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MDS Patient Forum

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... Haematology Clinical Nurse Specialist King s ... Novartis Oncology Activities 2010 NICE Ongoing consultee role for azacitidine appraisal Appeal hearing ... – PowerPoint PPT presentation

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Title: MDS Patient Forum


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

2
Welcome to MDS UK Patient Support Group
Patient and Family Forum
3
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
  • Kings College Hospital, London
  • Phyllis Paterson, Haematology Clinical Nurse
    Specialist
  • Addenbrookes Hospital, Cambridge
  • 13.00 13.45 Lunch

4
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

5
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

6
Other Committee members, Consultants, Advisors
  • Sophie Wintrich, MDS Foundation - Central Office
    and Patient Liaison
  • Phyllis Paterson, Specialist MDS Nurse -
    Addenbrookes Hospital, Cambridge
  • Janet Hayden, Specialist MDS Nurse - Kings
    College Hospital, London
  • Prof G J Mufti, Kings College Hospital, London
  • Dr Dominic Culligan, Aberdeen Royal Infirmary,
    Aberdeen
  • Stephen Berger, Trustee - Baker Tilly
  • Nick Wright, Website Design - Baker Tilly

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 MPs, 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 wont forget
  • Step by step demonstration
  • MDS Foundation Online Forum also available well
    informed and welcoming American patients

15
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21
Patient Forum Discussion Quality of Life
Session
  • Janet Hayden
  • Haematology Clinical Nurse Specialist
  • Kings College Hospital, London
  • Phyllis Paterson
  • Haematology Clinical Nurse Specialist
  • Addenbrookes Hospital, Cambridge

22
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.

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! Nex
t 2010 Forum are 12th November Cambridge
  • Please hand in questionnaires, evaluation forms
    and badges before you leave.
  • Thank you !
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