For the last five years I've been a Consumer or Patient Representative on the Clinical Studies Group (CSG) overseeing the development and management of clinical trials in the UK across all blood cancers except lymphomas. The group is made up of clinicians, scientists, research nurses and statisticians as well as consumer reps and I've found it a very responsible but also very rewarding experience.
I became involved initially following the death of our younger son, Tim, with acute leukaemia. At that time,
My involvement has included a wide range of topics from putting forward and commenting on questions that need to be answered in clinical trials, contributing to trial design and issues around patient recruitment through to the preparation of trial information leaflets for patients and the dissemination of trial results. All the time I’ve sought to put forward and represent patient views and priorities. I am proud that we have a very large and productive portfolio of trials which has resulted in many improvements in treatments and care for patients.
My commitment has been to attend a minimum of three national meetings per year but I guess in reality, I've spent about 12 days per year attending meetings plus a limited amount of time reading through and commenting on trial applications.
The range and diversity of blood cancers means that there is a separate Lymphoma CSG. It's chaired by Professor John Radford from Manchester and has a broad portfolio of current trials and ambitious plans to improve survival and quality of life for lymphoma patients in the future.
As a result of other changes and developments, the CSG is currently looking for 2 or 3 new consumer representatives, ideally lymphoma patients or survivors or carers with close family members whose lives have been affected by lymphoma.
If you are interested and would like to find out more, please reply to this blog or email me at email@example.com
Thanks for reading this, best wishes to everyone and please get in touch, it's a great thing to be part of.