What do our members say about MDS UK Patient Support Group?

Owain Wilkins: "We have found the information provided by MDS UK, through its patient handbook, newsletter and website, to be invaluable"

"When a loved one was diagnosed with the rare disease MDS, a condition about which my family and I (and countless others) had previously not heard, it was difficult to know where to turn for information. In addition to the first-class care and support provided by the haematology unit at the University Hospital of Wales, we have found the information provided by MDS UK, through its patient handbook, newsletter and website, to be invaluable. The charity’s work, both in promoting knowledge of MDS and in supporting patients and their families, is truly inspirational. I’d like to think that the funds I raise as a result of running the Cabbage Patch 10 will represent a small but helpful contribution to its ongoing efforts."

"I have been to only 2 patient meetings so far and found them both very helpful. I also attended the day forum in London a couple of years ago. Meeting other MDS patients and sharing experiences with them has made a great difference to the way in which I deal with my own MDS and put my own current medical position in perspective."

"I discussed my aunt's health situation with Sophie Wintrich. She was very giving of her time and experience/expertise and I really appreciated talking with her."

"The MDS Patient Support Group has given me a much better perspective on my condition and the various ways for self-help."

"Grateful you exist and that you run the Bournemouth group."

Last month we sent out a Satisfaction Survey to our members. These were some of the results:

What do we do well?

"Very helpful talking to other patients in a relaxed, non clinical atmosphere"

"I am an MDS patient in Ireland. Sophie has been a constant support to me since last Sept. Her knowledge of the disease has given me the hope and reassurance that I needed when no one else was able to do that. She has also put me in touch with another MDS patient which has been an invaluable to me."

"I would like to say MDS Patient Support Group has been AWESOME and I am low level MDS."

"Helpful list of drugs currently under trial."

"The patient support group meeting we attended provided useful information and was much more conveniently located for us than previous meetings."

"This is the only time I have contacted the support group but found the information on the website was very helpful"

"Very supportive to help put my mind at ease."

"The group meeting was excellent. Everyone was very friendly and the information provided was very useful."

"We have found the Support from the MDS team very supportive and helpful especially Sophie while our sister has been treated for MDS."

"The support group that I belong to is good and has interesting meetings and is very welcoming. Plenty of information too. They arranged a tour of the blood labs in June which my husband and I found very interesting."

"I always find information extremely helpful."

"I downloaded a leaflet about fatigue and it was very helpful to read about issues with fatigue and how to manage them."

"To know that there is a support network to help my mum gives me great strength"

Thank you so so much for your kind words and understanding on the phone today. It has been such a tough few weeks and to know that there is a support network out there to help my mum through this MDS diagnosis gives me great strength. We are trying to come to terms with the options available and we are beginning to accept that it is a long road ahead but we just want my Mum to have someone outside of us for support if required. She will call you as well - she was so relieved to hear how supportive and kind you were. It meant the world to me. I worked as a bereavement midwife specialist but no amount of training or experience prepares you for something like this. The information on MDS is frightening and right now it feels like we are completely consumed by it. I just want to get to a point where mum is living her life as normally and happily as possible with MDS as part of it. Thank you so much again. Your care and compassion was so greatly appreciated. I got out there and delivered all those babies today on labour ward with the knowledge that this might be something we can help my mum through whatever the outcome.

What do we need to do better?

"My sister died aged 54 from MDS on 29.4.16. She was diagnosed 5 months earlier and desperately needed to talk to someone in the same position. She was too ill to travel to any groups. I wish there was something in Newcastle as she felt very alone in the weeks before she died despite family. I think she was frightened to talk about the possibility of dying with us..."

"I would like to hear more about the particular MDS which I have. (-5q syndrome)"

"Very disappointed that there is no link to AAMDS webinars. (Please visit the site by clicking here)"

"Have not received any info since last year, due to shortage of staff. Posted a cheque donation at Christmas, was not received. Have not sent again..."

"Pity you don't arrange meeting in the Bristol area."

We would love to hear from you!

MDS UK Patient Support Group Satisfaction Survey

It would mean a lot to us if you could take just a few minutes to let us know your thoughts, and feedback on your experience with the support group. Is something missing? How do you feel about the service? Do let us know by using the link below. It could help us with future fundraising and support for others, along with improvements we can make.

Please note that results are anonymous.

Join MDS UK Patient Support Group!

It is free and open to all, so why not join us?

To join please call us 020 7733 7558 or email us and give us your full address.

We will post you an information pack and add you to our list of active members.

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