Patient and Family
Myeloma Infoday
Leeds
Saturday
1 March 2014
Hilton City Hotel
Leeds
www.myeloma.org.uk/infodays
#MyelomaInfodays
Dear Attendee
Welcome to our Leeds 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, small 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
www.myeloma.org.uk/infodays 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
Breakout Q&A discussion sessions (2pm – 3pm)
Afternoon breakout sessions offer an opportunity to ask further questions on any aspect of
myeloma including treatment and side-effects/complications.
Group A:
Patients with red dot on name badge
Group B:
Patients with no red dot
Group C:
Carer and family perspectives
(please note patients are kindly requested not to attend this session)
If you are a carer/family member/supporter and do not wish to attend Group C, please join
either Group A or Group B.
Please ask a member of Myeloma UK staff if you need assistance.
2 l Patient & Family Myeloma Infoday l Hilton City Hotel, Leeds l Saturday 1 March 2014
Programme for the day
Chair
Prof Gordon Cook, Professor of Haematology and Myeloma Studies
St James’s University Hospital, Leeds Teaching Hospitals NHS Trust
8.45am
Registration and refreshments
9.30am
Welcome and introductions
Eric Low OBE, Chief Executive, Myeloma UK and Prof Gordon Cook
9.50am
Initial treatment for myeloma
Dr Andrew Chantry, Senior Clinical Lecturer and Consultant Haematologist
Sheffield Myeloma Research Team, University of Sheffield Medical School
10.20am
Treatment for relapsed and/or refractory myeloma
Dr Roger Owen, Consultant Haematologist, Leeds General Infirmary
Leeds Teaching Hospitals NHS Foundation Trust
11.00am
Morning refreshments
11.30am
Peripheral neuropathy, pain and fatigue: complications of myeloma and
side-effects of treatment
Ellen Watters, Myeloma Information Nurse Specialist, Myeloma UK
12.00pm
Living well with myeloma
Caroline Overvoorde, Myeloma Clinical Nurse Specialist
St James’s University Hospital, Leeds Teaching Hospitals NHS Trust
12.30pm
Patient experience
Mr David Green
12.50pm
Lunch (served in the restaurant)
2.00pm
Breakout Q&A discussion sessions
A.
Group A (Magnum Room, 4th floor)
B.
Group B (Main room)
C.
Group C Carer and family perspectives (Thoresby Room, 4th floor)
3.00pm
Afternoon refreshments
3.30pm
Future strategies for myeloma: new insights and treatments in development
Prof Gordon Cook
4.15pm
Final comments
Eric Low and Prof Gordon Cook
4.30pm
Close
Patient & Family Myeloma Infoday l Hilton City Hotel, Leeds l Saturday 1 March 2014 l 3
Speaker profile
Prof Gordon Cook (Chair)
Professor of Haematology and Myeloma Studies
St James’s University Hospital, Leeds Teaching Hospitals
NHS Trust
Prof Cook is a Consultant Haematologist and Myeloma Lead in Yorkshire
based at Leeds Teaching Hospitals. He is currently Chair of the British
Society of Bone Marrow Transplantation Clinical Trials Committee, an
executive committee member of the UK Myeloma Forum, an executive
committee member of the NCRI Haematological Oncology sub group
and has been a member of the Myeloma UK Medical Advisory Board for
nine years. He was appointed Professor of Haematology and Myeloma
Studies in December 2011.
Future plans include a desire to become more active in advancing the
collaboration of haematologists interested in myeloma in the fields of
good clinical practice and clinical research. He is the Principal
Investigator of the current national myeloma trial, the NCRI Myeloma X
clinical trial. Prof Cook joined the Myeloma UK Board of Directors in
April 2008.
Eric Low OBE, Chief Executive
Myeloma UK
Eric has been involved in the field of myeloma for over 16 years.
Working as a volunteer in the United States for the International Myeloma
Foundation, he recognised the need and the benefit of providing
information and support to people affected by myeloma. Returning to
the UK, Eric identified the need for a similar organisation in the UK and as
a result he set up Myeloma UK in 1997.
Under Eric’s direction Myeloma UK has grown and developed and is
the only UK cancer organisation dealing exclusively with myeloma. Today,
Myeloma UK reaches over 12,000 people affected by myeloma and the
majority of healthcare professionals involved in their care.
Eric’s achievements have included establishing a national Myeloma Early
Phase Clinical Trial Network and a myeloma genetics and drug
development research programme. He has also ensured that myeloma
patients in the UK have been able to access novel treatments through
advocating solution-oriented approaches to the way drugs are made
available on the NHS.
Eric was awarded an OBE for services to charity as Chief Executive,
Myeloma UK in the Queen’s Birthday Honours 2012.
4 l Patient & Family Myeloma Infoday l Hilton City Hotel, Leeds l Saturday 1 March 2014
Speaker profile
Dr Andrew Chantry, Senior Clinical Lecturer and Consultant
Haematologist, Sheffield Myeloma Research Team,
University of Sheffield Medical School
Dr Chantry is an Honorary Consultant in Haematology, Sheffield Teaching
Hospitals NHS Foundation Trust. He specialises in myeloma and treats
myeloma patients at all stages of the disease.
He is also a Senior Clinical Lecturer in Haematology, Academic Dept
of Oncology, University of Sheffield and leads the Sheffield Myeloma
Research Team. His principal research interest is to develop drugs that
strengthen and repair bone and target residual disease.
Dr Roger Owen, Consultant Haematologist, Leeds General
Infirmary, Leeds Teaching Hospitals NHS Foundation Trust
Roger received his undergraduate training at The University of Wales
College of Medicine and graduated in 1988. He was appointed as a
consultant haematologist at Leeds Teaching Hospitals NHS Trust in 2001
and has joint appointment in clinical haematology and haematopathology.
His interests are the diagnosis, treatment and laboratory assessment
of response in myeloma patients, MGUS, plasmacytoma and
Waldenström’s macroglobulinaemia. He has a long standing interest in
minimal residual disease monitoring in plasma cell disorders.
Caroline Overvoorde, Myeloma Clinical Nurse Specialist, St James’s University
Hospital, Leeds Teaching Hospitals NHS Trust
Whilst studying towards a Physiology BSc in Leeds, Caroline worked in the community with the
District Nursing Team and also with adults and children with learning disabilities.
She started her nursing career at Castle Hill Hospital, Hull on the haematology ward. Following a
very happy year and a half she moved closer to home and gained more experience in the Intensive
Care Unit at York and then moved back to haematology on the Bone Marrow Unit and within the
Young Adult Cancer Unit in St James’s University Hospital. She started as a Specialist Myeloma
Nurse in September last year.
Ellen Watters, Myeloma Information Nurse Specialist
Myeloma UK
Ellen works for Myeloma UK as a Myeloma Information Nurse Specialist.
She has been with Myeloma UK for eleven years. Prior to joining
Myeloma UK, Ellen worked as a Staff Nurse in the Royal Infirmary of
Edinburgh. Ellen qualified as an RGN in 1996, gained her diploma in
cancer and palliative care in 2001 and has worked as a Staff Nurse in
oncology, orthopaedic theatre and respiratory medicine. Ellen enjoys
working on the Myeloma Infoline and finds it very rewarding being able
to spend as much time as is needed with each caller, whether it be
patients, carers, close family or friends.
Patient & Family Myeloma Infoday l Hilton City Hotel, Leeds l Saturday 1 March 2014 l 5
Local Support Groups
Doncaster
Haematology Support Group
Doncaster Royal Infirmary, Armthorpe Road, Doncaster
Time:
6pm – 7pm, last Wednesday of every month
Contact: Stacey Nutt, Macmillan Nurse Specialist
Tel:
01302 553 211
Email:
Stacey.nutt@ dbh.nhs.uk
Grimsby
Myeloma Support Group
Room 3, Scartho Village Community Centre, 26 Waltham Road, Scartho DN33 2LX
Time:
5pm, second Wednesday of every month
Contact: Janet Stennett
Tel:
01673 828 271
Email:
[email protected]
Hull and East Yorkshire
Myeloma Support Group
White Cottage, 66 Beverley Road, Dunswell, Hull HU6 0AJ
Time:
1.30pm – 3pm, the third Thursday of every other month
Contact: Anne and Tony Tordoff
Tel:
01482 858244
Mob:
07875 250339
Email:
[email protected]
Leeds
Myeloma Support Group
Robert Ogden Centre, St. James’s University Hospital,
Beckett Street, Leeds LS9 7TF
Time:
1.30pm, last Friday of every month
Contact: Rita Rumsey
Tel:
0113 252 0097
Email:
[email protected]
North Yorkshire
Myeloma Support Group
The Golden Lion Hotel (Front Lounge), 114 High Street, Northallerton DL7 8PP
Time:
6.30pm, the second Thursday of the month
Contact: Graham Lane
Tel:
01609 760191
Email:
[email protected]
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Local Support Groups
Teesside
Myeloma Support Group
Day Unit, Haematology Department, University Hospital, North Tees
Hardwick Road, Stockton-on-Tees TS19 8PE
Time:
6.30pm, first Tuesday, bi-monthly
Contact: Liz Dobson
Tel:
01642 562 505
York
Haematology Support Group
Huntington & District Working Mens Club, 1 North Moor Road, Huntington, York YO32 9QS
Time:
7pm, first Thursday of the month
Contact: Carol Miller
Tel:
01904 330705
Email:
[email protected]
York
Myeloma Support Group
Cancer Care Centre, The York Hospital, Wigginton Road, York YO31 8HE
Time:
1.30 – 3pm, first Wednesday of the month
Contact: Molly Ansell
Tel:
01347 822 555
Not a Support Group near you? Why not set up your own?
Contact Sue Perkins, Service Development Manager on 0131 557 3332
for further information.
Patient & Family Myeloma Infoday l Hilton City Hotel, Leeds l Saturday 1 March 2014 l 9
Your notes
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Your notes
Patient & Family Myeloma Infoday l Hilton City Hotel, Leeds l Saturday 1 March 2014 l 11
Call our Myeloma Infoline on 0800 980 3332
or 1800 937 773 from Ireland
www.myeloma.org.uk
Myeloma UK
Broughton House
31 Dunedin Street
Edinburgh EH7 4JG
Tel: 0131 557 3332
Email: [email protected]
www.myeloma.org.uk
Charity No. SC 026116
Myeloma Awareness Week 21 – 28 June