2021 UK CLL Forum Manifesto, by Dr Renata Walewska, UK CLL Forum Chair
Welcome to this, the first update of our activities since I became Chair of the UK CLL Forum.
As the new Chair, my aim is to continue the work of my predecessors and further expand the charity’s objectives:
“The advancement of education of the general public, in particular in the treatment of those suffering from CLL and related disorders.”
We will continue to organise biannual educational meetings for scientists and health care professionals and promoting patients’ education with close collaboration with CLL SA
“Development and provision of policy guidelines for such treatment. “
Our key achievements:
- During the COVID pandemic we have issued practical guides with regular updates for clinicians and clarified shielding for patients.
- We will publish an update to the national CLL guidelines in 2021
- We have published guidance on the management of cardiovascular complications with the use of Ibrutinib.
- We have been involved in the NICE appraisal process on behalf of clinicians for the approval of new drugs.
- We will continue working on projects with Real World Data in the use of new treatments.
“Promotion of communications and exchange of information between research groups and healthcare professionals.”
A very busy year has included:
- Dr J Riches and Dr I Ringshausen updated and re-structed the website. Dr T Eyre has launched a Twitter forum and Dr A Ramsay has been posting on our Facebook page.
- We have built up closer links with patients’ charities; CLL Support Association and Leukaemia Care.
- We have worked together updating guidance for patients with many of our executive members participating in educational webinars for patients.
- We have amended the membership structure for executive members with increased emphasis on time served as opposed to roles. This work was done by Dr A Pepper.
- Profs T Stankovic and J Strefford have been highlighting significant scientific papers of the month, and this has been well received.
- I have invited clinicians from N. Ireland (Dr McNicholl) and Scotland (Dr A McCaig) to have UK-wide representation in addition to the existing members from Wales (Dr N Parry-Jones).
- Prof C Fegan has prepared both patients’ and clinicians’ CLL COVID-19 surveys, we are hoping to present the data at the upcoming International Workshop on CLL.
- We have launched podcasts thanks to the generous help from Leukaemia Care by letting us use their platform and technical infrastructure. The content of the podcasts is ‘Desert Island Discs meets career guidance’ with some haematology thrown in for good measure. The working title of the podcast is, “Focus on haematology and its people”.
The first interviewee was Prof Peter Hillmen who talked about recent advances in CLL treatment, COVID’s impact on clinical trials, how to protect yourself from burning out, his path to haematology and football.
Thank you for the outstanding contributions from members during this most difficult period of 2020 has allowed us to advance the Forum significantly. My thanks to everyone involved and I look forward to the next year with anticipation.