UK #charity dedicated to education & support for Chronic Lymphocytic Leukaemia - the most common #leukaemia in adults. #cancer #haematology #bloodcancer #CLL
UK charity
Joined January 2013
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Patient and public involvement and engagement (PPIE) was embedded in IMPROVE from the very beginning when seeking funding, through to sharing the results of the trial. It is hoped the role of the IMPROVE Patient Advisory Group will serve as an outstanding example to others.
In celebrating these contributions, we hope to inspire a culture where patient partnership is fundamental to high-quality research - just as Lelia believed it should be.
Many congratulations to all involved with the IMPROVE trial 👏👏👏 improve.octru.ox.ac.uk/welco…
CLLSA retweeted
Dr Nicolas Martinez-Calle, Consultant Haematologist at Nottingham City Hospital, will be raising awareness of CLL Support at the Nottingham Half Marathon at the end of September. If you're in the area, please do cheer him on. cllsupport.org.uk
Following our post 2 days ago, this image shows five more themes from partners, friends and family members who shared what they would say to someone supporting a person newly diagnosed with CLL/SLL
Across the comments in our recent patient survey, people repeatedly told us how important good information, specialist knowledge and connection with others living with CLL/SLL can be.
At the same time, we heard just how much people value having somewhere to turn.
We asked partners, friends and family members of people living with CLL/SLL:
“What one piece of advice would you give to someone supporting a person who has just been diagnosed?”
The answers were honest, practical and reassuring. The image shows five themes that came through.
One of the clearest messages from comments in our recent patient survey was that living with CLL/
SLL can have a profound impact that isn’t always visible to other people.
These experiences remind us that CLL/SLL is different for everyone “there’s no patient like me”
📣 Great news - CLL Support is now PIF TICK re-certified
The PIF TICK is the only independently assessed trust mark for health information
Holding the PIF TICK means our health information continues to be:
Evidence-based
Up-to-date
Easy to use and understand
👏👏
Dr Nicolas Martinez-Calle, Consultant Haematologist at Nottingham City Hospital, will be raising awareness of CLL Support at the Nottingham Half Marathon at the end of September. If you're in the area, please do cheer him on. cllsupport.org.uk
This video highlights the importance of understanding individual perspectives, priorities, and treatment goals to help support more personalised care and meaningful conversations between patients navigating CLL or SLL and their healthcare teams.
youtu.be/V0lLtwUb580
World CLL Day is part of Blood Cancer Awareness Month, and throughout September we will be giving radio interviews and posting videos. You can watch the first short video trailer here:
youtu.be/gqcWPIWLUhI
#worldcllday
#BloodCancerAwarenessMonth
Mission Impossible. Can we cure chronic lymphocytic leukaemia.
Professor David Allsup's inaugural lecture is now available on our YouTube channel.
With thanks to University of Hull
youtu.be/X_OjfZS7rYg
Two surveys are now open:
🩺 One for people living with CLL/SLL in the UK
opinions.research-interactiv…
❤️ One for their partners, family, and friends
opinions.research-interactiv…
Your experiences will help shape future support.
#yourvoicematters
#patientexperience
@UkCllforum
The recordings from our recent Leeds Conference are now available to watch on our YouTube channel.
youtube.com/playlist?list=PL…
Opportunity to live your inner #strictly 🕺💃
Email [email protected] for more information, or to take part.
#latindanceclass
#cll #fatigue #research
The treatment is available for restricted use on the NHS via the NHS Scotland Patient Access Scheme (PAS)
Further information is available via the SMC website: scottishmedicines.org.uk/med…
#CLLtreatment
#Scotland 🏴