A fitting tribute to all the Men United

Nick Clegg with Men United stars David Kurke and Errol Mckellar

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 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?

Norman Lamb with William Kilgannon

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.”

 

Eastenders, Stan Carter, and the choices we make

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Robert Frost, The Road not Taken

These days many of us take choice for granted. In the spare second I get away from the office, I can switch on the TV and choose from hundreds of different channels to flick through. My father at my age probably only had the choice of watching one of three channels, and my grandfather would most likely have spent most of his spare time trying to secure a decent radio signal.

For obvious reasons, I’ve been choosing to watch EastEnders on BBC One this week. We’ve been working with the BBC – strictly under wraps – for several months, providing support and guidance on Stan Carter’s prostate cancer storyline. In case you missed it, you can catch up on iPlayer.

Stan party

Stan chose not to tell his family that he had prostate cancer for a long time. He didn’t know how they’d handle the news, and he didn’t want to worry them.

“How long have you known, Stan?“

“Long enough.”

“What does that mean? Months?

“Three years if you wanna know.”

Many of you expressed your sympathy for Stan living with his diagnosis on his own for three years. A prostate cancer diagnosis can be earth-shattering and there’s always going to be a lot to come to terms with. Men forced into this position can often feel like they should take on the strong and silent role. Think John Wayne taking a gut full of iron before manfully riding out one last time. I can empathise with that. I prefer to deal with things myself than call in the troops, and I’d rather get lost or take a ‘scenic diversion’ than ask for directions if I can possibly get away with it. I bet there are a few men reading this now who know what I’m talking about. Women too.

The EastEnders cast and crew have done sterling work breaking down barriers around an issue that’s still hampered by a lack of awareness and understanding.

Here’s what you’ve had to say about this over the last few days:

No one should have to face prostate cancer, and the difficult decisions it brings, alone. We’re there to support men like Stan every step of the way. You can speak to our Specialists Nurses on 0800 074 8383, or using our live chat service; chat to men who’ve been there, done that and got the t-shirt through our one-to-one support. You can find out all you need to know about prostate cancer, from diagnosis to end of life care using our Information Standard accredited booklets and online resources, and get support on your own patch, through our community support services.

Our community support aims to help improve men and their families’ whole wellbeing, including support for emotional and psychological needs, physical activity, nutrition and complementary therapies. By the end of March this year, we’d teamed up with over 50 community-based organisations to deliver more than 60 projects across the UK – and by the end of August, our community support teams had reached 14,993 people in local areas. For Stan, whose prostate cancer is at an advanced stage, one of the choices he had to make was whether or not to continue treatment and have chemotherapy.

“There must be something they can do. Chemo?”

“I’m not putting my body through that. Not at my age” Stan sitting

Understandably, Stan’s decision stirred up a lot of emotion:

But whether you agree with him or not, Stan has the right to choose how he wants to be treated. If he (and men in his position) decide the disadvantages of treatment on offer outweigh the benefits then who are we to argue? That right to choose how they are treated is something all men should have and it sure as hell shouldn’t be decided for them by where they live.

Last week, the first National Prostate Cancer Audit report showed up some truly disturbing gaps in prostate care in parts of England and Wales. Only 50 per cent of NHS trusts in England and 60 per cent of hospitals in Wales provide all the personal support services a man needs after prostate cancer treatment.

NICE may say that high-dose rate brachytherapy combined with external beam radiotherapy should be an option available for men with intermediate and high-risk localised or locally advanced prostate cancer, but only 11 of the 54 radiation centres in England offer this. And it’s not available at all in Wales.

That sit well with you? It doesn’t with me, and I know it doesn’t with the hundreds of thousands of people in the UK who have signed up to Men United. Each time I sit down in front of one of the leaders of our current healthcare system – usually in a little room in Whitehall – I know I’ve got 10,000 more people standing right behind me than the last time I spoke.

Stan’s choices are limited by the progression of his prostate cancer. Our leaders’ choices are shrinking due to the strength and growing voice of our movement for men. They’re at a fork in the road with two options ahead. Continue down the same care-worn path of putting men’s health on the back seat, or take a step onto the road not taken – a bumpier track, granted – but one that leads to a better future for men. I know which way I’m headed.

Sign up to Men United.

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

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

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.”

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 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!

Jumbo jet at Barra international airport

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.”

Royal Mail and Prostate Cancer UK: a partnership to be proud of

When you received a letter in the post in the last two years, chances are you’ll have seen a simple message in the postmark: Royal Mail is supporting Prostate Cancer UK. That statement of fact, franked onto millions of letters across the UK, still makes me smile two years later.

I remember distinctly the first time I had a letter land on my doormat at home that had this special postmark stamped on the top right corner. It wasn’t the first time I’d seen it of course, but these things always look better in the flesh, and it reinforced how lucky we were to have landed such a huge and influential partner in the Royal Mail.

Dr Fox models the Royal Mail poststamp

Neil Fox models the Royal Mail Prostate Cancer UK postmark

Royal Mail was our first major corporate partner as Prostate Cancer UK, and they helped us launch our new identity. For many people, seeing our logo on their post may have been the first time they had heard of us. Our identity as the largest men’s health charity in the UK has skyrocketed over the last few years (in this year’s Third Sector Charity Brand Index we’re 29 out of 150; in 2011 we weren’t even on the list) and it was Royal Mail who helped light the fuse. That’s some legacy.

Friday 29 August was the last day of this special partnership, and I would like to thank all 150,000 members of staff at Royal Mail for all they have done for us and for men over the past two years. Royal Mail have put everything into this partnership, and through their endeavours, have raised over £2.3 million with match-funding to fund 34 specialist prostate cancer nurses to provide men with support in communities across the UK. You read that correctly: £2.3 million.

Royal Mail staff take on the gruelling Lands End to John O'Groats for Prostate Cancer UK

Royal Mail staff take on the gruelling Lands End to John O’Groats for Prostate Cancer UK

How did they raise such a colossal amount of money? How didn’t they would be an easier question. I’ve rarely seen such levels of engagement with a workforce this big. From simple ideas like the Give a Quid days, which raised over £70,000, to full on challenges, like the Graduate Challenge programmes, which brought in almost £150,000, the staff of Royal Mail just kept on giving their time, money, and commitment to making a better future for men. The Royal Mail Choir, made famous through the BBC programme, even released a charity single.

Graduates

Royal Mail graduates arrive at the Prostate Cancer UK London office having cycled from Cardiff

It wasn’t just money that was raised through our partnership with Royal Mail, they helped us spread awareness of prostate cancer across the UK (including within their own workforce). Through taking part in our awareness campaigns such as the Sledgehammer Fund and Men United v prostate cancer, and distributing thousands of our Know your prostate guides, they’ve helped us increase the understanding and awareness of this horrible disease.

Royal Mail take a sledgehammer to prostate cancer

Royal Mail take a sledgehammer to prostate cancer

With partnerships as strong as these, now and in the future, I’m confident that we will crack prostate cancer. On behalf of Prostate Cancer UK, thank you to everyone at Royal Mail for all your hard work and support. You have made a real difference to the lives of men with prostate cancer, and there’s no better tribute than that.

Footballers’ focus on prostate cancer

Through our partnership with The Football League, we’re in and out of grounds almost on a daily basis. We’re on the back of every single Football League player, are serenaded by the England Supporters’ Band, and supported by top internationals for our own goal (sorry) of making life better for men with prostate cancer. This Sunday is no exception. Continue reading

How do you take a calculated risk when you don’t know the odds?

Risk’s a funny thing. Something like jumping out of a plane or throwing yourself off a bridge with nothing but a bit of elastic attached to your legs can feel very risky. It’s a gamble – a ‘fingers crossed, close your eyes and pray’ moment.

But a gambler always knows the odds. Nobody would strap on a parachute or tie on a bungee cord and take to the air if they didn’t know the risk they faced was tiny (1 in 101,000 for Skydiving, 1 in 500,000 for bungee jumping, in case you were wondering).

But men with prostate cancer don’t have this luxury. Continue reading