Pathfinder 2009
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Posted by Frances Reid, ‎Director of Public Affairs on Monday 28 January 2013

My desks, both at home and at work are heaving.

Verity, the office manager looked quite excited last week when I said that I thought I might be able to tidy my cupboards and create some more space…..

You see, for the last 15 months, daily life has been occupied by an extremely large project – the Target Ovarian Cancer Pathfinder Study. And this week we launched the results of the Study in Parliament, and to the media. There was an avalanche of coverage – made possible by armies of women sharing their stories in papers, on the radio, and TV. We were overwhelmed at the pick up – 103 pieces so far, and still counting.

A couple of days after the storm (otherwise known as launch day) has passed, I’m only now able to start reflecting on it all. The adrenaline has finally subsided – the total caffeine overdose required to sustain a 4am start (my dogs were very confused!), 12 radio interviews, a live TV interview, event briefing, and last, but certainly not least, those last minute changes to the Minister’s diary and our speeches, has cleared.

In a strange way, the jam packed day was exactly what it should have been – to reflect the importance and breadth of the study. It’s not a quick snapshot, or poll, but a very detailed and considered piece of work over a long period of time.

For those that don’t know….and I can trot this out blindfolded…The Target Ovarian Cancer Pathfinder Study tracks the experience of those living and working with ovarian cancer in the UK, seeking out the challenges and opportunities to improve survival and quality of life. In short – it undertakes work with women in the general population (about awareness), women who have ovarian cancer, GPs, Clinical Nurse Specialists and Clinicians. In all 1,997 people took part – well over 2,000 if you also consider those who piloted the surveys.

I led on the first study in 2009, but in many ways that was far simpler than this time around. Simpler because as a new charity back then – it was the main focus of our activity, whereas now we’re extremely busy with our established programmes of work, but it was also simpler then because we were asking questions for the first time. This time around we had to work out, with the Advisory Panel, which bits we wanted to re-measure, and what areas we wanted to change.

It would have been impossible (and at times it felt like it was!) without the support and research brains of our Public Affairs Manager Sharon Tate (or rather Dr Sharon Tate). I share a very small office with her, which doesn’t have air conditioning, but from time to time we had to shut the door to keep people out, so we could have the mental space to really concentrate on what we were doing. We certainly generated a lot of hot air!

The study matters, very much. The 2009 results gave the Department of Health the first evidence that only half of GPs had direct access to urgent tests for ovarian cancer, and resulted in a multi-million pound investment. And it has helped us lobby successfully for Government-led symptoms awareness campaigns, and has set the direction for our work as a charity.

We’re looking for the results from 2012 to have the same impact.

The headlines were all around delays in diagnosis, but the scope of the study goes way beyond that. In one sense our work has only just begun, for it’s what we do with the information that will count. Everyone who took part in the study has our promise that we will pursue with a passion, all we can to make that difference to survival and quality of life. So, much more work to be done. But if you don’t mind, as my brain feels overloaded, I’d like just a few days not thinking about it or anything much at all! And after all, I do need to tidy those desks….

If you’d like a copy of the report – you can find it here or, call us on 020 7923 5470.

Frances