Lymphoedema is a chronic and debilitating condition that doesn’t discriminate by socio-economic status. But not everyone can get access to diagnosis and treatment.
At a Sydney Alliance meeting in Chatswood last week, GP Dr Debbie Geyer from the Lymphoedema Support Group of NSW spoke about how people with this condition are struggling in northern Sydney and the need for a local public lymphoedema clinic. Debbie’s introduction to the issues was followed by a personal story by Carol Walker, also of the Lymphoedema Support Group, and a nursing perspective from Catherine Brennan, a community nurse.
Their focus is on their local northern Sydney district. If you live elsewhere and also have a lymphoedema story, please share in the comments.
Debbie: I work as a GP on the lower north shore and have lymphoedema.
My condition led me to get involved with the Lymphoedema Support Group of NSW and then with the Northern Suburbs Cancer Action Network.
At the Chatswood Sydney Alliance assembly, from left: LynneSaville, Willoughby councillor and nursing lecturer, Dr Yvonne McMaster, Push for Palliative Care, Liz Hing, Chair of Cancer Action Network Northern Suburbs and of Cancer Council NSW, Elaine Kelly RN, Catherine Brennan RN, Carol Walker, Dr Debbie Geyer, Lymphoedema Alliance.
Lymphoedema is the build-up of excess fluid within any part of the body. It can affect people of all ages and develops when the lymphatic system doesn’t work or gets damaged. It can occur as a result of cancer treatment or trauma or as a result of underdeveloped lymphatics. It causes limbs to swell and become uncomfortable and puts the individual at risk of infection. Lymphoedema not only impacts on the person physically, it impacts on them emotionally, socially and financially.
To live with lymphoedema, treatment is needed. This involves wearing compression stockings to keep the fluid out of the limbs and improve flow. Without compression, the swelling increases and infection can occur.
Why am I talking about lymphoedema? Because there is a lack of public lymphoedema services in northern Sydney. Many individuals struggle to get the health care they need due to a lack of affordable and accessible lymphoedema services. Many struggle at home, with nurses coming daily to give antibiotics and apply dressings to chronic ulcers that won’t heal. They don’t get better, as there is no one to treat their underlying lymphoedema. But with good treatment it can be managed.
In northern Sydney there are radical contrasts between those who can access private treatment and those who can’t.
Carol Walker shares her story: I have lymphoedema following breast cancer surgery. I am from the Northern Suburbs Cancer Action Network and, like Debbie, the Lymphoedema Support Group of NSW. I am lucky. I not only survived cancer, I am managing to live with lymphoedema.
I don’t always feel lucky.
Surviving cancer is like climbing a series of mountains. It goes from diagnosis to the fear of losing your hair to the various side effects and constant fear of reoccurrence.
One thing that can make it extra hard is lymphoedema, which can set in after treatment. My cancer surgery required the removal of my lymph nodes, chemotherapy and radiotherapy.
It is my good fortune that I had private health insurance. This meant that from the start to the end I had continuous care from a treatment team. Indeed, nine years later, I am still under their care.
From the start of my cancer treatment, my surgeon made me aware of the risks of lymphoedema. I had access to information sessions about lymphoedema at the private hospital and was given clear instructions about self-massage.
But it was never easy – even with all this. Over time, the combination of heat, a tick bite and a helpful friend led me back to specialists and finally to a hospital for treatment of my lymphoedema.
My treatment was in a clinic in a private rehab hospital. It was intense, three to five hours every day for a month.
But all the time I thought about the people who didn’t have these opportunities for treatment.
My experience led me to the Cancer Council, where I heard more stories of people’s experiences. But these were much worse. Friends like Mary , a pensioner from the lower north shore, who could only afford regular treatment if it was through a public clinic.
I know I am one of the lucky ones. My lymphoedema was caught early enough. By gaining access to private treatment, I can now manage my lymphoedema.
So let’s ensure that for every diagnosis of lymphoedema, there can be access to public treatment in Northern Sydney.
Catherine Brennan RN shares her story: I work as a clinical nurse consultant in wound management for community home nursing. I am here today as a member of the NSW Nurses and Midwives Association.
I would like to tell you a story about one of my patients – we’ll call her Abigail. Abigail is a widow in her 70s who lives on her own. She has children and grandchildren who live out of Sydney. Her only local support is what she receives from her church community.
I met Abigail two years ago and immediately recognised lymphoedema in her lower legs. When I arrived at her home the first time, this is what I saw – hugely swollen legs, with stretched skin, unable to bend her knees or ankles. She was barely able to lift her legs due to the weight. She had fluid leaking down her legs from the swollen tissues. This fluid, which was burning her skin, had an offensive smell and was causing her immense pain. She was unable to care for herself due to her lack of mobility and pain. Abigail was embarrassed by the size of her legs and the leaking tissue and was very conscious of the odour. As a result of the swelling, she developed recurrent infections of her skin and chronic leg ulcers. This required continual antibiotics and she had many admissions to hospital.
Abigail had been suffering from lymphoedema for two years. She had to change her bed linen on a daily basis due to the fluid. She was unable to wear shoes as her feet were too swollen and the shoes were damaged from the fluid.
She had been independent until her lymphoedema prevented her from driving and from leaving her home. The impact was to isolate her from her grandchildren and her church community. Abigail received home nursing to assist with the dressing of her wounds and bandaging of her legs, often on a daily basis.
Marie Fournais, Dr Elizabeth Dylke, Kate Guthrey, Stella Topaz (NSWNMA) and Gemma Arnold at the launch of ‘Lymphoedema Stories’ by the Lymphoedema Action Alliance.
So what does this mean to our community? There is the cost of daily registered nurse visits to her home. The cost of dressings to soak up the continuing leakage of fluid. The cost of antibiotics to treat the recurrent infection. The cost of an acute hospital bed and intravenous antibiotics when her infection was so severe she had sepsis and needed to be in hospital. The cost of her mental health and isolation. Abigail is a pensioner and cannot afford to pay for private treatment for her lymphoedema. She is still receiving expensive treatment from our service.
Abigail’s story is preventable. If she had access to a public lymphoedema clinic, she would have had lymphoedema bandaging and treatment to reduce the size of her legs. This would help to heal her leg ulcers, prevent the ongoing infections, increase her mobility and independence and ultimately restore her quality of life.
Abigail is one of many patients we see every week. They are housebound, isolated and cannot afford private health treatment. They are often elderly and many have chronic and complex health issues. They are largely invisible in our community, but these vulnerable elderly people would get huge benefits from being able to access a public lymphoedema clinic. It would maintain their dignity and allow them to be a valued part of our local community again. And ultimately will reduce the cost on the health care system.
Debbie Geyer again: To close the gap between Carol’s experience and what Catherine describes, we need a public lymphoedema clinic in northern Sydney to treat this complex lifelong condition. That is what the Northern Sydney Alliance District is coming together to advocate for.
We are advocating for a multi-disciplinary public clinic where anyone who has a diagnosis of lymphoedema can get proper treatment. A clinic will improve the quality of life of lymphedema sufferers and limit the onset of severe infections that often result in hospitalisation.
This solution is well within reach.
In January 2013, the Northern Suburbs Cancer Action Network successfully advocated for lymphoedema services at Royal North Shore Hospital to be extended to everyone with lymphoedema. Before this, it was only available for breast cancer patients with lymphoedema.
The clinic ran successfully for six months, but then funding ran out. Those having treatment were outraged. We lobbied the Minister for Health, Jillian Skinner. She recommended that Royal North Shore Hospital look at a way of re-opening the clinic and doing a proper trial.
That was 12 months ago. We want to ask everyone to be part of calling for the Minister to fix this now.
We are asking the Health Minister to make funding available for a public clinic for all lymphoedema patients in Northern Sydney.
We ask you to sign a letter to your MP about this. [Download the letter on this page and send to your MP.]
You might represent an organisation that can facilitate change. An organisation that can make Carol’s story a reality for the many lymphoedema sufferers out there. We call on you and your organisation to stand with us in our campaign and to echo our voice and speak for those who cannot leave their homes to be heard. [Download a letter of support here.]
We have the Lymphoedema Support Group of NSW, telling us of the plight of lymphoedema sufferers. We have the Northern Suburbs Cancer Action Network and Cancer Council NSW, who know all too well the risk of lymphoedema in cancer survivors. We have the NSW Nurses and Midwives’ Association, who know what is needed to adequately treat someone with complex lymphoedema and how current services just don’t meet these needs.
We now need the NSW Government to join us! And this is why, between now and the March 2015 state election, we will be asking the Health Minister, Jillian Skinner, to commit to funding for a public lymphoedema clinic in Northern Sydney.
Download the Lymphoedema Call to Action Letter