Why we created a global community for Chronic Lymphocytic Leukaemia patients

Since starting HealthUnlocked one of the first questions we are asked by new organizations is ‘why do we need a HealthUnlocked community?’ We can offer a hundred reasons but nothing speaks more clearly than the experience of our existing partners. So we’re delighted to have Nick York from the CLL Support Association share the personal journey that ended up with the truly inspirational resource that the CLL Support HU community is today, with some top advice about how to get a community thriving.

– Matt Jameson Evans, Chief Medical Officer & Co-Founder, HealthUnlocked

The journey from patient to advocate

Four years ago I didn’t know what Chronic Lymphocytic Leukaemia (CLL) was and was happy in my ignorance until diagnosis. I struggled to cope, especially when I was told that in some patients it may not advance very much and if it does you can’t have treatment until it is needed. This was a very lonely start to a journey that impacted very heavily on my family too.

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Now I consider myself fortunate and privileged to have others to share my experience with. There were torturous moments coming to terms with this diagnosis and finding information was not easy. It was my early forays into the international online CLL community that helped me come to terms and learn to live with all this. Now a CLL Support Association trustee and patient advocate, I work with others to support those affected by this disease.

In search of a global online community

It’s not a stroll in the park living with CLL, but having a group who understand and have knowledge and ability to listen and sign post you to information makes it a little easier. An online support group is a way to engage with your membership and have people available 24 hours a day to listen and respond to anyone, without delays due to the limited resources of a charity.

Two years ago, I started a CLL group within the Macmillan community. Soon the group grew and developed a personality that remains today a very supportive, active and social type of group of now about 200. Macmillan at the time seemed an ideal location to start a CLL group, however it is very UK based. It had become clear to me that a disease that relies on multinational collaboration to complete clinical trials may require an equally international approach to online support. At the time the CLL Support Association had 900 members, but we did not have a dedicated online community.

We started our HU community as an experiment with a few altruistic contributors from the Macmillan group and some of my early teachers who brought their expertise and agreed to be pioneers. First, we created a sufficient number of posts to set the tone and a credible level of activity. Then, we emailed the charity membership and invited them to join us, at the same time publishing details in our newsletter.

Not long after launching only ten months ago, we achieved critical mass of members. Now we have any active community of over 580 members. This is despite the fact that CLL is only  diagnosed in approximately 3,000 people a year in the UK, including many who are elderly and not computer savvy.

Building a thriving community

Be prepared to put in the time in the beginning.  Engage with as many as possible in conversation, encourage people to share their diagnosis and their journey and use polls that engage the maximum number of people to gain confidence in the system and develop a community spirit. Perhaps what was key to our success, was the selection of volunteers/first responders.  This adds flavour and variety of opinion to discussions, giving members the confidence to share an alternative to help build a picture of options.

Your volunteers will help drive your growth as they will receive notifications to new posts and can strike up conversations. Never be too black and white with an answer to a post; encourage people to find their own way to the answer by stimulating them and giving them options that are qualified, current and relevant. Be prepared to listen, consider your responses and trust your volunteers. Soon your community develops a personality and members take ownership.

You know you really understand the strength of the people around you, when you share the fruits produced by the altruistic efforts of your members and their determination to support each other.  

Earlier this year Neil, based in Australia, joined me as our much needed second administrator and I am so glad he did. I don’t think I would have coped without his support and know that many in our group would not have either.  Neil has written his thoughts on how we continued to improve as a community during recent difficulties that will be published in next week’s blog post. His advice may help others in encouraging activity and confidence in their own community to develop it or breath life back in again.

Never stop pushing

Perhaps when we have all suffered alone, watched the faces of our loved ones and have no answers, we are better able to understand the value of this space. A place where we have people who do understand, who do make time for us and who are prepared to go the extra mile?  For me a core message behind what our group does, is teach us all to learn the importance of self-advocating and taking charge.

Like several other communities, we struggled with the new HealthUnlocked platform transition this summer. Honesty and informing as frequently as possible of developments, good or bad, kept us all connected and in the loop. At times it was hard without specific information from HealthUnlocked, but we created our own “How To” and site problem threads to collect the group’s experience and get some answers.

Now, it is such a relief to see the light at the end of the tunnel again and watch the camaraderie and community spirit return.  It has been a little like starting again. I am a young CLL patient at 50, so unlike many in our community I can’t remember the war. But I don’t think I am imagining the increased community spirit after what has been a battle at times to find where that information went and where that post was or just get in to see who else has managed to log in!

We have turned a corner now and although it has been tested at times, our relationship with HealthUnlocked is strong again we do feel supported again. Our own group has never been more active, as the site moves ahead awaiting improvements to registration, tagging and searches. I have confidence and believe in HealthUnlocked and will always push for what we need while trying my hardest to keep my community growing. There are many individuals and groups who have not fared well with the transition and challenges this created during the switchover and the resulting chaos. Now we have to rebuild the confidence we had all worked to create and learn from the lessons.

My advice: never stop pushing.

There are no short cuts, you have to do some work. For any fellow admins looking for advice, you can drop me a line any time.

– Nick York, Trustee, CLL Support Association

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