Professor Mike Richards National Cancer Director
Vivienne Parry: Right, our next speaker is somebody special. Professor Mike Richards is the National Cancer Director and he has done an absolutely extraordinary job for cancer. But I think it's a very difficult job, because how do you cope with people arriving on your doorstep every day saying “do something about my cancer”? How do you decide which cancer should take priority and how should you make a particular cancer shine as brightly, as it does say in Westminster at the moment, and in every hospital and GPs surgery round the land? How in particular do you translate Government policy and priority into action on the coal face, and making prostate cancer a priority on the NHS radar, is what we've asked Mike Richards to talk to us about today. Mike.
Professor Mike Richards: Vivienne thank you, and good afternoon everybody. Very difficult to follow a very stirring talk like that and there is certainly no-one asleep, John, and well done indeed for that.
I am delighted to be here again with you this year. As many of you may know, originally Sir Nigel Crisp, the Chief Executive of the NHS, had been hoping to be here today and I am very sorry that he's not here, and I am sorry that for some of you, you have had to listen to me two years running. But I will try and say something rather different this year, I promise, because I will endeavour to tackle the issue that John Neate posed to Sir Nigel which was about making prostate cancer a priority on the NHS radar. In your briefing note, John, you said to Nigel, and I will just quote directly: “Although Government has started to prioritise prostate cancer, there are still many men with this disease, whose experiences of the NHS are very different from other cancer patients. When will we see real improvements? Are uncertainties about screening and treatments causing the Government to lack conviction in its action, and what makes a cause register on the NHS radar?”
I am going to try and tackle all of those questions, but I am going to take them in reverse order, I think, and give you my view of what gets onto the NHS radar and why.
I think there are really three factors that play a large part in determining what is or isn't on the radar. First, is there evidence that there is a problem? Second, is there evidence that there is a potential solution? Third, effective advocacy. And I now want to think about those three in relation to prostate cancer to see where we are.
First is there are a problem? Yes, there certainly is and there are many problems. I am not going to go through them all and I certainly don't want to rattle off millions of statistics. But we know that prostate cancer is the commonest cancer in men, and it's one of the top four cancers - even when figures for both men and women are combined alongside breast, lung and bowel cancer. We know that prostate cancer is a common killer - the second most common killer among cancers after lung cancer - that's in men - and the fourth commonest overall. We know that some groups in society have a particularly high risk; Afro-Caribbean men for example, have a particularly high risk and a high death rate, though I have to say I wish we had better recording in the NHS of patients' ethnicity so that we could really track that better. We don't know the cause of prostate cancer.
We do know that awareness of the disease among the public is generally poor. We don't have a good screening test, and I am going to come back to that. We do know that prostate cancer is often diagnosed late and that's in part because there are no clear cut symptoms in the early stages. We know that waiting times have been unacceptably long - that's the waiting between referral and treatment - but in particular when we looked at this back in 1997, I think that waits for prostate cancer were amongst the longest of any of the cancers dealt with in the NHS.
We know that services for prostate cancer have been very fragmented and, as you have heard from John, we know that patients have reported very varying experiences of care and indeed - that in general if you take prostate cancer patients together - their experiences of care have been worse than that for several other different groups of cancer patients. And we also know that until recently there has been a dearth of research into prostate cancer. So I think we all share the view that yes, there is a problem - in fact there are multiple problems.
So let me now turn to - are there any potential solutions or opportunities? That's the second factor that I see as being important in getting things onto the radar screen. The answer here is yes, there are potential solutions to several of the problems that I have already identified. Sadly, not for all. I think we need to say that, for example, until we know more about the cause it is very difficult to see what we can do to reduce the incidence of the disease. But there is a lot we can do in other areas.
There is a lot we can do to raise awareness, to promote informed choice around PSA testing, to reduce waiting times, to provide better treatment and care and to ensure that new treatments are tested more rapidly and made available if and when they are shown to be effective and cost effective - and there is more we can do to enhance research. And as I am going to go on to tell you, we are taking concerted action in each of those areas, and I am going to outline that very briefly. But I am genuinely convinced that the actions we are taking - and we need to do more - will lead first of all, to better survival rates, lower death rates, better quality of life, and better experience of care for patients and their families.
So let me go through just a few of the things that are going on. The first step - raising awareness. Many of you will be aware of the initiative launched by Rosie Winterton, the Minister of State for Health, earlier this week. It's a collaboration between the Department of Health and members of the Prostate Cancer Charter for Action group. It aims to educate people about the signs and symptoms of the condition, and it aims to encourage men to speak more openly about it. And the pilot campaign is going to take place in an NHS primary care trust. Its impact on the local population and the effect it has on local NHS services will be evaluated.
That's really quite important - we want to know, in a measured way and in a measured area, first of all do we raise awareness? What impact does that have? Does that worry people? Does that reassure people? Does that mean that many more people go to their GP? What impact does it have on PSA testing rates? All of those things are things we want to learn as we go through, because if it is successful, the initiative could be replicated across the country.
I just want to quote to you briefly what Rosie Winterton, herself, said when she launched it on Monday - some of you would have heard this already of course: “We take prostate cancer very seriously. We published the NHS Prostate Cancer Programme in 2000, to give prostate cancer the priority it deserves. And since then a lot of excellent progress has been made. We set a Government spending target for research into prostate cancer, and are ensuring that prostate cancer patients are diagnosed and treated quickly. Over 98% of patients with suspected prostate cancer urgently referred by their GP are now seen by a consultant within two weeks. ”
She went on, “But there is more to do. We recognise that public awareness of prostate cancer could be improved and this is why I am announcing that the Department of Health will be providing £100,000 towards the public awareness programme, and an additional £50,000 for the pilot will be provided by signatories of the Prostate Cancer Charter for Action. ” Finally, she said, “This collaborative approach is a good example of the Government and key stakeholders working together for the benefit of the public”. And I would just like to echo that. So that is one initiative. It's a small start, but it is an important start and we are doing it collaboratively and we will learn from that.
Today, I am very pleased also to talk about a second initiative which is about providing information and thereby raising awareness. And maybe we could have the one and only slide that I have to show on this one. Thank you.
I think that many of you would have seen UK Prostate Link being demonstrated today as part of the exhibitions and again it was trailed earlier this week by Rosie Winterton at the launch of the Prostate Cancer Charter for Action. And what's more, it was mentioned by Tony Blair in his video message of support for prostate cancer. What it is going to do - and John has already mentioned this briefly - is to provide a unique intelligent sign posting service, so that people can get to web-based information on every aspect of prostate cancer. And what's more, it is going to do more than that, because it's going to have a star rating system to guide users, whereby the stars will be based on how reliable the information is and how easy it is to access.
Our hope is that the searching for relevant prostate cancer information on the internet will become much easier and much quicker. UK Prostate Link is jointly funded by the Department of Health and members of the Prostate Cancer Charter for Action. It breaks new ground in the way we are providing information, and again it is a good collaboration. So I can now formally launch UK Prostate Link - and there it is. It may well generate debate and it may well generate controversy, but we will learn from that and it certainly should act as a catalyst for improving the range and quality of information about prostate cancer on the internet. So that's a second step that we are making this week. I would also like to thank all those who have been involved in developing it, because I know that a great deal of work has gone into that - nothing to do with me - others that have done that.
Now the next step in the care pathway is the one about PSA testing. And I know that there are probably some of you here who would like the Government to introduce a national screening programme using PSA testing. I just want to explain what we normally mean when we talk about a screening programme - in this context to be similar to either breast cancer or cervical cancer. What that involves is sending an invitation to all the relevant people - in this case men in a certain age group - inviting them to attend for a PSA test. Now why aren't we doing that for prostate cancer? Well there is a simple reason, because unlike the position for breast cancer, for cervical cancer and indeed now for bowel cancer, we do not have evidence that the test would save lives. In fact, there are real concerns about whether it could do more harm than good. And we are therefore waiting for the results from trials in Europe and the USA .
That doesn't mean we shouldn't do more John, I agree with that, and I will come back to your four points towards the end of my talk, if I may. But I hope it explains why we have taken a different line on PSA testing - a line based around informed choice. We've been providing GPs with information packs about PSA testing, so that they can share the information with men who wish to consider the pros and cons of having a PSA test. We call this the Prostate Cancer Risk Management Programme, and an evaluation is being done and the results are going to be published shortly in peer review journals. Once that's been done, we will make changes to the programme and improve the information pack, based on the findings from that evaluation. So that is another step we are taking.
I mentioned earlier that waiting times for prostate cancer a few years ago were amongst the worst for cancer patients in the NHS. Back in September 2000 - just over 5 years ago - we made two broad promises about cancer and waiting times. First of all - and this applies for all cancers and not just prostate cancer - that the maximum interval between a decision being made about treatment and the patient actually getting treatment, should be no more than one month. We call that the 31 day target. And the second promise or commitment was that for people who are urgently referred by their GP, the maximum interval between that urgent referral and treatment should be no more than two months. Now that, of course, includes all the time when somebody is being assessed at the hospital, getting all the diagnostic tests, any staging tests etc, and getting through to treatment.
Now back in 2000 we set the target date that those should be achieved by the end of 2005. That's getting remarkable close, and I need to tell you that we are still some way off, particularly for the 62 day target. We are doing well on the 31 target, but for the 62 day target it is at the moment only just over 80% of people being treated. This is being given extremely high priority from the Prime Minister down, I may say. The Prime Minister, the Secretary of State, the Department of Health and throughout the NHS. We are working with Trusts throughout the country to make sure that they know that this is one of the real must dos for this year.
Is this relevant for prostate cancer? Yes, it certainly is, because when we look in detail at who is not being treated within the 62 days, about 1 in 5 of all the people not being treated within 62 days, is a patient with prostate cancer. And we have made that very clear to NHS Trusts. We have looked carefully at where the problems are, and in many cases it is with the trans-rectal ultrasound biopsy service. It's just not good enough and not prompt enough, and so we have made it clear that people need to streamline their care pathways. They need to give priority to this, because this is where the major delays appear to lie.
Now let me just make one other thing absolutely clear - this does not mean that we are going to pressurise patients to have treatment inappropriately quickly, before they can make up their minds. We've made it clear to NHS Trusts that if and when a patient decides that they want “timeout” to think about things, the clock can be temporarily stopped and then can be re-started. The rules are out there on how that can be done, and what we are trying to achieve. This is not about the system - it is not the NHS that's delaying things - but if a patient wants time to make their own mind up, that is absolutely reasonable.
So that's about cancer waits. Obviously once a patient has been diagnosed, they want to know that they are going to get access to the best treatments. As some of you will know, one of the potential treatments for prostate cancer is going through NICE at the moment - Docetaxel. But many of us have actually been concerned that the process taken by NICE to evaluate new drugs and other treatments has taken much too long. And I am delighted to tell you that this morning - probably while you were all at this conference - an announcement has actually been made about a new fast track process for the evaluation of drugs by NICE. This isn't just cancer drugs - this is all drugs that they do. But incidentally, the first five drugs that they are going to put through this process all happen to be for cancer. I think this will help us a lot in making sure that when there are new treatments available, they can be appraised by NICE, so that the gap between licensing and actually being able to use them in the NHS, is kept to an absolute minimum.
Also, specifically for prostate cancer, many of you will know about a treatment called brachytherapy - a form of radiotherapy. What we've wanted to make sure is that there is good advice for the NHS on how that should be introduced across the country. Up until now, there have been a relatively small number of sites providing that. We want to be able to provide it at more sites so that people do not have to travel so far for treatment. But we also want to make sure that it is done safely and effectively in each of those sites. We have developed a framework on this, that's been out to consultation. The consultation has just ended and the Prostate Cancer Advisory Group, which you heard John mention earlier, will be considering that very shortly, so we will then hopefully be publishing that in its final form.
Now what about the organisation of services? Because that's really where, I think, one of the major issues lies for prostate cancer patients. Because the organisation of services impinges on so many different things. It impinges on waiting times. It impinges on whether people get the best treatments and it impinges very largely on their experience of care. The approach we have taken on this was first of all to get NICE - that's the National Institute for Health and Clinical Excellence - to produce guidance on urological cancers. That's basically bladder cancer, prostate cancer, kidney cancer, etc. They published their guidance in October 2002, and I share some of John's frustrations about the timescales that it takes. I share the frustration that it took us that long to get the guidance for urological cancer and the fact that is now three years ago. But what has happened since then is that the cancer networks across the country - and there are 34 of them - have been preparing their action plans to make sure the guidance is implemented.
When I last checked up on this in June of this year, 27 of the 34 networks had got action plans that had been agreed with my team, the Cancer Action Team. The report that I have had on that, is that change now really is happening. It won't happen overnight, because for a lot of things, it actually involves appointing new consultants, or changing where the service is delivered from one hospital to another - so it does take time. But our estimate is that we should have reached the midpoint of implementation by December 2006 and we should have completed the process by 2007. But that is all process again - as John indicated before - what does that mean in practice?
First it means that all prostate cancer patients should be assured that their care will be planned and managed in association with a properly constituted multi-disciplinary team. Now I gather that you had a very good session this morning on multi-disciplinary teams, so I am not going into that in more detail. But I think you would have seen from that how important it is to have surgeons, oncologists, pathologists, radiologists, and specialist nurses all working together to consider an individual patient's case so that the best advice can be given - so that, therefore, the patient is in the position to make the decision that is right for them. First of all, by implementing this guidance, we should get people having access to those teams.
Secondly, and very importantly, they should have access to a clinical nurse specialist, and that really is very important in a whole range of different ways - in the provision of information, in the provision of psychological support, but also in the provision of continuity of care. Care is very complex and what a clinical nurse specialist can often really do, is be the person that links it all together.
The third thing that implementing the guidance really will mean is that if a patient needs complex surgery, it will be undertaken at a centre that really has got a substantial throughput of patients. Because we know that is likely to result in better outcomes. When we looked a few years ago - and looked specifically at prostatectomy - there were 160 different hospitals doing prostatectomies, but half of those - 80 of those - were doing less than 20 procedures a year. I know that if I had to have the operation, I would want to know that it was being done by a team - with a nurse specialist - and a team that was looking after a reasonable number of patients so that they had the experience and expertise.
So that is about organisation of services. What about the patients' experience of care? You've heard about various surveys that have been done. There was a Department of Health survey back in 2000, the National Audit Office Survey done in 2004 and most recently, there is the one published by The Prostate Cancer Charity today - which I welcome and am very grateful to have been shown an advanced copy of. Basically, I think that all of these surveys give a very, very similar message. So we have a problem, as I have said already, but I genuinely believe that we can be optimistic about improving the experience of care over coming years.
Let me explain why I have got that optimism. It's based on what we know has happened in other cancer types. We know that the experience of care for patients with breast cancer, colorectal cancer and lung cancer improved considerably over the four year period 2000 to 2004. And when I asked people what they think that was down to, they are unanimous in their view. They are unanimous that it is down to multi-disciplinary team working and clinical nurse specialists. There may be other factors as well, but those two things - certainly that's the view from professionals - are what has made the difference. Now as we are bringing in multi-disciplinary team working and clinical nurse specialists for prostate cancer, I really do genuinely believe, and have every reason to think, that we will see similar improvements.
I think we should measure it again in years to come, to make sure that that prediction is right - I certainly believe it will be. Incidentally, there is something quite interesting going on here; these surveys are not only done for cancer - they are done across the rest of the NHS as well. And the ones I mentioned - breast cancer, colorectal cancer, lung cancer - that is where we have seen real improvements. A lot of the other areas have been absolutely stuck, so I think we are doing something right in cancer. I now want to move that on and make sure we are doing something right in all cancers, including prostate cancer. Then, also, we need to learn those lessons and make sure the patients beyond cancer benefit from it as well. And I think the teamwork approach and the nurse specialist approach may have applications on an even wider scale.
Research - research into prostate cancer is another area where we have made substantial progress over the past few years. I said at the beginning that there was a dearth of research in this country a few years ago. That is changing. I want to pay a particular tribute to the initiatives that are being taken by the various partner organisations in the National Cancer Research Institute - that by the way, for people who don't know, is a partnership between various Government agencies like the Department of Health and the Medical Research Council, but also with the major charities in the field, like Cancer Research UK, Macmillan, Marie Curie and others.
What has happened in prostate cancer research is, first of all, that two research collaboratives have been set up and they really are working well. One of the things they are doing is actually building the research capacity in this country. It was very small - and people were working in other areas and not prostate cancer - so we are actually building the research capacity in this country. Alongside that, we've got the very large scale trial - the ProtecT trial - and that is going extremely well and will answer some very important questions about treatment for early prostate cancer. So a lot happening there too.
Then that leaves me with the final part of the triad, in terms of getting things onto the NHS radar - advocacy, and effective advocacy at that. I believe that advocacy for prostate cancer is a great deal more effective now than it was a few years ago. The prostate cancer charities are working much more collaboratively with each other and I know from personal experience that they are working much better in partnership with Government - and that is now working very effectively indeed. Partnership - I think to get this right we have got to have the right blend of working together when this is in our mutual interest, but retaining the independence to speak out when necessary and I encourage you to go on doing that. I encourage you to keep up the pressure. It's not always comfortable for me when you do, because I have to deal with it and answer it, but it is helpful. So let me just turn very briefly to the four points that were raised in the bit of lobbying or advocacy before I got up to speak.
Primary care models - can we look at different models? Well, certainly we can. I hope that people who have been putting that idea forward will also put it forward in the Government's consultation on services that go on outside hospitals. Because, as you may know, there is a major listening exercise going on at the moment called “Your Health, Your Care, Your Say” which is looking at how the public want their services to be provided in the future, particularly those services which are not provided in hospitals. Now this is the sort of area where the Government is genuinely in listening mode, and so if you haven't, please get some ideas in very quickly, as I think that consultation period is either coming to an end or is at an end - so please get them in quickly.
The second point was the question of a summit on PSA testing, or are there better tests than PSA? I think that's a good idea as well. It's not for me to say that - it's for the research people to say, but I think that this is an idea that I would at least be happy to float with the National Cancer Research Institute. And again, if people here think that it is important, let's get that onto the agenda of the NCRI and get their view on that.
On information for patients - I absolutely agree that there is lots of good information available - we don't need all to go around writing lots more new information booklets. There is also information being made available in different formats, for example Cancerbackup is currently experimenting with information kiosks that are being trialled, where by you might have a kiosk in the hospital where patients can use touch screen technology to get answers that they want for themselves. Now we have set up a coalition for cancer information at the Department of Health, which brings together a whole lot of charities that are involved in providing information and with the NHS as well, and we are really trying to take these things forward.
The fourth point John made was about Specialist Nurses - I think I have already tackled that. That is very much on our agenda at the moment. We are saying that is an absolutely critical part of a multi-disciplinary team and so people should have that.
I hope I have convinced you that prostate cancer truly is on the NHS radar and, what's more, that because of that, we are making progress. However, just in case there are any lingering doubts, let me end with a direct quote from the very top - from the Prime Minister:
“Prostate cancer is now the most common cancer diagnosed in men within the UK , and at least 1 man every hour dies from the disease. It is a priority for us to tackle.”
He said it as well as me, thank you all very much.
Vivienne Parry: Thank you very much indeed Mike, and I am sorry I had to get up and rustle. We are running very short of time now - I am looking over at John Neate - are you going to be available over tea? Right, if you have any particular questions to ask of Mike Richards, he will be available over a tea cup. Let him get some tea first and we are coming back here - only 20 minutes for tea. And then we've got a very big session on what people can do together to tackle prostate cancer.