Nottingham Saturday 11 March 2017 PROGRAMME. #myelomainfodays

Transcription

1 2017 Nottingham Saturday 11 March 2017 PROGRAMME #myelomainfodays

2 Dear Attendee Welcome to our Nottingham Patient and Family Myeloma Infoday which is one of several held each year throughout the UK and Northern Ireland. Patient and Family Myeloma Infodays are about people affected by myeloma learning from experts in the field and meeting others in a similar situation. A typical Infoday includes various slide presentations, Q&A sessions, group breakouts, networking and discussion time. Please take some time to visit the Myeloma UK Information Table where you will find copies of all our publications. You can also order these, along with copies of the presenters slides by completing the enclosed order form and handing it to a Myeloma UK staff member. Information from this Infoday, and copies of the slides, will also be posted on our website following the day. We hope you find the day interesting and informative. Your feedback is vital for planning future events please complete the enclosed evaluation form at the end of the day. Our team is here to help throughout the day if you need anything, please ask. Kind regards Sue Perkins Service Development Manager Today s Myeloma UK staff team at the Nottingham Infoday includes: Hannah Bingham - Services Events Lead Alice Burton - Patient Information Officer Debbie Gardiner - Myeloma Information Specialist Kirsty Jamieson - Fundraising Officer (Major Gifts) Zoe Meldrum-Craig - Community Fundraiser Hollie Nichol - Services Events Coordinator Dr Simon Ridley - Director of Research Please ask a member of Myeloma UK staff if you require assistance 02 Patient and Family Myeloma Infoday

3 Programme Chair 8.30am 9.00am 10.00am 10.10am 10.30am 11.30am 12.00pm 12.30pm 1.30pm 2.15pm 3.15pm 3.30pm 3.50pm 4.00pm Dr Cathy Williams, Consultant Haematologist, Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Registration and refreshments Myeloma: an introduction for newly diagnosed patients (optional session) Dr David Allotey, Consultant Haematologist, Derby Teaching Hospitals NHS Foundation Trust Welcome from the Chair Dr Cathy Williams About Myeloma UK Dr Simon Ridley, Director of Research, Myeloma UK Treatment strategies for relapsing and refractory myeloma Dr Charlotte Kallmeyer, Consultant Haematologist, United Lincolnshire Hospitals NHS Foundation Trust Refreshments and networking Complications of myeloma and side-effects of treatment what you need to know Sarah Henshaw, Myeloma Clinical Nurse Specialist, Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Lunch New insights and future directions Dr Dean Smith, Consultant Haematologist, Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Breakout sessions: Group A: Living well with myeloma (Victory Room) Stuart Adams, Myeloma Clinical Nurse Specialist, Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Group B: Ask the expert: Q&A discussion (Main Room) Dr Cathy Williams, Dr David Allotey, Dr Dean Smith and Dr Charlotte Kallmeyer Group C: Carer and family perspectives (Marlborough Room) Debbie Gardiner, Myeloma Information Specialist, Myeloma UK and Sarah Henshaw, Myeloma Clinical Nurse Specialist, Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Refreshments and networking Patient experience Colin Ryan, Nottingham Final comments Close 03

4 Programme Afternoon breakout sessions ( pm) There will be three simultaneous breakout sessions in the afternoon. Attendees should select from one of the following: Group A: Living well with myeloma Victory Room This session is open to all attendees and will concentrate on living well with myeloma. It will cover how to stay as healthy as possible and with a good quality of life, despite the challenges myeloma brings. We will ask you to discuss some statements about living well with myeloma in small groups and decide if they are true or false. At the end of the session we ll talk through some of these statements in more detail as one large group. The session will be facilitated by Stuart Adams, Myeloma Clinical Nurse Specialist and Alice Burton, Patient Information Office, Myeloma UK. Group B: Ask the expert: Q&A discussion Main Room This session is open to all attendees and will offer the opportunity to ask further questions on any aspect of myeloma including treatment, side-effects and complications. The expert panel will include Dr Cathy Williams, Dr David Allotey, Dr Dean Smith and Dr Charlotte Kallmeyer. Group C: Carer and family perspectives Marlborough Room This session will be facilitated by Debbie Gardiner, Myeloma Information Specialist, Myeloma UK and Sarah Henshaw, Myeloma Clinical Nurse Specialist, Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust and will offer the opportunity for carers and family members to share experiences and to support each other. We request that patients do not attend this session. Please ask a member of Myeloma UK staff if you require assistance 04 Patient and Family Myeloma Infoday

5 Speaker profiles Name: Dr Cathy Williams Title: Consultant Haematologist Place of work: Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Dr Cathy Williams trained in haematology at University College Hospital, London and the Dana-Faber Cancer Center, Boston, USA. During this time she undertook research into stem cell transcriptional regulation and developed a clinical interest in myeloma. She then worked as a Consultant at The Christie Hospital in Manchester, specialising in myeloma, before moving to her current post at Nottingham. Dr Williams interests include transplant and novel therapeutic approaches in the treatment of myeloma through the development of, and role as, Chief and Co-investigator in a number of Phase I, II and III clinical trials. Name: Dr Charlotte Kallmeyer Title: Consultant in Clinical Haematology Place of work: United Lincolnshire Hospitals NHS Foundation Trust Dr Charlotte Kallmeyer undertook her specialist Haematology training in Nottingham. She then worked at St James Hospital in Leeds for four years as a Consultant with a special interest in myeloma and allogeneic stem cell transplantation. In 2015, she returned to the East Midlands to work as a Consultant at Lincoln County Hospital. Her interest in myeloma goes back to her time as a medical student, when she undertook a research project regarding circulating plasma cells in myeloma patients. She later continued her research interest in Nottingham with a project investigating anti-myeloma vaccines and was awarded an MD for this. Name: Dr David Allotey Title: Consultant Haematologist Place of work: Royal Derby Hospital Biography not available at time of print 05

6 Speaker profiles Name: Dr Dean Smith Title: Consultant Haematologist Place of work: Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Dr Dean Smith studied medicine at University College London and completed haematology training in Bristol. He then went on to study for a research degree in myeloma. The research focussed on how genetic variation within myeloma impacts upon sensitivity to DNA damage and myeloma therapy. He then moved to his current post at City Hospital, Nottingham in Dr Smith s interests include risk stratification and novel therapeutic approaches and he is actively involved in myeloma research through clinical trials and ongoing laboratory projects. Name: Sarah Henshaw Title: Myeloma Clinical Nurse Specialist Place of work: Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Sarah completed an Adult Nursing Diploma in 1997 at The University of Nottingham and then went on to graduate with a Bachelor s Degree in Health Care Studies in 2005, specialising in haemato-oncology. Sarah worked as a staff nurse for over four years in haematology at a local district general hospital which started to develop her interest in myeloma. In 2001 she moved to Nottingham University Hospital and worked as a staff nurse and clinical nurse educator before becoming a Myeloma Clinical Nurse Specialist in April Sarah s particular interests are in quality of life of myeloma patients and the progression of new treatments. Name: Stuart Adams Title: Clinical Nurse Specialist Place of work: Centre for Clinical Haematology, Nottingham University Hospitals NHS Foundation Trust Biography not available at time of print 6 Patient and Family Myeloma Infoday

7 Speaker profiles Name: Dr Simon Ridley Title: Director of Research Place of work: Myeloma UK Simon directs the research strategy at Myeloma UK. Working closely with Myeloma UK research partners and an independent Research Advisory Group comprising expert peer and patient input, he ensures that Myeloma UK addresses its long-term vision of finding a cure for myeloma, as well as current patient need. Simon has previously worked across the research charity, biotech and academic sectors, including at Alzheimer s Research UK and the University of Cambridge. He has experience of working on research strategy and funding, including national and international partnership programmes with academia, government funders and industry. 7

8 Support Groups in the East Midlands Myeloma Support Groups provide an informal and comfortable atmosphere in which members can share experiences and information. Some Support Groups are run by patients and family members, others by healthcare workers or professional group facilitators. See below for a list of groups in your area. Burton-on-Trent Myeloma Support Group Seminar Room by Reception A, Queen s Hospital, Belvedere Road, Burton-on-Trent DE13 0RB Meets: pm, second Friday of the month Contact: Geoff Foster T: E: fgeoffr@aol.com Derby Myeloma Support Group Education Centre, Level 3, Royal Derby Hospital, Uttoxeter New Road, Derby DE22 3NE Meets: pm, second Friday of every other month (check with Leaders) Contacts: Christine Skeet, Myeloma Clinical Nurse Specialist M: (Mon Wed) E: christine.morris3@nhs.net and Susan Robb, Myeloma Clinical Nurse Specialist M: (Wed Fri) E: susan.robb3@nhs.net Dudley Haematology Support Group The White House, 10 Ednam Road, Dudley DY1 1JX Meets: pm, second Wednesday every three months Contacts: Angela Watts, Senior Research Nurse T: ext 2513/2879 E: angela.watts@dgh.nhs.uk and Christine Protheroe,Clinical Nurse Specialist E: christine.protheroe@dgh.nhs.uk Hereford Myeloma Support Group Kindle Centre, Asda Supermarket, Belmont Road, Hereford HR2 7JE Meets: pm, third Thursday of every other month Contact: Philippa Hurlow, Haematology/Oncology Clinical Nurse Specialist T: ex: 5712 M: E: philippa.hurlow@wvt.nhs.uk Leicestershire and Rutland Myeloma Support Group Helen Webb House, 35 Westleigh Road, Leicester LE3 OHH Meets: noon, second Wednesday of every month Contact: Tony Farquharson T: E: tony.farquharson@btinternet.com or Helen Webb House T: Patient and Family Myeloma Infoday

9 Lincoln SMYLLE Haematology Support Group St Barnabas Hospice, Day Care Centre, Hawthorn Road, Lincoln LN2 4QX Meets: pm, last Thursday of every month Contact: Denise T: E: or visit Nottingham Myeloma Support Group Maggie s Centre, Nottingham City Hospital, Hucknall Road, Nottingham NG5 1PB Meets: pm, second Thursday of the month Contact: Sarah Henshaw, Myeloma Clinical Nurse Specialist T: ext E: sarah.henshaw@nuh.nhs.uk Peterborough Myeloma Support Group The Cresset, Rightwell, Bretton, Peterborough PE3 8DX Meets: pm, second Tuesday of every month (check with Leader) Contact: Sara Morgan, Myeloma UK T: E: sara.morgan@myeloma.org.uk Stoke on Trent Myeloma Support Group London Road Bowling Club, London Road, Newcastle-under-Lyme, Staffordshire ST5 1LZ Meets: Contact Leader for date/times of meetings Contact: Nicola Coleman, Clinical Nurse Specialist (8.30am pm Mon - Fri or leave message) T: E: nicola.coleman@uhns.nhs.uk Wolverhampton Myeloma Support Group Willenhall CHART Centre, Gomer Street, Willenhall WV13 2NS Meets: 6.30pm, last Thursday of every month Contact: Jackie Tanswell E: jacqueline.tanswell@nhs.net Worcestershire Myeloma Support Group Waitrose Worcester, 223 London Road, Worcester WR5 2JG Meets: pm, Tuesdays every two months Contact: Mike Davies T: E: daviesmike17@gmail.com If there isn t a Support Group in your local area, why not consider setting up your own? For more information, or for an informal chat, give me a call on Sara Morgan, Support Group Lead, Myeloma UK 9

10 Your Notes 10 Patient and Family Myeloma Infoday

11 Your Notes 11

12 For further information about myeloma and Myeloma UK visit or call the Myeloma Infoline on Myeloma UK 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG Myeloma Infoline: Charity No: SC #myelomainfodays