Patient and Family Myeloma Infoday

Transcription

1 Patient and Family Myeloma Infoday Cardiff Saturday 9 November 2013 Cardiff Village Hotel #mukinfodays

2 Dear Attendee Welcome to our Cardiff Patient and Family Myeloma Infoday. This Infoday is one of several held each year throughout the UK and 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, small group breakouts, networking and discussion time. You will find copies of all Myeloma UK publications on the Information Table. You can also order our publications by completing the enclosed order form and handing it to a Myeloma UK member of staff. You can also request copies of the presenters slides. If you would like to do this, please complete the enclosed form and either hand it in to the Information Table or post it to the address below. Information from this Infoday will be posted on our website 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. 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 Chief Executive 2 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013

3 Programme for the day Chair 8.30am 9.30am 9.45am 10.15am 10.45am 11.15am 11.45am 12.15pm 12.45pm 2.00pm Dr Helen Jackson, Consultant Haematologist, Royal Gwent Hospital Registration and refreshments Welcome and introductions Ben McKendrick, Communications and External Affairs Director, Myeloma UK and Dr Helen Jackson Initial treatment for myeloma Dr Hamdi Sati, Consultant Haematologist, Singleton Hospital, Swansea Treatment for relapsed and/or refractory myeloma Dr Jenny Bird, Consultant Haematologist, University Hospital Bristol Morning refreshments Management of complications of myeloma and side-effects of treatment Tracey Gunter, Macmillan Haematology Clinical Nurse Specialist, Royal Gwent Hospital Living well with myeloma Charlotte Bloodworth, Myeloma and Lymphoma Specialist Nurse, Cardiff University Hospital Patient experience Andy Roberts Lunch (served in the restaurant) Breakout discussion sessions: A. Newly diagnosed myeloma and initial treatment (Inspiration Room 1) Dr Jenny Bird and Dr Hamdi Sati B. Myeloma after first treatment (Main Room) Dr Helen Jackson and Tracey Gunter C. Carer and family perspectives (Motivation Room) Myeloma UK and Charlotte Bloodworth 3.00pm 3.30pm 4.15pm 4.30pm Afternoon refreshments Future strategies for myeloma: new insights and treatments in development Dr Helen Jackson Final comments Dr Helen Jackson and Ben McKendrick Close Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013 l 3

4 Speaker profile Dr Helen Jackson, Consultant Haematologist, Royal Gwent Hospital Dr Jackson trained at Manchester University Medical School. After pre-registration house jobs at Manchester Royal Infirmary, Dr Jackson completed general medical training in Leicester, followed by specialist training in haematology in Cardiff. For the past thirteen years, Dr Jackson has worked as a Consultant Haematologist at the Royal Gwent Hospital. Within the South Wales Cancer Network Dr Jackson has an interest in myeloma and clinical studies, and is a member of the UK Myeloma Forum. Dr Hamdi Sati, Consultant Haematology, Singleton Hospital, ABM University Health Board, Swansea Dr Sati graduated in medicine at Al-Arab Medical University, Benghazi, Libya in 1987 and completed his training in internal medicine in Between May 1994 and June 1997, he worked as a haematology clinical research fellow at the department of haematology at the Royal Hallamshire Hospital, where he obtained his MD degree at the University of Sheffield. His thesis was a structured research project looking into the expression of TNF-a, IL-1b and IL-6 in myeloma patients. This was a joint research project between the University of Sheffield and the Hammersmith Hospital, London supported by the Leukaemia Research Fund. From July 1997 February 2004, he has consolidated his clinical training in haematology at Aberdeen Royal Infirmary where he completed his specialty clinical training. During this post Dr Sati also continued his research interests in myeloma. In 2002, his research group, investigated the direct anti-tumour effects of pamidronate and zoledronate in myeloma and were the first group to demonstrate direct anti-tumour effects of these agents on authentic myeloma cells from bone marrows of myeloma patients. From October 2004 to date he works as a consultant haematologist at Singleton Hospital, actively involved in national and international clinical trials of myeloma. 4 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013ber 2013

5 Speaker profile Dr Jenny Bird, Consultant Haematologist, University Hospital Bristol Jenny qualified from Westminster Medical School in 1983 and spent several years in London undertaking a general medical rotation. She then began training in haematology at The Royal Marsden Hospital and later on at University College Hospital, London. She completed a research degree in myeloma at Charing Cross Hospital in Jenny was appointed as a Consultant Haematologist in Bristol in 2001 having previously spent time as a consultant at the Hospital of the University of Pennsylvania, Philadelphia. Her major clinical interests are in myeloma and other plasma cell disorders and in high-dose therapy and stem cell transplantation for haematological malignancies. She has been Clinical Director for haematology at Bristol Haematology and Oncology Centre since March Recently she has been very involved in the design and planning for the transfer of the BMT Unit to a new and purpose built combined haematology and BMT unit in BHOC. She has a continuing interest in myeloma and is a longstanding member and Chair Elect of the UK Myeloma Forum. In this role she has also been first author of two major national guidelines covering the diagnosis and management of myeloma patients. She has also contributed regularly to NICE appraisals of myeloma drugs, is a member of the NCRI myeloma group and is a member of the SW Cancer Drug Fund panel. Tracey Gunter, Macmillan Haematology Clinical Nurse Specialist, Royal Gwent Hospital Tracey joined the NHS in 1988 as a nursing student. Shortly after qualifying she joined the Royal Gwent Hospital where she worked on several medical wards over the early part of her career. She developed an interest in haematology nursing in 1995 and in 1997 she supported the development of the first haematology ward (B6N) at Royal Gwent Hospital, where she worked for six years as staff nurse before being promoted to deputy sister. In 2003 Tracey joined the medical day case unit as Sister, where she has worked to develop and support the growth of day case chemotherapy and supportive therapies for patients affected by haematological and oncological malignancies. In 2011, Tracey became the Haematology CNS supporting patients and staff in the delivery of evidenced based care. She has recently completed her degree in clinical practice (BSc Hons) and is currently studying for a Masters degree. Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013 l 5

6 Speaker profile Charlotte Bloodworth, Myeloma and Lymphoma Specialist Nurse, Cardiff University Hospital 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. Four and a half years ago she took over the role of Myeloma and Lymphoma Specialist Nurse at Cardiff University Hospital. Ben McKendrick, Communications and External Affairs Director, Myeloma UK Ben has recently joined Myeloma UK as the Communications and External Affairs Director having worked for the British Heart Foundation for nine years on policy and public affairs. 6 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013

7 Local Support Groups 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: mgtm@sky.com Contact: Hilary and Bryan Emery Tel: bryhil45@talktalk.net 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: Jenny Thomas Tel: jennyandmartint@yahoo.co.uk Hereford Marches Myeloma Support Group Kindle Centre, Asda Supermarket, Belmont Road, Hereford HR2 7JE Time: 2 4pm, third Thursday of every other month Contact: Jane Rayer-Gulyas, Haematology/Oncology CNS Hereford Tel: Ext Jane.rayer-gulyas@wvt.nhs.uk Not a Support Group near you? Why not set up your own? Contact Rebecca Caulfield, Patient to Patient Programmes on for further information. Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013 l 7

8 Your notes 8 l Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013

9 Your notes Patient & Family Myeloma Infoday l Cardiff Village Hotel l Saturday 9 November 2013 l 9

10 Call our Myeloma Infoline on or from Ireland Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JG Tel: Charity No. SC Myeloma Awareness Week June