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. Your work and challenges are recognised by HU; although we are a small group your participation in our community has raised the profile of CLL and the needs of this community. .
HU have told me that they remain committed to ensuring our needs and experience are considered in their development pipe line. The community admin team and CLLSA will be working with HU over coming months to improve access to information and will keep you informed of potential new releases and planned improvements.. I am personally encouraged that HU are recognising the contribution of our on-line community when considering their future plans and sustainability.
On that note HU have undergone a significant expansion of personnel working on their initiatives and their team size has trebled along with investment in the past year towards ensuring a sustainable future of the resource and services they provide us.
You may be encouraged to know that Phil Golz an HU director has chosen CLLSA as the charity he will be supporting in his own personal cycle fundraiser in two weeks, when he takes part in the Prudential Ride London event on the 30th & 31st July https://www.prudentialridelondon.co.uk please spread the word and circulate.
Phil's Justgiving donate to CLLSA page can be reached here: https://www.justgiving.com/fundraising/phil-golz
It seems only yesterday when a core group of us came together at HU three years or so to start an on-line support group for those affected by CLL, to help us each connect, learn together and provide each other much needed support. CLL is a rare cancer and we have many challenges not least being heard and understood, so many of us often feel our needs are not prioritised in our care and information provision, Well our on-line community group are helping to change this and are making a difference not only in helping each of us live with CLL but making others aware of our needs.
Please all on-line community members pat yourselves on the back, for what you are achieving at a personal level and as a group. Neil I would like to take this opportunity to thank you for dedicating so much of your time with everyone and your part in our group’s success and the safety of everyone posting.
On-line community Admin