Gaynor Leech Guest Blog - April 2022
"What a difference a year makes as online activities increased the awareness of lymphoedema not just in the UK but around the world.
I can remember a time, not so long ago when a “Call to Action” to reach patients, the public, clinicians, politicians, policy makers and health care providers would have fallen on deaf ears. Months and years of hard work by organisations to raise awareness often not taken seriously.
The power of social media and the events of the last two years has given patient associations, patient advocates and patient support groups who are mostly volunteers, the ability to accelerate campaigns and information sharing. This has given rise to a stronger patient voice for those of us who live with lymphoedema.
This year L-W-O Community and Mary Fickling of PhysioPod UK Ltd chose as our contribution to highlight Lymphoedema from Top to Toe. We had expert authors who wrote about their specialist lymphoedema topics:
Christine Talbot on Head and Neck Lymphoedema, Kate Barr on the Importance of Oral Hygiene, Sue Hansard on Breast/Axilla/Chest Wall Lymphoedema. Jane Wigg with a video for arm lymphoedema and of general tips, Dr Rhian Noble-Jones provided tips on Genital Oedema and Catherine Groom wrote self care tips for Lymphoedema of the Leg.
Mary and I are very grateful to all the above who shared their expertise and knowledge with our campaign. We shared patient stories highlighting the difficulties patients face. In addition, we included testimonials on the success of Deep Oscillation from both patient and healthcare professionals.
I wrote about the non-medical challenges that included the difficulty of buying clothes, footwear, and underwear. This year we included more #memberengagement from L-W-O Support Group. Mary designed and produced informative videos and some of our videos came with voiceovers as we are both becoming increasingly aware of the need for better accessibility.
Last year’s campaign was extremely successful but at times pulling it together was very stressful. This year we were both much more organised, with discussions throughout 2021 and from January 5th 2022 we started collating all the information we had gathered. We have had extremely positive feedback from right across the globe and both Mary and I appreciate the encouragement and support we have been given. If you missed any of our campaign, you can catch up here…
Patient Advocates for Lymphoedema in Europe
On a personal note, I love being a part of the Patient Advocates for Lymphoedema in Europe. For those that are unaware of this group we are dedicated patient advocates from patient associations across Europe. The aim is to support the patient community living with lymphoedema/lymphedema, their relatives, clinicians, and others. We are volunteers. The UK patient representatives are The Lymphoedema Support Network and L-W-O Community. In case you missed it this is who we are:
Vimeo video
Twitter News
It is with great sadness that I announce Michelle Donohoe who has successfully run our Twitter account since September 2017 has decided to set back. Michelle brought a unique and humorous element to Twitter; she has made lots of friends and due to her hard work, we now have 724 followers. A huge thank you to Michelle, words don’t adequately describe how truly grateful I am for your support and friendship. xx
In the meantime our Twitter accounts may go quiet for a short time while I get to grips with the changeover but please continue to follow us @LWOCommunity and @LWO4families
Moving forward I have two new projects that I have been invited to take part in and I am extremely excited to be involved with, more to follow in May’s Newsletter.
Congratulations to PhysioPod UK who are once again listed as NHS Approved Suppliers for 2022/2023 and the PhysioPod UK trademark has been renewed to August 2032.
Finally, there is still lots to do, we still have a long way to go and to anyone who lives with lymphoedema you have a voice, tell us your story, join our social media.
#patientempowerment #communityengagement
xxx
