Patient and Family. #MyelomaInfodays

Transcription

1 Patient and Family Myeloma Infoday Cardiff Saturday 20 June 2015 Cardiff Village Hotel #MyelomaInfodays

2 Dear Attendee Welcome to our Cardiff 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 this information will be helpful and you find the day to be worthwhile, interesting and informative. Your feedback is vital for the planning of future events and we would be most grateful if you could complete the enclosed evaluation form at the end of the day. If there is anything you need help with, please don t hesitate to ask one of our team we are at your complete disposal throughout the day. Kind regards Eric Low OBE Chief Executive Today s Myeloma UK staff team includes: Hannah Bingham - Services Events Co-ordinator Zoe Meldrum-Craig - Community Fundraiser Kate Morgan - Senior Policy Officer Sara Morgan - Support Group and Myeloma Matters Lead Sue Perkins - Service Development Manager Please ask a member of Myeloma UK staff if you require assistance 2 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015

3 Programme for the day Chair 8.45am 9.30am 9.50am 10.30am 11.15am 11.45am 12.20pm 1.00pm 2.15pm Sue Perkins, Service Development Manager, Myeloma UK Registration and refreshments Welcome and introductions Sara Morgan, Support Group and Myeloma Matters Lead and Sue Perkins, Service Development Manager, Myeloma UK Initial treatment for myeloma Dr Alastair Whiteway, Consultant Haematologist, North Bristol NHS Trust Treatment for relapsed and/or refractory myeloma Dr Lisa Robinson, Consultant Haematologist, Hereford County Hospital Wye Valley NHS Trust Morning refreshments Myeloma kidney disease, pain and fatigue: complications of myeloma and side-effects of treatment Charlotte Bloodworth, Myeloma and Lymphoma Specialist Nurse University Hospital of Wales, Cardiff Future strategies for myeloma: new insights and treatments in development Dr Keith Wilson, Senior Lecturer and Honorary Consultant Haematologist University Hospital of Wales, Cardiff Lunch (served in the restaurant) Breakout sessions: Group A: Ask the expert: Q&A discussion (Main Room) Group B: Carer and family perspectives (Inspiration 1 Room) 3.15pm 3.30pm 3.55pm 4.00pm Afternoon refreshments Our unwelcome guest Cheryl James, Gwent Final comments Sue Perkins Close Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015 l 3

4 Afternoon breakout sessions ( pm) After lunch we will be running two simultaneous breakout sessions. Attendees should select from one of the following: Group A: 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 Keith Wilson and Charlotte Bloodworth. Group B: Carer and family perspectives Inspiration 1 Room This session will be facilitated by Myeloma UK and offers 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 4 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015

5 Speaker profile Sue Perkins, Service Development Manager, Myeloma UK After graduating from Nottingham University Sue worked for the NHS for 12 years in London as a commissioning manager, initially monitoring GP practice performance and then leading on service improvement for long term conditions. She moved to Edinburgh in 2011 and started work with Myeloma UK as Service Development Manager in December of that year, welcoming the opportunity this role provides to have more direct contact with patients, family members and carers. Sue completed a Masters in Healthcare Commissioning with Birmingham University in 2013, writing her dissertation on the extent of shared decision-making available for myeloma patients on bisphosphonate treatment. Sue s study also increased her interest in healthcare policy, especially the process of health technology assessment. In her current role at Myeloma UK Sue oversees the team which provide patient and family services, including the Infoline, Infodays, Discussion Forum, and patient information. Dr Alastair Whiteway, Consultant Haematologist, North Bristol NHS Trust Dr Whiteway trained in medicine at the Royal Free Hospital School of Medicine, University of London. Mutations in the Factor VIII gene in Haemophilia A were identified at the Royal Free Hospital and Dr Whiteway s interest in blood disorders grew with a research project in both red blood cell structure and malaria. Dr Whiteway then trained in Bristol (where an interest in myeloma began from caring for patients with kidney failure) and the Royal Gwent Hospital and back to North and West London where he did research on immunotherapy for leukaemia. He became a Consultant in Bristol where he is currently Lead Clinician for the Haematology Laboratory Diagnostic Service and Trust Cancer Lead Clinician. He works in a team caring for people with myeloma. His team tries to offer a holistic approach, including improving care through clinical trials some of which he has been a principle investigator for. Dr Lisa Robinson, Consultant Haematologist, Hereford County Hospital Wye Valley NHS Trust Biography not available at time of print. Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015 l 5

6 Speaker profile Charlotte Bloodworth, Myeloma and Lymphoma Specialist Nurse University Hospital of Wales, Cardiff Charlotte qualified from Nottingham University in 1995 with a degree in nursing and later a Masters in Advanced Nursing Practice. She worked as a staff nurse on a medical elderly ward, stroke rehabilitation and as a community nurse before moving to Cardiff in In 2003, she joined the haematology ward and gained experience rotating between general haematology, the transplant unit and the day case unit. Dr Keith Wilson, Senior Lecturer and Honorary Consultant Haematologist University Hospital of Wales, Cardiff Dr Wilson graduated from the University of the West Indies, Mona, Jamaica. His early postgraduate training was undertaken in his native Trinidad and Tobago and his specialist training was in London at St George s, The Royal Marsden and St Helier Hospitals. He moved to Cardiff in 1999 to take up the post of Senior Clinical Lecturer in Haematology at the then University of Wales College of Medicine and Director of the Blood and Marrow Transplant Programme at the University Hospital of Wales. Until 2007 he was also the Medical Director of the Welsh Bone Marrow Donor Registry at the Welsh Blood Service. Dr Wilson maintains an interest in Transfusion Medicine and continues to serve on national committees. Other research interests include the role of immunotherapy and late effects in transplantation. 6 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015

7 Local Support Groups Wales Cardiff: South Wales Myeloma Support Group Canolfan Beulah Church Community Centre, Beulah Road, Cardiff CF14 6LX. Time: pm, second Thursday of every other month Contact: Sheila Davies Tel: [email protected] Contact: Enid Lewis Tel: [email protected] England Barnstaple: Devon Myeloma Support Group Henry Williamson room, second floor, Barnstaple Library EX31 1EL Time: pm, third Thursday of every other month Contact: Cathie Peters, Clinical Nurse Specialist Tel: [email protected] Bath: Myeloma Support Group Oasis Centre Boardroom, RUH Bath, Combe Park Bath BA1 3NG Time: 6 8pm, on Wednesday or Thursday every other month Contact: Denis Griffin Tel: [email protected] Bristol: Myeloma Support Group Hulbert Room, UHCT Community Centre, Eden Grove Methodist Church, Horfield, Bristol BS7 0PQ Time: 7 9pm, third Tuesday of every other month Contact: Margaret and Stan Morrissey Tel: [email protected] Contact: Hilary and Bryan Emery Tel: [email protected] Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015 l 7

8 Local Support Groups Cornwall: Myeloma Support Group Seminar Room, Princess Alexandra Wing (Maternity Unit) Royal Cornwall Hospital, Treliske, Truro, Cornwall TR1 3LJ Time: pm, Tuesday, every other month Contact: Andy Wood Tel: Devon and Exeter: Haematology Support Group Seminar Room, Haematology Centre, Royal Devon & Exeter Hospital (Wondford) Barrack Road, Exeter EX2 5DW Time: pm, first Thursday of every month Contact: Rachel Stewart Tel: Dorset: Myeloma Support Group The Conference Room, The Barrington Centre, Penny s Walk, Ferndown BH22 9TH Time: pm, last Friday every other month Contact: Marion Summers [email protected] Gloucestershire: Myeloma Support Group The Maggie s Centre, The Lodge, College Baths Road, Cheltenham GL53 7QB Time: 1pm, every second Monday each month Contact: Joanna Stokes, Clinical Nurse Specialist Haematology Tel: [email protected] Hereford: Marches Myeloma Support Group Kindle Centre, Asda Supermarket, Belmont Road, Hereford HR2 7JE Time: 2 4pm, third Thursday of every other month Contact: Philippa Hurlow, Haematology/Oncology Clinical Nurse Specialist Tel: ex: [email protected] 8 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015

9 Your notes Plymouth: Myeloma Support Group Derriford Leisure Centre, Derriford Hospital, Plymouth PL6 8DH Time: 2 3pm, last Friday of every month Contact: Sue Hurley Tel: [email protected] Contact: Lindsey Stewart Tel: Contact: Caroline Allen Tel: Contact: Colleen Cann Tel: [email protected] Salisbury: Haematology Support Group Salisbury Methodist Church, St. Edmund s Church Street, Salisbury, Wiltshire SP1 1EF Time: 6pm, first Thursday of the month Contact: Rowena Ingram Tel: or Not a Support Group near you? Why not set up your own? Contact Sara Morgan, Support Group Lead, Myeloma UK on for further information. Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 20 June 2015 l 9