Here you will find contact details, updates, photos of all Local groups.
We hope to help create many more such patient led groups throughout the country.
Please help and get in touch if you feel you could contribute a bit of time to be a meet and greet person at these informal meetings.
Contact details in a printable version are available here
Oxford and Thames Valley Regional Group
This group meets every 4 months for 2-3 hours in the afternoon. Led by the Haematology Clinical Research Nurse Lianne Jones.
- Location: Churchill Hospital, Oxford Cancer and Haematology Centre, Level 2, Meeting room 1, Churchill Drive, Headington, Oxford, OX3 7LJ
- Contact: For more information and dates of meetings, please call Lianne Jones – Churchill Hospital on Tel: 01865 572023 – or check our Events page.
- Additional Contact: Gwyneth Brown-Lowe and Claudia Richards, two MDS patients who attend meetings of the Oxford Patient Support Group, have offered to help Lianne with the future co-ordination of the Group and its meetings. They feel some people may value the opportunity to have contact with other members of the Group between meetings. If you are interested please email Claudia on claudia.richards@fsmail.net with your full name, contact telephone number, preferred email address and the name of the hospital at which you (or your family member) are being treated. These details will be circulated to members of the Group who have opted for direct contact with others. 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 also mention this in your email. 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.
Exeter Area Patient Group
This group meets every 4 months for 2-3 hours in the afternoon. Led by patient John Watson and Haematology Support Specialist Tania Davidson. In 2012 –Plymouthand hopefullyTauntonwill join this group and host some meetings.
- Location: Royal Devon & Exeter Hospital, Reception of Yarty Ward, Barrack Road, Exeter, EX2 5DW
- Contact: For more information and dates of meetings: Tania – RD&E Hospital on Tel: 01392 402879
Essex Patient Group
Patient and MDS UK newsletter editor Chris Dugmore has started a group in Chelmsford.
Meetings take place every 3-4 months – with informal talks by local physicians or nurses – as well as allowing time for patient to patient exchange and support.
Check our Events page for meeting dates and details.
- Contact: Please contact us at the main office on Tel: 0207 733 7558 if you wish to join, meet or help contribute to this group.
Anglia Patient Group – Cambridge
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.
ANGLIA REGION SUPPORT GROUP POSTER 2013
- Location: Cambridge Cancer Help Centre, Scotsdales Centre, Great Shelford, CB22 5JT
- Contact: Further info, call our main office on Tel: 0207 733 7558 – or check our Events page.
Very sadly – one of the committee members – Vicki Wall – passed away on the 9th February 2013, after many weeks in hospital – due to a severe infection.
As one of the very active Cambridge committee member – we wanted place a few words on our site to remember Vicki, mark her fantastic contribution to the group and let her fellow members say a few words about her.
We first met Vicki when she, along with quite a few others, turned up to the Cambridge MDS Patient and Family Forum ( 2nd Dec 2011), organized by the MDS UK Patient Support Group, where she and other attendees volunteered to set up and run what became the Anglia Region MDS Support Group. Vicki was keen to take on the publicity posters for our first coffee morning. Vicki was due to be undergoing a bone marrow transplant sometime in the not too distant future, but had wanted to help in any way she could. The poster Vicki created was brilliant and after some minor tweaks, all of which Vicki did very quickly and cheerfully, was duly distributed to all the Committee. The first coffee morning was a great success and Vicki and her friend Sheila were able to attend. I think we only saw Vicki twice after this before she had to begin the preparation for transplant. We communicated via email subsequently and despite all the trials and tribulations that ensued after transplantation Vicki always remained cheerful and positive of the outcome. Vicki had intended to be at the December and January coffee mornings but unfortunately was actually in Addenbrooke’s, but she sent an encouraging email and hoped more people turned up than the last time.
Vicki was a very brave, cheerful lady for whom nothing was too much trouble and we will all miss her.
Richie & Chris Cunnell
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Below are tributes from John Heywood, Anglia Region Support Group treasurer, Peter Cornwall who was the Anglia Regions first chairman, and Guy & Heather Warwick, they sum up beautifully everyone’s thoughts.
I personally will miss Vicki hugely, as I know the group as a whole will. I think her major contribution was not the production of materials which, of course, she did splendidly and efficiently using her IT skills but her cheerful and positive presence at group meetings. With her sunny personality, she helped us to forget our “aches and pains.” I know that Vicki was looking forward to returning to the group and, in a very real sense, she will because her spirit will live on. I share with her family and friends a sense of real loss but also I am grateful that I have known her.
John Heywood
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A very sad loss to us all, she was the most willing person I have met and would always take on any task she could for the MDS Group. But for me once you really got to know her was her dry sense of humour and the smile which accompanied it, a lovely lady.
Peter Cornwall
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Vicki was always so helpful and kind. She was both practical in her in her assistance to our group and understanding and useful in conversations at get-togethers and over the telephone. We will all sadly miss her presence.
Guy and Heather Warwick
We offer our sincere condolences to Vicki’s family.
London and King’s College Hospital Group KCH
Group led by the Haematology Clinical Nurse Specialist at KCH. 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. Feedback, ideas for future meetings and comments from the meeting on 19.07.12 can be seen here.
- Location: Cicely Saunders Institute, King’s College Hospital, Bessemer Road, London, SE5 9PJ
- Contact: Further info, call our main office on Tel: 0207 733 7558 – or check our Events page.
Brighton and Sussex Group
A regional group started meeting at the BSUH in Brighton on 6th February 2013.
This groups is co-led by both patients Lynn Hale and Alison Parker – as well as nurses and haematologists at the hospital.
Meetings every 3-4 months – regular times and days to be determined. Meetings will alternate between talks by staff and patient to patient support and exchange.
Please let us know what else you’d like to discuss at the meetings.
- Location: BSUH – Audrey Emerton Building – Lecture Hall
- Contact: Further info, call our main office on Tel: 0207 733 7558 – or check our Events page.
Other emerging local groups
Yorkshire/Leeds area: several patients interested in meeting regularly
Cardiff/Bristol/Weston-Super-Mare area: a forum will be held in 2012 – but we need more patient interest to establish a regular local group.
Midlands: strong interest from many patients – we will hold a forum in the area in 2012 – please register your interest in joining this group.
Dublin/Ireland: 1 forum was held in 2011 – we would like to have another in 2012
Bournemouth/ Poole: Group starting soon – please contact us if you would like to join.