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

Expert insight: Leading prostate cancer scientist explains hottest topics at national cancer research conference

Earlier this month the UK’s biggest gathering of cancer experts took place in Liverpool – the NCRI cancer conference. We sponsored a session and went along to represent the organisation, meet experts and hear from the cutting edge of cancer research. But we also wanted to find out what other prostate cancer experts made of it.

Dr Hayley Whitaker is the lead scientist of the Biomarker Initiative at the Cambridge Cancer Centre. And she’s fast becoming a leader in the field of prostate cancer biomarker discovery. We’ve been working with Dr Whitaker for a while now and really admire her scientific ability, as well as her enthusiasm for spreading the R word (research)  to people who don’t have a science background. So we asked to keep her eye out for the hottest topics and most interesting discussions. Her report is this week’s guest blog.

Dr Hayley Whitaker

Dr Hayley Whitaker

 Dr Whitaker: “Professor Richard Marais, co-Director of the Belfast-Manchester Movember Centre of Excellence, chaired the tenth National Cancer Research Institute (NCRI) meeting. And it was probably the best one yet.

“In the last few years, there’s really been an explosion of information available about cancer genetics, from individual projects to sequence tumour DNA to the work of the International Cancer Genome Consortium (ICGC) – an international effort to understand the DNA sequence of 50 different tumours, including prostate cancer, and how they’re translated into cell behaviour. The DNA inside cancer cells is often different to the DNA inside normal cells and can give us important clues as to how the cancer survives and grows. So studying the sequence of tumour DNA can help us spot those differences.

“This year, the NCRI meeting addressed some of the questions the whole cancer research community is asking such as: how do we use this data to best improve patient care? Many research groups are now using information like this to see how tumour DNA changes during treatment, and what that means for how well the patients will respond to the medication. These DNA changes are really important because as Professor Tim Maughan (Oxford) said, in reference to how quickly cancer cells can evolve, ‘It took us nine years to invent the drug and it took cancer nine weeks to work out how to beat it’. That quote has been called the best truism of the conference.

“And nowadays we don’t even need to go right into the depths of the tumour to find out how its DNA changes during treatment. Professor Caroline Dive (lead researcher in the Belfast-Manchester Movember Centre of Excellence) led a session where the speakers showed how they could find and track changes to tumour DNA circulating in the blood using a simple blood test. This offers a fantastic opportunity to monitor disease without invasive tests, but there may be extra technical challenges to using this system in prostate cancer patients. This is because prostate tumours release less DNA and fewer tumour cells into the blood compared to lung and colon tumours where much of the pioneering work was done.

“Professor Johann de Bono (Director of the London Movember Centre of Excellence, based at the Institute of Cancer Research) is using tumour cells circulating in the blood to monitor response to prostate cancer treatment. He reported on the early findings of the olaparib clinical trial for treating men with advanced prostate cancer. At this stage of the disease the mechanisms that normally repair DNA when it gets damaged become less efficient or stop working altogether. Olaparib is one of a class of drugs called PARP inhibitors, which target cancer cells with increased DNA damage and kill them. Overall patient responses to olaparib treatment have been very promising, with some patients showing complete removal of tumour cells in their blood. The team are now working to determine which patients are likely to benefit from olaparib treatment by sequencing the mutations found in their DNA.

“The role of DNA damage in advanced disease was a key theme in the prostate cancer talks, with Professor Karen Knudsen (Philadelphia, USA) presenting a comprehensive study on DNAPK. DNAPK is a protein that links signalling through the androgen receptor (a key driver of prostate cancer growth) to mechanisms for repairing damaged DNA. Dr James Knight (Oxford) also presented promising work on a new way of detecting damaged DNA that could one day be used in patients with advanced prostate cancer to tell when their DNA becomes damaged. This would allow them to be treated at the right time with the right drug, such as olaparib.

“With the big move toward grouping tumours according to their genetic and molecular information, there was also a clear message that we should be careful not to throw the baby out with the bathwater by forgetting what so-called ‘cancer stem cells’ (which are believed to be the first cells in a cancer), can tell us. Professor Luis Parada (Dallas, USA) demonstrated that in a disease called glioblastoma multiforme, ‘cancer stem cells’ may be important for treating cancers effectively.

“There are many groups working on prostate cancer stem cells too, not least Professor Norman Maitland (York). At the moment we tend to focus on removing the bulk of a cancer and detecting the genetic changes in these numerous cells, whereas Professor Parada suggested that it might be important to focus more efforts on identifying the genetic changes in the small number of cancer stem cells. This would mean we can kill these cells too and stop the cancer from re-growing after treatment.

“In a later session, Professor Manuel Salto-Tallez (Researcher in the Belfast-Manchester Movember Centre of Excellence, based at Queen’s University Belfast) gave an inspirational talk. He discussed how to routinely combine information about cancer genetics with clinical reports and results from biopsy samples to identify patients with the most aggressive colon and prostate cancers. This is exciting work that needs to be tested further in a study across multiple hospitals, but it signals the future direction for better prostate cancer diagnosis and better patient care.

“By the end of the meeting the organisers were asking for suggestions for topics for next year. Key debates on circulating tumour cells versus circulating DNA and how best to get to the bottom of all the information we now have available about different cancer types still remained hot favourites. This reflects the topics where research is continuing at a rapid pace. All of this bodes particularly well for prostate cancer where there are still big questions around diagnosis of aggressive disease and monitoring disease during treatment that need further research.”

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

Saying the right things: How do party conferences compare across the border?

The political party conferences are really important dates in the calendar for Prostate Cancer UK, especially our Campaigns team. It’s a huge opportunity to push prostate cancer up the agenda with decision makers and tell them about the issues men are facing.

We’ve recently heard from Sophie Lutter about her conference experience this year and the vital role our volunteers play in building relationships with politicians. Our guest blogger this week, Campaigns and Media Coordinator, Lauren Davies is based in our Glasgow office. She’s been a regular at Scottish party conferences over the last few years, but recently went to her first UK conference (albeit once taking place in Scotland!). Here she tells us how different a challenge it was.

Lauren Davies, Campaigns and Media Coordinator

Lauren Davies, Campaigns and Media Coordinator

“Along with colleagues from across various departments, and some truly excellent volunteers, I attended this year’s Lib Dem conference in Glasgow.

“For me it was really interesting to see the differences between the UK and Scottish party conferences, and to note the additional challenges that arise from the different scale and the types of attendees at the UK conferences.

“Surprisingly the size of venue  isn’t vastly different as there are still large numbers of exhibitors at Scottish conferences, and there tend to be many more charities and organisations there. But there is a big difference in terms of numbers of politicians.

“To give you an idea, the UK parliament has 650 MPs compared to the Scottish Parliament’s 129 MSPs. The majority of politicians in Westminster are split across the three main parties whose conferences our Campaigns team would attend – Conservative, Labour and Lib Dem. But in Holyrood politicians are divided into four main parties – the Scottish National Party, Scottish Labour, Scottish Conservatives and Unionists, and the Scottish Liberal Democrats.  This means that each conference is smaller and therefore our Campaigns team in Scotland have a smaller target audience to focus on.

“A clear upside of this is that we can pay more attention to detail when preparing. We can nail down what we want to talk to them about before we go and have much more detailed notes on previous involvement with specific politicians. And we can generally recognise all of them as we’ve met them numerous times! You just can’t do that at bigger UK conferences.

“UK conferences are attended by politicians and delegates from all four nations of the UK… As a result, it’s much harder to ensure we are saying the right thing to the right people”

“We can also be sure that the campaign messages we’re trying to get across about Scotland are fine for the vast majority of politicians and delegates who are there. However, UK conferences are attended by politicians and delegates from all four nations of the UK – so our usual approach of keeping an eye out for MSPs does not quite work. There are MPs, Members of the House of Lords, Councillors, AMs, MLAs and Prospective Parliamentary Candidates to meet and influence as well!

“As a result, it’s much harder to ensure we are saying the right thing to the right people. Our messages need to be tailored to suit whichever of the four nations (and four separate health care systems) we’re targeting. For example, there would be little sense in speaking to English, Welsh, or Northern Irish MPs about the Scottish Medicines Consortium (the body that recommends which new drugs should be made available on NHS Scotland). Or to MSPs about Be Clear on Cancer (an awareness campaign led by Public Health England). I definitely had to do more swotting up on all of our messaging than usual!

“It is a challenge, but the evidence suggests that we are increasingly up to this challenge. Prostate Cancer UK has had great success at the Scottish conferences over the years. We’ve secured support and follow-up actions from the First Minister, the Deputy First Minister, the Health Secretary and Shadow Health Ministers for our key campaigns.

“And at UK party conferences we’ve won the support of the Prime Minister, Deputy Prime Minister and key Government Ministers and shadows from all parliaments and assemblies too. Proof that we are increasingly getting this right.

“We know our stand and messaging this year hit the back of the net with Lib Dem delegates as we won the award for Best Charitable Stand. And we won the same at the Labour conference the week before. So our style as well as our substance was clearly recognised.

Deputy Prime minister Nick Clegg signs for Men United

Deputy Prime Minister, Nick Clegg signs for Men United with volunteer, Terry Potter

“From attending the Lib Dem conference, and hearing from colleagues who attended the Conservative and Labour ones, it’s clear it has been worthwhile in helping us engage with politicians and other organisations. An impressive number of politicians signed up for Men United. And in doing so they pledged to help with follow-up work for our latest campaigns on inequalities for men with prostate cancer.

“We have the photographic evidence so they can’t back out now!”

It started with a ‘tache. Now our love affair with rugby league is getting serious.

From moustaches to Manchester United and badges to barbers shops, Prostate Cancer UK’s presence in rugby league is on the rise. Our Sports PR Manager Gary Haines reports from the touchline on the bromance of the year.

Gary Haines, Sports PR Manager

Gary Haines, Sports PR Manager

Recently, North West rivals Wigan Warriors and St Helens locked horns amid a cauldron of noise as the curtain came down on a compelling 2014 Super League season at Old Trafford – and we were in amongst a 70,000-strong crowd. Invited up by our rugby league friends, we were there to meet new faces and pave the way to working even more closely over the next year.

Wind the clock back 12 months and Prostate Cancer UK’s presence in the sport was fleeting at best. Conversations had been exchanged and ideas tentatively bounced around, but when Sky Sports rugby league presenter Bill Arthur got involved during Movember last year the tide turned.

Sky Sports rugby league reporter, Bill Arthur

Sky Sports rugby league reporter, Bill Arthur

Bill, a touchline, studio and commentary box stalwart, was diagnosed with prostate cancer in January 2012 by chance. A decision to move house and the mortgage paperwork that followed triggered a chain of events that led to the life-changing news in his doctor’s surgery.

These days Bill is a passionate advocate for Prostate Cancer UK and the driving force behind a startling upturn in our presence in the sport. Thanks to him our Man of Men badge has become a staple part of the rugby league presenters’ wardrobe.

And after he started wearing one and giving them out, the icon became the talk of the town. People wanted to know what it was. There was such a buzz about it that Bill’s executive producer, Neville Smith, (who would later complete Ride London for us) suggested Bill answer that question on TV.

A few days later Bill was at our London Bridge office interviewing Director of Fundraising, Mark Bishop. He also quizzed Leeds Rhinos duo Kevin Sinfield and Jamie Peacock as well as Jon Wilkin and Paul Wellens from St Helens about why they were wearing the badge. The feature was broadcast ahead of the rivals’ game with Bill and anchor, Eddie Hemmings, also speaking about their personal experiences of prostate cancer.

Partnerships were forged with League 13 (the players’ union body) and conversations started with clubs up and down the country. And it didn’t stop there. The then-England skipper Sinfield got behind the Men United v Prostate Cancer campaign and a host of star names followed in his studmarks. Men like Wigan captain Sean O’Loughlin, Leeds stalwart Peacock, St Helens skipper Paul Wellens and many more.

As the season rolled on the badges became a prerequisite of the coverage with new faces immediately signed up by Bill. On our side, emails turned into phone calls, and then into meetings as we started to embrace the potential of the sport.

The strong heartland of rugby league is in the north of the country, with a couple of exceptions in Catalan Dragons, located in the south of France and London Broncos. Top-flight teams from Yorkshire, Greater Manchester, Cheshire and Merseyside bring a sense of real regional rivalry to the table, and offer us an opportunity to reach out into communities at the same time and reach men and their families in new and innovative ways.

Take Widnes Vikings. Brian O’Connor , the Vikings’ Marketing Director, watched with interest when Sky Sports transmitted the Prostate Cancer UK feature and invited us to meet him and his family when Widnes were entertained by London Broncos. By the end of a productive chat over dinner he was won over – and so were we. Next season the club will have the Prostate Cancer UK logo on their shirts as part of a charity partnership.

Rugby and football stars pop in for a trim and sign for Men United

Sinfield, meanwhile, had suggested we get in touch with his local barbershop in Oldham, where barber Steven Palmer had asked for a box of badges to put on the counter. But he wasn’t the only rugby league ace on the books – far from it. Enter St Helens’ Mark Flanagan, son of Terry Flanagan, former Great Britain man and now Chairman of Rugby League Cares, the charitable arm of the Super League.

Another England sporting international, former Manchester United man Paul Scholes, also an Oldham native, was a regular in the shop too. A perfect media storm was brewing, and in late July the three VIPs drew national television, radio, newspaper and online media to the barber shop. They were interviewed about their support of Prostate Cancer UK and took the Men United test on camera.

The story ran across Sky Sports News for two days with branding and badges prominent and Prostate Cancer UK given strong mentions. There were also features in The Sun and talkSPORT amid a sensational period of coverage.

And we’ve forged contact with the RFL via Rugby League Cares and our Community Engagement Manager, Chris Carter, met Flanagan senior and appeared on Sky Sports magazine show Boots ’N’ All.

For a sport that was arguably well off our radar, a lot has happened in a year. And that brings us to the final at Old Trafford.

Sky Sports rugby league team

Sky Sports rugby league team: Barrie McDermott, Bill Arthur, Terry O’Connor, Phil Clarke, Sam Tomkins and Mike ‘Stevo’ Stephenson

Bill’s generosity knew no bounds when he hosted me, Chris Carter and our Deputy Director of Communications, Alison Day at the final. He started us off with a tour of Sky’s inner sanctum, tucked away at the back of the club’s West Stand car park. We met Eddie Hemmings, long time broadcast colleague Mike ‘Stevo’ Stephenson, and all the pundits including Sam Tomkins, back from New Zealand and, naturally, badged up as soon as he got out of his car.

What impressed us more than anything was the knowledge about prostate cancer and the enthusiasm shared by the panel. Here was a group of former players really behind the cause, all of whom were happy to help us however they could, all of whom had taken time out of their busy schedule to meet us. As kick-off approached we headed to our seats – Bill had got us into the executive suite where we chatted to dignitaries from the RFL, passing on badges wherever possible.

Looking back to how it all started with Bill’s Movember ‘tache, it was an amazing privilege for us to get the opportunity to mingle with the great and good in the game on such a prestigious occasion. And after seeing St Helens edge out their rivals in an incident-packed affair it was great to see Wellens and Flanagan, a man who made us all a round of tea in the barber’s shop back in July, celebrating.

And our conversations are set to continue as Prostate Cancer UK charges down an exciting new sporting path.

Hot off the press: volunteers help to score party conference success

David Cameron signs for Men United at the Conservative party conference

David Cameron signs for Men United at the Conservative party conference

Over the last month, our Policy and Campaigns team and dedicated supporter campaigners have been travelling the length and breadth of the country to attend the three main UK political party conferences. This year, our campaigning was focused around our five inequalities: five solutions report that we launched in Westminster and Holyrood in the summer. The report highlights the inequalities that men with and at risk of prostate cancer face and underpins our Men United v Prostate Cancer campaign.

We’ve already recorded some notable successes since publishing this report. For example, the Westminster Government launched a new pilot strand of the Be Clear on Cancer awareness campaign in London, particularly aimed at raising awareness of prostate cancer risk in Black men, while the Scottish Government announced that robot assisted prostatectomy would be made available on the NHS in Scotland, with the first patients set to benefit early next year.

While these early successes are extremely encouraging, this isn’t the end of the story, which is why we need to attend events like the party conferences.

They’re a key part of our influencing activity – a chance to meet with politicians, people planning to stand for election next year (prospective parliamentary candidates) and members of the House of Lords. It’s an opportunity to raise the profile of prostate cancer  at the highest level and highlight the inequalities men with and at risk of prostate cancer are still facing. The relationships we build with politicians at party conferences are vital in achieving our goal of improving care and support for men with prostate cancer.

One thing that definitely struck me was how important it was to have our volunteers with us. I was at the Liberal Democrat conference with volunteers Terry Potter and Rod Wiltshire, who did a fantastic job getting the politicians onside. And Susan Childs, Roger Hones, Jon Newman and Robin Porter were also brilliant at the Labour and Conservative party conferences. The very down-to-earth, personal way that they told politicians their stories and gave their perspective as someone living with or directly affected by prostate cancer really added colour and strength to our message. And I have to say that watching Terry turn the charm on Nick Clegg, and exchanging some man-to-man banter as he signed for Men United really made my day!

Volunteer Rod with Campaigns and Media Coordinator Lauren Davies

Award winning: Volunteer Rod Wiltshire with Campaigns and Media Coordinator Lauren Davies

We took a stand kitted out like the Men United locker room to each conference and handed out personalized Men United shirts for a suggested donation to MPs and other politicians who signed for the team. The stand was really eye-catching and helped gain us a lot of attention and support – we even won awards for it at both the Labour and Liberal Democrat party conferences!

You can have a look at how exciting our stand was and how many politicians the supporter campaigners signed in our storify feed: https://storify.com/ProstateUK/party-conferences-2014

 

 

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.”