Could a small step for fourteen experts become a giant leap for Men United?

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

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.

Growing together since 2007

We’ve been big fans of the hairy upper lip since 2007, when Adam and JC – two of the original four mo-bros – first walked into our offices and suggested we team up to tackle prostate cancer in the UK. And that, as they’ve probably never said, was the start of a long and beautiful hairy-lipped friendship. Continue reading

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.

True NTH

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.

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

“My partner won’t want to stay with me. I’m not enough anymore.”

These are words I heard this week when speaking to one of our supporters about the impact prostate cancer treatment has had on his relationship. What’s even more gut wrenching is that this is a feeling shared by so many men.

Side effects such as incontinence and erection problems are physical but their effect on a man’s mind can also be very troubling. For some men, the whole concept of a sexual relationship is turned upside down.

Talking about sex and your relationship after prostate cancer is vital. Now we have begun working with Relate to offer counselling sessions both face to face and online to men, couples or family members affected by prostate cancer.

Continue reading