Our past Chairman, Professor Mark Baker, is the National Clinical Lead for the Cancer
Peer Review Programme and a Clinical Director at NICE (National Institute for Health
and Clinical Excellence). He was the Director of the Yorkshire Cancer Network from
1995-2006 and the Lead Clinician for Cancer in Leeds from 2005-2011.
Treasurer - Matthew Baker is a Solicitor and a Partner at Pinsent Masons LLP
specialising in Commercial Property Dispute Resolution. He has been involved with the
Friends for over 10 years since his father John Baker was treated on the ward in 1998.
Matthew’s Mother (Angela Knowles aka Miss February) and his Mother-in-Law (Lynda
Logan aka Miss July) are two of the original Calendar Girls.
Derek Norfolk, was a Consultant Clinical Haematologist at the LGI from 1986 to 2006.
From 2006 until retiring from clinical practice in 2011 he was Consultant in Haematology
and Transfusion Medicine at Leeds Teaching Hospitals (LTH) NHS Trust and NHS
Blood and Transplant. He continues to work as Associate Research and Development
Director for LTH. Dr. Norfolk has been a Trustee of the FLCLLM since 1986."
Bryon Roberts was appointed Consultant Haematologist to the Leeds General Infirmary
in 1970, the first such appointment in West Yorkshire. He introduced the newly
developed chemotherapy regimes in acute Leukaemia and lymphoma in both adults
and children. Dr Roberts was a founder member and Trustee of the Friends.
David Fox joined the Trustees in 2012 following his retirement from the NHS in 2011,
after 37 years service. Most of his career was spent in Leeds and from 1999 until 2011
he was the senior manager for Haematology, Oncology and Palliative Care services in
the Leeds hospitals .He played a key part in securing and managing the new facilities at
St James’s. He now undertakes a variety of voluntary work in the countryside.
Graeme Smith was appointed Consultant Haematologist at the LGI in 1993 and was
responsible for producing Regional Guidelines for the management of CML in
Yorkshire. He was latterly Clinical Director of Oncology and has been a Trustee since
1993.
Consultant Haematologist, Roger Owen has particular interest in the diagnosis,
treatment and disease monitoring in patients with Myeloma, MGUS, Waldenstrom’s
macroglobulinaemia and marginal zone lymphoma. Roger has been a Trustee since
2007.
Carol has been Hon. Sec. since 2005. She has worked with haematology patients since
1977 when she was Outpatients Sister at the LGI. She was appointed Chemotherapy
sister in 1988 and then Clinical Nurse Specialist IV therapy, Haematology from 1990 to
1997 when she retired. She returned as a part time research nurse until May 2011.
FRIENDS OF THE LEEDS CENTRE FOR
LEUKAEMIA, LYMPHOMA AND MYELOMA
Newsletter – January 2013
FROM CAROL BILBROUGH, HON. SECRETARY
Since our last newsletter several personnel changes have occurred. Sadly, due to
the death of the Right Honourable Earl of Harewood, we have lost our patron of
many years. This was followed by the sudden death of Alistair Thompson, a trustee
and ex chairman of the “Friends” for eleven years. Prof. Mark Baker relinquished his
role as chairman in October and was replaced by Mr. David Fox. David worked for
many years as a senior manager in the NHS, latterly as head of the Oncology service
in Leeds, so brings a wealth of experience to this role and we warmly welcome him.
We have continued to support patients with travelling expenses where necessary.
Wards 88 and 89 have benefited from the provision of two exercise machines and a
new water bath for thawing out stem cells prior to their transplantation into patients.
We have contributed to the first two years salary of a new “Red cell” clinical nurse
specialist and will be funding the provision of four televisions for the Day unit. Our
latest commitment has been to fund the Allinex website for bone marrow transplant
patients. Dr. Marie Gilleece gives more information about the site below.
Thank you to all our fund raisers and donors who make our continued support to
patients, the service and research possible Thank you also to Sainsbury’s Local
Express store in Moortown, who have adopted our charity for a year. They are
hoping to raise £5,000.00 to provide an isolation room bed in the Day unit.
FROM DR. MARIA GILLEECE,
DIRECTOR FOR BONE MARROW TRANSPLANT SERVICE
The new website-ALLINEX – provides information and direct contact with the Bone
Marrow Transplant Clinical Team at St. James’s
Leeds is a centre for bone marrow transplantation and performs over 100 transplants
annually. Many of these are allogeneic transplants, in which the source of the new
bone marrow is a family member or unrelated volunteer donor. This treatment is
particularly complex and makes many demands upon patients and their families.
messaging function are password protected. Activity will be tracked and users will be
invited to complete feed-back forms online.
As the research funding from Macmillan Cancer Support comes to an end, it is crucial
that we continue to develop and maintain the site. We are especially grateful to the
“Friends” that they have offered us this support which will secure the future of the
website. Our aspiration is that continued development will make this an outstanding
resource for all of our patients and their families both locally and further afield.
FROM DAVID FOX newly appointed CHAIRMAN
A three year research collaboration between the Applied informatics and Cancer
care, Psychosocial Oncology and Clinical Practice Research Group of the University
of Leeds and the Department of Haematology measured the existing availability and
relevance of information and support for patients who were about to undergo or
recently had allogeneic transplants. The results of this early phase of the research
highlighted a need for a centralised and readily accessible source of information.
As Carol Bilbrough mentions above, I joined the Trustees in 2012 and have now
agreed to become the Chairman as Mark Baker finds that his work will result in him
spending more time in London. I have known of the Trustees and their work since I
became the manager for Haematology, Oncology and Palliative care services in
1999. Prof Tony Child and latterly Graeme Smith have acted as the key link between
clinical services and the Trustees.
This finding underpinned the creation of a website, called www.Allinex.org. The
name reflects the capacity of the website to support the flow of information directly
between patients and their clinical team: allograft (all-) information (-in-) exchange (ex). Patients can access their clinical team by sending a private message about nonurgent issues and can expect to receive an answer within 48 hours. They can also
exchange information with each other through secure forum.
The achievements of the Friends in supporting the rapidly changing clinical service
has been remarkable and made a real difference to the service that is provided to
patients. Sometimes this has been assistance for an individual patient or by providing
new equipment or by supporting research or new aspects of service. The goal of the
clinical and management staff has always been to provide an exceptional service for
patients and their families, the Friends have through their support enabled the
facilities or the equipment to be at the leading edge. Current examples of this support
are mentioned by Carol and one very key link for patients and their clinical staff using
modern IT is outlined by Dr Maria Gilleece.
In addition, the website includes information about how a transplant is performed as
well as possible side effects. Practical guidance is available to help deal with a range
of needs, from physical, such as bone health, to personal well being and
relationships as well as financial concerns. All the information is available to be
printed off or to download as a series of leaflets and there are links with other
relevant and high quality websites.
The website was evaluated to assess the impact it had on the process of care and to
confirm that it was user friendly. Feedback from participants has been good or
excellent and suggestions received from this group have been used to make
improvements. Since November 2012, in the final phase of the study, the website
has been made freely available to the public, although the forum and clinical team
The Friends have been generously supported by a variety of donations and gifts over
the years and I hope that this will continue in 2013. The Trustees will seek to raise
the profile of the Friends over the coming years to ensure that the value for patients,
of the funds is more widely known.
I shall seek to continue the excellent work of the previous Chairs and I look forward
to meeting many of you at events. Please do contact any one of us if you know of
anyone willing to support the Friends.
Enquiries about the FLCLLM to carol.bilbrough@ntlworld.com Tel: 0113 2943303