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.
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.
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.
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.
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
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