Lymphovenous Canada: Canuck in England - at the 2nd International Lymphoedema Framework Conference

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March 25, 2010

This is my last blog for the 2nd Annual Lymphoedema Framework conference in Brighton, U.K. My camera became waylaid somewhere between the trip to the airport and the flight to Toronto - but Gatwick Airport found my camera so I am adding pics a few weeks after this event. Gotta love the Brits!!

In the meantime I hope the short videoclips which I took of some of the speakers at the conference, and the short descriptions below give you a glimpse of some of the excitement of workshops at this event. More information and presentations from the conference will be available from the International Lymphoedema Framework website in the future - so please visit it at: http://www.lympho.org/ and join the movement!

Thursday wrapped up with a plenary session which dealt with lymphoedema in advanced cancer and at the end of life. The issues in this plenary flowed from the joint position document developed by the ILF and the Canadian Lymphedema Framework: The Management of Lymphoedema in Advanced Cancer and Oedema at the End of Life.

Dr. Anna Towers, who works in palliative care at McGill University Health Centre in Montreal, Quebec and Dr. D. Keast, who works at the London Health Research Institute in London, Ontario made major contributions to this paper. The principle here is to provide care in a sensitive way which reduces discomfort, while maximizing independence, ensuring that what is done is consistent with the goals of the patient and family. (An on-line version of this publication will be available through the International Lymphoedema Framework website soon at: http://www.lympho.org)

Surgery for lymphedema was the other key plenary session on this last day. Surgery for lymphedema has been fraught with controversy over the past few years. Although surgery has had a positive role in managing genital lymphedema, the scarring and repeated infections associated with debulking procedures, as well as mixed success and complications associated with microsurgery, have made many lymphedema practitioners cautious about recommending surgery for other types of lymphedema, except in situations where an individual has had little or no success using more conservative treatments such as CDT.

In the past 10 years liposuction has shown some promising results in treating individuals with lymphedema with minimal scarring, for lymphedema which does not respond to other types of treatment - in jurisdictions where this kind of treatment is carefully regulated. Patients must wear compression garments 24 hours a day however after surgery has taken place. Dr. Håkan Brorson, who is senior consultant plastic surgeon at the Department of Plastic and Reconstructive Surgery, at Lund University in Malmö, Sweden, has spearheaded treatments in this area, and spoke eloquently about his treatment at the conference. He has trained teams from Denmark, USA, Netherlands, Scotland, Switzerland and Australia to treat lymphedema with liposuction.

Professor Baumeister with the University of Munich at München, Germany reported at the conference on using microsurgery to use lymphatic vessels for bypass procedures, along with liposuction. He indicated that in some cases of lymphedema in upper limbs, patients have been able to maintain reduced limbs without using compression garments.

During audience discussion, Professor Ethel Foeldi suggested the need for research to understand the impact of drugs such as Tamoxifen in effecting adipose fat cells which are targeted in liposuction treatments.

Although surgical results appeared promising, an objective comparative study in this area would be helpful to assure patients and referring physicians that they are embarking on a treatment regime that is effective.

Finally, Professor Mortimer, professor of Dermatological Medicine at St. Georges Hospital in London, UK. challenged conventional thinking again through research that suggests that tissue fluid is not being re-absorbed through the veins. He has found that in most vascular beds (except gut and kidneys) interstitial fluid generally drains via the lymphatic system. Conclusion: all chronic edema represents lymphatic failure and treatment should always consider improvement in lymph drainage. In other words - the lymphatic system is a lot more important than anyone had previously realized!!

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March 24, 2010:

A rainy day in Brighton and everyone is feeling a little bit tired after yesterday’s exciting agenda. Despite our exhaustion we were soon engaged in the day’s events which started with workshops on:issues of concern to children with lymphedema, obese/bariatric patients, breast cancer and lipoedema, as well as general interest sessions such as exercise treatment, meditative exercises and footwear solutions for swollen feet (who can’t identify with that!!)

I spent the day grazing – going from one session to another and getting waylaid by discussions with folks from difference countries, including colleagues from India who insisted that I spend some time learning practicing meditation – which is a key component of their treatment program for patients with filariasis in Kerala.

The strength of this conference – and the frameworks themselves - is that they combine a whole new group of people with interest in this area, with those who have been working in this area for quite some time such as experts who are also members of the International Society of Lymphology, and, for example, people like Saskia R.J. Thiadens, RN, Executive Director of the National Lymphedema Network in the U.S. who has been a driving force in this area.

Given the lack of awareness on the treatment of childhood lymphedema by general practitioners, pediatricians and geneticists, the International Lymphoedema Framework has decided to launch an international campaign to raise awareness in this area. At the conference it released the focus document Care of Children with Lymphoedema – the first of a series of publications leading to the establishment of a Consensus Document on Best Practice in the Management of Children with Lymphoedema.

Severe obesity in the western world and industrialized countries is creating a new group of individuals who are developing lymphedema as their lymphatic and other systems fail with the added strain on their bodies.  Practitioners who treat this group – such as the Foldi Clinic in Germany – have encouraged their patients to lose weight before they get compression therapy – however the success of diets has been limited.  Using conservative methods of treatment after these individuals receive bariatric surgery has been found to be the most effective way to treat these individuals.

Researchers in the area of breast-cancer related lymphedema continue to try to understand why some people get lymphedema after breast cancer treatment while others do not. Research being undertaken by Professor Peter Mortimer suggests that women who develop the highest lymph flow post surgery are most at risk of developing subsequent arm swelling.  He believes that these women are genetically pre-disposed to getting lymphedema.  Meanwhile Professor Lievens in Brussels has undertaken research which suggests that women who say they feel they have heavy limbs – but don’t have any discernible swelling – are indeed experiencing changes in their tissues which will likely lead to lymphedema. He suggests that preventative physiotherapy be standard procedure to prevent these tissue changes and the development of lymphedema.

Watch for upcoming lists of footwear useful for persons with lymphedema who have swollen feet.  Many of us wished we had some of this footwear as we participated in a country dance and fundraising activities in the evening which raised over 500 English pounds towards the on-going costs of the International Lymphedema Framework!!

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March 23, 2010:

What an eventful day!

Today was the official opening of the conference and our Canadian representatives were abuzz with good news – we will be holding the (next) 2011 International Lymphedema Framework conference in Toronto, Canada!!

Image that!  I guess the co-ordinating committee figured we did such a great job holding the winter Olympics chances were good that we could pull off a great ILF conference!  Seriously though – next year will mark the first year the conference will be held outside the UK.  Plans are to hold it in different sponsoring countries every year where Lymphedema Frameworks exist.

Today we heard from representatives of countries which are at various stages in establishing Lymphedema Frameworks (IF). IF’s are partnerships of stakeholders within a given country who are dedicated to improving lymphedema care such as patients, practitioners, researchers, related organizations and industry.

As countries begin to look at establishing Lymphedema Frameworks, they will have the benefit of using a new policy document launched at the conference which provides some  guidelines for starting a Framework: Lymphoedema Frameworks – The Way Forward”.

 Key elements of the ILF, which participating countries are asked to contribute to, are:

• An annual conference, where a patient conference is also hosted.
• Educational and professional initiatives
• Innovation in product development, partnerships with industry and new diagnosis and treatments. Such innovations will be subject to rigorous research

Countries are expected to adapt, as necessary, the International Best Practice for the Management of Lymphoedema document for their countries as they establish their Lymphedema Framework (in Canada’s case – we have adopted the existing document as is since our health care system is similar to that of the UK’s).

Countries are also expected to gather data to identify lymphedema incidences and service usage in each country. They are expected to implement best practices within services using the minimum data set to measure health outcomes and cost effectiveness and to use the outcomes from this work to drive improvements in practice and improved reimbursement if required.

This might seem pretty ambitious – but the following 8 countries have already stepped forward and indicated they are up for it:
  - Japan: 9 delegates are attending the conference – their Lymphedema Framework has been in place for 6 months. They have adapted and translated the International Best Practice for the Management of Lymphoedema document;
- Israel: has a support group which has been around for 6 years made up of 150 members 2/3 patients and 1/3 therapists;
- New Zealand: has a small core team of people getting the ball rolling;
  - Denmark: a couple who run a centre of excellence, is working with a support group of 600 patients and 130 therapists to come together to establish a Framework;
- Sweden: The Swedish Lymphedema Association is looking at updating a 2003 Best Practice document, has introduced a Lymphedema Awareness Day in September are hoping to engage the medical community as they move towards establishing a Lymphedema Framework in their country;
- Australia: is building on the work that has been done in this area since 1991 by bringing together current stakeholders in addition to other stakeholders who may not have been involved in this area yet – but still have a interest in it;
- Canada: LF initiated in 2008 – incorporation has now taken place and we are off the ground!, and the
- U.S.: LF also initiated in 2008, data research is underway and will be completed by January 2011 with a comprehensive literature review which will feed into their Best Practice document.

Other conference sessions included (but were not limited to):

• Information on the establishment of the Wound Alliance for Wound and Lymphedema Care, presented by Dr. John MacDonald from the U.S., and information on their very inspirational work in Haiti healing wounds after the earthquake.