John Neate Chief Executive, The Prostate Cancer Charity
Vivienne Parry: Welcome back. I have to tell you that I have been doing the Peeball thing. Has anyone else been doing the Peeball? Hands up. I've got the wooden spoon at the moment - 1 min and 30 seconds. But it was with one of those guns and I have to say that the only thing I use for target practice with those guns are the squirrels in my garden. And the Peeball was much smaller and that's my excuse.
I've also been struck whilst talking today as to how the definition of young has become elastic. It's very clear that all of you are young. So let me introduce to you the young man of The Prostate Cancer Charity, John Neate - the Chief Executive of The Prostate Cancer Charity. How do we get the best for men?
John Neate : Thank you very much Vivienne and good afternoon everyone.
Well, my task in this after-lunch spot is to raise you all into such a frenzy of enthusiasm that the effects of food and the onward march of sleep will be completely neutralised! At least if I fail in that mission, it's good to know that I'm only scheduled to speak for around 15 minutes.
Now any man in his right mind wouldn't plan to marry off one of his daughters on one weekend and to speak at the National Prostate Cancer Conference just 1½ weeks later. My life over the past few weeks seems to have been scheduled - day and night - to the minute. There was one unforgettable moment a week ago, sitting in my office at home…. . In one hand I had the detailed media plan leading up to today's conference. In the other, the detailed schedule for the wedding. My fear throughout has been that I'd deliver the father of the bride speech to you guys and tell the wedding guests more than they ever imagined they wanted to know about prostate cancer!
Fortunately, I did deliver the appropriate speech at the wedding reception, so hopefully I've got the right one for you today!
Could I just ask quickly if you could please put up your hand if you were at the conference last year?…. .and how many of you are here for the first time? Ok, about 50/50.
For those of you who were here last year, you'll recall that I tried to give a balanced assessment of the state of prostate cancer - encouragement at the progress which had been made in moving prostate cancer out of the shadows of neglect - but pointing to the mountain that still lies ahead of us.
I paid tribute to the Government for prioritising prostate cancer and to the sheer commitment and hard work of so many health professionals in delivering high quality care. The speech also contained some tougher elements, though. For example, I talked about the lack of understanding by many GPs of the Government's Prostate Cancer Risk Management Programme and the problems that created for men looking for advice about prostate cancer. I tried to bring to life the real experiences and anxieties of a man going through a diagnosis of prostate cancer and the complexities of treatment choices - often unsupported. I talked about the need for Specialist Prostate Cancer Nurses in every prostate cancer treatment centre across the UK .
Looking back, I wouldn't change anything I said in that speech and yet, having worked in this area for one more year, I felt the need today to be less satisfied with the rate of progress achieved, to be tougher in my assessment and to issue a more urgent call for us to work together in making change.
Some of you will remember the release earlier this year of the National Audit Office report, ‘Tackling Cancer: Improving the Patient Journey. ' That report measured the NHS experiences of patients with four common cancers - prostate, breast, lung and colon. Men with prostate cancer reported a worse experience than other patients in 54 out of 80 - or nearly 70% - of the areas covered by the survey. That is appalling.
The publication of the report was generally treated positively by the media. I remember a certain Chief Executive of a very large cancer charity, sitting on the sofa of one of the morning news programmes. I recall his positive assessment and found it easy to understand why the media reacted in the way it did. Now I don't really criticise that Chief Executive too strongly for his approach. His charity is concerned with all cancers and, overall, the NAO report contained good news. But my concern - our concern - is, quite specifically, prostate cancer.
The NAO findings on prostate cancer were, and still are, a huge concern - with a widening overall gap in satisfaction ratings between prostate cancer - and other cancer - patients.
This morning you heard the results of a more recent survey carried out by The Prostate Cancer Charity - ‘ The First National Survey: The Real Man's Prostate Cancer Journey' - covering nearly twice as many men with prostate cancer as the NAO report. This has served to reinforce powerfully the extent of the problem we face.
Let's be clear that the survey generated a lot of positive responses. Men often singled out doctors and nurses who gave them fantastic care. Let me also be clear that there are thousands of health care professionals up and down this country who are working their socks off to deliver good care and to improve services. You know that and I know that.
But we also know that for many men, the experience is very different - and completely unacceptable. Let me just briefly rehearse some of the key statistics:
• Obstacles at the first stop - nearly two thirds of men going to their GP with concerns about prostate cancer - but not yet having symptoms - weren't properly counselled in line with the Government's Prostate Cancer Risk Management Programme
• Second stop: biopsy - nearly one in five men weren't given enough information about the procedure and over 40% experienced moderate to severe pain
• And then to diagnosis - over a third of men weren't given access to a specialist nurse and 43% weren't given any written information about the disease, or about treatments and side effects. Sadly, one in five men felt they were told of their diagnosis with little or no sensitivity and nearly a quarter of men who were alone when their cancer diagnosis was broken, wished that they'd had someone with them
• And how about decisions on treatment? - a quarter of men didn't feel that the hospital specialist or nurse gave them enough information about the treatment choices available - and 15% didn't feel they had made informed choices
Enough of the statistics - numbers can be exhausting. Yet at the centre of these numbers are real men - real individuals with real feelings and real anxieties and real families. We owe it to them to strain every muscle to change this situation urgently.
In the next session, we'll be hearing from Professor Mike Richards, National Cancer Director, with his assessment of prostate cancer progress and how well the issue is registering on the NHS radar screen. Having worked with Mike over the past three years, I am completely convinced of his own personal and professional commitment to tackling prostate cancer.
Three years ago - in response to a request from the Prostate Cancer Charter for Action - a powerful coalition of charities and professional organisations - the Government agreed to set up a Prostate Cancer Advisory Group. The Group, chaired by Mike Richards, has begun to tackle a wide range of issues, including the creation of a dedicated internet ‘signposting' service to prostate cancer information - UK Prostate Link, the development of a pilot public awareness campaign, training for multidisciplinary teams and decision aids to help men through the complex treatment choices in prostate cancer, to mention just a few.
But the wheels grind slowly and despite some tangible outputs, it's important not to confuse process with real progress, - progress that is actually felt by men with prostate cancer. It is easy to become seduced into thinking that things are happening faster than they are.
Many things still need to be done to bring about the improvements we all want to see in the way prostate cancer is tackled. We must address the experiences of men at every point on their prostate cancer journey.
The Prostate Cancer Charter for Action launched its second phase of demands for improvement at the House of Commons on Monday. I fully support those demands and have been part of the process of shaping them.
Today, I'd like to outline four particular key issues - areas largely mirrored by the Prostate Cancer Charter for Action - areas which, if I were forced to prioritise, are ones I believe are of central importance in improving the experience of men with prostate cancer and their families.
Firstly , we must recognise the inevitable limitations in the ability of GPs to counsel men about prostate cancer concerns. The prostate cancer workload for an average GP - important though it may be - will always pale into relative insignificance compared with, for example, heart disease or allergies.
We should certainly continue to raise the standards of GP counselling, but we should also come at the problem in new ways - with some lateral thinking. We need to see men's health issues tackled in a purposeful and planned way in the community. It's time to establish across the country, dedicated primary care and occupational health clinics where men can discuss prostate cancer concerns in the context of skilled overall health counselling and surveillance - properly tailored to men's behaviour and psychology.
Innovative models - and some already exist - for providing supportive and effective men's health services should be urgently reviewed and the best adopted in a programme rolled out nationally.
Secondly , the Government has said that it will introduce a national screening programme for prostate cancer when a reliable test is developed. A perfectly reasonable position, but it is passive, and passivity is not good enough. We know that work is going on around the world to develop potential new and more reliable tests for prostate cancer - for example, at the Institute of Cancer Research, the University of Sheffield and the University of Sunderland, here in the UK, the University of Michigan in the US, the University of Heidelberg in Germany, the University of Turin in Italy. The list goes on.
We call on the Government to take a proactive stance - to convene an international conference of scientists working on potential new tests, to focus attention on the most productive areas of research. Government should then be prepared to take vigorous steps in bringing pressure for fast tracking of new test development - hastening the day when a national screening programme can be introduced.
Thirdly , we know that information is vitally importance to a man faced with a diagnosis of prostate cancer. We also know from the NAO report and from our own survey results that this is often a major gap in prostate cancer support. Yet there are some relatively simple solutions which don't require every individual NHS Trust to have to devote precious time to creating its own leaflets.
The voluntary sector produces high quality literature on every aspect of prostate cancer - informed by the detailed experience of thousands of men affected by the disease. Many cancer centres use that literature already. We call on the Government now to make arrangements to buy in that information from the voluntary sector and to make it readily and consistently available in all prostate cancer treatment centres.
Fourthly , specialist nurses play an essential role in providing information and emotional support to men affected by prostate cancer. Our evidence tells us that. They have the time and expertise to answer the myriad of questions that arise after a diagnosis of prostate cancer. They can help men to navigate the complexities of treatment choice and of NHS services. Yet the First National Survey told us that nearly 40% of men didn't get the chance to speak to a specialist nurse around the time of diagnosis.
We call on the Government to appoint specialist prostate cancer nurses in every prostate cancer treatment centre as a matter of priority.
We've heard this week from the leaders of the main political parties, outlining their support for the Prostate Cancer Charter for Action and for the cause of prostate cancer. That is a first and I welcome it. But encouraging words alone are just that - an encouragement. For them to be more than that, they have to be accompanied by urgent action that delivers hard results.
I believe that there is now an unprecedented opportunity for the battle against prostate cancer to be propelled to a completely different level. It's obvious that the recent signs of progress - in particular, increased political, public and media interest - are accelerating in their intensity. It's as if the coals in the fire have been getting hotter and hotter and suddenly they burst into flame. I think that is exactly what is about to happen in the case of the cause we're here discussing today.
We have the pieces in place. We have men with prostate cancer and their families ready to speak out. We have prostate cancer support groups. We have health professionals. We have charities speaking with a common voice. We have the beginnings of interest from the trade union movement. We have businesses on the cusp of supporting prostate cancer for the first time.
…and we have the support of our political leaders. I say now to Tony Blair and I say to Patricia Hewitt, the Health Secretary, and I say to politicians from across the political divides. You have now a unique possibility to make a difference. You have three - maybe four - years ahead in this Parliament. You have before you the opportunity to make this the ‘Parliament for Prostate Cancer'. Seize that challenge, and the experience of men with prostate cancer will be transformed for the better and your contribution will be recognised for generations to come. Fail that challenge….well let's not contemplate that. We won't let you.
Thank you.