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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

L-W-O End of year Report 2018

Author: Gaynor Leech, Founder of L-W-O


L-W-O End of Year Report 2018


This has been an amazing year for raising awareness for lymphoedema and L-W-O.  There have been a few lows but mostly L-W-O has seen supported, recommended and respected for what we do both online and in the Community.

LSMC’s (lymphoedema social media communities) are now growing rapidly in the UK.  On Facebook there are now 6,000 members in the top seven closed groups and these figures do not account for the local or smaller groups that are also growing.  If you add in the public pages, then followers’ amount to 7,500+ my guess is that across all Facebook platforms in the UK there is around 15,000 accessing Facebook through LSMC’s.  This doesn’t account for Twitter or Instagram where younger lymphies join.

Our support group membership stands at 1077, followers on our community page stand at 635, these are not necessarily members of our closed group.  Twitter - between my account & L-W-O we have 300 followers, not many are members of our closed FB group because they are mostly the business end.  Our Instagram hasn’t been around quite as long, but we have 150 followers and since self-care week our numbers have gone up.

We have received tremendous support from Lymphoedema Support Network  (LSN).   Oxford Lymphoedema Practic and Lymphoedema Community for the UK, who have shared our blogs, graphics as have others and on Twitter many of the companies have retweeted our information.  I still believe we have one of the highest social media presences.

The website continues to grow although daily figures do fluctuate however, we have now reached over 301,000 viewings.  The website is constantly being re-written and due to finding a new graphics programme and the generosity of our members who provide photographs we do not have to use as many stock library pictures which gives the website a more personal touch.

Both the LSN Conference and BLS conference were great for learning, networking and I thoroughly enjoyed both.   I am just sorry more of our members couldn’t attend, I would like to see if we can make that possible for next year.

Our local West Midlands Macmillan have continued to be very supportive, inviting L-W-O to events.  I have been on their One Voice committee for Coventry & Warwickshire for three years. This year I have been invited to their Christmas Party, when I thanked Julie for the invite this was the reply I received:

That is great. We feel you are a part of our team. You help and support so many people.”


I am Cancer Champion (course 18 months ago) and continue to support screening, especially around the Coventry area which has one of the lowest uptakes in the country.  Cancer screening saved my life. Grapevine Coventry & Warwickshire are extremely supportive and through them I have become a Feel-Good Ambassador and part of their Collective Leaders group. 

Events attended 2018

Pharmacy Seminar

Launch of Asian Women’s Breast Care group plus attending support groups until July

Information Stand John Lewis Hub

Breast Awareness Event in aid of International Women’s Day (Information Stand/Networking

Two Macmillan Health & Well-being Events Information Stands

L-W-O Awareness Day

Small Charities Big Impact Atherstone Networking/lunch

Feel Good Ambassadors Meeting

Collective Leadership Meetings

Ekta Unity Cancer Awareness Event Information Stand/Networking

One Voice Meetings – Macmillan

Meeting with Susie Murray Limprint Project Manager for ILF (International Project Manager & L-W-O member)

Coventry & Warwickshire Year of Wellbeing 2019 Digital Training Day

Self-Care Week

We fully embraced Self-Care Week and this contributed to the growth of our Twitter and Instagram following.  It gave us an opportunity to change some of the language we use to improve the way we communicate with our members.  A very positive week.



This year as part of my networking activities I have been privileged to meet and talk to many HCP’s, meet many small groups doing their best to provide services volunteering in the most difficult circumstances we can imagine in the UK.  Many of whom have become friends.

Global Support Groups

We continue to receive support from Amy Ninjas’ Fighting Lymphoedema Foundation, Vern Official Lymphie Strong Organisation and Steve Kelland Lymphoedema Nexus-Canada.  I have been asked to go to the ILF Conference in Chicago, but we operate on a shoestring so unless I can get funding this is unlikely as I would need to raise about £4,000.00

International Lymphoedema Framework

I have been an Affiliate of the ILF for three years now.  I met Susie Murray in Coventry when she was working in the UK and she suggested we could help with distributing the ILF Chronic Oedema Outcomes survey across our Social Media and a possible involvement with work they will be doing with children in 2019.  We have 50 families in our children’s group.

As you might have seen from my latest blog Dr Melanie Thomas National Lymphoedema Clinical Lead for Wales recently posed a question on Twitter, I then wrote my blog, and I received a lovely reply back.


We still operate on a shoestring from members donations which simply covers my petrol costs, stationary, postage, group insurance costs, website and software.  I run L-W-O from a work top in my conservatory we do not have office, utility or other costs that would be associated with a group of our size.  All utility costs are absorbed into my household budget.  Three times this year it has been assumed by other groups that I get paid.  I do not, I am a volunteer.  Running L-W-O means I must rely on people’s goodwill, without those who have volunteered, supported us with training, and invited us to events, none of this would be possible. 


Support Group growth has been slow this year.  However,  I am thrilled that the general LSMC is growing, my wish is that we can continue to make our voices heard.


I must thank our truly amazing members for staying with us, you are the reason I do what I do.

Considering I have dealt with many personal issues this year, I was amazed at what has been achieved and only able to see this when I typed this report, it’s been a busy year.


Happy Christmas

To all our Members, Supporters and Followers

Wishing you all Happiness, Love and Peace



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