CLL Support Association
23rd March 2018,
The Studio Venue, Riverside West,
Whitehall Road, Leeds, LS1 4AW
The keynote speaker at this Conference was Professor Peter Hillmen, who chairs the National Cancer Research Institute (NCRI) CLL subgroup, responsible for the development of UK CLL clinical trials. Peter Hillmen began by giving a very clear explanation of CLL and its treatment using diagrams drawn on a tablet and electronically projected onto a large screen. He explained what is normal: the different components of blood, how they are made and their lifecycle; the role of the immune system and how it operates. He then demonstrated what happens in cases of CLL, when things go wrong. He outlined the latest CLL treatments available and how they work. Often drugs are used in combination. New drugs are resulting in a paradigm shift in treatment options. He is optimistic that we will in future have better treatments than chemotherapy and even that we will in time be able to cure frontline patients.
A second presentation, using slides, by the Leeds clinical trials team, led by Professor Hillmen, and introduced by senior trials nurse, David Buchanan, focused on the stages in clinical trials, which have in the past taken 10 years to complete. The UK is now leading a faster process of implementation. Tom Jones spoke about his experience as a patient on a clinical trial under Professor Hillmen, which has resulted in his CLL now being in remission.
There was ample opportunity for participation by attendees at the Conference, both by asking questions of Professor Hillmen and by participating in two consultation exercises organized by the CLL Support Association’s trustees. Discussions centred in the morning on the impact of a CLL diagnosis and the experience of “watch and wait”, and in the afternoon on determining the importance of various aspects of CLL care to patients and carers and how this compares with their actual experience of care. A detailed post-conference analysis of feedback from these discussions has been made and will inform the CLL Support Association’s plans for the improvement of information to members and campaigns for better care.
The Conference was introduced by David Innes, Chair of CLLSA , who outlined current initiatives being undertaken by the Association to raise awareness of CLL and promote improvements to CLL care.
Two patients, who are currently undergoing treatment, Roger Huxley and Dennis Murphy, gave moving and humorous accounts of their experience.
The Conference finished with a short presentation on ideas for launching local CLL support groups, given by trustee Olga Janssen.
There were 73 people in attendance at the Conference, including three representatives from CLLSA’s sister charities Bloodwise and LeukaemiaCare. The Conference was held on the top floor of Studio venues with spectacular views over the river Aire, the Liverpool Leeds canal, the railway and distant hills.
Slides of the presentations can be found at the bottom of the page
Videos of the presentations from the conference will be added to the website as soon as they are available