CAROLINE Costello and Norma Deasy are two Cork women who live with a condition called Lymphoedema.
Caroline is from Monkstown and a 52-year-old Lymphoedema patient. After developing Secondary Lymphoedema in 2017 due to cancer treatment, she exhausted every avenue to treat the condition — and again options proved very limited.
After a lot of researching, last January she went to UK for a private surgery (called Lymphaticovenular Anastomosis) — which has been available in other countries for many years. It has already showed significant signs of improvement to her affected limb.
Norma, from Dunmanway, is 57 and was attending treatment for the condition in Cork city from 2006 to 2010, but had to stop as the cost of the taxi there and back was too expensive, and travelling on the bus was very painful. Living since then without basic treatments has greatly affected her quality of life, as there are no comparable services available locally.
These two patient stories highlight the challenge of accessing treatment for Lymphoedema, and come at a pivotal time for the 15,000 patients who live with the condition across Ireland.
A first-ever national model of care for Lymphoedema has been agreed by the HSE last month and now awaits implementation.
Lymphoedema involves painful swelling of the limbs, mainly the arms and legs. It occurs when the lymphatic system, which normally drains fluid, isn’t working properly.
Lack of treatment can lead to increased swelling and pain, irreversible damage to the lymphatic system, recurrent infections, the inability to work and a dramatically reduced quality of life.
There are two types of lymphoedema: Primary Lymphoedema is a genetic condition while Secondary Lymphoedema develops because of damage to the drainage system caused by radiotherapy, advanced cancer, deep vein thrombosis, cellulitis, paralysis or obesity. Many cases occur in particular following breast cancer treatment.
Lymphoedema Ireland is urging that the new ‘Model of Care’ now be rolled out urgently.
Making routine treatment readily available locally will avoid problems escalating and unnecessary and costly hospital admissions. We know that better results for patients, 15,000 hospital bed nights and €13m in savings — can be achieved through developing dedicated localised services.
This view is shared by Caroline Costello: “It is hard to accept living permanently with this heavy and hot leg. Hopefully a greater selection of treatments, including surgeries, will become more available in the future,” she said.
In fact, the medical Consultant who delivered her surgery in the UK has been invited to come to Cork University Hospital this summer to speak with doctors in Cork about the treatment she accessed abroad.
Norma Deasy also highlighted the urgent need for greater access to treatments: “For those who don’t know what leg lymphoedema feels like, try imagining a seven year old child hanging on to your leg while you try to walk.
“What is needed is a local lymphoedema Manual Lymph Drainage therapist who can cater for Medical Card patients in the patient’s own town, health centre or local hospital.”
There is no cure for Lymphoedema, but if diagnosed early extreme swelling can be controlled and reduced, infection prevented and the range of movement can be improved.
Around 1,000 of Lymphoedema patients are children and the development of treatment services should also address the needs of children.
Furthermore, a long term illness card is needed for those affected, as they have to live with it is a life- long condition.
Lymphoedema can also have a significant psychological impact on patients. One patient who regularly attends our open day described it as ‘the only day she feels normal’.
The condition affects more people than either Multiple Sclerosis or Parkinson’s disease and needs a great level of awareness among doctors and the general public.
By developing local treatment services outcomes for patients can be improved, public monies saved and bed nights freed up in hospitals.
I am calling for speedy implementation of an Irish model of care for Lymphoedema. We need details of how or when this will begin. Our organisation and our patients are available to do all we can to support it.
The early warning signs of Lymphoedema are:
1. Transient swelling of a limb or other region of the body
3. Aching, heaviness, stiffness in the affected body part
4. Limitation of movement
5. Tightness or temperature changes to areas of the body
6. Clothing, jewellery or shoes may feel tighter
7. Swelling may be aggravated by heat, overuse, sustained positions or prolonged inactivity.
Ireland is organising an Open Day in Dublin on Saturday March 30. Register at www.lymphireland.com/open-day-2019/
Lymphoedema Ireland is a voluntary patient group representing patients and their carers. It provides information, a telephone helpline, an online discussion forum and an Annual Open Day.www.lymphireland.com Twitter: @LymphIreland Facebook: https://www.facebook.com/LymphIreland/