"The CLLSA has been approached by Lymphoma Association to take part in a discussion with
Triducive, a healthcare management consultancy, that has been appointed by Janssen, a
pharmaceutical company. They are in the process of understanding and developing a
patient pathway for chronic lymphocytic leukaemia (CLL) and mantle-cell lymphoma (MCL)
which they are hoping to validate with expert healthcare professionals during November
and December.
As part of the process, Triductive is keen to understand the experience of CLL and MCL
patients, and wish to explore the impact that treatment and care settings have on
patients and carers. The discussion is not about treatments but will be focused on the
pathway of care. They wish to discuss this from a wide range of physical, psychological
and social perspectives, to uncover how 'perception and reality' align so that more
informed decisions about the care pathway can be made for both CLL and MCL patients in
the future.
They wish to identify and invite appropriate patients to a meeting to form a small focus
group. The meeting will be relatively informal and encourage patients to talk about their
experiences as much as they feel comfortable. We envisage this taking 1.5 to 2 hours
over coffee - one session for CLL and another session for MCL. A staff member will
facilitate the conversations and capture the feedback anonymously.
The participants should:
-be comfortable to talk about their experience with others
-have lived with the condition for some time and have had one or more relapses.
We envisage inviting four CLL patients plus carers for the morning and four MCL patients
plus carers for the afternoon session. The proposed date is 12 December 2013 and
location would be probably be London. All meeting feedback will be anonymised.
We propose to reimburse participants for their time plus any reasonable travel costs
(standard class only).
If as a CLL patient you meet the criteria and are interested in taking part please email
arthur.graley@cllsupport.org.uk as quickly as possible."
