"I’ve done my bit, I’m calling time" By LSN Chair, Anita Wallace MBE

The Lymphoedema Support Network (LSN) is the leading UK patient charity supporting people with lymphoedema. It was formed in 1991 by two nurses and seven patients from the Royal Marden Hospital, London, with the help and support of Professor Peter Mortimer.

After many years of working with the LSN, I have decided that I want more time to spend on my other interests, yes, I really do have other interests, but currently struggle to find enough time to enjoy them. I also travelled to India earlier this year and toured around Kerala, this wonderful experience has really given me the travel bug. So, I will be standing down from my role as LSN Chair following our AGM in September but here are some of my favourite memories of my time with the LSN.

So, how did I get involved in the LSN? Following my treatment for breast cancer in 1992 and diagnosis of lymphoedema three years later, when I was told by a physiotherapist who kept her notes in a pocket diary, “that I had lymphoedema, but I had better get used to it as there was no cure!” Those few words had a devastating and prolonged effect on me, particularly as I was given no information or support, apart from an LSN leaflet. It took me six months to contact the LSN and I joined in 1996. In that six months, I had become more and more angry that I had a condition I’d never heard of, no one else seemed to have heard of, and there was very little information available for people, this made me determined to do what I could to change that.

I soon became a volunteer in the LSN office doing whatever I could to help. Two years later I was invited  to become a Trustee and subsequently elected as Chair in 2000, which I have to say, came as a huge shock, I wasn’t expecting that and was rather thrown in at the deep end… but I quickly learnt how to swim!

My personal priority was, of course, to provide better information for people living with lymphoedema. I had also been directed by the previous Chair to engage with Professor Christine Moffatt and the Lymphoedema Framework, a precursor to the current International Lymphoedema Framework (ILF), this involvement introduced me to many British Lymphology Society (BLS) practitioners who subsequently helped me to develop our patient information resources. 

Another task was to engage with a professional political lobbyist, with a view to launching a political awareness campaign in the hope we could secure better treatment for all people with lymphoedema.  Following several meetings with the lobbyist I became very well informed on the avenues open to us and how to implement them. Between 2001 and 2005, the LSN worked hard on its campaign, I visited the Houses of Parliament many times for meetings with various MPs, often asking Prof Mortimer to accompany me for support.  We followed all possible routes available to us but to no avail; Parliament didn’t help at all to secure better treatment for people. The party line was that the local health authorities allocated funds to suit the needs of their local population. While I really enjoyed working on that campaign and met some very interesting people, asked if I would I do it again, the answer would be no, because the outcome would be the same.

By this time the LSN patient information was becoming more comprehensive, but we were still receiving calls from people about the treatment of cellulitis and the lack of understanding from their GPs. I mentioned this to Prof Mortimer who told me that a consensus view on the best way to treat cellulitis was needed before any further information could be written. Not to be beaten, I asked him if he would support me, if I could manage to arrange and facilitate a meeting, which he subsequently did. The first meeting of the Consensus Panel took place in October 2005 at the BLS conference where I had secured the help from a multi-professional team of HCPs willing to have input. That is how the now well-used Guidelines on the Management of Cellulitis in Lymphoedema document began. What started life as information for an LSN fact sheet became widely used by HCPs both here in the UK and overseas and I am very proud of this achievement.

For many years the LSN and BLS have worked productively together and I hope this will continue. I have worked with several BLS Chairs and committees, many prominent specialists in lymphoedema, including Dr Jacqui Todd, Dr Caroline Badger and Eunice Jeffs in the very early days, right through to Prof Mortimer and Dr Keeley, all of whom taught me a great deal. I have also attended around 26 BLS conferences and numerous other health related conferences including GP conferences. I have also worked with many other groups including the National Lymphoedema Partnership.

Moving on to more recent years, I suppose the icing on the cake for me was being awarded an MBE in 2019 for services to lymphoedema awareness and patient support.  Receiving my medal from Prince William was a very special moment for me.

Having fulfilled my initial aim as Chair, the LSN has become the largest patient information resource in the UK and, I’m told, in the world. Based on this information, which was originally written by dozens of lymphoedema practitioners, sadly, some of whom are no longer working in the field, my lockdown project was to produce the LSN’s first book, ‘Your lymphoedema – taking back control’, focussing on self-management, which I’m pleased to say has been a huge success and is in its second print run.

When I first started out, there was little mention of lymphoedema anywhere but thanks to the work of the LSN, BLS and other organisations it is now far more prominent. I have loved my time working with the LSN and meeting so many amazing people!

Yes, I will miss everyone in my team, but I am looking forward to a new chapter in my life and have already booked my next trip away!