Have your say by taking part in a survey to aid us improve access to appropriate treatments and services.

Dear members

This anonymous patient survey lead by Leukaemia CARE is to aid understanding of the challenges of people affected by a blood cancer and help us to provide the patient voice to improve access to appropriate treatments..

Have your say.

Dr Anna Schuh takes over Chairmanship of the UK CLL Forum

Dr George Follows handed over the Chairmanship of the UK CLL Forum to his colleague from Oxford, Dr Anna Schuh at forums recent meeting on 5 Oct 2016.  Our thanks to Dr George Follows for his ongoing support of the CLL community and congratulations to Dr Anna Schuh on her new role,  Many members will remember Anna's very informative presentation at the Oxford meeting of the CLLSA in 2012.

Real-world use of Ibrutinib by Dr George Follows 5 October 2016

We are very grateful to Dr George Follows for making the slides used at a presentation he gave to the UK CLL Forum on real-world use of ibrutinib on the 5th of October 2016. As you may know, this was a big project that he was keen to complete before he handed over the Chairmanship of the UK CLL Forum to his colleague from Oxford, Anna Schuh. This evaluation has now been accepted for publication and should be easy to find in the journal ‘haematologica’ when it goes on line. 

Blood Cancer Alliance unites to demand NHS England reinstate recently suspended treatments for blood cancer patients.

CLL Support Association is member of the Blood Cancer Alliance and supports the demand for the reinstatement of recently halted therapies by NHS England; in particular reinstatement of stem cell transplants for patients with a rare blood cancer Waldenstroms Macroglobulinaemia (WM)..

Yesterdays letter and the BCA demand


The Scottish Medicines Consortium (SMC) accepts ibrutinib (Imbruvica) for restricted use by NHS Scotland to treat 17p TP53 CLL patients

During 2016 CLLSA and patients have worked hard with other stakeholders to capture the patient and carer perspective and deliver this during the appraisal of Ibrutinib by The Scottish Medicines Consortium (SMC). Yesterday SMC announced that ibrutinib (Imbruvica) has been approved for restricted use by NHS Scotland to treat 17p TP53 CLL patients

The continuing success of the CLL Support group at HealthUnlocked and HU director cycling to raise funds for CLLSA

On Thursday I visited Healthunlocked in London for an adminisatrators workshop and to explore with the HU management team their current workflow, commitment and future plans in supporting our community and all those on the HU platform. You will be pleased to learn that our CLLSA CLL support community at HealthUnlocked remains one of the most successful exemplars of what can be achieved to help people live with their condition. This is a result of your work together as members of this community to help each other. Well done everyone.

The Flyer has arrived in Scotland after nine tough days in the saddle, as he cycles from Land's End to John O'Groats to raise funds for CLLSA

The Flyer is hard at it cycling from Land's End to John O'Groats as a challenge for someone living with CLL to raise funds to help support the work of CLLSA.

Yesterday the Flyer arrived in Scotland after nine tough days in the saddle and  tributes the day's ride from Keswick to Moffatt to Tricia who sadly died on 8th June 

Tribute to Tricia Gardom

We are very sorry to tell members that our friend and colleague Tricia Gardom died on Wednesday 8th June.

Tricia was a CLLSA member from 2006 and absolutely dedicated to fighting for people affected CLL and raising awareness of our plight. Even when so unwell over her last several months Tricia was there to help others in our on-line community  

Show you support for the Welsh GIANTS who tamed the dragon to raise funds for people living with chronic lymphocytic leukaemia

Today three brave fundraisers tackled The Dragon Duathlon to raise funds for CLLSA,

The Dragon Duathlon is a brand new, unique extreme duathlon event where participants have to travel the length of Wales non-stop, riding coast to coast while tackling the Welsh 3 Peaks by foot.  The target; complete the course in under 24 hours.

Lyndon’s team achieved this in an incredible 20.5 hours