Transcript MDS Patient Forum The Lancaster Hotel London 24th September 2010 Welcome to MDS UK Patient Support Group Patient and Family Forum.

MDS Patient Forum
The Lancaster Hotel
London
24th September 2010
Welcome to
MDS UK Patient Support Group
Patient and Family Forum
Agenda
10.30
Welcome and Introduction
David Hall, Chairman MDS UK Patient Support Group
Rodney Taylor, Deputy Chairman, MDS UK
11.00
Introduction to Online Discussion Forum
Sophie Wintrich, Patient Liaison, MDS UK
11.15
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
13.00 – 13.45
Lunch
Agenda
13.45
Fundraising brain storming session
Everyone welcome to pitch in!
14.15
Myelodysplasia – Diagnosis and Treatment
Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield
15.10
Clinical 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
MDS UK Patient Support Group
Committee – Patient members
Sharon Berger - Treasurer
Fiona Murray – Secretary
David Hall – Chairman
Kay Melmoth – Logistics
Rodney Taylor – Deputy Chairman
Lin Ewart – Newsletter Editor
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
Activities 2010
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NICE
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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
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Meetings with new MP’s, Westminster
APPG Life Sciences talk by Rodney Taylor
Next APPG Conference 14th December
Anyone welcome to attend
Event 26th October 2010
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Parliament Lobby Event
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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
Activities 2010
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Attendance at European Patient Support
Group Meeting – Zurich
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Membership of Cancer 52
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Membership of Cancer Campaigning Group
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Patient presentations at Celgene
Activities 2010
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Cooperation on UK wide MDS Quality of Life
Study and PRO (Patient Reported Outcomes)
See flyer in your pack
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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
Planned activities 2010/2011
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Newsletter – First Edition
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Fundraising 
please help with suggestions after lunch
3 Marathon runners so far !
Thank you Elodie, Rachael and David
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Local patient groups – sign-up this afternoon
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Patient Forum Events:
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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
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
Online Message and Chat Forum
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To make contact and chat with others
Exchange of experience and support
Users located all over the UK
A further source of information for
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Sub-types of MDS
Regional contacts
Particular age-groups
Pre and post transplant issues
Online Message and Chat Forum
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What you need:
Email address
 Password you won’t forget
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Step by step demonstration
MDS Foundation Online Forum also
available – well informed and
welcoming American patients
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
Agenda
13.45
Fundraising brain storming session
Everyone welcome to pitch in!
14.15
Myelodysplasia – Diagnosis and Treatment
Dr Chris Dalley, Royal Hallamshire Hospital, Sheffield
15.10
Clinical 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
Please sign-up at the desk for the local groups.
Fundraising ideas
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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?
Last Part – Local Groups !
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Local Support and Chat groups for:
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London
Kent
Essex – lead by Chris Dugmore
Anywhere else?
Volunteers?
Venues? Own home? Coffee place?
Sign-up at welcome desk
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 !