March 2014 Ireland’s first Lymphoedema Awareness Month which is taking place this month and is being organised by Lymphoedema Ireland, the patient led network that offers support and advice to people living with lymphoedema in Ireland. The aim of the month is to highlight the condition and to reach out to the thousands of people living with lymphoedema in Ireland.
What is Lymphoedema?
Lymphoedema is a poorly recognised condition despite the fact that possibly around 15,000 people in Ireland are living with the condition. Lymphoedema can affect people, men and women of all ages – from birth to old age. There is no cure. It occurs when the lymphatic circulation fails to function correctly and usually affects the limb(s) and may also affect the trunk of the body, breast, head and neck or the genital area. The condition causes excessive amounts of protein-rich fluid to accumulate in one or more areas of the body causing swelling which can be extreme, distressing, debilitating and life-changing. All forms of lymphoedema can worsen with time so early diagnosis and treatment to manage symptoms is critical to minimise the progression of the disorder, limit complications and the impact it has on the patients’ health and lifestyle.
Lymphoedema can be hereditary or develop as the result of trauma to the lymphatic system. In the majority of cases it develops because of treatment for cancer. One in 6,000 babies will be born with the condition, and it is estimated that at least 1,300 people are diagnosed every year as a result of treatment for cancer (either radiotherapy or the surgical removal of lymphnodes). Incidence of lymphoedema among the Irish population is likely to increase 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 (formerly Irish Lymphoedema Support Network) was founded in 1995. Our volunteer patient-led national network offers support, help and information to anyone in Ireland affected with lymphoedema. Membership is open to anyone who suffers from Lymphoedema, their family and friends and those with an interest in furthering the aims of the network.
Recently Lymphoedema Ireland has redeveloped our website which now contains lots of useful information for people who want to know more about the condition and to connect with other people living with lymphoedema. www.lymphireland.com. A new information leaflet with the assistance of the Irish Cancer Society has also been developed. The leaflet can be downloaded from our website here or ordered directly from the ICS website here.
Lymphoedema Awareness Month March 2014
Ireland’s first Lymphoedema Awareness Month was launched on Saturday 1 March in St. Luke’s Hospital Rathgar by Miriam O’Callaghan. The day was a great success with in more than 150 people in attendance Check out www.lymphireland.com/
March 2014 will be the first time Ireland will mark what is internationally been known as Lymphoedema Awareness Month. Lymphoedema Ireland with the support of the Irish Cancer Society and MLD Ireland are using the month 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;
- raise awareness amongst medical community;
- highlight the lack of proper standardised services and referral pathways, and the inequitable distribution of services and supports for the condition around the country.
- call on the HSE to put in place a plan to develop services in recognition of the growing incidence of the condition.
The HSE has not recognised the international consensus on how lymphoedema should be treated. As a result of a lack of early intervention and appropriate ongoing support, people with lymphoedema are being hospitalised with of acute infections; are unable to work, and are need additional social welfare supports. This is an inefficient use of scare resources.
Northern Ireland, England, Wales and most recently Scotland, have acknowledged the need to invest and develop services for people with lymphoedema. The NHS estimate that for every £1 it spends on services for lymphoedema £100 is saved. As it stands, people with lymphoedema in the Republic of Ireland are experiencing a lower quality of life and much more likely to develop significant and potentially life-threatening complications of lymphoedema than their neighbours in the North. Taking account of all of these issues, the HSE cannot afford not to invest in a properly structured framework of services for people living with lymphoedema in Ireland.
We understand that Dr. Philip Crowley, Director Quality and Patient Safety in the HSE has recently received a report on current service provision which includes a number of detailed recommendations. This report was initiated by health professionals within the HSE arising from their concerns about the quality of treatment for patients with lymphoedema. Lymphoedema Ireland are asking that the HSE consider the findings of this report with a view to considering how the public health system can better support people living with lymphoedema; in Ireland in recognition of the long-term nature of the condition and the growing incidence.
Other activities in March
Lymphoedema Ireland also organised with the assistance of a number of helpful hospital staff and medics a special awareness event in hospitals on March 6th. A number of hospitals supported us in providing an information stand throughout the day where patients and specialist therapists were available to answer and queries and generally create awareness of lymphoedema throughout the day.
Throughout the Month Irish Cancer Society centres are providing information about lymphoedema and offering support and advice to anyone who has any concerns about lymphoedema. Lymphoedema Ireland are very grateful to the Irish Cancer Society and all other organisation that are supporting us throughout the month.
MLD Ireland (the association of manual lymphatic drainage practitioners) are also supporting Lymphoedema Awareness Month this March. Therapists are offering free assessment sessions to anyone who feels that they may be at risk of lymphoedema or who wants expert advice on how to manage the condition. A list of participating therapists is on their website www.mldireland.com