MDS Patient Forum

1. MDS Patient Forum The Lancaster Hotel London 24th September 2010

2. Welcome toMDS UK Patient Support GroupPatient and Family Forum

3. 10.30Welcome and Introduction David Hall, Chairman MDS UK Patient Support Group Rodney Taylor, Deputy Chairman, MDS UK 11.00Introduction to Online Discussion Forum Sophie Wintrich, Patient Liaison, MDS UK 11.15Patient Forum Discussion – Quality of Life Session Janet Hayden, Haematology Clinical Nurse Specialist King’s College Hospital, London Phyllis Paterson, Haematology Clinical Nurse Specialist Addenbrooke’s Hospital, Cambridge 13.00 – 13.45 Lunch Agenda

4. Agenda 13.45Fundraising brain storming session Everyone welcome to pitch in! 14.15Myelodysplasia – Diagnosis and Treatment Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield 15.10Clinical trials Clinical Nurse Specialists 15.30 General Questions and Answers Session Chris Dalley, Janet Hayden, Phyllis Paterson 15.50 Tea/Coffee and creation of local groups for London, Kent, Essex – suggestions welcome Please also sign-up at the desk for the local groups

5. MDS UK Patient Support GroupCommittee – Patient members Sharon Berger - Treasurer Fiona Murray – Secretary David Hall – Chairman Kay Melmoth – Logistics Rodney Taylor – Deputy Chairman Lin Ewart – Newsletter Editor

6. Other Committee members, Consultants, Advisors Sophie Wintrich, MDS Foundation - Central Office and Patient Liaison Phyllis Paterson, Specialist MDS Nurse - Addenbrooke’s Hospital, Cambridge Janet Hayden, Specialist MDS Nurse - King’s College Hospital, London Prof G J Mufti, King’s College Hospital, London Dr Dominic Culligan, Aberdeen Royal Infirmary, Aberdeen Stephen Berger, Trustee - Baker Tilly Nick Wright, Website Design - Baker Tilly Aoife Pauley - Celgene Santoke Naal - Novartis Oncology

7. Activities 2010 • NICE • Ongoing consultee role for azacitidine appraisal • Appeal hearing for azacitidine • Re-appraisal 6th October • Decision expected when….???? • Participation at PiN (Patients involved in NICE) meetings • Parliament • Meetings with new MP’s, Westminster • APPG Life Sciences talk by Rodney Taylor • Next APPG Conference 14th December Anyone welcome to attend

8. Event 26th October 2010 • Parliament Lobby Event • 26th October 2010 – 4pm - Westminster • Opportunity to meet your MP face to face • Raise awareness of MDS • Educate your new MP about MDS • Raise issue of access to drugs • Ask questions about Cancer Drug Fund • Opportunity to talk to press • Make your voice heard See flyer - check our website Sign-up for participation today – at the desk

9. Activities 2010 • Attendance at European Patient Support Group Meeting – Zurich • Membership of Cancer 52 • Membership of Cancer Campaigning Group • Patient presentations at Celgene

10. Activities 2010 • Cooperation on UK wide MDS Quality of Life Study and PRO (Patient Reported Outcomes) See flyer in your pack • Participation in European Quality of Life Scientific Working Group with EHA (upcoming) • Working with UK MDS Forum – the UK group of top MDS Specialists and researchers – including Dr Chris Dalley – clinician presenter for this afternoon

11. Planned activities 2010/2011 • Newsletter – First Edition • Fundraising - please help with suggestions after lunch • 3 Marathon runners so far ! Thank you Elodie, Rachael and David • Local patient groups – sign-up this afternoon • Patient Forum Events: • 2010 London and Cambridge – and hopefully Bournemouth again this year • Glasgow and Exeter postponed to 2011 • Plans for 2011 - Exeter, Oxford, Leeds, Cardiff, London, Cambridge, Bournemouth

12. MDS Foundation News 11th International MDS Symposium Patient and Family Forum with international guest speakers Edinburgh - May 18-21, 2011 More details to follow soon – please check the websites: www.mdspatientsupport.org.uk www.mds-foundation.org

13. Online Message and Chat Forum • To make contact and chat with others • Exchange of experience and support • Users located all over the UK • A further source of information for • Sub-types of MDS • Regional contacts • Particular age-groups • Pre and post transplant issues

14. Online Message and Chat Forum • What you need: • Email address • Password you won’t forget • Step by step demonstration • MDS Foundation Online Forum also available – well informed and welcoming American patients

21. Patient Forum Discussion – Quality of Life Session Janet Hayden Haematology Clinical Nurse Specialist King’s College Hospital, London Phyllis Paterson Haematology Clinical Nurse Specialist Addenbrooke’s Hospital, Cambridge

22. Agenda 13.45Fundraising brain storming session Everyone welcome to pitch in! 14.15Myelodysplasia – Diagnosis and Treatment Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield 15.10Clinical trials Clinical Nurse Specialists 15.30 General Questions and Answers Session Chris Dalley, Janet Hayden, Phyllis Paterson 15.50Tea/Coffee and creation of local groups for London/Kent/Essex Please sign-up at the desk for the local groups.

23. Fundraising ideas • What did you think of the suggestions? • Who has another idea? • Who has a little bit of time? • Who has willing friends or family members to help? • Who has access to good venues or halls? • Who has interesting contacts? • Who knows people with goods to donate?

24. Last Part – Local Groups ! • Local Support and Chat groups for: • London • Kent • Essex – lead by Chris Dugmore • Anywhere else? • Volunteers? • Venues? Own home? Coffee place? • Sign-up at welcome desk

25. Thank you for attending – and participating!Next 2010 Forum are:12th November – Cambridge Please hand in questionnaires, evaluation forms and badges before you leave. Thank you !