Monday, December 21, 2009

Where did it go?

I know it is a commonly voiced sentiment at this point in the season, but, wherever did the year go? Time seems to have once again flown by. However, when I look back on the year there has been just so much achieved by the team here. We've achieved what we set out to do and more, and we've covered a lot of ground with a number of new services and programmes launched, an increase in advocacy and awareness work, and more patients and families than ever in touch with the Support Services team.

Certainly it is good to be at this point in December with only four more sleeps to go until Christmas. It is great to reflect on those we worked with this year, both in terms of those we support and those that support us to make it all possible.

I thank my wonderful team of LBF staff and also a big thank you to our trustees and dedicated volunteers.

I am looking forward to the New Year to come, wishing everyone a safe and wonderful holiday break and every good wish for 2010.


Thursday, October 1, 2009

This needs to be taken seriously

World Lymphoma Awareness day fell in the middle of last month. We at the LBF mark this day by our many activities directed at raising awareness of this little known, but increasingly prevalent cancer.

We sure do have our work cut out for us in terms of raising awareness. Knowledge about this cancer does need to improve.

And the attentiveness needs to be raised at all levels. The public need to know when to take action with persistent flu-like symptoms they may be experiencing. GPs need to recognise, or at least be suspicious of this cancer and have lymphoma on their radar. Policymakers in health need to have information about this cancer in their sites so that cancer control strategies can be worked on. Namely, quicker diagnosis, funded access to innovative and highly effective treatments, access to diagnostic, staging and monitoring tools such as PET* scanners, we still don’t have even full access one of these in New Zealand … Australia has 12.

So what is the upshot of things as they stand? Combined, the blood cancers -leukaemia, lymphoma and myeloma - and closely related conditions number around 2,200 newly diagnosed patients each year. This is very close in number to cancers that have a high public awareness factor to them such as breast, prostate and lung cancer, regrettably bowel cancer is leading in this numbers race that no one would want to be in.

Some New Zealand lymphoma facts
- lymphoma is the most commonly occurring cancer in 15-24 year olds
- more people die of lymphoma every year than melanoma
- lymphoma is four times more prevalent than cervical cancer
- lymphoma is rising in incidence in as it is in most western countries
- lymphoma alone is the 6th most common cancer

So why is it such a challenge to get this into the consciousness?

Well we are one of the lesser known, and smaller, health not-for-profits. This is clearly not determined by the size of the issue we deal with. Our challenge is to increase knowledge about these cancers and conditions so that the issues that surround them will be taken as seriously by health authorities and those that can affect outcomes for patients.

*positron emission tomography

Friday, September 11, 2009

The First Time Is Always Hardest

I know social media in all its forms has been around for a while but it’s a relatively new world to me.

I have in the last few weeks been forced to facebook, tempted to twitter and badgered into blogging.

I am going to own up to initially not seeing the value in all this, either personally for personal connectedness, or for our work here at the LBF. But I will say that having now entered these brave new worlds I can see how they become, on the one hand strangely addictive, and on the other, very valuable tools to connect with friends and people of like thinking and to share our work and its importance meaning with many people.

But the interesting thing for me is that whole new audiences that have started to take an interest in our work and join up and follow and share with their friends and networks. It is clear to me that our traditional means of communication - website, newsletters, the good old telephone, and meetings - whilst very valuable are not reaching whole large groups of people. That doesn’t mean we are about to ditch any of those channels of connecting, we’re just adding some new ones into the mix.

There sure is a fear factor too when it comes to tweeting, blogging and the like, not just around putting yourself into cyberspace for all to see but also in wondering if indeed there is something interesting to say!

And hard too is the need to be succinct. It certainly distils the thinking when only 140 characters are permitted to tweet.

I’m not sure if this is a case of when you are looking to buy a house you suddenly see ‘For Sale’ signs everywhere but since starting this journey there suddenly seem to be heaps of articles in the national papers and lots in our own sector (not for profit) publications. Who knows maybe the charity space will lead the charge on this as we have always needed to be nimble and proactive to survive.

Hmmm so this is the first blog and it will be followed by … many others over the coming months.