The Royal Lancaster London 43 rd October 2014 Welcome to MDS UK Patient Support Group Patient and Family Forum Agenda 1030 Welcome and Introduction to MDS UK Sophie Wintrich Chief ExecutivePatient Liaison MDS UK ID: 543152
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Slide1
MDS Patient Forum
The Royal LancasterLondon 43rd October 2014Slide2
Welcome to
MDS UK Patient Support Group Patient and Family ForumSlide3
Agenda
10.30 Welcome and Introduction to MDS UK Sophie Wintrich, Chief Executive/Patient Liaison, MDS UK
10.40
Coping with Anxiety
Anne Crook, Counsellor/Cognitive
Behavioural
Therapist
The Christie, Manchester
11.15
Patient Forum Discussion – Quality of Life Session
Anne Crook and Janet Hayden
Haematology Clinical Nurse Specialists
King’s College Hospital, London
12.15
Lunch
Meeting resumes 13.00Slide4
Agenda
13.00 Diagnosis, Treatment and Research Update Dr Austin Kulasekararaj
, Consultant
Haematologist
,
King’s
College Hospital, London
Questions & Answers
14.45
MDS UK Campaigns and Access to treatment,
Activities
Survey
Update
Sophie Wintrich, MDS UK
Monika Janosik, MDS UK
15.30
MDS UK Regional Groups
Members involved in a local group
16.00 Close of daySlide5
MDS UK Patient Support GroupCommittee – Patient members
Rodney Taylor – ChairmanJohn Taylor – Deputy Chairman
Fiona Murray – Secretary
Joanne Anderson – Fundraising
Chris Dugmore – Newsletter Editor
Russell Cook - Member
Zlatko
Sisic
– HTA advisorSlide6
Other Committee members,
Consultants, AdvisorsSophie Wintrich, CEO/Patient Liaison, London
Monika
Janosik
,
Project Worker, MDS UK, London
Peter Wilson
, Volunteer
Phyllis Paterson,
Specialist MDS Nurse -
Addenbrooke’s
Hospital, Cambridge
Geke
Ong
,
Specialist MDS Nurse - King’s College Hospital, London
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
Jan Buchanan,
Fundraising
______________________________
Open-ecommerce.org – The helping hand
Eduardo G Silva and Mariano Marey – our wonderful website designersSlide7
Patrons for MDS UK
Lord Tariq Ahmad House of Lords memberProf Ghulam Mufti Head of Dept
of Haematology - KCHSlide8
Instructions for the day
Come and go as you pleaseFire exits/toiletsBe comfortable!Ask questions
Exchange contact detailsSlide9
Items in your information pack
Evaluation form about todayFor feedback, suggestions, criticismsand improvements
Please
hand in by end of
today
25
th
October Awareness Day
Poster, badges, fundraising leaflet
Other materials available on display –
incl
T-shirtsSlide10
Introduction to next talk
Most MDS patients will suffer from anxietyShown in our surveyEvident in patient callsDiscussed in local groupsSlide11
Patient Forum Discussion –
Quality of Life SessionJanet HaydenHaematology Clinical Nurse Specialists
King’s College Hospital, LondonSlide12
Agenda
13.00 Diagnosis, Treatment and Research Update Dr Austin Kulasekararaj, Consultant Haematologist
,
King’s College Hospital, London
Questions & Answers
14.45
MDS UK Campaigns and Access to treatment,
Activities
Survey Update
Sophie Wintrich, MDS UK
Monika Janosik, MDS UK
15.30
MDS UK Regional Groups
Members involved in a local group
16.00 Close of daySlide13
Access to MDS drugs 2011-2014
NICE (National Institute for Health and Clinical Care Excellence)Successful azacitidine appraisal – after
2 years work
Successful Lenalidomide appraisal – Sept 2014
Participation at
PiN
(Patients involved in NICE)
SMC – Scottish Medical Consortium
Azacitidine
approved on second submission - Sept 2011
Patient Support group submissions crucial
Lenalidomide approved – March 2014
Phase 3 trial drugs
Strict eligibility criteria?
Trial study closed?
Managed Access
ProgrammesSlide14
Health care reforms & CDF
Value Based Pricing 2014 – Consultation …???Cancer Drug Fund - extendedYour local MP’sDo they know you have MDS ?
Access to a dedicated CNS:
Haematology Clinical Nurse Specialist
Call to Action – for all clinical staff involved in management of MDS patients
Activities
around access to better care 2014Slide15
Activities 2011-2014
Cancer 52Patient presentations at CelgeneNurse education days
European
MDS Patient Support Group Meetings – MDS
Alliance
Tissue Banking & running of Tissue Banks
MDS Trial group meetingsSlide16
Cooperation with specialists
& haematology conferences& other organisations
European Quality of Life Scientific Working Group with EHA
European EHA & worldwide ASH conferences
UK MDS Forum – MDS specialists & researchers
Leukaemia CARE, Leukaemia & Lymphoma Research
Cancer topic - Anthony Nolan, MacmillanSlide17
2014 Materials and plans
Factsheets - Fatigue, Nutrition, Clinical TrialsTravel, First Diagnosed, Bloods, ?GP Factsheet – please help distributeWorld MDS Awareness Day – 25
th
October
New MDS booklet
Call to ActionSlide18
Planned activities 2013-2014
Newsletter – Issue 5 Thank you to Editor Chris Dugmore Issue 5
– Sept 2013
Issue 6 - send in material please
Patient Forum Meetings 2014
Oxford, Cambridge, Essex, Sussex – regional meetings
London – September – annual & regional meetings
Cambridge – local meetings
Bournemouth, local meeting
Dublin – 25
th
Oct 2014Slide19
MDS UK Survey Update 2014
Monika JanosikProject Worker, MDS UKSlide20
Fundraising 2014
Thank you to:Marathon runners – Russell, Caitlin, Colin & SueCrowley Family – Golf DaySponsored swim - Victoria
Head-shave in Midlands
Windsor Walk with AAT
Waitrose Scheme London
Asda scheme starting
….many more event and individual donations…
THANK YOU ALLSlide21
Great fundraisers 2014Slide22
Windsor Walk 2014Slide23
Regional Groups
Established local groupsLondon - King’s College HospitalOxford - Gwyn & Claudia
Cambridge - Patient committee
Essex – Chris Dugmore
Sussex – Brighton – Sam, Lynn and David
Ireland – Sinead – daughter of patient
Kent
BournemouthSlide24
Importance of local groups
Opportunity to meet informallyExchange experiencesOrganise events locallyAssist one anotherEngage more with local clinical staffRaise awareness locallyPotential for fundraising
Experience of Claudia, John, Chris, Diana?
What are the issues? Benefits?Slide25
Regional groups - starting
York/Leeds – patient ledRequests for,
Surrey,
Midlands, Liverpool, Manchester
Cardiff/Bristol/Weston Super
Mare ?
…
but we need people to meet and greet
Support and guidelines availableSlide26
Special Thanks to our sponsors, donors & helpers
Celgene and NovartisFoster DenovoWaitrose and AsdaAll the generous individual donors and amazing fundraisers
Visit Donors Gallery page on website
We could not do it without you !Slide27
Website
www.mdspatientsupport.org.uk by
open-ecommerce.org
the
helping hand
Content:
Information material and articles
Events and campaigns
Fundraisers
Links to other relevant websitesSlide28
Website - Message Forum
Contact to othersExchange of experience and supportUsers all over the UKFurther source of information on:
Sub-types of MDS
Regional contacts
Pre and post transplant issues
Travel insurance feedbackSlide29
Get your awareness materialsSlide30
Thank you for attending –
and participatingSeveral regional meetings planned for rest of 2014:Check website – or call us
BEFORE YOU LEAVE:
Please hand in outside:
Evaluation form
Please pick up:
Leaflets and Factsheets for your local GP – haematologist - CNS
Thank you !