Join a Local Patient Support Group!
A vital part of what we do here at MDS UK is facilitate a network of Local Patient Support Groups. These groups are invaluable as they give people the chance to gain useful information and share much-needed mutual support.
Before Covid, with the invaluable help of our Local Patient Support Ambassadors who coordinate the groups, patients were able to meet face-to-face for 2-3 hours.
(To find out more about what our Local Patient Support Ambassadors do click here https://mdspatientsupport.org.uk/fund-raising-2/become-an-mds-ambassador/)
Essex MDS UK Patient Support Group - (face-to-face pre Covid)
Since Covid, we've taken the meetings online via Zoom
These online Zoom meetings have provided some unexpected and welcome opportunities as we've been able to open up the groups to all members Nationwide. This has meant that many, many more people are able to attend.
So in some ways it has given us the best of both worlds. Local groups still keep their regional focus, making and strengthening local connections - while at the same time people are able to meet a wider range of other patients who may have similar MDS or CMML sub-types and concerns. This has proved to be extremely valuable to patients.
In addition, the online meetings have made it easier for our specialist speakers to attend - which again is a much needed and hugely valuable resource for everyone.
People say they find MDS UK Local Patient Support Groups informative, welcoming, helpful and supportive.
"The group meeting was excellent. Everyone was very friendly and the information provided was very useful."
‘I’m really glad I have connected with MDS support groups and am so thankful for all you do.”
"I would like to say MDS Patient Support Group has been AWESOME"
"To know that there is a support network to help my mum gives me great strength"
"I have been to only 2 patient meetings so far and found them both very helpful."
"Very helpful talking to other patients in a relaxed, non clinical atmosphere"
We need volunteers willing to help maintain existing groups!
Please get in touch if you can contribute a bit of time to your Local MDS UK Patient Support Group. Email: Chris Dugmore, Ambassador Coordinator firstname.lastname@example.org
Below you'll find contact details and updates of all our Local and Regional groups in the UK.
Come and join our group in the Yorkshire region! Patient Brian Poulter and his wife Jenny started this group in Yorkshire in 2020. All local patients are welcome to attend, as are relatives and friends. This is an opportunity to get to know one another, share experiences and increase the support network in our area.Read full post
Come and join our group in the Midlands region! A few words from Sophia, Midlands Group Local Patient Support Ambassador: “I started to learn more about MDS following my Grandad’s diagnosis back in 2017. Looking back on this period I recall the uncertainty and isolation that followed the knowledge that this was a ‘rare’ cancer. […]Read full post
CMML patient, Chris Dugmore, and her husband, Steve, started this group in Chelmsford in 2012. Meetings take place every 3-4 months, and have included informal talks by local physicians, haematology nurse specialists, a blood transfusion manager and a dietician. The meetings also offer a great opportunity for patient-to-patient exchange and support.Read full post
The Oxford group was started in 2011 by the myeloid team at the Churchill Hospital, with the enthusiastic support of leading AML/MDS specialist, Professor Paresh Vyas. Prior to Covid, meetings were held every 3 months in the Maggie’s centre in Oxford. Since Covid, meetings have moved online via Zoom. They are still facilitated by the Local Patient Support Ambassador, Claudia Richards – but as they are all online, meetings are open to all members Nationwide.Read full post