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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

L-W-O Support Group

Join us on our Closed Support Group

www.facebook.com/groups/lymphwhatoedema

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L-W-O in the Community

Please help L-W-O continue to provide services for those living with Lymphoedema.  In 2017/18 L-W-O held events in Birmingham, Coventry, Nuneaton and increased awareness of Lymphoedema across the West Midlands.

Michelle Donohoe Twitter Admin, Martine Payne Volunteer and Gaynor Leech Founder at The John Lewis Hub, Birmingham

 

Without your help we cannot do this valuable work.

We are a support group for those living with Primary or Secondary Lymphoedema. There is a general assumption that because we operate online we do not incur running costs.  This is simply not true.  Hosting package, domain name and the usual utility costs all have to be paid for as do postage and printing costs.  L-W-O does its best to keep the costs to a minimum.  The website is written by myself, therefore does not incur further costs.

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L-W-O online support group

Contact Us

​L-W-O email: lymphwhatoedema@gmail.com

​L-W-O online support group: www.facebook.com/groups/lymphwhatoedema

​L-W-O community page:  https://www.facebook.com/lymphwhatoedema

​Website: www.lymph-what-oedema.com

YouTube:youtube.com/c/LWOlymphwhatoedema

​Pinterest: ​uk.pinterest.com/lymphwhatoedema

LinkedIn:  linkedin.com/in/gaynor-leech

​Twitter:     https://twitter.com/lymphwhatoedema

L-W-O Team

L-W-O is UK based, patient driven and voluntary.  Our support group is for anyone who lives with the lifelong condition of Primary or Secondary Lymphoedema or their family and friends.  We understand the anger, frustration and isolation of those living with lymphoedema.

On 11th January 2016 L-W-O became an independent, non-profit organisation.  L-W-O has its own constitution and a board of 4 volunteer trustees who are;

Gloria Clarke

Gaynor Leech

Jayne Langley

The online support group has three voluntary Admin assistants who vet and add members. They are;

Chris Hunter

Gaynor Leech

Karen Taft

You will find our support group at www.facebook.com/groups/lymphwhatoedema

In January 2017 L-W-O created our Children's online support group and Marie Barber became our volunteers children's Ambassador.

September 2017 L-W-O created a Twitter account that, our L-W-O Admin is Michelle Donohoe.

Fundraising

Dean sold raffle tickets making £105.00

at our Lymphoedema Awareness day 16th May 2018.

L-W-O viewings website

 

Per Day

Year

205

2018

230

2017

180

2016

182

2015

169

2014

Medical Alert Cards

Our new Medical Alert Cards sponsored by:

 

Benefits Advice

I am always being asked for advice on Benefits and although I am not qualified to give advice you might find the following information useful.

July 2017, I spoke to several different benefit advisors so here is the information I was given.


PIP refused? If you disagree with the decision you can contact DWP/Dfc and ask for a 'Mandatory Reconsideration'.


If you still disagree with their response in the mandatory reconsideration then you can APPEAL the decision....
Tel: 0345 850 3322
DWP web: gov.uk/pip

Dfc (Department for Communities)
Tel: 0300 123 9221
Web: nidirect.gov.uk/personal-independence-payment

UK Support Groups

Support group news as published in Summer LymphLine 2017.
Macclesfield Support Group meets 3 times a year at the East Cheshire Hospice contact: Joy Stevenson 01625 665689

MAEH, at the Hospice Nuneaton, 5 - 7 p.m. Last Thursday of the month. Contact: Nicola Whitehouse 02476 865452

The above two are for Secondary Lymphoedema those patients who have had cancer.

Shropshire Lymphoedema Support Group. International Hotel, Telford. Third Wednesday of every month at 10.30 a.m. Contact: Yula Mortison, 07973 845474.

If you would like your support group to appear on this webpage, please email me Gaynor Leech

lymphwhatoedema@gmail.com

Lymphoedema Awareness Day May 2018

March 2018

 In March 2018 we were invited to take part in a Cancer Awareness event in Nuneaton for the first time thanks to the generosity of our members we didn't have to borrow a poster board because we had been able to purchase our own.

March 2018

L-W-O was invited to an event for Cancer Awareness  to celebrate International Women's day and it also coincided with the UK's Lymphoedema Awareness Week.

Lymphoedema Awareness Week 2018

L-W-O took part in Lymphoedema Awareness Week and members embraced  the #sockit campaign organised by our friends at LSN.

March 2018

Health and Well-being event organised by our friends from Macmillan. Always grateful to Julie Hunt for including us is these events.

L-W-O Awareness Day May 2018

Dawn from MC4BC

Vina from Healthwatch Warwickshire

Our members listening intently to Adam from Juzo

LSN Conference September 2018

Macmillan Health & Well-being 2018

Pharmacy Seminar

Through our friends at Macmillan we were invited to a Pharmacy Seminar, to meet Pharmacists and raise any concerns our members had over medication and compression garments.

Collective Leadership September 2018

Ekta Unity September 2018

I was absolutely delighted when were invited to the event organised by Ekta Unity and FWT (Foleshill Women's Training Centre) for their Cancer Awareness and Health & Well-being event.  My son, daughter-in-law were on the team. We were overwhelmed by the kindness and interest the community showed in lymphoedema awareness.  The day was about encouraging cancer awareness and having those difficult conversations with health care professionals.  The signs to look for and how to keep healthy.  L-W-O was thrilled to be a part of this event and a big thank you to Surindar for inviting us.

Page last updated 14/12/2018