News

2015 CLL Support Association website & meetings surveys

We would really appreciate your input  with providing us feedback to aid us improve members' experience. Can you help us by taking part in 2 short, easy to complete, surveys that should take no more than 5 minutes each. 

 

The first survey is to get opinions from our members about this website which has now been live for 9 months.  

 

Click here to begin the website survey

 

Meetings in planning and set up for 2016, Starting with March 3rd or 10th Nottingham

 

Meetings are currently in set up and planning for 2016: Starting in March either on the 3rd or 10th at Nottingham, June/July Glasgow, Sept Southampton & November/December London

As details come availble and meetings, dates and venues are able to be confirmed these will be released here on the website.

 

Watch this space

 

 

Brief overview of the recent meeting at St Bart's Hospital Great Hall

Brief overview of patient meeting at Bart's Meeting in London 

The meeting started with picking up our name badges before ascending the grand staircase past the large paintings on the walls, painted by William Hogarth, and then on into the Great Hall for a coffee and chat as people arrived. 

The Grand Staircase left , photo thank to the Friends of the Great Hall

Chairman's letter to members - The outcome and next steps - CLLSA Campaign on delisting of CLL drugs from the Cancer Drugs Fund

Thank you to all our members who supported the CLLSA Campaign to appeal against the delisting of Ibrutinib and Bendamustine for the treatment of relapsed/refractory CLL from the Cancer Drugs Fund.

We have had a great response from you and more than 150 members wrote to their MP, and several also visited their MP. This is a tremendous response so thank you again.

David completes the Great Birmingham Run as the Hulk! For his mum and CLLSA

David completed the  "Morrisons Great Birminghan Run" last month (on Oct 18th). It is a half marathon, and David finished in just under 1 hr 37 minutes, even though he was dressed as "The Hulk!".

This year David chose to race the Great Birmingham Run for a cause very close to his heart.  His mum suffers from Chronic Lymphocytic Leukaemia, so David wanted to raise money for a charity "that has really helped her over the last few years".

 

David had a few mishaps with practice runs in "Hulk" costumes before the actual event.

Blood Cancers Alliance response to Cancer Drugs Fund delistings - Letter published in the Times today

CLL Support Association is a member of The Blood Cancers Alliance, an informal group of all blood cancer charities; who have written to David Cameron and Jeremy Hunt to urge them to find a suitable solution to this wholly unacceptable situation.

The open letter is copied below and has been published in the Times newspaper today 4th November www.thetimes.co.uk/tto/opin...

NICE publish final guidance for idelalisib to treat CLL, moving England and Wales NHS access closer

NICE published Final Guidance today on Idelalisib for treating chronic lymphocytic leukaemia

NICE technology appraisal guidance [TA359] http://www.nice.org.uk/guidance/TA359

 

This publishing of final guidance moves the treatment of idelalisib plus rituximab one step closer to NHS availability for England and Wales patients with NHS access expected within 3 months.