Thursday, 25 August 2011

Lottery in Care?

‘Postcode lottery’ is a phrase that can be overused in health. Regional variations in outcomes from everything from the availability of drugs to surgery waiting times (which recent reports show is on the increase) have grabbed the headlines. The frequency of these headlines run the risk of reducing the impact and making us numb to the very real issues that these inequities create for thousands of people every day.

In the case of prostate cancer it rings particularly true and apt, with the very survival of men diagnosed with this disease apparently determined by their address in some instances. There is no denying that increased media and political engagement and attention has placed prostate cancer higher up the agenda, and improved outcomes for men. But, there is still a long way to go.

One of my main priorities as Chief Executive is to fight the lingering injustice around this disease. To give an example, statistics revealed this year showed that despite a gradual decline in prostate cancer deaths over the past decade, a man’s odds of being successfully treated, and spending more years with their loved ones, is in direct relation to where he lives. For instance, there are twice as many deaths in Sandwell than Kensington – which by any standards is unacceptable.

We know there are also huge variations in a man’s care, support and treatment. Although some of the indicators of the 2010 National Cancer Patient Experience Survey showed improvement, there was massive disparity between trusts in numerous ways. Information, which is critical to men faced with a number of treatment options, was available to only half of men at the worst performing trust, and 95 per cent at the best. All of the men at the highest performing trust were able to easily contact their named specialist nurse, who provide a lifeline to men throughout their treatment, whereas at the worst this was around half of that.

This is the most dire kind of regional variation – and needs to be tackled on every front. This Charity is not in the business of highlighting problems without presenting the way forward alongside it.

One thing we need to see is a comprehensive clinical audit for prostate cancer to redress the profound gaps in information about services, waiting times, standards of care and outcomes for the disease which we see at the moment. Such data is essential for men if they are to receive the treatment they deserve, for clinicians to share best practice and for the impact of factors such as ethnicity on how and when men present with the disease to be understood. Geography should simply not enter into the equation. We will actively support such an audit as we believe it can make a real difference to thousands of men every year.

Men should get the same information and choices about the PSA test, treatment options and outcomes wherever they live. This is what I will be pushing for – an end to these variations – and I will be urging everyone with an interest in this disease, and inequity, to join me.

Friday, 5 August 2011

My education as Chief Executive continues apace

At the risk of sounding a little clich├ęd, men sit at the heart of everything we do at The Prostate Cancer Charity. In the past few weeks I have had the privilege of working closely with a number of people who have been touched by this disease – and it struck me that, perhaps unsurprisingly, that they will be my best guides. Prostate cancer affects men, and their families and friends, in such a myriad of ways, but one thing seems to unite those who have been treated, the urge to make things better for others.

Denton Wilson and Ally Clarke are just two of the individuals behind the statistics, who have opened my eyes to the real impact of the disease on men, and the desire to galvanise others once it affected their lives. I met both men during the recent Ethnic Minority Cancer Awareness Week. In their own ways, they are each moving mountains to break down the remaining taboos and lingering fallacies that still surround the disease in the African Caribbean community – whether it be misunderstandings about how the disease is diagnosed to the effect it can have on masculinity.

I accompanied Denton as he addressed a crucial panel discussion on the potential impact of NHS reforms at the House of Commons with the All Party Parliamentary Group on Cancer (APPG). Denton, a professional body-builder from Sheffield, was diagnosed with the disease in his early 40’s. A cancer diagnosis at any age is undoubtedly a huge shock, but for Denton, being diagnosed with what was at the time, a mysterious disease at an exceptionally young age – his shock was confounded. Following treatment, he has now confronted his cancer, as well as the barriers which surround it in his community, with an awe-inspiring determination (which led to a recent profile piece on Channel 4’s Five Minute Wonders – series of short films profiling charity volunteers). At the discussion Denton asked the panel what the Government was doing above and beyond its general awareness work to let African Caribbean men know about their increased risk of prostate cancer, which stands at three times that of white men. I was struck with how important it was for them to hear from someone with such conviction and personal passion, who was unafraid to speak out despite the assumptions of his community – rather than from the ‘official face' of the Charity

I then spoke at the Friends of the Caribbean event organised in the Charity’s honour in Milton Keynes, by the group’s Chairman Ally Clarke, who himself is living with prostate cancer. Ally is determined to get the message out there and he had a captive audience of several hundred people as he told his story, and urged his fellow African Caribbean men to see beyond the myths and overcome their fears about visiting a GP. It was a humbling sight to see so many people come together to help bring about a change in how the disease is regarded in their community.

The week, which was also supported by David Lammy and Chuka Umunna MPs, showed me how important it is for us to continue to work directly with the African Caribbean community, and just how far we have come, through the pioneering work of individuals, in encouraging people to dispel any myths around prostate cancer. It is my hope that in the months and years to come, we are able to continue to challenge the preconceptions about this disease in the community, so that many more men feel able to stand up, fight the misconceptions and show the real face of men with prostate cancer.

Also a final thought I just wanted to highlight an excellent blog I have come across by retired actress turned health buff, Judith Potts. If you do have some spare time it is well worth a read.