March is Lymphoedema Awareness Month which aims to highlight the condition for those who may be at risk, reach-out to those who may be living with the condition and feeling isolated and alone, and raise awareness of Lymphoedema within the medical community. Lymphoedema Ireland is running events across the county throughout March, and will host an open day on Saturday 28th March in Dublin.
Lymphoedema occurs when the lymphatic system fails to function causing persistent swelling and can affect any part of the body. Persons may be born with lymphoedema (primary) or develop it (secondary) because the lymphatic system has been damaged. Approximately 15,000 people in Ireland are estimated to have Lymphoedema and the numbers are rising, with over 1,200 developing Lymphoedema each year following treatment for cancer. Lymphoedema Ireland is also highlighting the lack of proper standardised services and referral pathways, as well as the unequal distribution of services and supports available.
According to Nina Murray, Chairperson of Lymphoedema Ireland, “There are thousands and thousands of people suffering from Lymphoedema 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.” ”We are calling on the HSE to publish the findings of the report on the lack of Lymphoedema service provision, and to put in place a plan to develop services in recognition of the growing incidence of the condition,” she added.
Donal Buggy, Head of Services, at the Irish Cancer Society says, “We know this review was initiated at least 2 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.”
There is no cure for Lymphoedema. It is a progressive disorder that can have a devastating impact on patients’ lives. However, if diagnosed and treated early by an experienced specialist, the extreme swelling can be controlled and reduced, infection prevented and the range of movement of the affected area can be improved to limit the extent of the disorder and the impact it has on the life of the patient and their family.
According to Prof. Mary Paula Colgan, Associate Professor of Vascular Disease, Trinity College Dublin and St. James’s Hospital, Dublin,“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 recurrent cellulitis, immobility and ulceration all of which have a significant financial cost for the health service and physical, psychological and financial impacts for patients. We have excellent lymphoedema therapists in Ireland in both the public and private sectors. As a clinician my greatest difficulty is accessing these services for patients as several areas of the country provide no services at all, while 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.”
”We should look to our near neighbours Northern Ireland and Wales who until quite recently had disjointed services similar to ours but they launched a co-ordinated lymphoedema network which has resulted in a comprehensive and equitable service for patients with lymphoedema. 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.
Throughout March, Lymphoedema awareness events will take place in hospitals across the country and the Irish Cancer Society’s Daffodil Centres and other facilities will have trained nurses and volunteers available to provide information on Lymphoedema to anyone with queries about the condition or their risk of developing it.
The end of Lymphoedema Awareness Month will be marked by an open day on Saturday 28th March 2015 from 12pm to 5pm in the Ashling Hotel, Parkgate Street, Dublin 8. Keynote speaker is Dr Vaughan Keeley, an expert in Lymphoedema and Consultant in Palliative Medicine, Derby Hospitals UK.
The event is free, and anyone who is living with Lymphoedema or who wants to find out more about the condition is welcome to attend, and can register by emailing firstname.lastname@example.org