that thousands of people with the progressive swelling disorder, lymphoedema, have little or no access to appropriate services, yet nothing has been done to tackle this issue, a support group has claimed.
Lymphoedema occurs when the lymphatic system - an important part of the body's immune system - fails to function properly, leading to persistent swelling that can affect any part of the body. It is most often seen in the arms and legs and around 15,000 Irish people are affected.
A person may be born with it (primary) or they may develop it later (secondary), for example if their lymphatic system is damaged by cancer treatment. In fact, around 1,200 people develop the condition every year following treatment for cancer.
According to Nina Murray, chairperson of Lymphoedema Ireland, there are ‘thousands and thousands of people suffering from this who have no medical, moral or financial support'.
"In the areas where limited public services exist, they are fragmented, and medical expertise in diagnosing and referring is patchy and under-resourced. The HSE knows this as they carried out a review last year of lymphoedema services throughout Ireland, but have yet to publish it," she pointed out.
Lymphoedema Ireland is now calling on the HSE to publish the findings of this report ‘and to put in place a plan to develop services in recognition of the growing incidence of the condition'.
Also commenting on the HSE report, Donal Buggy of the Irish Cancer Society noted that the HSE's review of lymphoedema services was initiated ‘at least two years ago, and has been completed for some time now'.
"Yet the HSE is sitting on the review's findings and recommendations. We have written to the HSE twice asking for this report to be published. We are calling on the HSE again to publish this review immediately so the deficiencies in services identified can begin to be addressed," he said.
There is currently no cure for this condition and it can have a major impact on a person's quality of life. However, if diagnosed and treated early, extreme swelling can be controlled and even reduced, infections can be prevented and the range of movement can be improved.
"Lymphoedema is a chronic disease which is poorly recognised, leading to a delay in diagnosis and treatment. This in turn leads to an increase in the incidence of complications including immobility and ulceration, all of which have a significant financial cost for the health service and physical, psychological and financial impacts for patients," explained Prof Mary Paula Colgan of St James's Hospital and Trinity College Dublin.
She pointed out that there are ‘excellent lymphoedema therapists' in both the public and private sector, however she said her biggest difficulty is actually accessing these services for patients, ‘as several areas of the country provide no service at all'.
"In other areas, many of these services are unavailable for non-cancer patients despite the fact that treatment for both groups of patients is identical. This is an inequitable service, and discriminates against patients based on their disease type," Prof Colgan said.
She believes that Ireland should look at the changes made in Northern Ireland and Wales, which until recently, had similarly disjointed services.
"But they launched a a coordinated lymphoedema network which has resulted in a comprehensive and equitable service for patients. Any additional costs to set up such a network here in Ireland would be recouped with improved patient outcomes. I urge Minister Varadkar and the HSE to address the inequities in this service," she added.
March is Lymphoedema Awareness Month and the end of the month will be marked by an open day in the Ashling Hotel, Parkgate Street, Dublin 8, on Saturday, March 28, from 12pm to 5pm.
The keynote speaker will be UK lymphoedema expert, Dr Vaughan Keely. The event is free of charge and is open to anyone who wants to find out more about the condition. Anyone hoping to attend should register at firstname.lastname@example.org.
For more information on the condition, click here