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This year marked the tenth anniversary of the L-W-O Community, and what a remarkable decade it has been! As a survivor of breast cancer who is also living with lymphoedema, the need to comprehend this condition and acquire coping mechanisms was formidable. Much like many of us who have been diagnosed with lymphoedema, I was initially overwhelmed.

Reading, researching, writing, and, most importantly, listening to others with lymphoedema for over a decade have been essential to my coping strategy.


The countless hours I have devoted since the inception of "lymph-what-oedema" to the development of a patient organisation with a worldwide presence have been amazing. Without our followers, members, and supporters, the transformation and expansion into the L-W-O Community would not have been possible. Although the past decade has been filled with many experiences and highlights, 2023 has surpassed all expectations.


This newsletter will feature an account of our accomplishments for the current year, as well as an acknowledgement of the individuals who have provided support for me personally and the L-W-O Community.


I continue to work with and write for Mary Fickling and the PhysioPod UK Ltd News Magazine, and I am always astonished by her energy and excitement for helping others. We have worked together on World Lymphoedema Day which is held on March 6th and Lymphoedema Awareness Week for the past three years. Our theme this year was the importance of Self/Simple Lymphatic Drainage in lymphoedema management and the rising influence of the patient voice. Mary and I are both passionate about giving those who live with lymphoedema a voice. This year’s aim is to strengthen the goals we set last year. We are firm believers that self-care is essential for improving lymphatic health. We have both devoted considerable efforts to enhancing the accessibility of our work through the incorporation of closed captions, subtitles, and additional visual aids. At an individual level, this necessitated dedicating a substantial amount of effort to verifying the accessibility of the L-W-O Community website. 

 

Juzo UK


A long-overdue thank you and apologies to Juzo UK's Ross Summers. At the October 2022 BLS Conference, Ross and I discussed hand compression. His exhibit had compression gloves that I tried on. Ross generously sent me the classic seamless compression glove to test at home, and I volunteered to write a brief review. Due to unforeseen circumstances, I was unable to keep my word. However, finally, I have written a short piece, and I am delighted to say I am still using the glove. For a decade, Adam Withey from Juzo UK has supported our community and provided individual support to group members. I appreciate this so much, and on behalf of my members, thank you, Adam.

 

European Patient Advocacy Group

 

I have been serving as a patient representative for the European Patient Advocacy Group on a volunteer basis since 2019. Our manifesto has had global success as a call to action to raise lymphoedema awareness in the UK and Europe. I attended a Zoom conference with European patient associations this year, and we were joined by Swedish Health Minister Acko Ankarberg Johannson. The Minister agreed to convey the manifesto and the associations' concerns to her colleagues at the Council of the EU on lymphoedema care and treatment. Sweden held the presidency. In addition, this year the group launched a new website, ‘putting compression under pressure’ which was presented at the ILF Conference in June by Eline Hoogstra from the Netherlands. I was thrilled to meet Eline in Nottingham in June for the ILF Conference; before that, our communication had been limited to email and Zoom.






 

International Lymphoedema Framework Conference

 

This year I was also invited to be a patient representative on the conference board for the 11th International Lymphoedema Framework (ILF) organised in collaboration with the Lymphoedema Network Wales. My friend Susie Murray has been instrumental in enabling this and providing me and L-W-O with support over the past decade. I was invited to attend the conference as a delegate, which spanned an incredible two days in June. The presentations in the main hall and side rooms provided me with a wealth of knowledge. Moreover, I had the opportunity to meet in person with a significant number of individuals with whom I had previously only interacted via social media. The patient day was a resounding success, and attendees were given the chance to pose questions to the speakers.








 

 

The British Lymphology Society

 

I have worked with the British Lymphology Society (BLS) for several years, writing occasionally for their quarterly magazine. We collaborated in 2021 to create videos for the BLS 'Every Body Can' campaign as part of a cooperative effort that aligned well with the L-W-O Community's philosophy of encouraging movement as opposed to exercise. I am forever conscious that while we have super fit members, we do have members with limited mobility, and we need to ensure they are included in every aspect of our information sharing, tips, and advice.


In 2022, I was delighted to be asked to work with the BLS alongside their trustees and Matt Hazledine from Lymphoedema United. Understanding the Patient Agenda was presented to attendees at the conference in October 2022 via five workshops. This work was a tremendous success, and we agreed after the conference to expand on it.





The theme for 2023 is ‘The Importance of Patient Involvement in Shaping NHS Services’. We created two patient fact sheets, which were presented in two speed sessions at this year's conference. This year, we were delighted to welcome the Lymphoedema Support Network to the BLS Patient Project team 23/24. By working with patient associations, BLS aims to encourage lymphoedema clinicians to engage with patients when shaping service development. While I will always advocate on behalf of those of us who live with lymphoedema, working with the BLS has given me a better appreciation of the pressures many of our lymphoedema practitioners are under.





This year's BLS conference was a tremendous success, and Matt Hazledine and I shared an exhibition stand. This allowed us to converse with a lot of the delegates, and the five sessions we conducted in 2022 have generated an abundance of positive comments. There were two highlights for me. The first was hearing Stanford University Professor Stan Rockson discuss the HEAL trial.


The second highlight was meeting Beverley de Valois, Acupuncturist, Author, Researcher, Lecturer, Scar Work Therapist. Beverley and I talked about the false belief that many patients have regarding the use of acupuncture being contraindicated for people with lymphoedema. Another myth. If you avoid your affected area, then acupuncture is beneficial. I had tried to book into the sessions Beverley was holding, but they were oversubscribed. During our conversation, Beverley cordially extended an invitation for me to attend the final session of the day. As soon as I underwent ear acupuncture, I felt an immense sense of relaxation. Beverley has written an article for the next News and Views, and I was happy to contribute a couple of paragraphs on my experience.





 

You Are Not Alone


Matt Hazledine contacted me in late 2022 to ask if I would be interested in writing a chapter for a new book he was compiling with Amy Rivera, who is a patient advocate from the United States. Of course, I agreed. Thirty-four lymphoedema patients from fourteen different countries joined Amy and Matt in demonstrating to readers that living a full life with lymphedema is possible. Each contributor's story began with their national flag and a quote. My quote...

 

“I believe you can accomplish whatever you feel capable of.”

 

Contributors were asked for their top advice after each chapter. My suggestion:

 

“Learn to understand yourself and what works for you.”

 

Physical and emotional health might be negatively affected by lymphoedema, but this book, "You are Not Alone," demonstrates that despite the lack of understanding of lymphoedema in our different healthcare systems, we have all learned to advocate for ourselves as individuals.

 

L-W-O Community

 

We are in a unique position to describe what it is like to live with lymphoedema, including the daily routines and constant need for self-care. Our focus has been on lymphatic health, self-care, the patient voice, and ensuring that our voices are heard; community engagement has been of equal importance. I am proud that we have been able to convey the idea that outcomes may differ among individuals and that what is successful for one person does not necessarily apply to another.

 

L-W-O’s achievements would be unattainable in the absence of our members, followers, and supporters. They are the reason I continue to advocate for the amplification of their voices, and I feel that our voices will not be heard if we do not work together as a community. I thank all the above for their continued support, and I look forward to working with some of you in 2024.


My personal gratitude goes to our two support group moderators, Sue Sanders and Jackie Wingate, who welcome and support new members. The time they devote to our community frees me up to work in the background to spread our message: Lymphoedema exists; we exist.

 

 

On a personal level, it’s been a tough year with several health issues, including a serious sight problem that was thankfully resolved, plus two stays in the hospital and an operation on my sphenoid sinus. We are forever grateful for having a large family. One granddaughter got married, two more grandchildren passed their driving test, two are enjoying university life, one has become a PCSO, and two are in retail management. The two youngest are happy and content, and I love seeing our two great-grandchildren. Importantly, I have the support of my ever-patient husband, who has had to do a lot more chauffeuring this year. My main concern is how I will continue to support the L-W-O Community financially. In the early years, it cost £250 per year to run, but this year our costs have skyrocketed to £1500, with me footing 25% of our costs. So, if you like what the L-W-O Community accomplishes for you, please support us. No amount is too small. You may either donate through our GOFUNDME page or sign up for a once-a-year membership to help me continue to raise the voices of individuals affected by lymphoedema.





 

 



 




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Updated: Dec 21, 2022


Our Christmas Theme



What an incredible year 2022 has been for L-W-O Community (L-W-O). As we reached our ninth year, we have had many new experiences and opportunities. L-W-O has had a productive and incredibly positive year where we have achieved so much, and I am grateful to our support group members and those who follow us on other social media platforms.


Support Group


I want to thank Sue Sanders and Jackie Wingate, our two Facebook moderators, who have added and welcomed new members. We are fortunate, as a group, that we have very few problems, but Sue and Jackie do a wonderful job in supporting and keeping our members safe. Giving L-W-O their valuable time and support leaves me free to pursue projects that will benefit us all. Both have agreed to stay on as moderators in 2023 so thank you to both.




This year I have used more targeted questions to encourage member engagement. We must amplify the patient voice and give them a platform to voice their thoughts and concerns. There were clear messages.


· We are asking for a holistic approach to our treatment plans

· We ask that you treat us as individuals, we are all different

· Explain why wearing compression or a certain management techniques work


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 correctly, their patients are more likely to comply with their treatment plans. The following question provided the most comprehensive answer and leaves no room for doubt as to what our members want.


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

Answer: Yes… 100 percent


I have never had a 100 percent answer in nine years of running polls.


Our website


The website continues to grow and this year I have written or rewritten several new webpages, including Breast Cancer Related Lymphoedema (BCRL), Head and Neck Cancer related lymphoedema (HNL), and ‘Tattoo or not to Tattoo’. The website is an ongoing project and does take a lot of time and research.


For those who follow L-W-O Community, you will know, I strive to make our website and social media accessible to all. I know how difficult websites and social media can be if you are a person with vision impairment or low vision or are on the autism spectrum. However, there are still organisations whose content isn’t mobile friendly. Why is this important? Because mobile devices are the only access that some people have to the internet. Switching to Camel Hash Tags and writing Alt text has become a mammoth task, and we won’t always get it right, but we are trying to make a difference. Wouldn’t it be great if, in 2023 the Lymphoedema Community could lead the way to make sure all our content was accessible?


Working with Mary


I have written fifteen articles for the PhysioPod Newsmagazine this year and working with Mary Fickling has been fun. I have learned so much from her analytical brain, and creative working style which is unique to her. Most of all, I appreciate her generosity of time which is priceless. The topics I have written about include Breast Cancer Related Lymphoedema (BCRL), the difficulties of buying clothing, footwear, and underwear for those of us who live with lymphoedema. Plus, many more articles which you will find on my dedicated page on the PhysioPod website. Between Mary and I, we have created a Call to Action. We ran two successful campaigns the first for World Lymphoedema Day (WLD) 6th March 2022, covering ‘Lymphoedema Top to Toe’. Thank you also to the following healthcare professionals who also wrote articles or voiced videos for our World Lymphoedema day.




Our second successful campaign was or Selfcare week 14th – 20th November 2022, putting our spin on ‘Exercise for Life’. Both Mary and I are passionate about giving patients a voice and encouraging patient advocacy. I produced five videos, four from our members who told us how the keep moving and a general video on the routines we live with every day.


Jane Wigg


Sharing our passion to support both patients and healthcare professionals is Jane Wigg, RGN MSc and Lymphoedema Clinical Expert. Our working partnership has been a tremendous success and replaying the video’s again this week; I am surprised at the areas we have covered. How does it work? L-W-O Community support group members ask the questions; Jane answers the questions and Mary produces and designs the videos. The videos are easy to watch, understand and great to listen to with voiceovers. To provide easy access to the videos I have published a ‘Dear Jane’ webpage showing all the videos in one place with an easy-to-view format. A huge thank you to Jane for all the time you have given us in your busy life.


I am absolutely chuffed that the 'Dear Jane' videos have been added to the patient care page of the Lymphoedema Training Academy's, LTA global website.


In 2023 I have three new questions lined-up, but I am sure support group members will provide many more.






The British Lymphology Society


As I have written previously as a patient advocate, I feel privileged to be a member of the British Lymphology Society (BLS). In 2021 we worked on a joint initiative to produce videos for the BLS ‘Every Body Can’ campaign, fitting nicely into L-W-O Community ethos of promoting movement rather than exercise. I am forever conscious while we have super fit members. We also have limited mobility members, and we need to ensure they are included in every aspect of our information sharing, tips, and advice.


One of this year’s highlights was being asked by BLS together with Matt Hazledine from Lymph United, to present five workshops on ‘Understanding the Patient Agenda’. As someone who lives with lymphoedema, attending the BLS conference has increased my knowledge of lymphoedema and the lymphatic system and allowed me to pass on to my members and the wider community my learning experiences. I have long advocated raising the power of the patient voice and fervently believe in community engagement. Therefore, to be invited to co-present with Matt, was a wonderful opportunity for us both to represent patient voices and acknowledge that patient voices are being heard.





While I may not be the most active member of the Patient Advocates for Lymphedema in Europe, I am still delighted to be a part of this group of dedicated advocates who work extremely hard for the benefit of all who live with lymphoedema in Europe. This year we took part in publishing the Manifest for World Lymphoedema Day on March 6th. The planning for next year’s WLD is underway, with exciting new events on the agenda. Patient Associations involved are, Bulgaria, Denmark, Finland, France, Germany, Ireland, Italy, Norway, Portugal, Sweden, The Netherlands, us, and our friends at Lymphoedema Support Network representing the UK. Apologies if I have missed anyone.




Next year is the International Lymphoedema Framework conference in Nottingham from the 13th-15th June 2023 and I am delighted that I have been invited to be part of the patient stakeholder day on the 15th. Planning is in the at early stages, and I will keep you updated in due course.


Christmas Theme


I put a lot of thought into the Christmas topic this year: mental health. I speak with a lot of people who struggle with day-to-day issues that are made worse by the fact that we have a long-term condition. So, establish lists, delegate, and don't be scared to say NO, is our suggestion. Do take the time to check out our videos on our YouTube channel


Finances


I absolutely hate talking about finances or having to ask people to support L-W-O Community financially. Our financial situation remains difficult, not helped by the fact that social media is considered free for users. Reaching the level we have costs money, often out of my pocket. In a recent campaign five members donated £95.00 and I am extremely grateful to these members. We have two members who make monthly donations which go towards our monthly costs to cover accounting and printing, and I thank them for supporting us. However, we have a membership on support group of 1300 and overall following of 4,500. My sister-in-law has so far raised £100.00 since August, simply by asking the people she knows for £1.00 and running small tabletop sales in her local community rooms. I realise that times are very tough, but please support us either by subscribing by clicking on the poster to a once-a-year subscription or donate via the L-W-O Community GoFundMe page.




On a Personal Level


Unfortunately, this year both myself and my family have had some serious health issues and there have been times when I have had to step back. During Covid as we were in isolation for two years this meant that I kept my head busy with all things L-W-O. My way of dealing with life at that time and staying sane. I took on far too much, and now that life has returned to normal, there is so much more to do, as they say, ‘places to go and people to see’. Therefore, finding a balance was difficult, especially as I had to start saying no to some of the projects I was asked to get involved with. Rediscovering the word ‘NO’ has created balance in my life and has had an empowering effect on my mental health and I am in a good place, looking forward to Christmas and the New Year.


To our members, our followers and all those that have supported us with their time and kind words of encouragement, thank you. You are why I continue pushing to raise the #PatientVoice and push for #CommunityEngagment. Gaynor








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The 9 Year is the end of an era, and for L-W-O Community the start of a new era.


Who would have thought in 2013 that when I first launched L-W-O (lymph-what-oedema), through my frustration at the lack of information and worse still misinformation about lymphoedema, that we would evolve and grow into the positive community that we have become now?


In 2013, I could never have imagined that the age of sixty-two, when most people are heading towards retirement how my life would change. It certainly has been a rollercoaster, on my emotions, anger, frustration, tears, tiredness, overwhelming elation, gratitude, and a sense of achievement.


Breaking down the barriers and reluctance of those who struggle to embrace online communities is truly momentous for our community. From those early days when I was excited that thirty-seven people joined us in one month, to the 4,500 plus community we have become.


We are building a strong UK base and much to my surprise stretched far beyond our shores giving L-W-O Community an international following and voice.


Whether you belong to a lymphoedema community or other community that supports or shares your interests, online communities are thriving, and patient empowerment has become much stronger.


Digital Health and Technology Enabled Care


We are living in uncertain financial times, Digital Health and Technology Enabled Care are not new concepts and I fully acknowledge that they do exclude many. However, through our online communities, now more than ever, it is important to give our members and the wider patient community, the tools to self-care.


Everything I write or design is based on mine and our members experience. We do this successfully through our website, posters, and social media. Not only do we provide support, information, and signposting, but we encourage our members to talk about living with lymphoedema. Engagement with our members has reduced self-isolation.


L-W-O Community provides a platform to speak to others in a similar situation and yes, members are allowed to rant without the fear of judgement.


I understand that we are all protective of the individual communities or organizations we create however, the time has come to reach out and work together. Community engagement is important for those of us who live with lymphoedema and is one of the most powerful tools we have because it allows our voices to be heard.


While we will always encourage supported self-care from healthcare professionals, we realise that sadly, this has diminished as a direct result of Covid. When we don’t have the answers, we signpost to respected organisations like the British Lymphology Society, Lymphoedema Support Network, or International Lymphoedema Framework.


Patient empowerment is important to our community and by recognising we all have a part to play, then together we will reach our common goal of not only raising the profile of lymphoedema but understanding the significance of lymphatic health.


The Connexion


Have you ever wondered where L-W-O Community operates from? The answer is from home, and I call the room the Connexion, firstly, because it connects to my dining room and lounge: also, because it was once a conservatory that now has a solid tiled roof, making it a permanent fixture and secondly it connects to our garden.


When my grandchildren where small, my husband designed and built a countertop, ideal for young minds to craft, paint, or have their meals from. When the family gathers for a meal or party, it also makes for a great table to serve food from.


Day-to-day, it is my office desk, accompanied by my laptop and phone. As a 4500 strong community; people might assume that I have a huge team and that I get paid, but I do not.


I provide my time and skills free of charge, because of my passion to help the Lymphoedema community. Our Facebook page has two wonderful volunteer moderators, Sue, and Jackie, but I do the rest. This involves all the administration, content writing, graphic design, website design, social media, video creation, and website design.


Whenever possible I attend courses and webinars, to increase my knowledge of the lymphoedema community that I am so proud to be a part of.


On a personal level, my nine-year journey has been one of self-discovery. I am learning not to waste my time and energy worrying about those that try to put you down or worrying what other people think.


Listening, sharing ideas, and talking to others in the lymphoedema community has given L-W-O Community the strength to push for more community engagement.


L-W-O Community continues to move forward and to each and every one of you, who lives with lymphoedema we say, “You have a voice”.



What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from. ~ T.S. Eliot




I run L-W-O Community on a shoestring, and I am not immune from the rising costs of running this website and other associated costs. L-W-O receives no official funding, no one receives a salary. Our two volunteer moderators and I give our time freely.

No amount is too small, any donations we receive are very much appreciated. Please donate so that, we can continue to support, empower, and raise the voices of those of us who live with lymphoedema through education and information.

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