CLLSA 2014/15 activities, TBC
Examples of CLLSA representation in lobbying of policy makers
Members have been contributing in a scheme to engage local MPs, policy makers and stakeholders to improve access to transformational therapies. CLLSA have been working as members of groups such as Cancer52 to increase our voice when lobbying national government.
Trustees are working with the clinical community and industry to improve access in Wales. Wales members are needed to join a group working on raising awareness of Welsh issues and lobby Welsh Assembly for improved access
Trustees are working with Scottish volunteers to raise awareness and improve access in Scotland. We are currently seeking members to join a working group to attend the Scottish Medicines Consortium conference engaging the voluntary sector in its work. Delegates will hear from a range of speakers from SMC, voluntary sector and the Scottish Government, covering topics including recent changes at SMC, how organisations can engage in the process to ensure that the patient and carer voice is heard and the view from the Scottish Government. There will also be a number of workshops which will focus on issues including methods and techniques for gathering information about the patient and carer experience and understanding the SMC decision making processes.
Examples of CLLSA representation on Advisory boards/panels to provide patient group perspectives
CLLSA have strengthened relationships with partner charities, clinical community, health providers and industry and are raising awareness of the need for improved access to novel treatment technologies and CLL focussed care and support. CLLSA working group of volunteers are participating on several add boards with several different stakeholder groups addressing access, equity and invocation, towards creation of patient support programmes. CLLSA working group and membership volunteers engage with stakeholders to share experiences and knowledge to provide patient focus towards different initiatives to improve outcomes.
Examples of CLLSA representatives attendance and/or participation at events:
NCRI Cancer Conference in Liverpool.
NCRI BIOBANK workshops.
APPG Cancer meeting at Westminster.
EHA/ESH JOINT SYMPOSIUM at EHA Milan June 2014, giving patient response to live role play in educational session for haematologistsConsultation EMA European licensing of new drug – several new licences now approved: Idelalisib, ibrutinib, Obinutuzimab, Ofatumumab.
UK CLL Forum conferences
LLR, LA & LC conferences
CDF conultation, new SOP for listing cancer drugs November final SOP released following consultation .CDF now listing New drugs Ibrutinib and Idelalisib rituximab for treatment of English relapsed refractory.
BRIEFINGS with Cancer52 House of Lords, BPI briefings London, NHS London.
Example of CLLLSA representation in new drug consultation process
CLLSA representatives are participating in six NICE consultations to provide the CLL patient group perspectives and experience in new drug appraisals.
CLLSA representatives are currently participating in two SMC consultations to provide CLL patient group perspectives and experiences in new drug appraisels.
CLLSA are participitating in patient engagement meetinga during a new appraisel process consultation with the All Wales Megicines Strategy Group
Examples of CLLSA representation on commitees:
UK CLL BIOBANK Governance Committee, reviewing process, procedures and patient documentation for partnership with Genomics England
UK CLL Forum
NCRI CLL Trials Sub Group.
Sussex Cancer Partnership.
Kent, Surrey and Sussex Cancer Research Network.
Stakeholder on CCRG (Chemotherapy Clinical Reference Group) East Midlands.
Patient group CLL review panels and ad boards.
Industry advisory boards,
NICE and SMC involvement as stakeholders, (see above)