I watched the new Star Wars trailer the other day and it got me thinking that science fiction is getting ever closer to reality. Maybe not Wookies or lightsabers (much to every little boy’s – or even grown man’s – disappointment). But back when Star Wars was first released who could have imagined that today NASA would be getting ready to send people to Mars in the next 15 years or so? Continue reading
At Prostate Cancer UK we work to meet men’s needs, wherever they are. In a recent blog I celebrated a year of local services across the UK. And now when I say ‘across the UK’ I really mean it. We’re getting boots on the ground in the remotest regions. We have a ManVan reaching men in rural Wales and we’ve been getting out and about in The Outer Hebdrides.
For anyone who’s wondering where that is, the Outer Hebrides (also called the Western Isles) are a collection of islands to the west of Scotland spanning over 130 miles from north to south. Around 27,000 people live across the 15 habited islands (there’s over 50 more which aren’t inhabited) and the islands have the highest incidence rate of prostate cancer in Scotland (joint with Shetland and followed by Lothian and the Scottish borders). So it’s a really important place for us to spread the word about the risk of prostate cancer.
Ann Ferguson, our Associate Director of Community Services, spent a week there to see how we’re reaching men in one of the farthest corners of the UK. She told me about her visit.
Ann: “It all started with one of our brilliant speaker volunteers, Duncan McGregor, who has advanced prostate cancer. Duncan lives in Inverness and delivers talks in the community. He was invited to give a talk in Stornaway (the largest town in the Western Isles), which went down so well he was asked to give more talks on the islands of North and South Uist, Benbecula, Barra and Eriskay.
“I became involved when this grew into a week long prostate cancer event organised by Kenna MacInnes, from the Western Isles Health Board and Mairi Campbell, chairman of a cancer support group. They arranged a seminar for the public and health professionals, and a series of public meetings. Attendance went up each day as word spread around the islands. Men were most concerned about their risk of developing prostate cancer and the symptoms to look out for. They were shocked to learn that every year almost as many men are diagnosed with prostate cancer as women are with breast cancer and that a family history of prostate cancer increases a man’s risk.
“While there I also spoke to GPs, nurses, the Director of Public Health, chairman of the Western Isles men’s cancer support group, local politicians and the Barra volunteer centre to find out more about the challenges they face. And we uncovered many opportunities to support them and help more men with our services.
“One of my meetings with a GP prompted him to look at his caseload of patients where he discovered a surprising increase in the number of prostate cancer patients compared with past years. A big concern for some GPs is how to support men with an elevated PSA when they don’t meet the criteria for referral to a specialist. They were very pleased to hear about our Specialist Nurses and information resources and to realise that we can support them in providing appropriate care for men with prostate cancer. The community nurses were espcially interested in increasing their knowledge of prostate cancer through our education programme.
Remoteness from health professionals is a real challenge for men
“We were made to feel very welcome on the islands and there was a genuine appreciation that we had taken the time to visit. But it was a lesson in how much we take for granted in day to day life. Travelling to and from the mainland could take anywhere between three hours (from North Uist from Skye) up to a six hour ferry trip from Barra to the mainland. Flying is much quicker but only an option for people who are up for landing on the beach in Barra where flight times vary with the tide!
“Driving around is not for the fainthearted as navigating the single track roads with numerous passing places means eyes on the road and not on the stunning scenery. Communications are somewhat hampered too. Standing on the roadside with my arm in the air to send an email via Blackberry was a certainly a different approach but it worked!
“There’s a language barrier too. Even before I stepped off the ferry so many of the conversations I heard were in Gaelic. A large percentage of the islands’ population speak Gaelic. Signs across the islands are in Gaelic first and English second and many of the older population revert to Gaelic as their main or only language.
“And the population is very sparse. Many of the residents live in the crofts dotted across the landscape so access to services they have to travel either by car, bicycle, on foot or using the infrequent public transport. The doctors’ surgery on Benbecula, for example, is on a road with nothing else around – it’s the only building. But this is what so many men rely on. Remoteness from health professionals is a challenge and having to travel to the mainland for treatment can be quite daunting for some men, particularly if that means being away from family and friends for several weeks.
“The trip was a fantastic experience and we met many lovely people. But it’s made me realise how important it is to have services which cater for everyone. We’re now looking to see how we can work with the people we met. We’ve invited some to come to our Glasgow office, meet the team and look at ways we can support them and support men on the islands. We also want to recruit local volunteers so we have a permanent presence on the islands to continue to raise awareness and show men that Prostate Cancer UK is there for men in the Outer Hebrides too.”
It’s not often that the release of a NICE guideline results in two headline stories in as many days. You will have probably heard on the radio, read in the paper or seen on television the initial discussion around active surveillance raised by the release of guidelines on diagnosing and treating prostate cancer. The NICE recommendation to consider active surveillance for low risk prostate cancer – a way of monitoring through regular check-ups rather than treating it straight away – is good news. For many men this could be a successful avenue that avoids the unpleasant side-effects such as erectile dysfunction and incontinence, which are risks associated with invasive forms of treatment such as surgery. Continue reading
‘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.