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Community Engagement

 

This is the L-W-O Community Engagement page. It's an excellent opportunity to educate guests about the backdrop, context, and history of the volunteer work I've done over the previous ten and a half years. I am aware that organisations in our community have historically been wary of collaborating with patient groups because they are very protective of the work they undertake.

As the founder of L-W-O Community, I am passionate about community involvement because I feel that by collaborating with other groups, individuals, or organisations, we can do so much more as a team to educate, enlighten, and raise awareness about lymphoedema.

Mary Fickling PhysioPod UK

“Logo of PhysioPod® UK Ltd, exclusive distributor of DEEP OSCILLATION® in the UK and Ireland, with web contact details and states, NHS approved supplier”

 

One of the most fantastic aspects of my volunteer activities has been meeting new individuals. I have met some amazing people while managing L-W-O Community, whether they are one of our members or one of the many professionals in our community.

One lovely person I became acquainted with in 2017 via Twitter is Mary Fickling Director of PhysioPod UK.  Mary has been a big supporter of ours, sharing our posts, sometimes offering advice, regularly proof reading my work and has become a valued friend. We met first in 2018 and had fun at the MLD Conference in 2019. Read more about Mary, PhysioPod UK and learn about Deep Oscillation... 

 

Running L-W-O is a labour of love for me, and I am passionate about giving a voice to those of us who live with lymphoedema, as well as interacting with those who work in the lymphoedema community. As a result, I'm happy to have been writing for the wonderful and insightful PhysioPod newsmagazine since 2021. Thank you to Mary for publishing my articles and Chris Fickling for creating my own page on the PhysioPod website.

The British Lymphology Society (BLS)

Joint initiative between BLS and LWO

For the past five years, I've enjoyed writing articles for the quarterly BLS News and Views magazine, making movement videos for the EveryBodyCan campaign, and, in 2022, collaborating with Matt Hazledine to co-present at five workshops at the BLS conference with the topic ‘Understanding the Patient Agenda’, under the mentorship of Kate Sinclair, Lorraine Brown and Jane Board.​

Patient accounts of the lack of assistance they believe they receive in controlling their lymphoedema are profoundly upsetting. However, I have learned a lot from participating in these workshops, and it helped me appreciate lymphoedema specialists' viewpoints, as well as the limits that their jobs impose on them and the emotional toll that this may often take on their mental health.​

Based on the work we conducted before and during the 2022 conference workshops we then compiled two resource sheets which were launched at the 2023 BLS Conference during two speed sessions, titled ‘Frequently Asked Questions’ and ‘Tips Before You Attend Your First Appointment.’ Kate Sinclair, Yolande Borthwick, Lorraine Brown, Matt Hazledine, and yours truly make up the 2023 project workshop team. Karen Friett from the Lymphoedema Support Network (LSN) joined the team prior to the conference, and is an invaluable asset. Both speed sessions were a great success, with positive outcomes and it has been agreed that we will work together for a further twelve months with aim of presenting further information at the BLS Conference 7th – 9th October 2024 to be held at Chester Race Course, so do come an join us.

Gaynor Leech chaired speed session at BLS Conference 2023 at Chester Racecourse. Talking to delegates.

Gaynor talking to BLS members at a speed session in October 2023 at the BLS conference held at Chester Racecourse.

Frequently Asked Questions

 

Are you a member of BLS?

 

Join the UK's most dynamic organisation for Lymphoedema Professionals! BLS now has about 400 members. Nurses and physiotherapists make up the majority of the membership, along with doctors, occupational therapists, and manual lymphatic drainage therapists.

 

Membership is available to all healthcare professionals and anybody with an interest in lymphoedema and its treatment, so you, too, can join. Corporations and industrial groups also contribute to the growth of lymphoedema and the Society.

 

Or why not become a Friend of the BLS to receive their free Newsletter.

 

You will find details on how to become a member of BLS by clicking on this link:

Did you know that the BLS recommends L-W-O Community Support Group, along with five other patient associations, as a trustworthy source?

Jane Wigg Lymphoedema Training Academy

 

Jane Wigg is widely recognised as a key figure in Lymphoedema treatment and development, research, and teaching, and she is well-known for her desire to 'optimise treatment' for persons living with lymphoedema. Jane is director and lead trainer of the Lymphoedema Training Academy.

The Lymphoedema Training Academy (LTA) is an International, multi award winning education provider, continually recognised for the vast improvements it has made in the world of lymphology.

Mary Fickling and I, decided to ask Jane whether she would be happy to answer questions from L-W-O Community members as part of the LAW2021/WLD2021 campaign.  However due to time restraints it was decided to reschedule this special strand until 1st August 2021, and I am thrilled this continued throughout 2022.  You can watch all the 'Dear Jane' videos below. Either on our YouTube channel or on this our Dear Jane page.

Gaynor Leech, Jane Wigg, Mary Fickling. Gaynor provides question from support group, Jane Answers questions and Mary produces designs and videos.

Matt Hazledine Lymphoedema United

Lymph United Logo

 

I could never have predicted where my lymphoedema awareness journey would lead. I had no plan, and my social media skills were non-existent. My objective was to understand my lymphoedema, and if I could help one person avoid experiencing the doom I felt when I was diagnosed with this lifelong, incurable condition, that would be a bonus.

Through my journey, I have met many people, and in 2018, at the LSN Conference (Lymphoedema Support Network), I was introduced to Matt Hazledine. He contacted me three years later to ask if I would contribute a chapter for his book, something I had not expected. 

Our journeys started around the same time I was diagnosed in May 2011 and Matt was diagnosed in June 2011, although our experiences with lymphoedema are quite different. We share the same goal of raising lymphoedema awareness through community engagement and patient empowerment.

Matt and I have worked on various projects together, and we have both been part of the BLS Patient Project Workshop since 2022. In addition, I wrote a chapter for a second book that he and patient advocate Amy Rivera from Ninjas Fighting Lymphoedema Foundation collaborated on, detailing thirty-four heart-warming stories from all across the world. Matt also interviewed me on my lymphoedema journey which you can see on his YouTube channel.

How to LIVE BETTER with lYMPHOEDEMA

Meet the Experts

Lymphoedema United

You are NOT alone!

Book How to live better with Lymphoedema

Click Images to
Purchase

Lymphoederma United 2nd book with thirty four personal stories from around the world on what it is like to live with lymphoedema. Photograph of Gaynor Leech showing her chapter.

Check out Matt's  website: Lymphoedema United

The website provides information and guidance from a panel of medical experts, along with a secure place where people living with lymphoedema can unite directly with others, product providers and organisations.

Lymphoedema Support Network

Logo for LSN, the Lymphoedema Support Network tag line because lymphoedema matters. Green writing on white background.

 

Since September 2013, the UK has made the shingles vaccine available to those in the 70–79 age group. In 2023, the UK lowered the age limit to include those aged 65 and over. People aged over 50 with a highly compromised immune system are also eligible.

 

The NHS website explains that Shingles is an infection that causes a painful rash and details symptoms, treatment, and complications. During the early stages of my lymphoedema treatment, I developed shingles, causing me to suspend my treatment until the shingles subsided. At the time, my immune system was probably at its most vulnerable.

Over the past couple of years, members of the LWO Community Support Group have inquired about the necessity of receiving the shingles vaccination. There appears to have been some confusion about whether someone with lymphoedema should receive the vaccine in general practice. L-W-O members have told us that some GP practices have refused the vaccine, while others have pushed to get their patients vaccinated. There has also been some uncertainty about which vaccine those with lymphoedema should receive: the non-live vaccine Shingrix, which requires two doses, or the live vaccine Zostavax, which requires only one shot.

In light of the UK government's TV campaign advocating for vaccination among the targeted age groups in early 2024, members of the L-W-O support group openly questioned whether they should receive the vaccine. Several members contacted me privately to ask my thoughts. While I had no problems with the vaccine, I decided to contact our friends at the Lymphoedema Support Network, who have their own clinical advisors. 

I have, for many years, been a member of the Lymphoedema Support Network (LSN), and I truly appreciate their support. In 30 years, LSN has made a significant impact on the lymphoedema community as a whole.

A huge thank you to Karen Friett for facilitating this advice. Their members will also have been asking the same question about the vaccine. This cooperation is another example of how community engagement benefits the lymphoedema community as a whole.

Here is the official advice for those living with lymphoedema:

Here is the official advice for those living with lymphoedema:

Information sheet "Shingles Vaccination and Lymphoedema"


Shingles vaccine is available in the UK through your GP or local Pharmacy
 

Patient Advocates for Lymphedema in Europe

Logo. Rectangle, teal coloured poster with lighter teal colured circle with white text reads "Patient Advocates for Lymphoedema in Europe".

 

I was originally approached to join the European Patient Advocacy Group as a patient representative in late 2019 for the Paediatric and Primary Lymphoedema Group (PPL). This has resulted in collaboration with other patient associations throughout Europe, including the Lymphoedema Support Network from the United Kingdom.

 

Together, we created our first manifesto in March 2020, which has been repeated annually with a call to action to increase the profile of lymphoedema in the UK and Europe and was released on March 6th, World Lymphoedema Day. The manifesto is translated into the language of the patient association involved, and it has been a huge success and highly appreciated around the world.

 

Each year, we have expanded our activities. This year, alongside the paper manifesto, we launched a video version of the manifesto, with countries from Europe and the UK taking part. In addition, we issued a press release.

To see our work, with the European Patient Advocacy group visit L-W-Os World Lymphoedema page.

You can also follow this group on Facebook

The two Patient representatives for the UK are Karen Friett from the Lymphoedema Support Network and myself Gaynor Leech from L-W-O Community.

Out in the Community

Nine Images of the work of L-W-O either online in Zoom meetings or meeting people out in the community.

Teams and Zoom meetings have become a frequent part of my volunteer work, but I enjoy visiting people in the community and talking to them face-to-face rather than through a screen.

In June 2023, I served on the panel for the International Lymphoedema Framework as a Patient Stakeholder and attended both the main conference and the patient day in Nottingham. This was an excellent learning experience for me, as it allowed me to speak with lymphoedema patients and healthcare professionals from all around the world.

Over the previous ten and a half years, I've delivered speeches to breast cancer organisations, attended conferences, and taken part in workshops. I have met and worked with many people from the UK and Europe. 

I've taken a variety of courses, including radio, public speaking, and working in the voluntary sector. In addition, I have completed numerous healthcare courses in order to improve my knowledge and enable me to write and speak about my enthusiasm for raising lymphoedema awareness. The material on this page is only a snapshot of how much effort has gone into the development of the L-W-O community.

It's incredible to be granted a certificate for creating 1000 designs, whether they're posters or videos for the L-W-O Community. This is just one method I can educate, inform, and represent your interests to the larger lymphoedema community. To accomplish this, I must pay for the software. Which is why I need your help.

We receive no official funding, I ask that you take out a yearly subscription.

Continual Professional Development(CPD)

 

I enjoy learning, and the people I learn the most from are our members; they have the tales, the questions, and, frequently, the answers about what it's like to live with lymphoedema. As a result, I owe it to them to ensure that whether I design posters, videos, or write on the website or social media, I provide helpful content about living with lymphoedema.

I strongly believe in Continuous Professional Development (CPD). Since starting L-W-O Community, I've attended many courses to enhance my knowledge and skills, ensuring that when I write or create graphics or short videos, they are supported not only by my own experience living with lymphoedema, but also by the lessons I've learnt from the courses I've taken.

In 2021 completed courses in skin care, to understand skincare products which enabled me to develop our skin care page.​ In addition, I completed a 12-week NCFE course in Technology Enabled Care, with a focus on person-centred care, to learn how technology might empower disabled or elderly to continue to live independently in their own homes

In 2023 I took four courses to improve my skills in Health and Wellness allowing me to write on the following topics:

Coaching Health and Wellness.

How to keep safe during a heat wave.

Creating a self-care list

Become a Professional Life Coach.

These courses have had an impact on how I wrote the Lymphoedema Summers web page, and all the topics in the Selfcare section.

 

What will 2024 learning bring? For now that's under wraps. Two courses have been completed, a new section to the website is coming soon so watch this space.

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