Olga Janssen CLL patient ad CLLSA trustee CLLSA goes local Olga Janssen CLL patient ad CLLSA trustee

Why: the incentives Local support groups meet local needs - specific to the local CLL service: - specific to the interests of local CLL patients and carers Local support groups make you feel better - you gain empathy, knowledge and understanding, and often a lasting bond with fellow members CLLSA is more effective with local groups - better authority to campaign for patients nationally - more people are involved to effect change for better services - better able to share good practice

What patients and carers want from a CLL support group – learning from CLLSA Accessible, but not dumbed-down, knowledge - about CLL as a disease - about CLL treatments - about how the NHS system works for CLL patients An opportunity to meet other patients and carers - to share experiences of CLL - to get tips for coping with CLL Start with these two priorities and other things will follow as the group develops. There is no one template to fit all.

A few tips Recruiting members: The launch - a direct, personal invitation is effective N.B. only healthcare professionals have direct access to CLL patients CLL nurse specialists are key to successful recruitment - those recently diagnosed with CLL most likely to respond - CLLSA’s recent survey will provide a steer on localities of interest and potential volunteers to help The launch - a presentation on CLL by a consultant or CNS will be popular - follow this with informal but structured small group discussions - keep a register of people who would like to stay involved

More tips! CLLSA can help Getting funding - Most things come free. - Your Cancer Network, Macmillan, CLLSA may help with a grant. Ask. CLLSA can help - By promoting your group on our website and in our newsletter - With help sheets on a range of topics - With your requests for advice Email our coordinator, Sarah Tobin: coordinator@cllsupport.org.uk

Good Luck!