A fitting tribute to all the Men United

Nick Clegg with Men United stars Ray Clemence, David Kurke and Errol Mckellar

Last week Deputy Prime Minister Nick Clegg and Health Minister Norman Lamb celebrated the work of our supporters in an event at Admiralty House. Karen Stalbow, Head of Policy and Strategy was there and reflects on what occasions like these achieve.

Karen Stalbow, Head of Policy and Strategy

Karen: “Having politicians celebrating our successes is a somewhat rare and glorious thing. That one of them was the Deputy Prime Minister (and our Patron) and the other the health minister, Norman Lamb gave the celebration a whole other level of gravitas. That we got to be in Admiralty House at their invitation was the icing on the cake.

“And they were right to celebrate. Not just because we’re an organisation that has lifted prostate cancer from obscurity and united hundreds of thousands of men to beat it. And not just because our research programmes drive progress, or because our campaigning delivers change for men and our services support them through difficult treatment choices and side-effects. They were right to celebrate because the audience these ministers addressed was made up of the people who have helped to drive our successes.

“And who are these people? Politicians? No. Celebrities? No, not them either. Magnates from the corporate world? Again, no. So who are these people? Who did Nick Clegg and Norman Lamb address?

Health Minister Norman Lamb with William Kilgannon

“They’re our supporters. They’re people like twelve-year-old William Kilgannon who collected 10,000 pennies for us. His father, Brian who did everything he could to support our award winning partnership with the team he’s supported all his life, Millwall Football Club. Or Nigel Lewis-Baker MBE, our captain of ‘raise awareness in drag’ events, which get men talking about the disease. ‘When men are in dresses,’ he told me, ‘they really open up and talk freely about prostate cancer.’ A lesson I think for us all. Or Errol McKellar, a car mechanic from Hackney who offers men discounts on an MOT at his garage if they will go and speak to their doctor about their prostate cancer risk.

“The list of unsung heroes goes on. There are the men with prostate cancer who regularly campaign with us and who, by doing so and lobbying their MPs in Parliament, ensured that prostate cancer was finally included within the Government’s ‘Be Clear on Cancer’ awareness programme. Then there are the individuals who have got the shadow Health Minister, Andy Burnham, active about prostate cancer. There are the awareness raisers, who give their time to speak to groups of men about the disease. These are the people we should be celebrating. And these are just a handful of the amazing dedicated individuals who have taken, and continue to take action to beat prostate cancer.

“We welcome their current unshaven appearance – often frowned upon in the presence of senior politicians – but crucial to Movember, generating millions of pounds for men with prostate cancer.

“But I want to end with a thought for the day – an insight that this event has given me. And this is it: It’s not often that our day-to-day activities allow us time to reflect. And why this thought? Because having the time to listen to the speeches given by Nick Clegg, Norman Lamb and our Chief Executive, Owen Sharp I was able to see just how far as an organisation we have come. By speaking to our supporters, I could recognise and appreciate how much they do. And so I think we should continue to use events like these to pause, reflect, value and celebrate everything which, as Men United against prostate cancer, we have achieved.

“And then we should quickly get back to the day-to-day because while we’ve achieved a lot, there’s no space for complacency. We all have much more to do.”

 

Working together to understand why 1 in 4 Black men face prostate cancer

October is Black History Month. This time last year we broke the news that 1 in 4 Black men will get prostate cancer at some point in their lifetime. That’s double the risk of all men.

Over the past year we’ve been doing all we can to get this message out there and make sure Black men know their risk. This has included adverts in papers and magazines, such as The Voice and The Nubian Times, as well as a float at the Notting Hill Carnival.

Taking the message to the streets in the Notting Hill Carnival – Soca style

This month we’re talking about the ‘four things every Black man should know about prostate cancer’. This is an article in the official Black History Month guide, sent out alongside The Guardian, The Telegraph and The Voice. These are:

1. Know your risk
2. Know the possible symptoms
3. Know your rights
4. Know where you can get support

Recently I spoke to Sarah Toule, Service Development Manager at Prostate Cancer UK. Sarah’s role is to reach men at a higher risk of prostate cancer. One of the key areas of her work is reaching Black men.

Sarah Toule, Service Development Manager

“When I joined Prostate Cancer UK in 2009 it felt like our African Caribbean programme was something in isolation from the Black community, with no real framework. Plus it was just me! Fast forward five years and we’ve not only got a programme of activity, but we have a team, trained nurses and we collaborate with leaders in the Black community.”

We need your help to understand the 1 in 4 stat

“Over the last year, one of our biggest news stories was highlighting the risk of prostate cancer in Black men. In the UK 1 in 4 Black men will get prostate cancer in their lifetime. This is double the lifetime risk for all men (1 in 8). It’s a stark statistic but it hammers home just how big an issue this is. Awareness of prostate cancer remains low amongst Black men. This must change.”

“One of the hardest things to say to people is that we don’t know why 1 in 4 Black men will get prostate cancer. But we need to understand why this is. We think we can learn so much more through targeted research and gathering more health information from Black men. For example, it’s really important that men’s ethnicity is recorded correctly and consistently in the health system so we can analyse data and learn more about Black men and prostate cancer. To get the message out there we’ve recruited Research Champions. They are ‘super supporters’ who go out into their communities and talk to Black men about their risk and why we need to understand more.

“If you’re a Black man reading this, please know that you can play a key role and take control of your health. Whether it’s deciding to take part in research or ensuring that your ethnicity is recorded correctly when you visit your GP. These are the messages that our research champions are spreading.”

Cultural differences

“I’ve always worked in the Black and Minority Ethnic community, addressing health inequalities. Being from the Seychelles, which is a melting pot of different cultures and identities, I understand the challenges that cultural differences can create. It’s not about race. It’s about different norms and preferences between different communities and different attitudes towards health and healthcare. Many Black men are in an unnecessary situation where they don’t know their risk of prostate cancer. They don’t know their rights to services or they aren’t receiving the services they deserve. Together we’re improving this. And we’re developing strong links thanks to our partnerships in the community to make a real difference. ”

“In early 2014 we launched a pilot grant scheme to fund community activities with one aim – to help raise awareness of prostate cancer amongst Black men. We’ve funded conferences, small research projects, church events and even a comedy show! Being able to meet people and see the benefits is great. It shows the impact we can have. We’ve already heard of men who have visited their GP and been diagnosed with prostate cancer as a result of attending one of the funded events. Getting an early diagnosis significantly increases your chances of a positive outcome, and this really highlights the importance of this work.”

The role of the health professional

“Every activity within our team’s work has one goal – to reach men at a higher risk. One of our team’s most successful projects so far has been taking our Specialist Nurse services into the community. For men, being able to speak to a nurse face-to-face immediately after a talk from one of our volunteers is so useful. It means they can start building relationships with health services. They gain such confidence just from knowing that it’s within their rights to speak to a doctor about their health. Following the success of the pilot we’ve now trained some of our Specialist Nurses to go out into the Black community and support men.”

Planning for the future

“We created a new role this year – African and African Caribbean Project Manager – and we are seeing increasing focus on the Black community across everything that we do at Prostate Cancer UK. Having that designated person allows us to realise our ambitions and deliver our intentions, so who knows where we might be in another six years time!

“We are also partnering with the Be Clear on Cancer campaign to pilot a programme in parts of London, engaging Black men to know more about their risk and speak to their GP if they’re worried. Projects like this are only possible if we, Public Health England, GPs, campaigners, volunteers and leaders in the Black community work together. It’s vital more Black men know about prostate cancer, their risk, and their rights and where they can go for support.”

Going global – the True NTH programme

It doesn’t take long – three to four minutes of the evening news should do it – to realise just how disjointed and isolated we can be as a species. Our countries have never been better connected in terms of technology, but in many respects we’re just as distant as when travelling between continents involved months at sea.

Take prostate cancer as an example. Each year, hundreds of thousands of men across the globe are diagnosed with prostate cancer, and the many who survive it often experience significant side-effects from treatment. Incontinence, loss of sexual function, and fatigue to name just a few. Experts in each country battle on a daily basis to improve the lives of these men, but their learnings – both good and bad – sometimes don’t travel further than the local hospital they’re developed in.

With this very problem in mind, the Movember Foundation have launched True NTH, a global programme designed to trial and implement new ways of significantly improving the lives of men (and their partners) living with prostate cancer. Crucially, the aim is to collaborate internationally, and develop and perfect programmes that can be rolled out anywhere in the world.

The True NTH programme will make a huge difference to the lives of men living with prostate cancer.

A worldwide network, True NTH consists of 77 leading global experts from 23 difference organisations from the UK, Australia, New Zealand, Canada, and the USA. Prostate Cancer UK is leading on five projects funded by the Movember Foundation that are looking to improve prostate cancer care and support in these four areas:

• Better treatment decisions for men
• Exercise and diet
• Supported self management (helping men to manage their own recovery)
• Improving continence (both bowel and urinary)

These projects aim to provide practical, cost-effective solutions to everyday problems faced by many of the 250,000 men living with the disease in the UK.

The Movember Foundation is a global force to be reckoned with. In 330 days – one month of activity per year for the last 11 years – Movember have raised over £346 million across the globe. People often associate fortitude and determination with a stiff upper lip, but the Movember Foundation are proving that a hairy one can be just as formidable. I am proud to be working with the Movember Foundation in the UK, and look forward to report back on the progress of True NTH in the coming months.

Remote access: How do we reach men in the farthest regions of the UK?

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 Ferguson, Associate Director of Community Services

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!

A jumbo jet at Barra international airport

“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.”

Behind the numbers: getting statistics right for men with prostate cancer

Amy Dyer, Research Analyst

 

Our guest blogger this month is Amy Dyer, a Research Analyst in our Evidence team. Recently, we’ve been talking a lot about how important it is for men to know their risk of prostate cancer. And we’ve been quoting lots of statistics like one in eight men will get prostate cancer. But what do these numbers mean? Amy shines a light on the world of risk and some of the figures we use.