MDS Patient Forum

The Royal LancasterLondon 43rd October 2014

Welcome toMDS UK Patient Support

Group

Patient and Family Forum

Agenda10.30 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 LunchMeeting resumes 13.00

Agenda13.00 Diagnosis, Treatment and Research

UpdateDr Austin Kulasekararaj, Consultant

Haematologist, King’s College Hospital, LondonQuestions & Answers

14.45 MDS UK Campaigns and Access to

treatment, ActivitiesSurvey UpdateSophie Wintrich, MDS UKMonika Janosik, MDS UK

15.30 MDS UK Regional GroupsMembers involved in a local group

16.00 Close of day

MDS UK Patient Support GroupCommittee – Patient members

Rodney Taylor – ChairmanJohn Taylor – Deputy ChairmanFiona Murray – SecretaryJoanne Anderson – FundraisingChris Dugmore – Newsletter

EditorRussell Cook - MemberZlatko Sisic – HTA advisor

Other Committee members, Consultants, Advisors

Sophie 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 handEduardo G Silva and Mariano Marey – our wonderful website designers

Patrons for MDS UK

Lord Tariq AhmadHouse of Lords member

Prof Ghulam MuftiHead of Dept of Haematology - KCH

Instructions for the day

Come and go as you please

Fire exits/toilets

Be comfortable!

Ask questions

Exchange contact details

Items in your information pack

Evaluation form about todayFor feedback, suggestions, criticismsand improvements

Please hand in by end of today

25th October Awareness Day Poster, badges, fundraising leaflet

Other materials available on display – incl T-shirts

Introduction to next talk

Most MDS patients will suffer from anxiety

Shown in our survey Evident in patient calls Discussed in local groups

Patient Forum Discussion – Quality of Life Session

Janet HaydenHaematology Clinical Nurse

SpecialistsKing’s College Hospital, London

Agenda13.00 Diagnosis, Treatment and Research Update

Dr Austin Kulasekararaj, Consultant Haematologist, King’s College Hospital, LondonQuestions & Answers

14.45 MDS UK Campaigns and Access to treatment,

ActivitiesSurvey UpdateSophie Wintrich, MDS UKMonika Janosik, MDS UK

15.30 MDS UK Regional GroupsMembers involved in a local group

16.00 Close of day

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 Programmes

Health care reforms & CDF Value Based Pricing 2014 – Consultation

…??? Cancer Drug Fund - extended

Your local MP’s Do 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 2014

Activities 2011-2014

Cancer 52 Patient presentations at Celgene Nurse education days European MDS Patient Support Group

Meetings – MDS Alliance Tissue Banking & running of Tissue Banks MDS Trial group meetings

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, Macmillan

2014 Materials and plans

Factsheets - Fatigue, Nutrition, Clinical Trials

Travel, First Diagnosed, Bloods, ? GP Factsheet – please help distribute World MDS Awareness Day – 25th

October New MDS booklet Call to Action

Planned activities 2013-2014 Newsletter – Issue 5

Thank you to Editor Chris DugmoreIssue 5 – Sept 2013Issue 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 – 25th Oct 2014

MDS UK Survey Update 2014

Monika JanosikProject Worker, MDS UK

Fundraising 2014Thank you to:

Marathon runners – Russell, Caitlin, Colin & Sue Crowley Family – Golf Day Sponsored swim - Victoria Head-shave in Midlands Windsor Walk with AAT Waitrose Scheme London Asda scheme starting ….many more event and individual donations…

THANK YOU ALL

Great fundraisers 2014

Windsor Walk 2014

Regional GroupsEstablished local groups

London - King’s College Hospital

Oxford - Gwyn & Claudia Cambridge - Patient committee Essex – Chris Dugmore Sussex – Brighton – Sam, Lynn and David Ireland – Sinead – daughter of patient Kent Bournemouth

Importance of local groups Opportunity to meet informally Exchange experiences Organise events locally Assist one another Engage more with local clinical staff Raise awareness locally Potential for fundraising Experience of Claudia, John, Chris,

Diana? What are the issues? Benefits?

Regional groups - starting

York/Leeds – patient led

Requests for, Surrey, Midlands,

Liverpool, Manchester

Cardiff/Bristol/Weston Super Mare ?

…but we need people to meet and greet

Support and guidelines available

Special Thanks to our sponsors, donors &

helpers Celgene and Novartis Foster Denovo Waitrose and Asda All the generous individual donors

and amazing fundraisers Visit Donors Gallery page on website

We could not do it without you !

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 websites

Website - Message Forum

Contact to others Exchange of experience and support Users all over the UK

Further source of information on: Sub-types of MDS Regional contacts Pre and post transplant issues Travel insurance feedback

Get your awareness materials

Thank you for attending – and participating

Several 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 !