Gaynor Leech Guest Blog - December 2021

This will be my last blog of the year for 2021 for the PhysioPod Magazine and what a busy year it has been sometimes quite a roller coaster ride of deadlines, research, and learning.  The experience I have gained over the last 12 months has been invaluable for myself and L-W-O Community. 

 

 

My favourite strand of the Newsmagazine has been seeing our support group members questions being answered by the amazing Jane Wigg.  Where Jane finds the time to do all she does is amazing but as a support group we have all learned so much from the time and effort she has put in helping our members understand not only lymphoedema but the lymphatic system and lymphatic health. 

Mary has enhanced Jane’s work by producing the educational videos so that not only have we had the written article we have been able to watch the visual aspects of how the lymphatic system works.  I have also enjoyed reading all the personal patient stories, some of them with a box of tissues to hand, other stories were uplifting as everyone rose to the challenges they faced.  In case you missed my blogs for the Newsmagazine you can catch up here …

 

 

As I have learnt over the last eight years learning about lymphoedema is so much more than just concentrating on the condition itself.  For those who have followed us from the beginning my main reason for starting L-W-O was to understand lymphoedema what it is, why it happens and why did it happen to me.  With increasing knowledge from a patient perspective, I started to learn about the mechanisms behind the condition of lymphoedema.  The more I learn, the more I understand about the lymphatic system. For me as a patient living with lymphoedema my focus has shifted over the last 18 months to why I should improve my lymphatic health.

 

I do not pretend for one minute that I understand the biology or physiology of how the lymphatic system works but what I have gained is a greater understanding of how I can improve my lymphatic health and share what I learnt.  However, I must add here that we are all different and therefore what is right for me will not be right for someone else.  If we can share our knowledge, then patient empowerment through community engagement will triumph.

For me 2021 has been a tipping point the self-doubts of continually asking myself “Why are you doing this”?  “Why do you put yourself under so much pressure to raise the profile of lymphoedema?”  Even I do not have a simple answer to my own questions what I do know is that patient advocacy is making a real difference as the recent International Lymphoedema Conference has shown.

 

WE NEED MORE PATIENT ADVOCATES

Are you a person that that sits at home knowing you have a voice but afraid to speak out?  Maybe afraid that nobody will take you seriously?  Or are you of my generation who was brought up and had it drilled into you that you had to respect and not question the health care professionals who are advising you on your health.

That was me ‘sorry Mum’.  I never intended when I started L-W-O to make a noise or have an opinion, I just wanted to learn about lymphoedema. However, as L-W-O grew so did I.  Below is one of the reasons why patient advocates can and do make a difference.

In 2019 I was invited to become a patient representative for The European Patient Advocacy Group (ePAG).  The group works on the principal that we are Expert patients and therefore best placed to educate patients and families on the management of their diseases such as paediatric and primary lymphoedema (PPL).  The UK representatives are L-W-O Community and the Lymphoedema Support Network

The European Patient Advocacy Group can identify and recommend expert centres or other HCPs across the UK and the European Union. The group has successfully published in 2020 and 2021 manifestos with a call to action. The 2021 Manifesto co-signed by 27 Patient Associations and translated into 11 languages, for World Lymphoedema Day, March 6th, 2021. 

 

 

An Abstract Poster of the manifesto was presented in November at the ILF Conference in Copenhagen, and I am delighted to report the team presenting the poster won first prize for best patient poster. 

Our congratulations to Pernille Henriksen, Manuela Lourenco, Elena Matte, Eline Hoogstra and Carina Mainka.  The poster on patient collaboration and support is tilted:

“Collaboration of VASCERN’s Paediatric and Primary Lymphoedema patient representatives to ensure patient empowerment and transmission of the patient’s point of view”. VASCERN: is The European Reference Network (ERN) on rare multisystemic vascular diseases.

 

 

So don’t ever think you couldn’t become a patient advocate,

don’t ever think you won’t be heard.

 

This is the time of year I take a break to concentrate on my family so I look forward to sharing my thoughts in the next PhysioPod NewsMagazine which will be on 1st February 2022.

 

My final thought for this Newsmagazine is...

 

From all of us at L-W-O Community, have a Happy Christmas and thank you for your support in 2021.

 

xxx