"A Cause for Action: The Time for Change"
Tuesday 9th November 2004, The Congress Centre, London
Mike Birtwistle, AS Biss, and Dr Simon Hodgson, Acona Ltd
Vivienne Parry: Now we are going to move on to "The Case for Collaboration". This is something that I myself have been involved in, wearing my hat as administrator for a charitable trust where we try to get together all the various organisations involved in prostate cancer. And to speak up about the case for collaboration, we have two people very intimately connected with this project. First we have Dr Simon Hodgson from Acona and then we will be having Mike Birtwistle from AS Biss. Simon.
Dr Simon Hodgson : Thank you Vivienne. In "The Case for Collaboration," we are collaborating. We have a 15 minute slot and we will be finished when we say we will. But Mike and I are going to do a double act and I will sit down after six minutes or something. I have no connections to the field of prostate cancer or at least I didn't two or three years ago. What I did have was a connection to a company called GUS. That is the GUS logo [Slide 2]. You may not have heard of GUS. It is one of the biggest companies in Britain . And it is number 30 I think in the FTSE 100 or something like that. You may not have heard of GUS as a company, but you certainly know some of the sub companies within it - Argos, Homebase, owns 2/3 of Burberry, a clothing company, and it also has a business called Experian. GUS also has, perhaps most importantly for today's topic, about 32,000 male employees. And it also has a charitable trust.
The charitable trust is the main vehicle by which GUS donates to community and charitable projects. So it gives money to the trust and the trustees then decide on how to spend it. The charitable trust has funded something of which mention has already been made this morning - the Prostate Cancer Charter for Action. I am going to tell you a little bit about the story of how that came about.
We were receiving bids at the charitable trust from a number of prostate cancer organisations that had plans for prostate cancer - for donations towards the cause. We did a bid total up and we realised that there were dozens of these organisations. And rather than give a small amount of money to each of these different charities, we conceived the idea that if we could get the charities to come together to agree on a common agenda, we could then fund a campaign to get that agenda into the public eye, both with the policy makers in government and also into the media. And we figured that this would be an awful lot more powerful than funding separate campaigns. But the question was how we were going to get 20 something different organisations to agree. The answer is that we brought them together for a full day at a London conference centre, much like this one, and we spent the entire day, more or less - we didn't let them out until they agreed on a common set of objectives. We spent the full day drafting the Prostate Cancer Charter which you have a copy of in your pack - at least you had it with a headline of what has been achieved. And that was something that all 20 something - these are the logos of the different organisations - are now signatories to the Charter [Slide 3].
All 20 something of the organisations represented in the room felt that they could sign up. There were calls for targets that everybody felt would be good things. Once we had done that, we then used the resources which the GUS Charitable Trust made available to hire a company called AS Biss and that's who Mike represents. Now AS Biss - for those who remember from the newspapers a few years ago - AS Biss are kind of public affairs consultants. Their job is to get cases made to policy makers. Now that attracted a lot of negative publicity with 'lobbygate' - I don't know if you remember. But what I want to say is that when public affairs consultants are on your side, they are good guys. They are very nice people to have around. They then took the Charter for Action into Westminster , into the Department of Health, and tried to use it as a basis to engage the policy makers.
What did it actually say? Well, we basically asked for five things. This is what all 21 organisations could agree with, and we'll group them up to headings and the first heading was transparency [Slide 4]. We were asking for a report. The government had published the Prostate Cancer Risk Management Programme but we felt that there was, as several speakers have already alluded to, a lack of energy - lack of follow through - so we thought let's group all this and see how that's doing. We also felt that there was an enormous amount of information around on prostate cancer, but it wasn't all in one place so we wanted a database that brought it all together. So that was "transparency."
Public awareness - we wanted a public awareness campaign that explains to men what the prostate was and what could go wrong with it.
Patient care - we identified some of the same shortcomings that other speakers have already spoken about. So how do men make decisions when they are presented with a diagnosis? More work in that area please.
Multi-disciplinary teams - there was evidence to suggest that the decision a man made was strongly dependent on the nature of the healthcare professional that he sought. We felt that smoothing that out with multi-disciplinary teams would be a good thing. And we also, as it has already been mentioned, wanted to see a higher level of education and awareness for primary care providers - that's really GPs.
On resources, everybody is very reasonable on resources. Instead of just banging the drum for more, more and more people sat down and thought precisely what do we need? What do we need more of in this field? We made three conclusions. One - prostate pathologists. We have already heard of the difficulty of diagnosis. More prostate pathologists, more prostate cancer nurses to help men and those affected by prostate cancer, and more research into testing and diagnosis. That, we felt, was the big short fall.
And finally, the final point was that we call for action on partnership. We felt that there was an awful lot of capability and expertise in the voluntary sector, but it wasn't necessarily getting through to where it mattered in the formulation of policy. So we drafted it, we launched it to Parliament and I am now going to hand to Mike to tell what has happened since.
Mike Birtwistle: Thanks Simon. I have to say it's nice to be up here being the good guy rather than bad guy so I hope I will live up to that reputation. Well, you have heard from the Minister today that he has launched the Department of Health Progress Report. What you have got in your pack is kind of a short summary of our progress report - where we feel we got to. A lot of it is echoed in the Department of Health Progress Report and I understand that there are copies for you to take home of that particular document during the coffee break, that will be handed out.
We worked very closely with the Department of Health on producing their Progress Report which I think again is one of examples of where collaboration can work. What I am here today to talk about is how the Prostate Cancer Charter for Action, which embodies collaboration in the voluntary sector - how we've gone about improving the deal that men get in improved public policy in this area.
So the first thing which we really wanted to do was to look at a number of disease areas. We felt that prostate cancer was quite low down on the political Richter Scale. It registered way below some of the other cancers, it registered way below diabetes, it registered way below heart disease. It also registered way below such issues as sexually transmitted disease. We felt that this was wrong. If we were to get substantial progress, then we needed to raise it up the political Richter Scale. Get it near the top.
Politicians are wonderful, well motivated creatures, but I think that they would be first to admit, as well, that they tend to respond more swiftly when there is more pressure on them from their peers. Here is a very short summary of the state of political play before the Prostate Cancer Charter for Action was launched in 2001/02 [Slide 5]. You'll see there was no debate in the House of Commons on prostate. There were no debates in the House of Lords. There were very few written questions and there were very few parliamentary motions tabled on it. Now, since the Prostate Cancer Charter for Action was launched, you'll see, I think it is fair to say, that there has been a sea change there in the level of political scrutiny that has resulted on prostate cancer. So we have had debates in the Commons, we've had debates in the Lords, we've had lots and lots of written questions which our colleagues from the Department of Health down there have to answer, so it makes sure to keep their minds on prostate cancer and stops them drifting onto other areas when they might be tempted to do so. And there have also been a lot of different parliamentary motions.
Now why has that happened? Well, part of my job is to make sure that there are professional campaigns, communicated well to parliamentarians, and bound to officials in the Department of Health. I would like to say that was one area, but I think the main area is that politicians respond very well when you get a coordinated campaign. When you get all the different organisations in one area speaking with one voice.
Generally speaking politicians are very, very well inclined towards professional organisations. They are also very inclined toward the voluntary sector. They recognise that the voluntary sector does an immense amount of good work. However, they also get confused when the voluntary sector tells them different things. You get one organisation saying one thing, and another saying another. They are not experts in that particular area. They tend to hold their hands up and run away, I think with some justification. So, I think having one charter representing all of these different organisations speaking with one voice has made a big difference there, and it has encouraged politicians to taker a closer interest in prostate cancer. And I am pleased to say that the Department of Health has responded to that agenda and some of that is reflected in the Progress Report which has been launched today by Lord Warner.
Now having said that, there is a lot to do. This is some of the progress we have made so far [Slide 6]. Again, you have got the more detailed summary in your handout pack and, of course, there is the Department of Health Progress Report that goes into considerably more detail so I am sure you can all take that away and read it and learn it.
So very, very quickly, what have been the major gains so far? I have to stress that there is a lot more to do. Well, in transparency there is a National Prostate Cancer Website which at the moment is about to start development. We are tendering for a company to run that now. It is a joint collaborative project between the Department of Health and the voluntary sector. So again it's an example of pulling a team together, pooling their resources together to hopefully create a resource which will benefit patients, clinicians and other policy makers.
There has also been the Progress Report which you have seen today. It is one of our key calls for we can't possibly assess what we need to do in the future if we don't know where we got to so far. Hopefully that Progress Report today provides us with a baseline. Allows us now to all go away and make a very hard-headed assessment of where we need to go next.
On public awareness - public awareness is a problematic one as the Minister mentioned earlier. There are particular issues with public awareness. One of the decisions which the Charter signatories took very early on was to recognise that there were problems. Not pretend that there was an easy solution. And try to do some hard thinking on how to resolve that and we work very closely with the Department of Health on the messages which are included in today's prostate cancer Progress Report.
There is also a review of public awareness best practice underway which we are very, very hopeful will lead to some pilot projects to actually evaluate what works in public awareness so that we can all, sort of, take a step back from some of the bluster that goes on in public awareness at the moment. Some people on one side of the argument assert very dogmatically that it does work, other people on the other side of the argument assert equally dogmatically that it doesn't. At the moment, to be honest, we are all talking with not much information, so hopefully this will really help us to provide information to go along side our arguments. We are confident, we believe that public awareness will work, and we are confident that we can demonstrate that and we are again very pleased to work with the Department of Health on that.
On patient care, there is a decision making aid pilot which is going on which resulted from a conference convened by Chris Parker who chaired it. He's on the Prostate Cancer Advisory Group and he chaired this conference. He brought together all of the experts in the area and that is going to lead to an interactive tool that is being piloted as we speak. Now, you are hearing from Chris later on and I know that he is at the conference, so I am sure that if you want to grab him, he will be able to tell you more about that in detail.
The multi-disciplinary master classes, which again the Minister mentioned earlier and John also mentioned. Initially going to focus on surgery - yes - but it will involve every single element of the care team. So it is going to involve nurses, it will involve primary care, it is going to involve surgeons, it is going to involve everyone throughout the patient pathway. The idea is that we are going to try and get these guys to work closer together for the benefit of the patient. And hopefully we should be seeing the first of the master classes taking place within the New Year.
There is also the evaluation of the Prostate Cancer Risk Management Programme. I understand, and I don't think that I won't break any confidences here, that that will be launched early in the New Year. It is basically awaiting peer review and it is now going to go into the journals. So as soon as we get that, again, that gives us a very useful baseline from which to work out what to do with the Prostate Cancer Risk Management Programme. We all recognise it is a valuable tool, but as John said earlier, we have some concerns perhaps it isn't being used as widely as it should be.
On resources - there is lots and lots going on in capacity. More doctors, more nurses, more consultants. The report goes into quite a lot more detail on that. In addition to that, the signatories, working together in collaboration, have achieved a commitment to continue the research budget specifically for prostate cancer from the government at the level of £4.2 million going forward - which is a major win. That commitment didn't exist before and we are very pleased that the Ministers have responded so positively to our cause in that area. And all the additional projects which are listed up here of course. These all take money. They also take time. We know that the Department of Health and Ministers have all these different competing interests clamouring for their attention. Equally, officials have a great deal of different areas in which they can work. I think that time, commitment and hard thinking on prostate cancer is an area where the collaboration has resulted in some gains.
And finally on partnership. Well, here today is a great example of partnership - everyone involved in prostate cancer all gathered in one room, all working towards the same goal. Obviously, there is a challenge to have 21 organisations still working together after two years. I have to say that some politicians were slightly sceptical and gave us about 12 days rather than two years. I am pleased to say that we have got here, we are still together and still working with the Department of Health through the Prostate Cancer Advisory Group. I think again, hopefully, that will now go forward and become the forum for making policy - ensuring the patients, professionals and voluntary sector are all involved in making policy.
So I think that the early signs of collaboration are good. It can work and it can lead to gains. There is obviously an awful lot more to do as the Progress Report makes clear. Now I am going to hand very quickly over to Simon to talk about the future and where we do go from here.
Simon Hodgson: I really just wanted to say that we aren't finished, we don't think. The original list of calls, as you have seen, has been largely addressed now in one way or another. In almost every area, something has happened and we are meeting again in December - the same original crowd - again a locked London hotel room - and we are going to sit and go through them and we are going to say, do we need to do more? Can we drop some of these? Can we put some new things in? Things are changing fast in the field of prostate cancer. Do we accurately reflect what still needs to be done?
The GUS Charitable Trust has faithfully funded this activity over two and a bit years in the tune of almost £200,000 and we think it is time to have somebody else have a go, so we are trying to draw up a kind of a revised Charter for Action which will form the basis of approaching other possible funders. And really watch this space, if you are connected with any of the signatory organisations that you saw on the slides. Do keep your ears and your eyes open to see what they are up to. We feel that collaboration has been tremendously positive. We have been incredibly impressed with the open attitude of the Department of Health. They work very closely with us and it's enabled us to simplify a very complex area and really make some progress. So thank you for your support through your various organisations and do keep your eyes open for what we are going to do next.
Vivienne Parry: I think the message is that collaboration really, really works. And I just want to say (speaking to panel of speakers) about your robotic cancer treatment that when we actually covered that story on Tomorrow's World, we actually had to send out two crews because the first ones fainted. Now it is time for a break and at 12:00 you are all going to various seminars. If you are going to the one on Living with Prostate Cancer, that is in here. If you are going to Inequalities or Media Relations that's on Level 5, which is presumably up there somewhere. And the Local Support one is Level 2 in the Invision Rooms. So back to your seminars for 12:00 and thank you very much.