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Primary & Secondary Lymphoedema Online & in the Community

End of Year Newsletter 2017

2017 Newsletter

 

 

Starting 1st of December I will start our Christmas Postcard campaign similar to last years.  Apart from the Support Group in Coventry in December I will start to wind down until mid-January.  

This has been an extremely busy but very successful year for L-W-O our achievements have exceeded expectations.

We have:

Forged new partnerships with the Carers Trust, working on a relationship with Myton, strengthened our working relationships with Macmillan, The Hummingbird Centre, LSN, involved with helping to set up the Asian Women's Breast Cancer Group in Coventry which launches on the 1st of February 2018.  Our Community Support Group in Coventry will continue from February - December 2018.

We will be joining LSN's odd sock campaign for March 6th to present a united front in raising awareness.  For next year’s campaign the following lymphoedema FB groups are on board;

Ladies Living with Lymphoedema

Men with Lymphoedema

Lymphoedema Fashion

It has been suggested by members of FB lymphoedema groups in the UK that we form an alliance for campaigning and raising awareness while still maintaining our own independence.  I have been invited to LSN's head office in January to talk to their chair and trustees who have far more experience than I have.

I have become a graduate of the Innovation Factory & have a working relationship with the Ideas Factory which has led to us being asked to meetings for International Women's day for Nuneaton & Bedworth area and the Celebration of Leaders event. 

L-W-O is a member of:

Voluntary Action for Coventry

WCAVA

NCVO

I am and individual member of BLS, LSN and an affiliate of ILF.  

Our first sponsorship of the Medical Alert Cards was great news and I have distributed approximately 150 by post and given others out at the events we have attended this year.  A big thank you to Darren Meilak from LymphAssist/Huntleigh for working with us. Due to members, donations, a 70th birthday party donation, Marie's fundraising, Easy-fundraising, WLSG donation and donation in memory of our member Gaynor Lanyon, we haven't had to fund-raise this year which has allowed L-W-O to cover the various costs associated with running this group.  Our accounts were audited at the end of our financial year by Mr. Peter Oakley.

Next year L-W-O will be working on our 3rd lymphoedema Awareness day on 16th May 2018.  This will be a ticket event through Eventbrite and will save me a considerable amount of work. Promoting, raising awareness and campaigning of lymphoedema with other groups will be high on our agenda next year. 

It is essential that L-W-O recruit’s new volunteers who have a vision and passion to help us grow and develop these may need to come from outside the group as getting members to volunteer has not been easy.  Without volunteers we cannot grow or develop.

Support group now has 978 members across the UK and beyond and our website is maintaining an average 1000-1200 viewings per week and has reached 229,118 viewings.  Our high social media presence on Facebook, Pinterest, Twitter, Instagram and LinkedIn has grown steadily this year.  Our children’s group has 42 families on board.

Some of our members became very upset at the use of the word ‘diet’ and ‘exercise’ especially those living with lipo-lymphoedema.  Therefore, we changed the language to ‘lifestyle changes’ and ‘movement’.  The website was completely re-written in 2017 adding more visual features, videos and members photographs and stories.  I am extremely proud of members for allowing us to publish their stories and photographs.

Next year will see more and more of us referred to our GP’s from our Lymphoedema Clinics which many of our members are finding scary.  The need to raise awareness amongst health-care professionals is now a priority.  Within surgeries we now need a nurse who can measure for compression, advise on living with lymphoedema and if necessary give MLD and teach patients to do SLD so that they can self-manage.  Those diagnosed with secondary lymphoedema are usually picked up quite quickly because they are in the system due to their cancer treatment.  However, primary lymphoedema patients and those with secondary lymphoedema not caused by cancer treatment are often left to struggle on their own without support or treatment.  In an ideal world every surgery will have a GP who has undertaken LSN’s RCGP module http://elearning.rcgp.org.uk/lymphoedema

On behalf of the L-W-O team I would like to thank all our members and supporters who have helped us achieve a very successful year:

 

A Happy Christmas

and a

Healthy, Peaceful 2018

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