A MO-mentous day in Parliament

Westminster MPs who embraced Movember 2014

Jason McCartney MP (second from left) with MPs who embraced Movember 2014

We’ve talked about why it’s important for us to build relationships with politicians before. It’s because we need to highlight at the highest levels the inequalities men with and at risk of prostate cancer face – and the changes that need to be made. This is crucial if we want to achieve our goal of improving care and support for men with prostate cancer. And Movember is a fantastic opportunity to make that happen.

The MPs who take part in Movember not only raise money for the cause, but also act as awareness raising champions in the halls of power and in their constituencies – spreading the important health messages behind the campaign throughout the month.

This year Jason McCartney MP, Mike Penning MP and Jake Berry MP bravely grew moustaches, as did Assembly Member Carl Sargeant in Wales and Liam McArthur MSP in Scotland. We were very pleased that the minister with responsibility for cancer services, Jane Ellison MP, once again supported us by attending our photo-call in Westminster at the end of the month. Mo Sistas Luciana Berger MP, Rt Hon Caroline Spelman MP and Fiona Mactaggart MP also joined us on the day, and Jason McCartney, MP for Colne Valley in West Yorkshire, raised a fuzzy-faced question in Prime Minister’s Questions –the half an hour on a Wednesday afternoon when the PM sets aside time to answer questions from MPs.

This year, Jason asked: “Every hour one man dies from prostate cancer in the UK.  Testicular cancer is now the most common cancer in men aged 25 to 49 in the UK and on average 12 men in the UK die from suicide. Will you join me in congratulating all the men who have taken part in the Movember campaign to raise these men’s health issues and will the Government continue to fund them and support these vital men’s health issues?”

And David Cameron replied: “I certainly join you in praising all those have taken part in Movember. You are sporting a pretty magnificent specimen. I have to say (Mr Berry) looks like he’s about to star in a Cheech and Chong movie – it’s absolutely remarkable. In terms of my protection team, they have done incredible work and they’re raising a lot of money. I’m only sorry that I can’t seem to be able to join you but the causes are important – particularly these cancers that really need to raise awareness, improve treatments and save lives.”

At our photo-call in Westminster, Prostate Cancer UK volunteer, Nick Harding, caught up with Jason McCartney for a quick chat about why he takes part in Movember.

Jason McCartney MP movember SPW_8337

Jason McCartney MP chatted to Prostate Cancer UK staff and volunteers at Westminster

Jason: “I’ve been involved with Prostate Cancer UK almost since I started here in Parliament. About five years ago, a good friend of mine called Des Latham died from prostate cancer. He inspired me to change direction in my career as a broadcaster with ITV Yorkshire and to run for parliament. Des was ill for about six months before he passed away in his mid-fifties. He should have had many years ahead of him. This is a very personal issue for me, but obviously some of my constituents are affected by prostate cancer too.

“Men are notoriously bad at recognising symptoms of poor health and going to the GP. We can actually save lives by spreading the word about the risk factors for prostate cancer, as well as by campaigning for certain cancer drugs to be licensed and for more research into different types of treatment.

“These days people are hearing about a lot of health issues. I mean, there was World Aids Day recently and there’s a very high profile campaign running in the fight against HIV. And a lot of women’s cancer charities run really, really successful campaigns on the importance of early screening, whether it’s for cervical cancer or breast cancer. As I said, I think men have been historically bad at recognising symptoms, going to see their GP and getting tested. So, just by making people more aware of prostate cancer, and actually realising what a big killer it is, we can fundraise for more research and help people save lives.

“By taking part in Movember, I’ve probably had 50-60 conversations about men’s health issues and prostate cancer that I wouldn’t have had otherwise. It all starts when people ask: ‘Why are you growing a moustache?’. I raise money as well but for me, it really is more about starting conversations, making people more aware of what prostate cancer is and how many men it affects every year.

“This year, I think the best mo in Westminster was Mike Penning’s – Home Office and Justice Minister. I had a meeting with him recently and he had big, hairy chops. He looked like something from the 1800s, and he carried it off really well. It’s great that someone in the Ministerial team has taken part. There’s also my good pal Jake Berry, from Rossendale and Darwen, just over the Pennines from me. As the Prime Minister said in response to my question in PMQs, he looks like a ‘Cheech and Chong’ character. I’ve just looked online and he does – he looks like a bandito!”

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.”

 

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.”

Enthusiastic, committed, talented, and giving. Who am I talking about?

Thankyou_collage

It could only be our amazing volunteers. When I joined the charity nearly three and a half years ago, I remember my first week pretty vividly. I’m sure I wasn’t the first or last person to feel nervous to impress, to fit in, to feel like you’re doing a good job. But then I was lucky enough to hear one of our volunteer speakers, Ross, tell his story.

Not only was he a  warm and passionate speaker, but he even managed to add humour to a tough story about his feelings when diagnosed and telling his kids ‘daddy’s got cancer’. It made a lasting impression on me and put my small worries about starting a new job into perspective. It also really helped me understand why we do what we do. Continue reading

Is offering abiraterone before chemotherapy a ‘no-brainer’? Then why is NICE considering rejecting it?

Alexis Wieroniey, Campaigns Manager

Alexis Wieroniey, Campaigns Manager

Our guest blogger this week is Alexis Wieroniey, Prostate Cancer UK Campaign Manager, who’s been closely following NICE’s decision whether or not to approve the life-extending drug abiraterone for use before chemotherapy.

Here Alexis looks at the some of the issues that are holding up getting this drug into the hands of the men who need it. Continue reading

The harsh reality of withholding enzalutamide – from the men who know

If you haven’t already read about the latest nonsensical decision from NICE on the life-extending drug enzalutamide, I’d urge you to read Drew’s blog about why NICE have got it wrong. If you can make sense of their decision, you’re a better man than me.

Thankfully, our push to get men and women to comment on the NICE public consultation is cracking on a pace, and there’s still time to register your views. To help give a full picture of why we’re fighting NICE’s decision, I’ve asked Sandy Tyndale-Biscoe and Hugh Gunn from Tackle to write a guest blog about their views and experiences of this drug and NICE’s controversial decision. Continue reading