L-W-O Community supports primary and secondary lymphoedema by promoting emotional wellness, lymphatic health, self-care, patient empowerment, online and in the community.
Community Engagement
This page is undergoing an upgrade; please be patient. I am aware that the mobile app may not be working properly. Apologies.
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 twelve years. I understand that organisations within our community have historically been cautious about collaborating with patient groups, often due to a strong desire to protect their own work and initiatives.
As the founder of the L-W-O Community, I’m deeply passionate about bringing people together. I believe that by collaborating with other groups, individuals, and organisations, we can achieve far more than we ever could alone, educating, inspiring, and raising vital awareness about lymphoedema as a collective strength.
Mary Fickling PhysioPod UK
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)
For the past seven 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. Taking part in these workshops has taught me a great deal. I've gained a deeper appreciation for the perspectives of lymphoedema specialists, as well as the professional constraints they face and the emotional toll this work can often take on their emotional 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 a valuable asset. Both speed sessions were a huge success, with positive outcomes, and it has been agreed that we would work together for a further twelve months with the aim of presenting further information at the BLS Conference in October 2024. As of 2025 we are working on another project which, for the time being, is under wraps.
Gaynor talking to BLS members at a speed session in October 2023 at the BLS conference held at Chester Racecourse.
Are you a member of BLS?
Join the UK's most dynamic organization 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:
Accelerate CIC
In February, Accelerate CIC took the bold step to open their doors to private clients for the very first time.
As a social enterprise, this might feel like a surprising move, but it’s one they carefully considered and is wholeheartedly supported by our membership, patient group, and national representatives.
They believe in fair access to care, free at the point of delivery. That hasn’t changed. But we’re also committed to finding new ways to meet the growing demands on our services while staying true to our “profit for good” values. Any surplus they make is reinvested into their work, adding social value and strengthening their NHS partnerships.
Why now?
They made this decision because far too many people are being failed. Accessing timely, appropriate care for chronic swelling and its biomechanical impacts has become a postcode lottery—leaving countless individuals without the support they deserve. For them, turning a blind eye to this injustice was never an option.
The community has asked for help, and we’re answering that call. Unmanaged swelling doesn’t just cause discomfort; it leads to infections, hospital admissions for cellulitis or sepsis and a shocking decline in quality of life. We know how to stop this, how to help people take control of their health, and how to make a real difference.
By offering private appointments, starting with lymphoedema services, they are addressing a gap that desperately needs to be filled.
There mission continues
This isn’t about profit. Every penny of surplus will strengthen their services and help them tackle the inequalities that our marginalised community faces every day.
Our mission hasn’t wavered. They are as determined as ever to improve lives and deliver care where it’s needed most. This is just another way we’re making that happen.
Lymphoedema Support Network
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:
Shingles vaccine is available in the UK through your GP or local Pharmacy
Continual Professional Development(CPD)
I firmly support continuous professional development (CPD). Since founding L-W-O Community, I've taken numerous courses to improve my knowledge and skills, ensuring that when I write, create graphics, or make short videos, they are supported not only by my own experience with lymphoedema but also by learning through CPD. This learning allows me to take a holistic approach, not only to develop my own personal skills but also to deliver the best non-medical information possible to our members and followers.
In 2021, I completed courses in skincare to understand skincare products, which enabled me to develop our skincare 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 Self-Care section.
In 2024
Becoming a Holistic Health Practitioner
Professional Emotion Coach
Healthcare Policy Analysis and Evaluation
In August 24, I became PIF TICK certified, which means that I met the requirements for the Quality Mark for health information.
In 2025
Introduction to the Immune System
Sleep Therapy
In September 2025 I became PIF TICK recertified.
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.
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.
Matt Hazledine Lymphoedema United
I never imagined where my lymphoedema awareness journey would lead. With no plan and zero social media skills, my only goal was to understand my condition — and if I could help just one person avoid the despair I felt at diagnosis, that would be enough.
Along the way, I’ve met incredible people. At the 2018 LSN Conference, I was introduced to Matt Hazledine. Three years later, he invited me to contribute a chapter to his book, a moment I hadn’t anticipated. Although our experiences differ, Matt and I were diagnosed just weeks apart in 2011 and share a deep commitment to raising awareness through community and patient-led advocacy.
Since then, we’ve collaborated on several projects, including the BLS Patient Project Workshop (since 2022) and a second book co-authored with Amy Rivera, featuring 34 powerful stories from around the world. Matt also interviewed me about my journey, available on his YouTube channel.
Check out Matt's website: Lymphoedema United
How to LIVE BETTER with lYMPHOEDEMA
Meet the Experts
Lymphoedema United
You are NOT alone!
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Patient Advocates for Lymphedema 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.
