CLL Support Association
8,937 members14,281 posts

UPDATE - CLL Support Association at HealthUnlocked - Community Activity Report September to March

UPDATE - CLL Support Association at HealthUnlocked - Community Activity Report September to March

Now updated with March figures - we have left the graph :-)

The CLL Support community has launched into the spring with much renewed vigor I as many more are joining us and activity has reached new heights at an increasing rate, The graphs above show just how active everyone has been.

It has been very rewarding to see how many have joined us, are able to share their experiences and support together to aid us to live with CLL and the challenges it may present. Great work everyone , keep it up.

It is a busy time this summer for the CLLSA with several initiatives and activities coming together accompanying our regular activities: the new website development is underway, new treatments are in with NICE for UK appraisel, advocacy development and members meetings at Cambridge and extending our Quality of Life surveys to focus on key issues are some of these. Please contact us if you wish to become more involved.

Thank you for your contribution to recent polls and surveys. Our next survey will be provided by CLLPAG the Canadian CLL Patient Advocacy Group, to aid their access to better treatments.

From the CLLSA chair

As the Chair of the CLLSA, and on behalf of all of the trustees, I would like to thank all of the people who have made the CLL Support community at HealthUnlocked such a successful and vibrant resource for CLL patients and their carers. I have been amazed at the rapid growth of the site and it certainly provides a much needed forum for the sharing of experience and information to empower patients and to enable them to make the

right choices based on sound knowledge and understanding.

News report written by members and admin

The Health Unlocked site is still growing month on month and is beginning to mature, with a widening number of regular contributors. The administrators have taken an increasingly hands off approach over the last three months. With over a year's contributions, there is plenty of relevant content that new members are finding useful, with some finding and replying to previous questions/posts that resonate with their situation. Community membership now exceeds 900


The CLLSA on-line community is lifting the profile of CLL further into view, so much so that the administration team were given an award for excellence. HealthUnlocked selected the CLL support admin team from the 400 different on-line community groups supporting 170,000 members of the HU platform. here

HealthUnlocked site changes

The Health Unlocked team have significantly improved the site's responsiveness and made a few other improvements. There is now an excellent Site Help resource. Most importantly, posts/questions that are private are now clearly identified as such via an interim solution, with a more integrated solution in planning. Community input on how to implement new features is now being sought by the Health Unlocked team and a test site is planned. One change

particularly welcomed by the administrators was an automatic block of people joining up just so they could send out spam via Private Messaging.

Members' perspectives on our HealthUnlocked Community

To get a feel for a member's perspective on how our Health Unlocked community has developed over the last 3 months, I asked a couple of regular supporters (Bubnjay and PaulaS) for their thoughts. Bub kindly drafted an initial response which Paula kindly reviewed to provide the following summary:

"The CLL Support Association Health Unlocked Community has continued to prove itself an increasingly valuable resource, not just to the newly diagnosed, but those who are quite a way into their CLL journey, many of whom have generously shared their treatments, their experiences and the highs and lows they have lived through. They also offer advice, support, and help to others facing similar decisions and fears.

The Health Unlocked community has proved itself a focus point for news of trials, and advances being made all over the world. Contributions from seminars, meetings and conversations with experts in the CLL field have provided the data that we seek, to help us understand this disease. It is

encouraging that members increasingly feel able to ask questions and query unclear information.

Where the Health Unlocked community exceeds the facilities provided by similar CLL sites is the humanity it possesses, ably demonstrated by all those who post and reply and support anyone who needs sympathy, understanding and encouragement. Over the past three months this community has become a little like a family, supporting, encouraging and just being there for each other. As time has passed, people are getting to know each other better, as individuals. Personal messaging has given opportunities for supportive friendships to develop, between those who find they have things in common - not necessarily just CLL.

There are those who do not feel quite confident yet to join in the posts and discussions, but the

increase in membership indicates that there are many finding the site helpful, so some benefits are not calculable. No one who is newly diagnosed and posts fails to receive sympathy and encouragement

Finally the guidance, information, explanations, and links provided to relevant documents, not only by the administrators, but also by the membership promotes knowledge which benefits all.

Some interactive sites become dominated by a vociferous few which is inclined to put members

off, it’s pleasing to note this has not happened here."

Many thanks


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