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.”

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.

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.”

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

Guest blogger Amy Dyer, Research Analyst at Prostate Cancer UK

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.

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“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

When you need us, where you need us – we’re getting there

So July 2014 marks the one year anniversary of something special. Sorry Prince George – we’ve got candles to blow out too. Since this time last year, with the help of funding from the Movember Foundation, we have been developing support services to reach men where they are – their local community. Continue reading