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Kent Patients’ Group

Kent Local MDS Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

Led by Andy Veitch. Come and join this growing and energetic group in this region!

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.

Location:
St. Dunstan’s Hall, 80 London Road, Canterbury, Kent, CT2 8LS
Find it in this Map

Email:
Kentgroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

Dunstan's Hall

St. Dunstan’s Hall

MDS UK Patients Forum

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

Essex Patients’ Group

Essex Local MDS Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

Patient Chris Dugmore started this group in Chelmsford.
Meetings take place every 3-4 months and it includes informal talks by local physicians or nurses.
They offer a great opportunity for patient to patient exchange and support.

Essex Group Meeting

Latest Essex Group Meeting: 23 Attendees!

Meeting on October 25: MDS World Awareness Day!

Meeting on the 17th of April

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

Come and share your questions and experience

Friends and family members are also invited

MDS UK Patients Forum

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

Oxford and Thames Valley Regional Group

Oxford and Thames Valley Local MDS Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

This group meets every 3 months on Friday mornings between 10.30 am and 12.30 pm. Led by Advanced Nurse Practitioner Kirsty Crozier and assisted by patients Claudia Richards and Gwyneth Brown-Lowe.
Contact: For more information and dates of meetings, please email oxfordgroup@mdspatientsupport.org.uk

Location:
Maggie’s Oxford Centre
Churchill Hospital
Old Road
Oxford, OX3 7LE
Find it in this Map

Email:
Oxfordgroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

What do people say about this local group?

Are you unsure whether to attend the meetings? See what other people are gaining from taking part!

Anna

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.

Rob

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.

John

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.

Robin

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.

Claudia

Claudia

Gwyneth

Kirsty Crozier

If you would be willing to act as a point of contact at your local hospital (for instance, taking in posters/leaflets, being a contact for any MDS patients who have not previously come to the Support Group meetings), please let us know. Gwyneth and Claudia also welcome any suggestions for future meeting topics/speakers and for any other type of event (Coffee Morning, Fundraiser etc.) which you feel the Group should consider.

MDS UK Patients Forum

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

Anglia Patient Group Cambridge

Anglia Local MDS Group - Cambridge

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

Several volunteers run this regional group – and have set themselves up as a committee. All members are MDS patients.

Activities alternate between presentations and general get together opportunities. This group also gets involved in raising MDS awareness regionally.

We are looking for a New Coordinator of the Anglia MDS UK Local Group.

Location:

David Raynor Building
Cambridge Cancer Help Centre
Scotsdales Garden Centre
Great Shelford CB22 5JT
Find it in this Map

Email:
Angliagroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

MDS UK Patients Forum

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

Vicki Wall

Vicki Wall, who passed away on the 9th February 2013 was one of the very active Cambridge committee member. Her contribution to the group was fantastic. Please click here for Vicki Wall tribute – Oct 2013 written by her fellow members.

Vicki very generously left £500 to MDS UK.  We are so grateful to her for this – not only for the funds, but also for having the courage to make a formal will.  This is often a difficult topic for all patients and families.

Vicky was a very talented lady and one of her friends – Sheila Walker – donated a lovely quilt she had made, which the Anglia group offered as a prize in a raffle.  Here is the photo of the quilt. Thank you to both Sheila for donating the quilt – and Chris for the raffle.


London and King’s College Hospital Group KCH

Group led by the Haematology Clinical Nurse Specialists at King’s College Hospital. Meetings every 3-4 months – 3pm to 6pm

Current meetings are combined with the Aplastic Anaemia Trust (AAT), with both AA and MDS patients invited to attend.

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Bournemouth Group

Bournemouth Local MDS Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

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A New Edition of the MDS Patient Handbook is out!

Being diagnosed with myelodysplastic syndrome (MDS) can be a shock, particularly when you may never have heard of it.

MDS UK has now produced a new edition of the MDS patient booklet, created in cooperation with our colleagues from Leukaemia Care and Bloodwise.

At MDS UK, we felt there was an urgent need to revise the existing information material. We wanted to ensure that as many patients as possible would benefit from this in-depth booklet, and hence asked those two great organisations to join us in this project. It is highly necessary and beneficial to all patient groups to work together whenever possible, and save valuable funds that way.

This booklet has been written by Dr Sally Killick, Consultant Haematologist; Dr Dominic Culligan, Consultant Haematologist; Philip Alexander, Counsellor and Cognitive Behaviour Psychotherapist; Geke Ong and Janet Hayden, Clinical Nurse Specialists; and peer reviewed by Professor David Bowen, Honorary Professor of Myeloid Leukaemia Studies and Consultant Haematologist, St James’s Institute of Oncology. The booklet has also been reviewed by patients and we are grateful to Chris Dugmore and Claudia Richards for their valuable contribution.

The booklet has been written to help you understand more about MDS. It describes what they are, how they are diagnosed and treated and also the expected outcome (prognosis). It also provides information on coping with the emotional impact of an MDS diagnosis.

New Edition! Learn more about MDS with Our MDS Patient Handbook

If you wish to obtain a copy of the booklet please click here or contact us by email or telephone:
admin1@mdspatientsupport.org.uk or 020 7337558

A stock of booklets is also available at all of our local group meetings.


Make Blood Cancer Visible 2018 coverage from Manchester

“The Make Blood Cancer Visible campaign, this week was set up in Manchester From the 17th – 22th Sept

Make Blood Cancer Visible 2018 Installation

The pharmaceutical company Janssen has put together an amazing installation of transparent, motion-activated human figures which creatively represent the ‘unseen’ or invisible nature of blood cancer. The figures share real-life stories from people with blood cancer, in their own voices, encouraging passers-by to listen to their experiences and to show their support for the campaign.

Hear below the voices of real patients, taken from the audio on the exhibits:

Sandy: Blood cancer is very hard, I find it hard to describe both to myself and to my friends and family.

Carmen: I look okay to the outside world, but in the inside my body is trying to kill me. Just because I look good today and I feel fine doesn’t mean I'm okay.

Debbie: I avoided going to the doctors. I'd got the symptoms and I knew there was something wrong, I just put it off.

Claudia: Even now nine years later, the enormity of a very uncertain future can be quite overwhelming.

Debbie: I always thought I was a strong person anyway, but I think now I really know what strong is.

Carmen: And I think our bodies are really powerful. In some way they will find, if you're really lucky, a way of regenerating, so I'm really lucky that I'm in remission now.

Debbie: I discovered that the more I shared the better I felt.

Take a look at the many photos and reactions of the public to this exhibit – and read all about the launch of the campaign on the London

Photos from the Manchester Installation

We thank Janssen UK for sponsoring this work and making this awareness campaign possible. Without their help and organization, this type of work would not have been possible.


Oral Azacitidine Plus Best Supportive Care

*SUSPENDED*

  1. SUB-TYPE OF MDS: Those who need red blood cell transfusions
  2. SEVERITY OF MDS: Low
  3. NAME OF DRUG: Oral Azacitidine
  4. Aims and benefits: To investigate the efficacy and safety of Oral Azacitidine + Best Supportive Care VERSUS Placebo + Best Supportive Care

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Exeter Area Patient Group

Bringing all the conditions together, a new general haematology group at Royal Devon & Exeter Hospital was set up by Rachel Stewart.

All MDS patients treated at the Royal Devon & Exeter Hospital are invited to come to the meetings which take place on the first Thursday of every month between 4:30 pm  and 6 pm.

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