MDS Patient Forum

1. MDS Patient Forum The Royal Lancaster London 43rd October 2014

2. Welcome toMDS UK Patient Support GroupPatient and Family Forum

3. 10.30Welcome and Introduction to MDS UK Sophie Wintrich, Chief Executive/Patient Liaison, MDS UK 10.40Coping with Anxiety Anne Crook, Counsellor/Cognitive Behavioural Therapist The Christie, Manchester 11.15Patient 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 13.00 Agenda

4. 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 day

5. MDS UK Patient Support GroupCommittee – Patient members Rodney Taylor – Chairman John Taylor – Deputy Chairman Fiona Murray – Secretary Joanne Anderson – Fundraising Chris Dugmore – Newsletter Editor Russell Cook - Member ZlatkoSisic – HTA advisor

6. 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 GekeOng, 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 designers

7. Patrons for MDS UK • Lord Tariq Ahmad House of Lords member • Prof Ghulam Mufti Head of Dept of Haematology - KCH

8. Instructions for the day • Come and go as you please • Fire exits/toilets • Be comfortable! • Ask questions • Exchange contact details

9. Items in your information pack • Evaluation form about today For feedback, suggestions, criticisms and improvements  Please hand in by end of today • 25th October Awareness Day Poster, badges, fundraising leaflet Other materials available on display – incl T-shirts

10. Introduction to next talk • Most MDS patients will suffer from anxiety • Shown in our survey • Evident in patient calls • Discussed in local groups

11. Patient Forum Discussion – Quality of Life Session Janet Hayden Haematology Clinical Nurse Specialists King’s College Hospital, London

12. 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 day

13. 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

14. Activities around access to better care 2014 • 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

15. 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

16. 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

17. 2014 Materials and plans • Factsheets - Fatigue, Nutrition, Clinical TrialsTravel, First Diagnosed, Bloods, ? • GP Factsheet – please help distribute • World MDS Awareness Day – 25th October • New MDS booklet • Call to Action

18. 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 – 25th Oct 2014

19. MDS UK Survey Update 2014 Monika Janosik Project Worker, MDS UK

20. Fundraising 2014 Thank 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

21. Great fundraisers 2014

22. Windsor Walk 2014

23. Regional Groups Established 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

24. 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?

25. 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

26. 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 !

27. Website www.mdspatientsupport.org.ukby open-ecommerce.orgthe helping hand • Content: • Information material and articles • Events and campaigns • Fundraisers • Links to other relevant websites

28. 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

29. Get your awareness materials

30. 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 !