Understanding the Patient’s Agenda by Gaynor Leech

"Early October, I attended my 5th conference with The British Lymphology Society, (BLS)...

I have attended three in person and two online during Covid. On a personal level, I still see my attendance at this conference as a privilege. While patients have attended and presented at this conference in past years, the BLS is the highly respected organisation/arm for clinicians and health care professionals (HCPs) within the Lymphoedema Community. The Lymphoedema Support Network (LSN) is the nationally recognised patient organisation for Lymphoedema support. So, ordinarily, those of us who live with lymphoedema, are less likely to attend the BLS conference and more likely to attend the LSN Patient Conference.

Gaynor Leech, Lymphoedema Patient Advocate and Founder of LWO Community

As someone who lives with lymphoedema, attending the BLS conference has increased my knowledge of lymphoedema and the lymphatic system and given me the opportunity to pass onto my members and the wider community my learning experiences. I have long advocated to raise the power of the patient voice and fervently believe in community engagement. Therefore, to be invited to co-present with Matt Hazledine was a wonderful opportunity to represent patient voices.

'A Simple Ask' Matt Hazledine of Lymphoedema United approached the BLS earlier in 2022 to suggest that it may be helpful for HCPs to hear first-hand from someone who lives with lymphoedema, and the physical and mental challenges patients face daily. Matt’s idea was well received by the society. The BLS approached me and asked me if I would be interested to take part in a workshop to provide a balanced representation for patients.

Early planning meetings prior to conference, it became clear that one workshop had turned into five. Eek! However, there was no need to be concerned because we were mentored and supported by BLS Trustees, Jane Board and Lorraine Brown who facilitated the workshops throughout. I learned a lot from both.

The title of the workshop, “Understanding the patients’ agenda: the patients’ perspective”. We agreed that the five sessions of 45 minutes would be an interactive session between patients and Lymphoedema Practitioners. Matt and I were introduced by our hosts, and we were both given time, to tell our stories on how we developed lymphoedema, how we live with our condition and the impact living with lymphoedema has on our lives. Matt was able to introduce his website Lymphoedema United and book entitled “How to live better with Lymphoedema”. The book details Matt’s journey along with the expert opinions of the clinical specialists he has been lucky enough to have access too. Lymphoedema United provides a one stop shop for patients to find clothes, compression, and many more essential items to improve the lives of those living with lymphoedema. He is also passionate about getting more men talking about living with lymphoedema and the impact it has on their lives.

My introduction to the workshops provided me with a chance to tell my story and how my eagerness for understanding my lymphoedema led to me setting up ‘lymph-what-oedema’ which has now become L-W-O Community. I was able to talk about the importance of the patient voice and why I think we all need to work together as a community. I was thrilled to have the opportunity to talk about L-W-O Community support group, how our members listen to each other, and when we don’t have the answers from our lived experiences, we signpost to respected organisations.

I recognised in the early days of running L-W-O, that the language we used was often a barrier to self care. While we all recognise and agree on the necessity as part of our lymphoedema self care, that diet and exercise should be part of our healthcare plan, sometimes the way HCPs put this across often has the opposite effect.

Therefore, we talk as patients using terms like #lifestyle and #GetMoving. Wherever possible, we debunk the myths, we talk in terms of guidelines and sensible precautions as opposed to the old-fashioned dos and don’ts lists that used to be handed out. We do this because we are all different, and there is no one size fits all, for those of us who live with lymphoedema.

By telling our stories Matt and I were able to share the impact of lymphoedema on our lives and the effect it has on both our mental and physical health.

After sharing our stories, the workshop then became a Q&A session with prepared questions which opened the door to further questions from our audience. Attendees had access to the Whova app, which was used prior, during and for a short while after conference. This gave users of the app an opportunity to communicate with delegate’s, exhibitors, and speakers, to book workshops, ask questions, take part in polls, and contact each other. Personally, I was not a fan of the app and found many of the features I tried to use did not work. However, that is my opinion, but I can see its potential for future conferences.

There were four key objectives that Matt and I wanted to get across to the BLS and the HCP’s who attended our workshop.

• Understand Us – How are you? Check our mental wellbeing
• Educate Us – Tell us why wearing compression, movement, skincare, helps us
• Train Us – Show us how to self-bandage and perform SLD effectively
• Empower Us – To take control of our lymphoedema

Our members become extremely upset when their treatments plans do not explain properly why they should wear compression, it isn’t good enough to simply say “it will reduce your swelling”, they want to know how it will reduce their swelling. This applies to every aspect of their treatment, if HCP’s take the time to explain properly, then patients are more likely to comply with their treatment plans.

Running the L-W-O Community support group gave me the opportunity to ask of my members the same questions that was put to delegates and I ran polls over several days. This was one of our questions.

Question: "Is it necessary for Lymphoedema Practitioners to explain the lymphatic system to their patients?"

Answer: Yes… 100 percent

In nine years of running polls, I have never had a 100 percent answer before.

Outcomes of our workshop will be published in the BLS News and Views magazine in due course. The feedback that Matt and I received, during and after conference, has been extremely positive. I am thrilled that we were able to express the need for a holistic approach to our treatment, to be treated as individuals and that we as patients really do want to understand and take control of our lymphoedema.