The Lymphoedema Service at Middlemore Hospital saved my life

From [L] Peggy, Tracy and Jodie
From [L] Peggy, Tracy and Jodie
Eight years ago Tracy hadn’t heard of Lymphoedema – a swelling in an area of the body due to damaged lymph nodes.

Tracy was a fit, active young woman, competing in track and field. Lymphoedema hadn’t crossed her mind – why would it?   However, that was about to change when she rolled her ankle while taking part in a search and rescue exercise. “My ankle started to swell up, however instead of the swelling coming down over time, it got worse. At one stage you couldn’t tell my ankle from the rest of my leg,” says Tracy.

It took a while for the doctors to diagnose lymphoedema and the treatment that followed did nothing significant to reduce the swelling. “My leg was the size of a tree trunk and I was desperate to try anything in the hope that it would make a difference,” says Tracy.   I tried massage, compression garments and fancy looking lymph drainage machines from different clinicians around the country. This made little difference to my leg. My life changed dramatically.   I couldn’t exercise like I did before, ride horses, which is my passion and I couldn’t fit into my normal clothes and shoes. I had to wear custom-made trousers and shoes which were costly but necessary for my job. I was also in and out of hospital fairly regularly with cellulitis. All it took was a simple scratch and I was in trouble. This required a lot of time off work. I had literally reached the end of my rope and when doctors recommended amputation I seriously considered it. I wanted my life back and if I had to lose my leg to do it then so be it. What I didn’t know at the time was that fate would intervene.   It was on a visit to Middlemore Hospital for yet another bout of cellulitis when I saw a poster in the lift that would ultimately change my life. The poster was advertising the Lymphoedema Service at Middlemore Hospital. My hope started to return. Maybe these people could help me. I immediately booked an appointment.

“When we first met Tracy her leg was grossly swollen – she was really desperate and I think she saw us as her last chance,” says Jodie Reynolds, Lymphoedema Physiotherapist. “Through no fault of her own, Tracy hadn’t been receiving the correct compression treatment or advice and I remember seeing the disbelief on her face when we told her we could reduce the swelling by half.   Sure enough after a few treatments Tracy could see her ankle again!”

“Although we are a small service in terms of resources we are the largest in NZ and have the biggest patient population, says Peggy Williams, Lymphoedema Nurse Coordinator. “Our patient group ranges from paediatrics to the elderly and often have associated complex health issues. We treat congenital lymphoedema as well as secondary which can be due to vascular, trauma, oncology, infection, obesity, surgery, and dermatological conditions. As well as treating patients like Tracey we run ‘at risk’ programmes for those who undergo sentinel or lymphatic dissections for cancer treatment. This is mainly, due to the damage these treatments have on the lymph vessels, resulting in swelling. While every case is individual proper diagnosis is essential followed by appropriate treatment. In the majority of cases compression bandaging and garments can make a huge difference as well as educating people regarding the importance of skin care and exercise. To date, we have 1000 people under our care, however with people living longer, and due to early detection and better cancer treatment this number continues to grow.   While we are a small team (there are three of us) we also provide consultations to clinicians around the country.   Our aim is to raise awareness and provide education about Lymphoedema, which at the moment is a relatively undiagnosed and undertreated condition. We don’t want people to go through what Tracy did.”

As for Tracy she now has her life back. She is back to wearing ‘normal’ trousers and hasn’t’ been back to the hospital with an infection for the past four years. While Tracey knows her condition will never go away, she now knows how to manage it.   Her life is very different to what it was eight years ago.

“The lymphoedema service at Middlemore Hospital saved my life. If it wasn’t for them I’m not sure where I would be right now. I will always be grateful.”

Tracy, Jodie, Peggy and Geraint

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Author: Geraint Martin

Geraint Martin was appointed Chief Executive Officer of Counties Manukau DHB in December 2006. It is one of the largest District Health Boards in New Zealand and services a population of half a million. He has significant experience over 30 years in national policy & in managing both primary and secondary care . Previously, he was Director of Health and Social Care Strategy at the Welsh Government .He authored a radical 10 year strategy of reform, including the successful “Saving 1000 lives” Campaign.Until 2004, he was CEO at Kettering General Hospital & had held senior positions in London & Birmingham.He has worked closely with clinicians in improving clinical standards,patient safety,chronic disease management & managing acute care to reduce hospital demand.In NZ, He has promoted clinical quality and leadership as central to improving patientcare. This has led to a significant increases in productivity and access, whilst maintaining financial balance. CMH has completed in 2014 a $500 m capital redevelopment programme, the largest in New Zealand. A central part of this is the establishment of Ko Awatea,the Centre for Innovation and Research which will underpin CMH as one of the the leading health systems in Australasia.In 2008, he chaired the Ministerial Review of Emergency Care in New Zealand, and in 2013 was an member of the Expert Advisory Panel on Health Sector Performance. Geraint has an MSc in Health Policy from Birmingham University .His post-graduate work has focused on health economics and Corporate Strategy . He is adjunct Professor of Healthcare Management at AUT and Victoria University, Wellington Elected in 2006 as a Companion of the Institute of Healthcare Management, previously he was an Associate Fellow at Birmingham University.He is is Chair of the Auckland Philharmonia Orchestra, a member of the Institute of Directors, on the Board of the NZ Institute of Health Management & previously the Board of The NZ Health Quality and Safety Commission.

13 thoughts on “The Lymphoedema Service at Middlemore Hospital saved my life”

  1. I had been unable to access treatment for many years for lymphodema that started at about age 14 years – legs started to swell for no cause. I was not treated at all until I was about 50 years. I had many years of humiliation from dieticians who yelled at me because I could not lise weight despite a constant 1000-1200 calorie diet, this was due to lipedema and I developed severe lymphodema in both legs. I managed to maintain my mobility despite the huge weight to carry around, and could work- still working for CMH now. Since starting treatment Peggy has been great at providing compression garments that have reduced my risk of cellulitis and size of legs. She is encouraging and careful to do what she can to help.

    Last year I had sepsis related to cellulitis and was seriously ill for some weeks- it has been quite a journey back to work and recovery. I wear my stockings all the time, it helps me to avoid small injuries to my legs and thus infection, and without them I have increased pain and stress in joints.

    Thanks for the Lymphodema service at CMH. But most thanks to Peggy -she is a star.

  2. Unfortunately Mark as Peggy said not all DHB’s have funded or lymphoedema services. Also as they are usually run by one person, this is usually on a part-time basis as they have a dual roles which doesn’t work in a complex, specialist area like Lymphoedema. In these cases they usually have a strict criteria so they may only see lymphoedema associated with cancer so then other patients that do not fit in this criteria do not get seen. Our team work tirelessly educating and raising awarenss of lymphoedema and we access every avenue possible. We present at conferences, GP meetings, publications, Clinical Nurse specilaists, Allied Health, Lymphoedema Support Network and we also act in the capacity of providing consultation around NZ. This is a huge task which we ‘squeeze’ in around our 1000 patient case load between the three of us (2 FTE). Like everyhting we basically need more resouces, to be recongnised and supported. We are literally just treating the tip of the iceburg at Counties. I have come from the UK and worked in a demographic and population similar to Counties and I was part of a 14 full time specialist lymphoedema team and we each had a caseload of approximately 500 patients. We could do so much more……

  3. Unfortunatley Mark as Peggy said not all DHB’s have Lymphoedema services or if they have they are usually run by one person who works part-time as they usually have two roles. In these cases they will have strict criteria and may only treat cancer patients due to their limited resources. The biggest problem is that lymphoedmea is under-recognised and usually ill-treated by inexperienced people. Our team works tirelessly educating and raising awarenss of Lymphoedema, presenting to GP’s, conferences, allied health, nurse specialists, lymphoedema support network meeting, (anybody who will listen basically) which is hard when we have a caseload of over 1000 patients between two of us. I can honestly say Lymphoedema is poorly funded here and under recognised for its complications and speciality area. I came from the UK where we had similar population to CMDHB and I was one of 14 full time specialist lymphoedema therapists and we had a caseload of approximately 500 patients. We are literally uncovering the tip of the iceburg here but the bottom line is we need more funding, recognitiion of our service and support to ensure that Tracy’s situation doesn’t occur.

  4. Thanks Mark. You beat me to it. This is great story from Tracey’s perspective but it exposes the flaws in the system when hospital specialists treating Tracey were unaware of services available for her specific problem.

  5. Unfortunately this type of story is all too familiar to us. Lymphoedema has been, and still is, a very under-recognised and under-diagnosed condition, and we have many patients who have been in similar situations as Tracy. Lymphoedema is far more prevalent than most would realise, particularly primary lymphoedema for which there is 12 different causative genes currently known. Unfortunately lymphoedema is an under-resourced area in NZ, and some DHBs do not even have a lymphoedema service. We provide education for patients, CMH staff and Primary Health, to raise the awareness of lymphoedema and its associated complications, particulary cellulitis, to ensure early recognition, identification of those at risk, and early referral for treatment. Although we have growing patient numbers within our service with stable resources, we are always looking for ways to improve outcomes for these patients, and we work with many other services to do this.

  6. I too have been priviledged to have the support and advice of the lymphoedema service. As a fellow staff member they have made every effort to find the best compression garment for me to allow me to continue to work. Thank you.

  7. I too am grateful for the service having developed arm lymphodema following a wide auxillary clearance for stage 3 breast cancer. This is probably one of the most distressing lasting effects from the whole experience [and there are a quite a few!] and will be ongoing for the rest of my life. The service is under resourced and research regarding lymphoema treatments sorely needed. Yet so very very valuble to a quality of life!

    1. Thank you for your response, Sally. Secondary lymphoedema is a distressing and ongoing legacy of cancer treatments.Research has shown that programmes such as our Lymphoedema Risk Awareness Programme which provide screening and education for patients following lymph node biopsy and dissection are key to minimising the associated risks such as cellulitis and reduced limb function. We currently have such programmes for breast and skin cancers, andn are working towards implementation of further programmes to include gynaenacolgy, & head and neck cancers.

  8. Well done-this amazing team is making such a difference for patients and their family/whaanau. Good to see you raise your profile.

  9. A wonderful positive story of a specialised service making a huge difference to someones life, thank you.
    Though I have to ask why our system was not able to provide Tracy the care she needed so much earlier? She visited hospital and other parts of the healthcare system repeatedly – even to the point where an unnecessary amputation was considered – and it took Tracy herself, by chance, to notice there was an alternative (and correct) treatement option.
    What have we done to prevent this happening to other people with poorly managed lymphoedema?

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