Joint Projects

This is our Joint Project Page. It's a great opportunity to help visitors understand the context and background of our latest work.  That L-W-O is passionate about Community Engagement because we strongly believe that by working with other groups, individuals or organisations we can achieve so much more together to educate, inform and raise awareness of lymphoedema.

One of the most amazing aspects of running      L-W-O Community is the amazing people I meet whether that person is one of our members or one of the many professional people 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, and becoming a valued friend. We met first in 2018 and had fun at the MLD Conference in 2019. 

 

Mary asked me would I write a guest blog first for the PhysioPod website and then for the PhysioPod monthly Newsletter which was launched in August 2020.  This working partnership is a privilege as well as a learning curve.  However, neither of us could have imagined the new journey it would take us on.  In our many conversations Mary and I started talking about the 2021 campaign for LAW and WLD and how we could work together.  We started working in January 2021 and decided we would make our joint campaign visual.  I sent Mary a slide presentation I had produced to use in Community presentations I was invited to, and she said, “hmm too long for a video I can make seven videos out of your presentation”. 

 

Mary has made 14 videos using my words and writing.  Each new video Mary produced was then sent to me and I did a full write-up.   I am absolutely thrilled with the results and although my poster/video skills are improving I could never have achieved the results that Mary has.  She has put countless hours into our joint video presentations, they have deliberately been made short and were released on the 1st of March 2021.  Mary, Julie, and I hope they will give anyone who watches them a greater understanding of what lymphoedema is and what it is like for those of us who live with lymphoedema.  You will find details of our joint World Lymphoedema project here...

Community Engagement

PhysioPod logo

L-W-O Community is thrilled to work with The European Patient Advocacy Group ePAG's) ..  

The group works on the principal that we are Expert patients and therefore best placed to educate patients and families on the management of their diseases such as paediatric and primary lymphoedema (PPL) We can identify and recommend expert centres or other HCPs across the UK and the European Union.

The group has successfully published in 2020 and 2021 manifestos with a call to action. The 2021 Manifesto co-signed by 27 Patient Associations and translated into 11 languages, for World Lymphoedema Day 2021.  See the 2021 manifesto and read about the events here...

This group of patient associations went further by creating a brief survey, to collect information to understand the struggles European patients and carers experience to obtain an essential treatment modality, the compression garments...

1102 patients and carers responded and based on the written comments made by 59% of the respondents, three main common denominators in their struggles were found across Europe:

 

  • financial reasons

  • measurement and fitting

  • The prescription process.

The group aims to promote and encourage a patient-centred approach in clinical care, service improvement. strategic development, decision-making, ensure the need of rare disease patients are considered and included in discussions and activities, Contribute to the development and dissemination of information to patients, from policy to good practices, care pathways and guidelines.

Compression Garments

Community Engagement

In 2015 found that the language we used was often met with a hostile reaction the word 'exercise' was one word our members did not like.  Therefore, we changed to using the hashtag #getmoving

In 2020 The British Lymphology Society (BLS) launched their #everybodycan campaign.  I am thrilled to announce L-W-O and BLS started a joint initiative in July 2020 with a series of videos and information to show how we can all boost our lymphatic health by ...

#getmoving_everybodycan

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Logo Apr 21
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#everybodycan

Community Engagement & Unity

When I started my lymphoedema awareness journey I could never have imagined where it would lead.  I did not have a plan and my social media skills were non-existent. My intention was to understand my lymphoedema and, if I could help one person from experiencing the doom, I felt when diagnosed with a lifelong, incurable condition that would be a bonus.

Through my journey I have met some amazing people and in 2018 at the LSN Conference (Lymphoedema Support Network) I was introduced to Matt Hazledine. 

 

Little did I imagine he would contact me three years later to ask me if I would write a chapter for his book.  When I see my name acknowledged with all the other experts listed, I am truly humbled.

Our journeys started around the same time mine in May 2011 and Matt’s in June 2011 although our experiences with lymphoedema are very different.   We share the same goals to raise awareness of lymphoedema through community engagement and unity.

How to LIVE BETTER with lYMPHOEDEMA

Meet the Experts

Book How to live better with Lymphoedema

In addition check out Matt's new 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.