Monday, 28 November 2011
First stop was a day at the races, at Haydock, with the highlight being, of course, the Betfair Hairy Mo Chase. Betfair, one of the committed partners of The Prostate Cancer Charity, had organised a fantastic day, and engaged the whole racing world behind it. I was lucky enough to present the trophies to the winners and judging the best turned out horse - given that I am now an expert on grooming, I felt quite well-placed to do this. Some of the more prominent Channel 4 presenters were proudly showing off a hirsute look to the nation. Racing Post journalist David Ashforth (who is sporting a very fine Mo himself), who has been diagnosed with and treated for prostate cancer, also joined us on the day. David has been instrumental in rallying the racing community behind the cause, writing frequent open and honest pieces about his experiences. Through his tireless efforts, David has helped us to reach thousands of men, who need to know about this disease, through the second biggest spectator sport in the UK. We are really keen to continue to build our profile through this route as we know it is a really effective way of getting information about prostate cancer out to thousands of men who are at risk of this disease across the UK. I am really pleased that David has become one of our Ambassadors and continues to do so much for the cause and the Charity.
Next on the agenda was a quiz, organised by the Charity’s very own ‘Mostesses’. On the face of it (yes, the pun is absolutely intended), Movember is one for the boys. But the event showed me just how effective Mo Sistas can be in raising money and awareness. The quiz - which was so successful we had to turn people away - showed that Movember is all about the girls, and the boys. Since joining the Charity, it is clear to me that prostate cancer is a big issue for women. More than one in four of the calls to our Helpline are from women - and we know they can be a big influence on getting men thinking about and acting on their health concerns. That is why Movember would not work without the support and full participation of the Mo Sistas - not least because they have to put up with us fellas being furry faced for the month.
As well as my bristles ‘mo-ing’ from strength to strength, this year’s campaign is also making ground as the most successful ever. The number of Mo Bros and Sistas out there is well over twice the number who took part last year. In itself, this is a fantastic success because it means more people are thinking about men’s health issues and the increased awareness that it brings will save lives. More people participating also means that more money can be raised to make a significant difference for men and their loved ones through direct investment in prostate cancer research and services. Over the past few weeks I have met loads of Mo Bros and Sistas and there are many reasons why they participate. Some just want to have some fun, some are doing it because prostate cancer has had a direct impact on them or they may be doing it because they recognise that men’s health issues have for too long not been given an adequate profile. Another appeal for some is that they are participating in a global campaign which, despite the different ways that healthcare systems are organised, highlights that men all across the world are facing the same challenges when it comes to their health and that there is a real desire to make life better for them.
As the week drew to a close, I attended my first gala parte in London. There was the same sense of celebration and community, with people coming together. I am getting a little sad about parting company with my Mo, and I am determined to give it a good send off. In the meantime, we will be out there meeting with more Mo Bros and Sistas at gala partes across the UK (more on those next week). As they say ...... there is Mo rest for the wicked!
Thursday, 17 November 2011
Last week I took my Mo on the road, for the first time. (Clearly, it would have been difficult to leave it behind). We hit Liverpool, attending the conference of the National Cancer Research Institute (NCRI), which brings together the major funders of cancer research in the UK. The Prostate Cancer Charity is the newest - and twenty-second - proud member of the organisation, which supports partner bodies to share learning, develop common plans and avoid unnecessary duplication of efforts. We are breaking ground, by becoming the first men’s health Charity to make it into the NCRI, which aims to make sure that patients get the maximum benefit from cancer research in the UK.
Membership alone signifies that we have become a ‘major funder’ of research in the UK. This is in no small part thanks to the efforts of the Mo Bros and Sistas over the past few years - enabling us to channel vital funds into credible, valuable research. We are committed to working with Movember to continue to significantly increase that investment for the long term. This is why everyone who sports a Mo, or supports the men in their lives, can say they are helping us get closer to improving diagnosis and treatment options for men.
The main reason for me attending the conference was to chair a session on improving research into 'survivorship'. There are currently some 250,000 men living with the disease in the UK - and this will rise as diagnosis and treatment improves. It is vitally important that high quality, and consistent, services are available for all of these men - wherever they live. This is a disease which can have a huge impact on men's lives - and their loved ones - from depression to a loss of libido to the emotional and pysical changes caused by hormone therapy. All men deserve the best care and support, from the point of diagnosis, all the way through the journey to treatment and beyond. This is where the army of Mo Bros and Sistas comes in again.
The provision of high quality survivorship services is the other priority investment area for the Charity with the money that is raised through Movember. We will be building a programme of new and expanded services to ensure that there are high quality, evidence based services in place to help men live the fullest lives possible with and beyond prostate cancer.
At the session we heard about a new service the Charity is providing to men who are suffering fatigue as a result of their cancer and the associated treatments. It is a common experience that cancer can leave men feeling exhausted and the inability to undertake everyday tasks can extenuate the impact that cancer has on their lives. The new service provides support and coping techniques to minimise the impact of cancer fatigue and, as it is a new service, we are evaluating the results to ensure that it has the right impact.
Following the blog last week, there were a couple of requests for photographic evidence of this Mo of mine, which I have to say has become somewhat technicolour. Every colour - from red to blonde - in fact, apart for the colour of the hair on my head. At least it has attained some depth and is no longer in danger of being seen as a gravy stain. So, my picture went up onto the Charity’s Facebook page and it was great to see that it prompted fellow Mo Bros to do the same. You can see the evidence here. The eagle-eyed will have spotted that I have also changed the banner of this blog to reflect my new look.
I will put up a new picture this week so that you can see how to the Mo is coming along. After all it is really important to keep up the 'Mo-mentum'!
Tuesday, 8 November 2011
After much deliberation, and some consultation, I opted for the ‘Desperado' look, in a futile attempt to make myself look a little more dangerous. Unfortunately, the resulting, surprisingly strawberry-blonde ‘tache’ means I look more like Clyde the orangutan than Clint Eastwood. However, all vanity aside, embracing the hirsute look is all in the name of a vitally important cause. Movember is nothing short of a phenomenon, and a hugely successful one. Beyond the humour, the campaign is a highly effective way to promote awareness of prostate and testicular cancers. Last year Mo Bros and Sistas raised more than £10 million in the UK alone, to ‘change the face of men’s health’. As the proud UK beneficiary partner of Movember, The Prostate Cancer Charity is channelling these funds into much-needed research and providing enhanced services for the 250,000 men, and their families, currently living with prostate cancer.
I piloted my fledgling Mo at the House of Commons last week, nothing like starting at the top. As well as signing up some MPs to Movember, the visit was a great opportunity to discuss some of the current issues around prostate cancer. In particular, I was updating MPs on the disappointing news that NICE will not be undertaking a quality standards audit for men with prostate cancer until 2013. We know that the experiences of men with prostate cancer are way too varied across all aspects of the prostate cancer journey, from diagnosis all the way to life after treatment. We need quality standards so that men can check they are receiving the best care, and being offered the right choices - wherever they live. I am urging MPs to support us in lobbying NICE to bring this exercise forward, as well as to support the Charity in starting a consultation of its own, which should speed the process.
Next stop for me and my Mo was a visit to the Colchester branch of Keyline Builders Merchants, one of the Charity’s most committed corporate partners. We felt very much at home here, as we were in good company, with hundreds of their staff embracing the month. Meeting with Managing Director Andrew Harrison, who has been a real champion of our partnership, it was great to hear how reciprocal the benefits have been. After voting to keep the partnership, staff have raised thousands of pounds for the Charity. Keyline has also been able to deliver a health awareness message in a male dominated environment to the very people who need to have prostate cancer on their radar. What was really exciting was hearing how the partnership had supported Keyline as a business and place to work, by increasing friendly rivalry and communication between branches when it comes to fundraising for The Prostate Cancer Charity. A highlight of the day for me (and my Mo) was being presented with my very own fluorescent vest promoting the Movember and The Prostate Cancer Charity, which I shall be wearing with pride at any opportunity!
Now that the first week is over, I think we may have made it through the toughest part. My Mo is getting a little stronger every day and the chances of people thinking that I have just forgotten to wash my face are diminishing. I am wearing my Mo with pride and looking forward to our adventures together over the coming weeks. I will keep you posted on our progress and I am already secretly starting to think that it is going to be hard to say goodbye come the end of the month.
It is not too late to join me uk.movember.com .
Thursday, 25 August 2011
In the case of prostate cancer it rings particularly true and apt, with the very survival of men diagnosed with this disease apparently determined by their address in some instances. There is no denying that increased media and political engagement and attention has placed prostate cancer higher up the agenda, and improved outcomes for men. But, there is still a long way to go.
One of my main priorities as Chief Executive is to fight the lingering injustice around this disease. To give an example, statistics revealed this year showed that despite a gradual decline in prostate cancer deaths over the past decade, a man’s odds of being successfully treated, and spending more years with their loved ones, is in direct relation to where he lives. For instance, there are twice as many deaths in Sandwell than Kensington – which by any standards is unacceptable.
We know there are also huge variations in a man’s care, support and treatment. Although some of the indicators of the 2010 National Cancer Patient Experience Survey showed improvement, there was massive disparity between trusts in numerous ways. Information, which is critical to men faced with a number of treatment options, was available to only half of men at the worst performing trust, and 95 per cent at the best. All of the men at the highest performing trust were able to easily contact their named specialist nurse, who provide a lifeline to men throughout their treatment, whereas at the worst this was around half of that.
This is the most dire kind of regional variation – and needs to be tackled on every front. This Charity is not in the business of highlighting problems without presenting the way forward alongside it.
One thing we need to see is a comprehensive clinical audit for prostate cancer to redress the profound gaps in information about services, waiting times, standards of care and outcomes for the disease which we see at the moment. Such data is essential for men if they are to receive the treatment they deserve, for clinicians to share best practice and for the impact of factors such as ethnicity on how and when men present with the disease to be understood. Geography should simply not enter into the equation. We will actively support such an audit as we believe it can make a real difference to thousands of men every year.
Men should get the same information and choices about the PSA test, treatment options and outcomes wherever they live. This is what I will be pushing for – an end to these variations – and I will be urging everyone with an interest in this disease, and inequity, to join me.
Friday, 5 August 2011
Denton Wilson and Ally Clarke are just two of the individuals behind the statistics, who have opened my eyes to the real impact of the disease on men, and the desire to galvanise others once it affected their lives. I met both men during the recent Ethnic Minority Cancer Awareness Week. In their own ways, they are each moving mountains to break down the remaining taboos and lingering fallacies that still surround the disease in the African Caribbean community – whether it be misunderstandings about how the disease is diagnosed to the effect it can have on masculinity.
I accompanied Denton as he addressed a crucial panel discussion on the potential impact of NHS reforms at the House of Commons with the All Party Parliamentary Group on Cancer (APPG). Denton, a professional body-builder from Sheffield, was diagnosed with the disease in his early 40’s. A cancer diagnosis at any age is undoubtedly a huge shock, but for Denton, being diagnosed with what was at the time, a mysterious disease at an exceptionally young age – his shock was confounded. Following treatment, he has now confronted his cancer, as well as the barriers which surround it in his community, with an awe-inspiring determination (which led to a recent profile piece on Channel 4’s Five Minute Wonders – series of short films profiling charity volunteers). At the discussion Denton asked the panel what the Government was doing above and beyond its general awareness work to let African Caribbean men know about their increased risk of prostate cancer, which stands at three times that of white men. I was struck with how important it was for them to hear from someone with such conviction and personal passion, who was unafraid to speak out despite the assumptions of his community – rather than from the ‘official face' of the Charity
I then spoke at the Friends of the Caribbean event organised in the Charity’s honour in Milton Keynes, by the group’s Chairman Ally Clarke, who himself is living with prostate cancer. Ally is determined to get the message out there and he had a captive audience of several hundred people as he told his story, and urged his fellow African Caribbean men to see beyond the myths and overcome their fears about visiting a GP. It was a humbling sight to see so many people come together to help bring about a change in how the disease is regarded in their community.
The week, which was also supported by David Lammy and Chuka Umunna MPs, showed me how important it is for us to continue to work directly with the African Caribbean community, and just how far we have come, through the pioneering work of individuals, in encouraging people to dispel any myths around prostate cancer. It is my hope that in the months and years to come, we are able to continue to challenge the preconceptions about this disease in the community, so that many more men feel able to stand up, fight the misconceptions and show the real face of men with prostate cancer.
Also a final thought I just wanted to highlight an excellent blog I have come across by retired actress turned health buff, Judith Potts. If you do have some spare time it is well worth a read.
Wednesday, 20 July 2011
Before we go any further I should make clear the scale of my credentials as a journo. Before going to college, I was a cub reporter for Mid Anglia Newspapers Group, writing copy for such weekly publications as the Royston Crow and the Saffron Walden Reporter. There was no phone hacking, although I do remember that I once bought some Jammie Dodgers for my weekly visit to the local police inspector. But, I can assure you this was not intended as a bribe.
Like most other people, I have been amazed by the events of the last few weeks. The speed and scale of the ‘hacking’ story has been breathtaking, and was all the more compelling with the advent of Twitter. It is fascinating that one of the fastest-moving and most intriguing media stories of recent years is about the media – you couldn’t make it up! I believe that here is an opportunity for some positive change to come out of the negative things that have happened. However, I would argue that despite the nefarious means of the few, the media can be a force for good. It is vital, particularly in a land famed for the freedom of its press, that the ensuing debate on the way forward for the media does not lose sight of this.
Last week I attended the Medical Journalists Association Awards. (At this point, I should say massive congratulations to The Prostate Cancer Charity’s Media and PR Team, which was nominated for Health Charity of the Year for the third year in a row)! The purpose of the awards is to celebrate the work of medical journalists working in the mainstream and specialist areas of print and broadcast media. It illustrated to me that we need to be really careful that we do not tar all journalists with the brush of corruption, when in fact many of them see journalism as a vocation to cast light on injustice, educate people, challenge the status quo with a powerful voice and operate with real commitment and integrity. Although the News of the World may have taken their methods too far, there will always be a place in the British media for revealing hypocrisy and inequity.
Little more than five years ago prostate cancer was shrouded in taboo, men reported the worst NHS experience of all common cancers and recognition of the scale of the disease, which as we know kills one man every hour, was shockingly low. Investment in research was also woeful compared to other cancers, and that is putting it mildly.
Today – although many challenges remain in the bid to do for men what has happened so successfully for women’s cancers – there has been some progress. Men’s experience of prostate cancer has improved significantly. Awareness that this disease is the most common cancer in men in the UK has shot up by more than 40 per cent in a decade, in the general population, but also in men over 50, the group we so need to sit up and take note that prostate cancer is relevant to them.
In the absence of concerted paid for advertising, this progress can, in no small way, be attributable to the support of the media. To give one example, when a potentially seismic research study emerged about the Prostate Specific Antigen (PSA) test, the intelligent and balanced coverage, including a front page story in the Daily Telegraph, was one of the drivers of a full review by the National Screening Committee of its utility as the basis of a screening programme. The media can set wheels in motion like nothing else – and do it with the right intention to champion, challenge and improve. Coverage around the disease, and the Charity, whether celebrity driven or research-focussed, increased by more than 150 per cent last year alone. Even more impressive is that fact that our evaluation tells us at least 40 per cent of men over 50 recall seeing something about prostate cancer in the media each quarter – showing it is having an impact. Tales of them making a life-saving visit to a GP following an article on the disease are legion.
We can never rest on our laurels. As well as keeping up the pressure on awareness, enabling men to take control of their health, we need to keep the disease on the media agenda. In a climate where the psychological impact of prostate cancer on men and their families is not fully understood or supported, men still face barriers to having a PSA test and, critically, not enough investment is made in finding a new generation of test which does not put men at such risk of unnecessary and invasive treatments there is a long way to go.
It strikes me that in the new world that will hopefully emerge from the current crisis there is an opportunity to continue to get the message out there. This does mean that we need to work even harder to not only engage with all journalists but to find new ways of making our messages clear, hard-hitting, as well as informative, whether these are delivered as part of a celebrity-backed campaign to design ‘pants’ for us or as part of a headline-grabbing inequity story. We also need to campaign hard, hand in hand with the media, for the improvements men with prostate cancer rightfully deserve.
Wednesday, 29 June 2011
I have confided in a few close friends and family. The general reaction has been to raise the question ‘why would you want to do that?’. After thanking them for their encouragement, I proceeded to explain that this is something I have always wanted to do.
One of my first tasks as Chief Executive was to stand on the finishing straight of this year’s event. As I watched the sense of achievement of the faces of so many runners, whether they were sprinting or hobbling, I was genuinely inspired and, much to my surprise, that inspiration has stayed with me. My Dad and brother have both run the marathon previously - so it must be at least genetically possible.
The other big reason is, of course, TeamPB. I am so proud that The Prostate Cancer Charity and Breast Cancer Care have come together to be the official charity partners of the marathon in 2012. In the Olympic year too. It is blooming marvellous and I am looking forward to being part of TeamPB (and not just because it is an excuse to wear luminous pink in public), and running with what will hopefully be our biggest ever team. I know I am biased, but it is great to be involved in a partnership between two great charities that has the potential to last long after the marathon.
So, the training has started. It is very small steps on a long journey. I have a programme that I am following (most of the time). I have avoided the first major risk of injury when I had to climb into the back of the wardrobe to find my running gear. I am sure my colleagues will rally round and support my efforts people on the weeks when I think this is the stupidest idea since the invention of the one legged bar stool. I will keep you posted on progress, as well as my blisters, and remember you are being given plenty of warning – I will be asking for lots of sponsorship!
Wednesday, 15 June 2011
As someone who worked in the NHS for many years, I am pleased to see that GPs will not stand alone in commissioning services, but will be supported by other healthcare professionals including hospital doctors and nurses, as well as involving patients. GPs need the space and time to be good doctors and this means they cannot and should not be the sole source of commissioning expertise across the whole system. I am also pleased to see that cancer networks will continue to have an active role as experts guiding local cancer care. Choice can be an important aspect of this, particularly in prostate cancer diagnosis and treatment. A genuine compact between a man and his GP or clinician is essential if he is to choose and receive the right care for him. However, we need a system that provides an equal choice to all, in all parts of the country. The idea of introducing choice into the NHS is certainly not new. It was a key driver in the battle to reduce waiting times ten years ago. That experience showed that choice only works when patients have access to high quality information to support them making decisions through every step of their journey through the system.
Research is one area where swift developments need to be made to ensure new treatments reach those they can help. I am pleased to see it will be a core aspect of the NHS, but hope it does not get bogged down in a focus on short term solutions to short term problems.. I was on BBC Radio Four’s Woman’s Hour on Monday talking about a prospective new urine test for prostate cancer – there is a real opportunity to explore its potential for men. Innovations that may improve a man’s experience and treatment of prostate cancer could be missed if the NHS obsesses on how to assemble its component parts for too long.
Whatever the system that is adopted, a key to success is going to be leadership and that will need to come from across all of the NHS. I have been lucky enough to work with some of the highest quality leaders who were primarily doctors, nurses and other healthcare professionals. These are the individuals who have inspired their clinical colleagues to change the way that they work in order to improve services to patients. I also know that NHS managers will be critical to making the reforms working – they are an easy target for politicians and media but without them change in the NHS will not happen. I was as proud of my work as a manager in the NHS as I was pumping people’s chests as an A&E nurse, and on the good days I knew that in my role as a manger I had made as significant a difference to the lives of patients even if they were not directly in front of me.
Although political scrutiny and debate is necessary to keep the wheels of this change moving in the right direction, we can only hope that politicians channel it effectively to keep this on track. The last few months have made the NHS an even hotter political potato and I am sure there will be a temptation to keep the debate going as it is a pretty effective weapon with which to score political points. However, if the NHS is paralysed for much longer by the debate about reforms there is a very real chance that it will will not save the additional lives it committed to less than six months ago.
Tuesday, 7 June 2011
Yet, although this drug is being fast-tracked by NICE, it may still not be available for some time to many men. We want to see this drug reach those men it could benefit as swiftly as possible. They have very limited treatment options – and simply cannot afford to wait. We are calling on NICE and the Scottish Medicines Consortium (SMC) to urgently ensure that they are able to appraise this new drug as soon as possible, to ensure that guidance on its use in the NHS is available across the UK as quickly as possible so that there isn’t a long gap following licensing.
We have already seen this problem happen. Another drug, cabazitaxel, which can also extend the life of men with advanced disease no longer responding to other treatments, was licensed sooner than was expected and neither NICE nor the SMC have yet completed an appraisal of its clinical and cost effectiveness. This means there is currently a critical gap where cabazitaxel can be prescribed but no guidance exists from NICE or the SMC about who is entitled to receive the drug through the NHS. During this time some local healthcare providers may decide that it is not cost effective to pay for it and men living in that area, who could benefit from this chemotherapy, may not be able to access it – or even be told it exists.
We have already been contacted by men who believe they may be eligible for the to be given the treatment but have not been made aware of it by their GP and the Charity is worried that this could lead to a postcode lottery in terms of access to this drug.
The arrival of these two drugs into the UK should be good news for men with prostate cancer. However the current system runs the real risk of making this a ‘bad news story’. Whilst it is right in a national health service that there should be a clear analysis of the benefits of drugs and we need NICE and the SMC to stick to their word and fast-track the appraisal of this drug. Once abiraterone is licensed, men with prostate cancer will need clear information about whether it is appropriate for them. Furthermore, until guidance is issued by NICE and the SMC, those men for whom any licensed treatment is appropriate need clear information about how they can apply to their local healthcare provider to receive it.
Thursday, 19 May 2011
This blog is a first for the Charity, so do please let me know what you think of it and what you would like to hear more of.
As clichéd as it is, one of the things that has struck me most since I started in the job is the enthusiasm and dedication of those working to make things better for men with prostate cancer and I feel excited to be helping to lead this movement forward.
One of the things that has really helped us to put prostate cancer on the map is the phenomenal success of our partnership with Movember. Through the tireless efforts of Mo Bros and Sistas across the country, we have been able to hugely expand the level of services, information, awareness and research funding we can offer. I cannot wait to experience my first proper campaign and I am secretly looking forward to seeing what my ‘mo’ will look like, and am hoping that my colleagues will be kind in their appraisals of my effort .
The prostate cancer cause has come a long way in recent years. However, it is clear to me that the outcomes for men are far too varied according to where they live and the section of the community that they come from. This has to change. We know which men are at greater risk of getting the disease, yet the health system is not consistently supporting those men to make informed choices. The level of funding for research into prostate cancer has increased but still lags behind other cancer groups.
So, as I lead the Charity on this exciting journey I hope you will follow my blog. I have said it before and I will say it again – it is a real privilege to be doing this job and I love every minute of it.
I couldn’t let this blog go by without just mentioning a few recent successes for the Charity as our very own industry awards season gets underway. Our relationship with Keyline Builders won the best partnership award this year’s Business Charity Awards, and we are waiting with baited breath for the results of the CIPR Awards and the AOP Digital Publishing Awards where the Charity’s Media and PR Team and website have also been shortlisted.
Don’t’ forget, you can also keep up with me on Twitter: http://twitter.com/#!/OwenSharpCEO