CLL Support Association Conference
18 May 2019:
Village Hotel Bournemouth,
Wessex Fields, Deansleigh Road, Bournemouth, BH7 7DZ
10.00 a.m. Arrival, refreshments, meet table companions
10.30 a.m. Welcome and Introduction by a CLLSA trustee Olga Janssen
10.40 a.m. CLL Stories. Matt Gibson
Three patients and a partner tell their stories. Norah Grant
Every experience is different. Kevin and Sue Powell
11.15 a.m. CLL, an Introduction Ram Jayaprakash
Ram Jayaprakash is a consultant haematologist at Poole
with a particular interest in CLL , including the FLAIR trial.
12.00 noon Epigenetic Research in CLL Lara Makewita
Lara Makewita is a PhD student at Southampton University.
Her talk will be looking into CLL disease biology.
12.30 p.m. Lunch
1.30 p.m. CLL Support Association News, given by a trustee Brian Gardom
Achievements, developments, fundraising and volunteers.
1.45 p.m. Facilitated Small Group Discussions
Who’s who at your table; getting answers to your questions
from table companions and sharing tips for coping with CLL.
2.30 p.m. Tea
2.45 p.m. CLL Effects on the Immune System – a Double-edged Sword
Haematology consultant Helen McCarthy runs a dedicated
CLL clinic at Bournemouth and leads the clinical research team
there with a large trials portfolio.
3.15 p.m. CLL Treatment: the Old, the New and the Available Renata Walewska
Renata Walewska, haematology consultant at Bournemouth,
is an active member of the UK CLL Forum. She contributed to
the recently updated national British Society for Haematology
(BSH) clinical guidelines for CLL. She is a clinical advisor to the
Evidence Review Group for the National Institute for Health
and Care Excellence (NICE) appraisals.
3.55 p.m. Conference closed by a CLLSA trustee Olga Janssen
4.00 p.m. Depart
One hundred and five people attended this Conference, held on a Saturday to facilitate attendance by those in full-time work, often our younger members. We launched our under 60’s club, with membership now in excess of 20 people. Three of these told Conference their CLL stories.
Many thanks to the following organisations for their support at the conference:
Leukaemia Care, Lymphoma Action, Wessex Cancer Trust, Bournemouth Leukaemia Fund, Bournemouth After Cancer Survivorship Fund
Matt Gibson, a deputy head teacher in his 40s, told us about his successful FCR treatment under consultant George Follows at the Addenbrooke Hospital, Cambridge.
He was followed by Canadian actor Norah Grant, in her 50’s, coordinator of the Under 60’s club, now on active monitoring, but whose swollen lymph nodes and spleen mean that she anticipates treatment before long under consultant Piers Patten at Kings College Hospital, London.
A double act by an older couple, Kevin and Sue Powell from Warwickshire, illustrated well the power of a strong partnership for coping with the impact of living with CLL and its treatment, for Kevin the two drugs, Venetoclax and Rituximab.
Having set our focus on the experience and interests of the patient and care partner through these opening CLL stories, our programme then moved onto presentations by two expert speakers. Ram Jayaprakash, CLL consultant at Poole, gave an introduction to CLL, what it is and how it behaves.
Lara Makewita, PhD student at Southampton University gave a graphic account of the biology of CLL, with use of PowerPoint animations.
Our afternoon programme started with an update by trustee, Brian Gardom, on the CLL Support Association’s recent achievements and current projects. This included an invitation to become a profile-raising Champion for the Association, to improve awareness of our services in CLL clinics and GP surgeries.
Google search for CLLSA returns a very good hit rate rather than CLL as Brian mentioned.
Also the original CLLSA site was created over 10 years ago and was very difficult to maintain. This site was replaced in 2015, a project driven by Nick York who was a trustee at the time and a volunteer, by a modern responsive site to simplify content management and with a database to manage membership and meetings etc.
Thirteen facilitated, round-table discussions followed, sharing patients’, care partners’ and experts’ experience and knowledge to answer one another’s questions on CLL and tips for coping. Questions that groups were unable to answer on the day were taken away and answers have been given in the full Conference Report, accessible on this website. The tips volunteered by discussion groups for sharing have been presented thematically in the full Conference Report.
Two expert presentations by Bournemouth CLL consultants concluded the programme.
Helen McCarthy gave an account of how CLL can effect the immune system with telling photographs of anonymised case studies showing the impact on the body.
Renata Walewska’s presentation on “CLL Treatment: the Old, the New and the Available” was well pitched, through clear slides and the use of a CLL soft toy prop, so as to be accessible to the interested, lay audience.
Videos and slides of presentations will be available shortly.
(Compiled by Olga Janssen)