Come out! Come out! wherever you are…….

With all the work that is going on within the James Whale Fund for Kidney Cancer I’m always increasingly surprised that we don’t see many more people signing up to the forum, blogs and web site.

In the UK around 7500 people per year are diagnosed with this hideous disease.  We know that sadly over half of that number die, which is a frightening statistic in its own right.  Of course a number of the surviving people will have been caught at an early enough stage to be considered as cured (not to tempt fate but I fall into this category), and of course under these circumstances many that fall into the “cured” category will want to try and put it behind them and move on.  This is totally understandable and there are days that I think I should maybe have done the same.  However I felt so strongly about the lack of awareness and information that I took action, and I don’t regret it.

Anyway, enough about me. So where are the others then? The remaining Kidney Cancer patients, the families and friends?

I ran The Kidney Cancer Resource for the best part of three years and managed to build up a daily readership of around 160.  My expectation was for this number to be closer to 1000+ given the annual increase in the community.  But it never happened.  Was I too impatient? Probably, but it did seem very odd to me that given the amount of information available in a standard (wiki) format that the user community wasn’t higher.

I did all I could to raise the sites visibility on search engines like google and got it onto page 1 in most cases, but boy did it take time and effort and an understanding of SEO tactics (Search Engine Optimisation).  By fine tuning these tactics the readership soon doubled, but to me it never warranted the level of work required.  That’s why it made sense to me to close down Kidney Cancer Resource and pile the energy into a single charity in the UK that’s focused on Kidney Cancer i.e. The James Whale Fund for Kidney Cancer.

My main issue is that collectively we’ve been creating multiple sites and organisations around the UK and by doing this all we’re doing is diluting what is already a small total UK readership.  To this extent I saw myself as part of the problem rather than being part of the solution.  So the decision was made to close down and re-focus my efforts.  I suspect I now need to spend more time on SEO tactics for the JWF to raise awareness and readership. But only if they want me to :)

Part 1 of this was to move the rolling news from KCR onto the James Whale Fund’s web-site.  I’ve been looking at the stats over the last few weeks, and yes there is a gentle increase in the number of site visits but still not enough.  My next step will be to speed up the re-direct from KCR to the James Whale Fund site, at the moment it’s set to 15 seconds and I reckon that might be putting people off.

As a slight aside, there is a Patient Advisory Group within the James Whale Fund (which I’m a part of) and one thing I know we’re always looking for is feedback on the web-site.  Is it delivering what people want? Is the information relevant? Was it easy to find? So, as we’re on this subject please feel free to contact me and let me know what you think. My e-mail address is amt@jameswhalefund.org. It’s important to get this feedback, be it positive or otherwise.

However, technology aside I’m still amazed that more Kidney Cancer patients in the UK are not driven to the fund. My conclusion is that ultimately greater public awareness is the only real way to make this happen.  We could make the James Whale Fund no 1 in the google search engine but that doesn’t always translate into a greater audience.  Yes of course it will have a natural increase, however not at the levels we’re seeking.

When I say awareness I really mean at the grass roots level of this disease i.e. when people are initially diagnosed by a consultant urologist or oncologist. Letting people know at the “get go” that there is help out there beyond just the medical.

I look at what the James Whale Fund offers – help that extends to patient support, campaigning for new drugs to be made available, help with appeals, fundraising, awareness, engagement with the medical community, specific training of nurses, information, patient days.

The list is endless and yet this isn’t visible to patients and carers.  If you want to know what’s available and what’s going on you’ve got to know how to search for it on the web.  This is just plain wrong and it’s one area where the hospitals/surgeries could be more pro-active.  Charities such as the James Whale Fund offer guidance packs that could be handed out to newly diagnosed patients. These should be given as a matter of course, it’s not so tough to get these packs approved by the medics.  Patients need an outlet beyond just our medical teams, it’s sometimes as valuable to be able to talk to people who share the same experiences.  Our consultants, Drs and nurses can’t be available 24 * 7.

This view was really drilled into me last night when a friend rang me to say that a work colleague of his was about to undergo surgery to remove a Kidney because they’d found a tumour, and could this colleague contact me if he needed to talk.  Well, of course the answer was yes but why wasn’t the information available to this person? A simple one page leaflet or pack would have lead him to our support group.

I do believe we need a strong web presence, as a geek I cannot deny this, however it’s time people were guided to this presence by professionals rather than having to stumble across it via some sort of random web search.  Until this time I suspect our daily readership will stay around the 100 – 200 level.

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Posted under Andy Thomas, General

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