MDS UK

Local UK Groups

Here you will find contact details, updates, photos of all our Local and Regional groups in the UK.

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.

Oxford and Thames Valley Regional Group

Kirsty Crozier-Oxfordweb

This group meets every 4 months for 2-3 hours in the afternoon.
Led by the Haematology Clinical Nurses Kirsty Crozier (left) and Lianne Jones
Assisted by patients Claudia Richards and Gwyneth Brown-Lowe

 

  • 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 Kirsty Crozier or Lianne Jones
    Churchill Hospital on Tel: 01865 572023 – or check our Events page

01865 572023

Claudia-Oxford

Claudia

Additional Contact: Gwyneth Brown-Lowe and Claudia Richards, two MDS patients who attend meetings of the Oxford Patient Support Group, help Lianne with the 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.

GwynethBL-Oxford

Gwyneth

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

UPDATE JULY 2013 – this group has temporarily stopped meetings – due to low turn-out.We would like to start the group again – if there is enough interest.Optional new meeting places could be Plymouth – please get in touch if you’d like to attend and/or take a more active role.

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 –Plymouth and hopefully Taunton will 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 40287901392 402879

 

Essex Patient Group

Chris Dugmore-Essex Group

Chris

 

 

Patient and MDS UK newsletter editor Chris Dugmore has started a group in Chelmsford.
Meetings take place every 3-4 months
Includes informal talks by local physicians or nurses
Opportunity to for patient to patient exchange and support

 

  • Check our Events page for meeting dates and details of speakers
  • Contact: Please contact us at the main office on Tel: 0207 733 75580207 733 7558 if you wish to join, meet or help contribute to this group.
  • Venue – Central Baptist Church – Chelmsford
    Seminar Room 1, Central Baptist Church, Chelmsford, CM1 1LN

 

 

Phyllis Paterson-Addenbrooke's CNSAnglia 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 info day 7ANGLIA 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 75580207 733 7558 – or check our Events page.

Main contacts are Chris and Richard Cunnell and John Heywood.

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 to 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.
Please click here for Vicki Wall tribute – Oct 2013

Update Oct 2013 – we have just learnt that Vicki had made a will – and 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.

Anglia Group - quilt raffleVicky 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 KCHGeke Ong-KCH GroupJanetHayden-KCH CNSNanaBQ-crop

Group led by the Haematology Clinical Nurse Specialist at KCH. Meetings every 3-4 months – 3pm to 6pm

Nurses are Nana Benson- Quarm, Janet Hayden and Geke Ong

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 75580207 733 7558 – or check our Events page.

 

Brighton and Sussex Group

Brighton Pat Group2-web

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.Brighton Pat Group4-web
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 75580207 733 7558 – or check our Events page.

Dublin/Ireland:

An official MDS Ireland group was formed over 2013 – 2014 led by Sinead Mahon, whose Mum Brenda has MDS.
MDS UK is offering advice, guidance and financial support to this emerging group.
Dr Helen Enright of the Centre of Excellence in Dublin is supporting the group as well.

More news available soon – do get in touch with us if you would like to be informed and/or added to their distribution list.
Check our Events page on the website, and the Online Forum page dedicated to Irish area meetings.

Kent Group

Our latest group – which started on 14th March 2014.
Where: Charing Parish Hall, Station Road, Charing – TN27 0JA (Station Rd is the continuation from Pluckley Road towards the north)
To attend: Please contact MDS UK main office – 0207 733 75580207 733 7558
This local group takes place near Ashford, in the very pretty village of Charing, in the Parish Hall.
Charing Parish Hall is in Station Road, Charing, very near it’s junction with the A 20 Ashford to Maidstone road.

By Rail, Charing Station is on the Ashford to Maidstone line. Turn left out of the station towards the village, and the Hall is about 200yards on your left.
By Road, Station Rd and Pluckley Rd are continuations, towards the South, of Charing High Street. Turn off the A20 towards Pluckley (B2077), and the Hall is immediately on your right.
There is a small public car park just beyond the hall on the same side.
Entrance:  Look for a black and white “Mock Tudor” porch, and the entrance to the meeting room is up a path on the A20 side of the hall.
This local group will be co-organised by Frank Richard Stoodley (known as Richard), who has lived in the Charing area for 40 years. Richard was diagnosed with MDS at the end of 2012.
We are still looking for 1-2 other people to help meet and greet new patients.

Other emerging local groups

Yorkshire/Leeds area: several patients interested in meeting regularly.  Meeting place required is being organised.

Cardiff/Bristol/Weston-Super-Mare area: we need more patient interest to establish a regular local group.
As well as a meeting place.

Midlands: strong interest from many patients – not been able to hold a forum in the area in 2012 – due to main office being short staffed – but please register your interest in joining such a group.
We need a meeting place there – if anyone knows of a convenient place?
Either free or not too costly?

Bournemouth/ Poole: Group starting soon – please contact us if you would like to join.
A few patients have expressed an interest in a group there.
We do need 2-3 people willing to take a more active role to act as a welcome committee there.
Not much is needed – just a willingness to turn up at the group meetings 3-4 times a year and make newcomers feel welcome.

 Please contact us if you would like to start another regional group