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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 Policies

L-W-O is forever evolving and 2016/2017 we started to put policies in place that will enable us to work more efficiently.  In our drop down menu at the top of the page you will find details of:

  1. Support Group
  2. Terms and Conditions
  3. Mission Statement
  4. Website Linking Policy
  5. Safeguarding Policy
  6. Newsletters  

Please Donate

Please donate to L-W-O so that we can continue to run our online platforms and attend events in the Community.   Since 2017 we have attended events with our information stand in Birmingham, Coventry, Nuneaton, increasing awareness across the West Midlands and introducing lymphoedema often for the first time.

There is a general assumption that because we operate online that we do not incur running costs.  Our hosting package, domain name and utility costs all must be paid for, as does postage and printing costs.   Going out into the community incurs petrol costs and occasionally sustenance costs.  In 2017 we were strongly advised to purchase insurance for both our online and community work.

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Martine Payne & Gaynor Leech  at The Butts, Coventry for the Cervical Screening event 14th January 2019

We are Voluntary

At all times please remember L-W-O is voluntary.  Neither myself or anyone who volunteers for L-W-O gets paid, from time to time it is necessary to pay out of pocket expenses.  Therefore, donations are vital to help us keep this service running please donate.  You will find fixed donation buttons at the bottom of this page. 

Or a fun way to help at no extra cost to you is to shop with your favourite retailers through our Easy fundraising page: https://www.easyfundraising.org.uk/causes/lwo

Wristbands

L-W-O online support group

Launch of Asian Women's Support Group

I have been privileged to work on the steering committee to set up an Asian Womens Breast Cancer Support Group (AWBC) in Coventry from May 2017 - January 2018.  We launched on the 1st February 2018 here are some of the photographs from the launch event.

The launch was attended by Coleen Fletcher MP for Coventry North East, Surindar Nagra Founder of AWBC, Gaynor Leech L-W-O, Joanne Bailey, UHCW Breast Care, Christine McNaught Chief Executive Officer of FWT, Cllr Bali Kauer, Julie Hunt, Julie Bliss Macmillan, Olivia Bowskill Myton, and others including, Public Health and CAB.

Fundraising

Dean sold raffle tickets making £105.00

at our Lymphoedema Awareness day 16th May 2018.

L-W-O Community

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. 

The website and a Facebook page were set up in September 2013 followed by our online support group in May 2014.  In January 2017 we created our Children’s online support group. In September 2017 our Twitter account was set up and is run by Michelle Donohoe.

We have continually evolved over the last five years and in 2018 the management side of L-W-O was focussed on creating a Community with the ultimate aim of encouraging our members to self-care and to become their own advocates.

 

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

L-W-O viewings website

 

Per Day

Year

208

2018

230

2017

180

2016

182

2015

169

2014

George Headquarters

Members of L-W-O where invited to George Headquarters, Lutterworth for the second time to advise and discuss on comfortable clothes for those diagnosed with cancer and lymphoedema.

George Headquarters

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L-W-O Member with 2018 range of nightwear that fits nicely with compression sleeve.

2013 - 2018

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Medical Alert Cards

Our new Medical Alert Cards sponsored by:

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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

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.

BLS Conference October 2018

 

I had the privilege to be awarded an Educational Grant to go to the The BLS Conference in October 2018 at Yarnfield Park.

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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.

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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 24/01/2019