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Yorkshire MDS UK Patient Support Group

 

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.

Come and share your questions and experience

Friends and family members are also invited

Other ways of meeting and sharing experiences

Try our newly upgraded Chat Forum!

Leave a message in one of the folders, ask a question, respond to a message that’s already there or just say hi! (The messages can be read by anyone as a guest user. If you want to respond or write a message you will have to register.)


Midlands MDS UK Patient Support Group

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. Having heard of the success of the other regional support groups, I was determined to bring this initiative to the inevitably large patient and relative population of the Midlands region. I appreciate the potential for such a group to provide that unique degree of comfort that is necessary alongside the standard medical care.

Having completed my Medical Sciences degree I am now spending the year working in research at the Queen Elizabeth before returning to university to begin my medicine degree. My mum has also worked within the trust for the past 20 years. Together, we are both very familiar with the hospital and its welcoming environment. Looking back to the time when I knew very little about MDS, it is incredible to now be able to set up the very first Midlands Region Support group. I hope these meetings provide a friendly platform to gain the necessary knowledge, guidance and support that remains individual to every person living with MDS and their loved ones.

I look forward to meeting many of you!"

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 the area.

MDS UK CEO Sophie Wintrich and Sophia Taylor, Midlands Group Coordinator

MDS UK CEO Sophie Wintrich and Sophia Taylor, Midlands Group Coordinator

Location:
Seminar room 1 - Education Centre - Queen Elizabeth Hospital Birmingham, Mindelsohn Way, Edgbaston, Birmingham, B15 2GW
Find it in this Map

Email:
midlandsgroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

Other ways of meeting and sharing experiences

Try our newly upgraded Chat Forum!

Leave a message in one of the folders, ask a question, respond to a message that’s already there or just say hi! (The messages can be read by anyone as a guest user. If you want to respond or write a message you will have to register.)


Essex MDS UK Patient Support Group

 

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.

Essex MDS UK Patient Support Group Meeting - 23 attendees!

Essex MDS UK Patient Support Group Meeting

Meeting on October 25: MDS World Awareness Day!

Location:
Broomfield Village Hall (Small Hall)
158 Main Road, Broomfield, Chelmsford, CM1 7AH
Find it on the map
Contact: Chris on 01702 478244 if you want to join, meet or contribute to this group
Email: essexgroup@mdspatientsupport.org.uk

Come along and share your questions and experience.

Friends and family members are also invited

Other ways of meeting and sharing experiences

Try our newly upgraded Chat Forum!

Leave a message in one of the folders, ask a question, respond to a message that’s already there or just say hi! (The messages can be read by anyone as a guest user. If you want to respond or write a message you will have to register.)


MDS UK Patient Support Group (Oxford)

 

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 same Local Patient Support Ambassador, Claudia Richards  - but as they are all online, meetings are open to all members Nationwide.

Come and join us at our next Zoom meeting, you'd be very welcome.   For more information and dates of meetings, please email Claudia Richards  oxfordgroup@mdspatientsupport.org.uk

Location:
Maggie’s Oxford Centre
Churchill Hospital
Old Road
Oxford, OX3 7LE
Find it on the map

Email:
oxfordgroup@mdspatientsupport.org.uk

Come along and share your questions and experience.

Friends and family members are also invited

What people say about the Oxford MDS UK Patient Support Group

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I felt very alone when I first received my diagnosis. The meetings have helped me learn more about MDS and meet others with the same condition but different experiences.

My introduction to the Oxford Support Group was prevaricated. I had seen posters within the Churchill Hospital, had pledged to go, but had then missed the dates. I already attended "Maggies" Oxford and was benefitting from being with other cancer survivors.

Having joined MDS UK I finally met with the Oxford Support Group and was able to be with others who also had been diagnosed with the same condition as myself, albeit with many variations. I had found the illness a somewhat lonely experience and the sharing was a great counterbalance.

Claudia, the group co-ordinator, brought to the meeting news and views from afar, and, at later meetings, Kirsty, the specialist nurse and a mine of information, was able to answer members’ questions in a full and easy to understand manner.

There are exciting plans for the next meeting and, as usual, I am looking forward to it.

I have had Non-Hodgkins Lymphoma for 17 Years and in March 2017 I was told by my Haematologist that it had developed into MDS. Although I received a good explanation medically, I was still very unsure about future treatments. I attended the Maggie Centre at the Churchill Hospital in May 2017, and heard about the MDS Patient Support Group. Maggie’s is a lovely building and has a very relaxing, non-clinical feel. On 23 June my wife and I attended the MDS group's bi-monthly meeting. We were able to discuss MDS and its treatment with 12 other patients. Everyone there has a different form of MDS or were at different stages of treatment. It gave my wife and myself great confidence in the future and we gained loads of knowledge.

We also had a presentation by an advanced nurse practitioner, who explained the various blood readings and their implications. This was extremely useful for the future. Our next meeting is on 29 September at the John Radcliffe where latest developments in MDS research will be explained and we will be able to tour the Haematology Lab. We look forward to it and meeting with fellow patients again.

I joined the Group when it was first formed, or shortly afterwards, by one of the Research Nurses working with Prof Vyas. In those days, we met in one of the lecture rooms at the Churchill Hospital. I don't remember very much about the early meetings: I hadn't been diagnosed with MDS very long, but had been referred to the Churchill and was on a clinical trial.

After a time we had to move out of the lecture rooms and start using a portacabin, with an occasional social get-together in a pub! For various reasons, the numbers attending the meetings dwindled and we struggled to remain in existence. But we did, thanks to Claudia, who had taken on the role of co-ordinator. During this time, we could see some building work in progress, which was most intriguing as there was no indication of its purpose. However, it turned out to be a Maggie Centre and this became the new home for our meetings!
At these meetings we are able to talk to each other about MDS and our treatment experiences – as most of us have a different Syndrome - and support one other in a sympathetic way. Maggie’s provides very comfortable meeting rooms and the volunteer staff are all very welcoming, greatly contributing to making our meetings a pleasant and helpful experience.

The group is very much revitalised and membership has increased thanks to Claudia's efforts, and to Kirsty, our very knowledgeable clinical lead and her informative talks. Kirsty is also able to arrange for members of the Churchill's staff to talk to us on subjects of interest. Particularly interesting will be the upcoming visit to the Research Lab.

Other ways of meeting and sharing experiences

Try our newly upgraded Chat Forum!

Leave a message in one of the folders, ask a question, respond to a message that’s already there or just say hi! (The messages can be read by anyone as a guest user. If you want to respond or write a message you will have to register.)


Bournemouth Local MDS Patient Support Group

Meetings are scheduled on Wednesdays between 10.30 am – 1 pm every 4 months, at the moment they take place online via Zoom. Since going online our group is open to all MDS UK members Nationwide.

Location:
The Grove Hotel
2 Grove Road
East Cliff
Bournemouth
Dorset BH1 3AU
Find it in this Map

Email:
Bournemouthgroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

> Visit our calendar to find dates and times

They include talks from experts in the field and also informal discussions to share knowledge and experiences with other patients.

Not long ago we sadly lost one of Bournemouth Group Coordinators, Guy Rouquette.

> Please visit Guy's Memorial Page, where we celebrate his life

Meeting Notes 28/02/2018

What happened in the meeting? Catch up here

Meeting agenda:

  1. Share experiences in dealing with their disease, concerns, advices etc.
  2. Discussion about What is fatigue? What are the sources of fatigue? and how to cope with fatigue?
  3. Group discussion on travel insurances for MDS patients

Open Meeting Notes

Patients in the Wessex region can also benefit from additional complementary treatments and services, provided free of charge by the Wessex Cancer Trust.

At all of our free Cancer Support Centres, clients are welcomed by our volunteer befrienders who are equipped to provide information, support and a listening ear.

Our team of specialist counsellors are there to help deal with the emotional impact of cancer and our complementary therapists aim to improve well-being, help with pain management and increase self-confidence.

MDS UK Online Forum

The messages can be read by anyone as a guest user. If you wish to respond or write a message you have to register


Southampton MDS Patient Support Group

Location:
NOVOTEL SOUTHAMPTON,
1 West Quay Road,
Southampton SO15 1RA

Email:
southamptongroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

Our Southampton Group is taking shape!

We are very grateful to volunteers Andy Scott and Philip Dinn who are assisting MDS UK with the running of this new local group. We are looking for 2-3 more people to assist – so please do contact us if you’d like to help out for our 3 meetings per year.

To date, meetings were taking place in the Novotel by the train station, but we are also looking for a permanent meeting location for this group – and will be posting details on our website soon.

We are also extremely grateful to Southampton clinical staff – CNS Dawn Cousins, Dr Chris Dalley and Dr Srinivasan Narayanan who will continue to be regular contributors to this local group.

Southampton Local Group meeting - 26th February 2020

Local team:
Andy Scott, coordinator (and carer)
Philip Dinn, coordinator (and patient)

Clinical team:
Dawn Cousins, CNS
Alison Lyons, CNS
Dr Chris Dalley
Dr Srini Narayanan

Our renewed thanks to coordinators and staff for making this group possible.
And congratulations to all involved and attending for creating a very helpful, inviting, honest and warm atmosphere.

Please attend this group and tell your clinical staff about it, so that other patients may benefit as well.

Philip Dinn's Story - Group Coordinator and Patient

In March 2017 I had a routine blood test for diet-controlled Type 2 diabetes. The result was a shock as it revealed that I was neutropenic. A very rapid referral to Southampton Hospital and a bone marrow biopsy confirmed the worst. Luckily for me It Dr Chris Dalley who made the prognosis and offered me the chance of a cure with a stem cell transplant. It all happened so fast that I really did not understand what was happening other than it was totally out of my control and I guess I was resigned to that.

I had been given information on MDS UK Patient Support, but I was signed up to trail AML18 and in hospital for my first round of chemotherapy before I had any chance to understand what was on offer.

On reflection that was when we needed to hear stories of other patients. The professional medical staff were wonderful, and I was building up a library of information on the various drugs that were being used but I still lacked any contact with other MDS patients, or my wife Fiona with any other carers.

By the time I had my second round of chemotherapy I was more aware of the work carried out by Sophie and the whole team, and a donor had been identified. So after successful remission of the original problem then I was all set for the stem cell transplant when an infection became evident that manifested itself as a cyst in my liver. So, it was back into hospital my third prolonged stay. Further treatment continued at home, but it was not until June of this year that everything came together, and I had my stem cell transplant.

My only regret was that it took me so long to understand the full support on offer from MDS UK, but, now that I have, I hope that I can help to help others.

Photo of our local group in Southampton at the meeting on the 10th Oct 2018

Patients in the Wessex region can also benefit from additional support and services, provided free of charge by the Wessex Cancer Trust.

www.wessexcancer.org.uk

At all of our free Cancer Support Centres, clients are welcomed by our volunteer befrienders who are equipped to provide information, support and a listening ear. Our team of specialist counsellors are there to help deal with the emotional impact of cancer and our complementary therapists aim to improve well-being, help with pain management and increase self-confidence.

MDS UK Online Forum

The messages can be read by anyone as a guest user. If you wish to respond or write a message you have to register


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