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29th September 2019

Nottingham Members’ Conference September 2019

Our September conference was held at Nottingham Racecourse with lovely views of the track and beyond. Seventy one people attended with 35% from the Nottingham area and others from further afield; the record being held by a Newquay patient who drove 295 miles to join us.

The patient experience was the main focus of the morning at our Nottingham conference. Three patients, two of them videoed, told their CLL stories. Their powerful testimonies brought alive for the audience the experience of a CLL diagnosis, its treatment and impact on lives.

First, we heard from Gill, followed by Val.

Our final story came from a trustee, Lewis, now 15 months on ibrutinib, who stressed the value of his partner’s support and insights – two heads better than one – and advised us not to hold back from asking healthcare professionals as many questions as we want.

A videoed presentation by trustee Olga Janssen followed on the findings of recent research into the CLL Patient Experience. Sources were: an in-depth study by the pharmaceutical company Janssen (no connection), which covered both haematologist and nurse perceptions as well as the patient experience; three electronic surveys of members and thirteen conference consultation exercises by CLL Support, all conducted in the last three years. This presentation ended with a request to help prioritise seven proposed actions in response to the research and to add any others.

CLL Support Chair, Marc Auckland, then gave a videoed update on CLL Support developments, followed by an invitation to the audience from trustee Michael O’Neill to assist in raising the profile of CLL Support in hospitals, CLL clinics and GP surgeries.

After lunch, Dr Christopher Fox gave the keynote presentation “CLL in 2019 and beyond”, which was both comprehensive and well-pitched for a lay audience. Increasingly, drugs are being used in combination and for long duration, raising the issue of how to pay for it. In summary, Chris stated that the future for CLL management will be very different.

Many thanks to Leukaemia Care and Lymphoma Action for attending the meeting with their information.