Transcript - How Can Individuals and Organisations Get the Best for Men?

Mike Birtwistle Consultant, AS Biss & Co
John Baron MP Conservative Front Bench Spokesman on Cancer
John Peace Group Chief Executive, GUC plc
Mike Whitlam CBE Voluntary sector leader previously Director General of the British Red Cross

Vivienne Parry: I have got a couple of notices, first of all. Stephen Barton, who was the patient that you heard in the MDT team, asked me to tell you that the treatment, or the imaging that he was talking about - a SINAREM MRI scan - is still an experimental treatment, so that's why its not yet available here.

The second thing I have to say is we have a Master Blaster. The Master Blaster is not me because I have pathetically come bottom. Now the Master Blaster - if I tell you that I did it in 1 minute and 37 seconds - and this person did it in 19 seconds. I think that Graham Forrester gets a big cheer. Is he here still? Graham Forester now gets £250 worth of equipment from Dixon 's. We don't mention the word Dixon 's at GUS.

And the other winner of the Helpline quiz is Dr Robert Walker. Robert Walker, are you here? That's for you. There we are.

We've been talking about collaboration, we've been talking about all the progress that is been made and we have heard the Prime Minister talking about prostate cancer and really putting his mark there, marking down prostate cancer as something that is important to him and to the Government. So that is very good news, but how do we then translate that into action? And how can individuals and organisations get the best for men? Well, this afternoon, we have got a splendid panel, each of whom have a different fields of expertise.

We have Mike Whitlam, previously Director General of the British Red Cross and now a man with a portfolio career. That means he is jolly much in demand. Then we have John Peace, who is the Chief Executive Officer of GUS Plc, so therefore he is my boss. Then you have Mike Birtwistle who is standing in for Howard Stoate. This afternoon the anti-terrorism Bill is going through the House of Commons this afternoon, there is a three line whip. Mike, explain what a three line whip means?

Mike Birtwistle: If you miss it, you are dead, basically.

Vivienne Parry: Yes, and finally we have John Baron, who is a politician, not quite so under the three line whip today. A Tory MP who has an expertise in prostate cancer. So let me start with you Mike. You represent the voluntary sector, you have worked in the voluntary sector for most of your life. What can the voluntary sector do to help us all work together?

Mike Whitlam: Ok let me kick off if I may, by saying something about the voluntary sector. The voluntary sector is not a simple animal to understand. And I guess in this room we have representatives of a wide variety of different types of voluntary organisations. From very small local community support groups, through to the larger charities and maybe even some enormous charities, which are really in themselves big businesses. So how are they different and what can they do? Well, I have been trying to understand this for the last 31 years running different organisations and I think the way I see it is this:

First of all, what we are there to do is to make a difference and change our bit of the world. And by doing that we have to push the boundaries. So the one thing that the voluntary organisations can do, is they can push the boundaries. They can innovate, try new ideas and really make people think outside the box, to use a rather overused phrase. We also tend to come to this, as many of you in this room know, with a "can do" attitude. You know, there is no problem too big that we can't solve. And we also tell the story as it is. We heard Mike Richards, and I don't know if he is still here, but we had Mike Richards telling us how wonderful things are at the moment. Well, if things are that good why do we have the problems we've got at the moment? Now that is not to decry what's happening, but it means that there is still a lot to do, and those of us in the sector are happy and prepared to tell it as it is, and we keep on telling people how it is until they listen and until they really hear us.

We collaborate together. I don't know what it's like in big business, I am sure we will hear shortly. Our bottom line is not the profit. We don't have shareholders to satisfy. We do have to make a difference though, and that is where we are coming from. I think we start at a bit of an advantage in the fact that collaboration will mean we are prepared to give up a bit of sovereignty for the greater good - at least that is where I come from. The other thing you have to be in the voluntary sector is an eternal optimist.

We campaign a lot. We heard a lot about advocacy, and believe me, advocacy forms a massive part of what voluntary organisations are into, regardless really of what they are about. So to hear John's requests to the Government, that was terrific. I mean, we need that kind of passion and real advocacy in the voluntary sector to really change things and we do that a lot of the time.

My last point and general comment is that we are prepared to try almost anything to do it. I have to say, I think the use of Ricky Gervais over the last few months has really raised my awareness of prostate cancer. It wasn't on my radar much at all until John spoke to me and until I heard all about that particular campaign. So you can use that and turn it to good effect as I did, and I am going to say something about two very quick examples. On the landmines campaign, on that occasion trying to collaborate around the world with different governments we used Diana Princess of Wales . Now, she was a very useful tool to use because people around the world knew her. But there were some problems using the Princess of Wales because some members of various political parties didn't like it and they tried to rubbish what she was saying, and we were able to turn that to good effect. So being able to use adverse publicity positively can be a good too.

Let me just give you two reasons why I think the questions the panel have been given to answer today are broadly: Can we propel the prostate cancer agenda more rapidly by joining forces? Is collaboration a good thing in other words? The answer to that, of course, is yes. Clearly it is. That is very easy for us to answer, but how do we make that a reality?

Well, with the landmines campaign it was fairly simple, because here were a lot of governments and non-government organisations having to spend lots of money on things that were very costly and growing because people kept fighting and blowing each others' arms and legs off. The solution clearly was to stop the production and sale of landmines - not an easy proposition. But what we were able to do by collaborating with the major agencies around the world was to use the Canadian Government's initiative and the usual channels through the diplomatic services, to raise the profile to a point where people in the street - the ordinary man and woman in the street - began to ask the right questions of their government and say, enough is enough and something must be done. And when I think back to the PR and publicity around that particular campaign and that over 600 million people saw some very good PR that we got out of the trip to Angola, that to have turned government's minds - that's great stuff. But I quoted this example the other day in a different context, when we had in that particular case the British Government on side.

Three Secretary's of State and the Prime Minister had all given their support to the abolition of landmines. But to make it a reality they had to ratify the Convention in Parliament, and one of the problems we had - and George Robertson and I went head to head on the Today programme on this - was that they couldn't get the parliamentary time to get it ratified in Parliament, and it took a lot of strong advocacy. Let me say no more than that, for the Prime Minister then to say, ok we are supposed to be the good guys here, go and find half an hour to get this through, and it went through on the last day of Parliament because we wouldn't give up - we were persistent in doing that.

And the second example that I want to use, is one that I have just finished, and that is a global campaign on blindness prevention. And here we had over 50 big international charities working on their own, initially, to try and stop avoidable blindness. All doing a good job: Helen Keller International, Orbis International, flying their plane around the world giving cataract operations, Sight Savers, and many others. But the problem was they were facing a large and growing number of people going blind who needn't go blind. So by coming together it created a powerbase that enabled us to do things that they couldn't do on their own. But they did have to give up a degree of sovereignty and it cost them some money. Some of their money had to go towards bringing in a team of people to help work on this campaign.

The two things that I think happened whilst I was certainly running that particular campaign were this: One, because of the networks that this particular group of people had, and they were used effectively. Within a period of 6 to 9 months we were able to get onto the World Health Assembly agenda a resolution that has since committed every government in the world to creating a blindness prevention plan in their country. And reporting back, in fact next year, 2006, to the World Health Assembly to say how far they have got, in fact I think at the moment the British Government might be hard stretched to put up a good fight, a good show at that, at the assembly. But also, more importantly, they had to give up their sovereignty and they really did have to say: Ok we will pull back in country X or we will help you to work in country Y or actually we will fund a bit of what you are doing, because you've got the expertise that we don't have, to create a truly joined up program in any given country.

So the answer for me, to the questions being asked is: yes, it makes a great deal of sense for there to be collaboration across all disciplines not just within the voluntary sector. Collaborations with politicians, with business, with Government, with NHS, whoever. But everybody has to put something into the program and not just the voluntary sector, and be prepared to give up a degree of authority.

So yes, it will be great, and certainly when we come to talk later about the coalition that has already been established around prostate cancer I think it's a good start, but I think there are a lot of questions that need to be asked, in terms of how that group can use its power to make a real difference.

Vivienne Parry: Thank you. Now can I come to John Baron next because you are the Tory frontbench spokesman on cancer, so you have, I guess, a very particular role in propelling the agenda for a change in prostate cancer forward. How do you think you will be able to do that, and what is the role for the opposition politician in that?

John Baron: Well, the role of the opposition politician is to try and make it clear where the Government is going wrong, if it is going wrong, and then suggest ways of trying to put them right. And we call on all sorts of bodies to help us do that, including the various charities involved, as Mike will know, in order to try and raise awareness of the key issues. I want to, if I may Vivienne, address that issue centrally, but I also want to, if I may, very briefly, talk about perhaps how we see, and I think it's not just we as the Conservative Party, but the growing consensus on the way things, how things should be improved, but before I do can I just make an apology from the start. First of all I am delighted to be here but as Vivienne quite rightly said there are important votes in the House this afternoon as there were yesterday, on the anti-terrorism legislation, and one or two of those votes were quite close yesterday. We lost one by one vote, believe it or not, but we are continuing to battle away. I can't promise they're going to be as close this afternoon, but I am going to have to leave immediately after this and I hope you will forgive me for doing that. I had to pull all sorts of strings and twist all sorts of arms to be here so I hope you all understand. I also didn't want to let John Neate down, and his team down either, who have put this conference on. I couldn't do that.

Let me start by saying there is no doubt about it - the issue of prostate cancer has come up the political agenda very quickly indeed. We've known for a long time the key statistics: it's the number one cancer amongst men; it's the second largest killer; 10,000 men dying a year from it, and it's a condition that can affect all men, irrespective of social background or where they live.

But what is becoming increasingly evident, and what has helped this process, has been obviously the survey that was recently undertaken by The Prostate Cancer Charity, is the extent to which those suffering from prostate cancer feel as though they are almost very often second class citizens within the NHS itself. I understand this morning you have had a run through of the results of that survey, so I won't repeat all the figures, but there are some quite startling figures there, including one of the one's that stuck out in my mind, that nearly a half of men were not given any written information about the disease, treatments or side effects. And many men were not feeling as if they had had enough guidance in order to make informed decisions about the treatment options available.

That is a sad state of affairs and I think it is one of the reasons why all the parties came together on Monday to support the launch of the Prostate Cancer Charter for Action which was great to see. Lots of videos, all politicians getting involved from across party, and I helped Howard Stoate to co-sponsor the Early Day Motion on the issue. So there is good cross-party support there at the moment. The spotlight is on, the challenge we have to meet is, how do we keep this going?

I think in a way if we are going to address that issue centrally, we have to address what are the key challenges that the policy makers have to meet? And I think that there are probably two or three key ones. The first is that we need to make sure that prostate cancer patients receive fair treatment within the system, compared to other cancer conditions and that the structures are in place to ensure that. Secondly, we need to make sure that local services are designed around the needs of patients rather than around what I would call "organisational boundaries". In other words, we must make sure that the patient is at the centre of the care journey. Meanwhile, all of us, but particularly the Government, and I would include the opposition parties in that as well, do have a greater role to play when it comes to increasing awareness about the condition. Something that Mike and I have been involved in for a number of years now, trying to raise awareness about the condition itself, because for too long it has been a taboo subject.

How do we go about these objectives? Now, we believe that an enhanced NICE, The National Institute for Clinical Excellence, the body responsible for assessing drugs and treatments for the benefit of patients, should be centre stage when it comes to improving patient experience. We would scrap the Government's 300 plus target, and I am not going to get too political about this, because it wouldn't be fair, because Howard Stoate, I don't think, is not going to be able to make it to this meeting. But all I would say is, although those targets are well intentioned, they are preventing too much money from reaching frontline services because those targets themselves spawn a bureaucracy. They also focus too much attention and resources on the acute sector at the expense of those suffering from long term medical conditions and that is wrong as well. And obviously would include many patients suffering from cancer.

But the targets also risk, particularly in the case of prostate cancer, patients being channelled into a treatment route which may not be appropriate for that particular patient. Now we would charge NICE with establishing clinical standards and entitlements for conditions like prostate cancer for the entire journey. This guidance would address one of the central failings of the system at the moment, and that would be that it would include or it would make provision for guidance to be given so that patients had the information, advice and support they needed to help them make informed decisions, and that is one of, I think the key areas that needs to be addressed at the moment. There is an absence of that advice and guidance, if you like, at the moment and we need to make sure that is put right.

But it would also address the guidelines from NICE - the need for more specialist nurses both in hospital and primary care settings and these nurses, together with the excellent work of the charities involved, can be extremely well placed to answer the questions and concerns which patients naturally have. Patients would know from these guidelines what standard of care they are entitled to, what sort of treatment they should be getting and so the mechanism would ensure that resources were not focused just to the early stages of the journey but throughout the entire journey. At the moment, NICE appraisals have statutory backing but the guidelines don't. That is wrong. The guidelines themselves should have statutory backing. They should be given teeth to make sure they are enforced.

Now, in addition, we would ensure that NICE instituted an implementation assessment whenever these guidelines were issued so we would ensure that the money was available to make sure the guidelines were acted upon. It's no good having guidelines if you haven't got the resources to put them into place. That is a key problem at the moment when it comes to the implementation of many guidelines from NICE, particularly when PCTs are finding they are running into financial deficits of one kind or another. In effect, we would be replacing targets set by politicians, with standards and entitlements set by the clinical professionals themselves. There is a fundamental change in the approach as to how treatment, drugs and care generally would be administered within the NHS. It would put the patient at the centre and it would address the urgent need, in my view, for a holistic assessment of a man's clinical information and support needs, and to ensure regional variations on the quality of care are raised to the standard of the best.

Putting NICE to one side for the moment, in addition to that, as I mentioned at the beginning, we need to do much more to raise awareness. And we have made a good start very recently. It was an excellent launch on Monday and congratulations to all those concerned with that. I thought it went very well indeed. But we have been pressing for some time for a much greater awareness campaign. The Government is now thinking along these lines and that is very, very good news.

It is absolutely unacceptable that 90% of the adult population in the UK do not understand the crucial role the gland plays in the man's sexual function. That is why on Monday I was delighted to see, and welcomed the announcement, that the Government will pilot a local awareness campaign. We have been calling for this campaign for a long time and that is very welcome news. But we will also be ensuring, and seeking assurances from the Government, that any positive findings - and I am sure there will be from that, there should be - will be swiftly acted upon. Doing a pilot scheme and then acting upon it can be two very different things indeed. I also believe the Government needs to - and this is any government - needs to do much more to forge a consensus within the scientific community, and internationally, about the need to focus on the task of developing a satisfactory test for the condition. A definitive test would be a major step forward and I think we need to give that greater urgency.

Now what can I contribute? I think we will all agree that there is a need for a much greater consensual approach. We've made a good start this week. The challenge we have now, certainly in Parliament, is to keep that momentum going. As I say, great start, but often when the spotlight moves away things can slow down and progress can be sidelined. What I would like to suggest is that we try in Parliament to put together some sort of cross-party forum aimed at bringing the politicians from all parties together, but not only just the politicians, but also the charities involved, so that we could have, hopefully, a powerful forum, not only discussing the issues but actually also making sure that we action some progress. Now we can raise these issues that you have discussed today and that we have discussed in the panel this afternoon, in the hope that we can take some positive action, as well as the launch on Monday and the conference today, in trying to move this whole debate forward.

So I am going to suggest to Howard, and I am sorry he isn't here today as I was probably going to spring it on him at the other end of the table, but suggest that we try and work together on this. And I am sure there will be no difficulty with that, to create this forum from which we can then decide, in collaboration with The Prostate Cancer Charity and others, of what exact form it should take and how we can move the whole thing forward. I will be perfectly honest with you - I was toying with the idea of suggesting an All-Party group. I got knobbled on the way to the gents, before I got to the table, and said perhaps we should kick off with the forum first. So let's do that and take it from there.

I think that's all I have to say now. You have been very patient. Thanks again, as I say, for your understanding. I am going to have to leave pretty soon after this. We do have votes, as I say, this afternoon. I know that there are constituents here of mine, Billericay and District, and what I would like to say to those constituents, but also to all of you, is if you want further meetings on this to discuss the issues going forward, then please do not hesitate to get in touch with my office. I often think that the Q&A session at the end of these panels are more informative than the actual speeches themselves or certainly can be more interesting. I am sorry to miss that with you, but as I say my door is always open and if any of you would like to raise these issues again another day, then please feel free to get in touch. Thank you.

Vivienne Parry: Thank you. Can I just ask you John, one question before you go while we have you here. Should all these good people go and lobby their MPs about prostate cancer? Is that a good idea?

John Baron: I think the short answer is yes. This issue is of such importance that I think you are perfectly entitled to lobby your MPs and ask them to raise this issue with the Minister in question. It's not just a question of lobbying the MP - it's actually saying could you raise this issue with the Minister in question? And making sure that you get a response back.

And if I could go further with this, I would suggest that nothing brings, and I am a great believer in petitions actually, I don't think anything brings focus to the politician's mind more perhaps at a local level then petitions. I am a great believer in them and if you feel that there is enough ground swell of support for this issue then don't be afraid to put together - doesn't have to be a large petition, but a small petition - and send it in, and you may be surprised by the response you get. So lobby hard - this is an important issue and I sense that the Government is realising that and that prostate cancer has now been put on the radar screen and we have to make sure it stays there. I am prepared, Vivienne, if I am allowed to do this, to take some very quick questions now, or am I disturbing the panel proceedings?

Vivienne Parry: Only very slightly, has anyone got a very quick question, a burning question?

Audience: We have heard a lot about the piloting of this awareness project. Do we know where it is going to take place?

John Baron: Mike, do you know?

Mike Birtwistle: At the moment we don't know, but one of the jobs will be to identify that PCT. What I would say is, if you want it to be in your area, get in touch with your local PCT and get them to lobby the Department of Health. I know we have got Department of Health officials here and I am sure they will listen very carefully to any representations.

John Baron: I think that is where the petition could come in if you are that interested.

What I would say about the pilot scheme is that we are delighted that the Government has made this decision. It's a very welcome move but I think we will also be seeking assurances, as I said, that actually findings - and I think there will be findings that need to be acted upon - will be acted upon and I think that is very important.

Vivienne Parry: Ok, now I fear we need to move on now. Oh, one more.

Audience: I am just wondering whether this has all been brought about by Tony Blair contracting prostate cancer? Because we are the Prostate Cancer Support Association - we have been handling this now for five years now. We have written to the present Minister of State for Health, Patricia Hewitt, three times only to have our letters ignored but passed to the ..

John Baron: In the interest of consensus, I am going to say - because I think that the important thing is we are going to continue the cross-party support for this cause - in the interest of consensus, I am sure that is not the case but we will keep the spotlight on the go.

Vivienne Parry: I would like to move on to John Peace, who is the Chief Executive of GUS. John, you are the Chief Executive of a FTSE 100 company. People probably know GUS better for its divisions: Argos , Homebase, Experian, and of course still just about Burberry. But through the GUS Charitable Trust the Prostate Cancer Charter was initiated and facilitated, but that is a rather unusual thing for a business to do. And where do you think big business, in particular, how does that play into propelling an agenda forward and what is it that business can do?

John Peace: I don't have a speech. I am not a politician, but I do have clarity of thought. It does seem to me that business has a very important role to play. I live my life solving business problems, dealing with issues. We employ, mostly here in the UK , over 60,000 people. Half of those people are men. So if you like, we also have a vested interest in this particular condition. But I think what business has is an expertise, an ability to focus resource, technical, marketing, strategy, all of those things, perhaps better than any other constituent parts.

I think with the Charter for Action, it's a very good example of where the whole is greater and more powerful than just the parts on their own. And I hope what we are doing with supporting the Charter for Action in the way that we are. Supporting it is not just about money. It really isn't just about money. I hope this goes on to become one of the very important examples of where collaboration between different organisations can indeed put pressure on the politicians, can indeed open doors, and indeed hopefully make more progress than without that focus might otherwise have been made.

So, answering your question, Vivienne, I think business does have a very important role to play, not just from a financial point of view, but in way of managing time and resource and indeed the ability to bring focus onto a particular topic.

Vivienne Parry: How important is the role of the business in being a third party? Because voluntary sector groups often have quite different agendas singularly. How far does having an overview help?

John Peace: I think it's key. Clearly GUS has no vested interest beyond the 30,000 men that it employs. I think that what it can bring is a fresh perspective, a sense of objectivity. We don't manufacture drugs, we are not politicians, we don't have a vested interest in any one aspect of this particular project. And so therefore, what business, what GUS, are bringing here is this integrity, this objectivity and indeed, is a broker able to bring together all these different views and interests.

Vivienne Parry: Thank you. Now, Mike Birtwistle, star of AS Biss. AS Biss is a public affairs company. They have been responsible for the Prostate Cancer Charter for Action. You are Howard Stoate for the afternoon.

Mike Birtwistle : I am a very different shaped Howard Stoate. I don't know if anyone has seen him but he is much taller and a lot thinner than me, so I apologise for that. I am afraid I only found out I was going to be speaking at about 8pm last night. I am not a politician. I don't have any prepared speech, but nor do I have any clarity of thought, but I'll try anyway. I'll give you some initial musings.

Hopefully, in a sense, you've already had the answers to the questions posed by John for this session throughout the day. I mean, we have heard a lot about collaboration today. I don't think that's surprising. Today has been organised by two of the world's great collaborators I think, John Neate , Chief Executive of The Prostate Cancer Charity, and it's been chaired by another great collaborator in Vivienne Parry, who has been absolutely instrumental in bringing together the charities involved in the Charter for Action and dare I say it, knocking a few heads together from time to time when it was necessary anyway. Some of them have got very thick skulls so it's necessary to knock them quite hard.

I'd like to take this moment, if I can, to pay tribute to the role of GUS, because I think they have been absolutely crucial in this. Companies which make a lot of money, and I am sure John would like me to tell his shareholders that they make a lot of money, it's very easy to contribute finances to it. It's much harder for busy people to give up their time, their expertise, their energies and their vision to get behind a cause. I think GUS has done that and it's a real testament to them that they have. It's very easy to say that collaboration, of course we should collaborate. You have seen some of the benefits from it today - the Prime Minister talking about prostate cancer, Michael Howard talking about prostate cancer, Charles Kennedy talking about prostate cancer - the profile it's had in the media this week, you have seen that by actually speaking together with one united voice you can get more done than you can alone.

Now every single organisation in this room has an absolutely vital role to play in tackling prostate cancer, as does every single individual. Put your hands up if you are registered to vote in here, who is registered to vote? Ok so that's pretty much everyone. So the politicians who are going to make the decisions about tackling this condition and whether to prioritise it or not are going to listen to you because you are going to the people that can keep them in their job. So I would like to set you all a challenge today. I would like you all to go across and meet my colleagues over there at the Prostate Cancer Charter for Action stand. I would like you to pick up copy of our Charter. I'd like you to read it. I'd like you to tell us if you disagree with it and if so why? But more importantly than that, I would like every single person in this room to be able write to their MP and tell them to get behind this campaign now.

John said earlier we've got an opportunity to make this the parliament for prostate cancer. We have but time moves fast. We need to act now if we are to move it up the agenda. We've had some great progress so far. We've got things like the website, UK Prostate Link. We've got things such as the public awareness campaign. We've got a renewed commitment to research funding. But we know we've now got to step up the pace. What we've done so far is a good start, and no-one will be forgiven, least of all the people in this room, if we don't now step up the pace, really take this challenge to the Government, and to other politicians such as John, who's been a great champion for this cause over the last couple of years. We now really need to step up the pace and make sure this really is the Government's number one priority going forward.

Now is that easy? No, I don't think it is. Sometimes you are all going to have to compromise, I'll be honest about that. Sometimes you're all going to have put the cause before your own organisation's individual profile, that can be difficult. You've all got funds to raise for your charities, we understand that, but it's going to be necessary if we are going to take this campaign on, take this cause on, move it to the next level.

Equally, I understand you are all very committed to this cause for very different reasons. Some of you are patients with personal experience of it. Other people have suffered bereavement. Some of you will have devoted your whole professional life to tackling this major killer. You all, therefore, will have your own views. Some of the time it will be necessary to compromise on those views if we are to work together but if we do work together that's when politicians will listen - don't give them the opt out. The moment you disagree, the moment you start falling out amongst yourselves, that's the moment they can put their hands up and say: hang on a minute, I'm going to prioritize breast cancer today, because they are all agreed. Or Hepatitis C. Or obesity, or heart disease - whatever it may be.

Don't give them that easy opt out. Keep united, keep working, keep pushing them. And I think together we are unbeatable. We've made a good start but there is so much more we can do. Just the very fact that you are all in this room now, at this very moment, indicates the commitment behind this cause. And I can give you this commitment today, the Charter for Action is going to work flat out over the next three years to make sure that the Government delivers on the early promise which has been shown to the collaboration. But we need your help to do that. You can all play a big role, and I urge you to do that.

Vivienne Parry: Thank you very much.

Mike Whitlam: Just in response to that, and also to what our MP colleague said before he left. At a meeting like this, it's very easy to get really enthused about a particular issue. I mean everybody in this room, even people standing at the back now. But outside on the street and in Parliament, there are other priorities. In the NHS there are other priorities. I happen to be a non-executive on a Primary Care Trust, trying to struggle with the deficit that we have, in another part of my life. We really do have to find the very clear arguments that are going to make people listen. And each of you who are members of a different group - whether it's a business or a voluntary organisation - will have to go back and sit down and think: how will we use the Charter for Action to really work? Not just to say: oh we are committed to it. But all your literature will have to have (I don't know if there is logo for the Charter for Action), the straplines. There will have to be a transfer of resources, some financial resources, from small community groups as well as the ones who are currently signed up.

The MPs will have to quote it in their speeches. You will have to give the politicians a reason for arguing it. I was talking before we came here about a break through in the blindness field. We couldn't get governments to listen until we put the financial argument and it was cheaper for them, it was less costly for them, to implement the kind of program we were talking about than not, by order of some differences across the world. Two million as opposed to 288 million. It was a big difference. You have to put those kind of arguments. For business, I think, while I think it's incredibly good for GUS to be giving this level of commitment, I think the whole notion of corporate social responsibility programs help the company. And if I think John could use his good officers with his other colleagues in other parts of business to say your corporate social responsibility programs could be able to be implemented in different ways such as John has done, then you start to really put some practical weight behind the rhythm.

The passion for the campaign I think you have all got is great. And I think the media, the publicity and PR this week has been great. But it will be a real hard effort on everybody's part to get it to the next stage.

Vivienne Parry: What do you think the dangers are for collaboration for the voluntary sector? Because, I think many people, in the voluntary sector feel that by working together they may be sacrificing some autonomy? You've worked in the voluntary sector for a very long time, what's your feeling about that?

Mike Whitlam: Well, I think we are all very keen to collaborate in the sector and perhaps a classic example of collaboration is the Disasters and Emergencies Committee - which you have all seen - where you have the big international aid agencies collaborating in some major disasters. Now what they have to do in order to be a part of that group is they have to agree not to fundraise for a period of time. And to allow only the funds to come into the DEC. Now I am not suggesting that you need to go quite that far because we are not talking about that scale. But there will be an element of each of your fundraising programs, taking on some element of fundraising for the Charter, which you're going to have to tell people, that our list of priorities are this, this and this, but part of our advocacy program is linking with the Charter and putting some resource into that. And when you go to business, say: here is how we are going to spend our money. You are going to have to tell them that some of our money is going to go into collaboration with other organisations, and that might even be a source of more money. If you've got a source of money raising less than £10,000 a year, you can give about £1,000 to the advocacy role.

Vivienne Parry: And in fact actually that has already happened.

Mike Whitlam: That is what everyone must realise, that they are going to lose a bit of their autonomy and funds raised.

Vivienne Parry: Yes, because here we've got the website, which was funded partly by the Department of Health, but partly also by the members of the Charter and the same of course is true for the pilot.

Mike Birtwistle: There is another wider issue here as well around public profile of charities. I think sometimes collaboration will actually damage your public profile. I'll ask you a question: who here knows all the organisations who are members of the Make Poverty History coalition? I know Mike does so he can't answer, but can anyone else actually give me the answer to that? And yet you have all heard of that coalition. And yet you look at it and see that Oxfam aren't as famous as they might have been and they are a member of it. Neither are Christian Aid, but they have achieved their objectives by working together and sometimes sublimating their own individual personal profile, for a wider common good. That takes bravery to do that. I will give you an example from prostate cancer on Monday.

Some of you may have seen John Neate on the television. Others of you may have read quotes from Sandy Tyndale-Biscoe from PCaSO, a very small patients' organisation. He was quoted in The Times, The Observer and others. They were all quoted under the Prostate Cancer Charter for Action, rather than under their own individual charity. Again that takes a bit of bravery. What are their Trustees thinking? They are thinking: this might a good opportunity for some fundraising. But actually it takes people to be bigger than that and rise above that and say: no here we are, we are a common cause and the cause is more important than the organisation. So I don't think we should be under any illusions that there are compromises to be made.

My strong argument would be: is it worth making those compromises? I think this goes wider than just the voluntary sector as well. The Charter is actually a very good example of collaboration between business, with GUS and now others as well. Between the charities, 22 of them, that's quite a lot to get to agree on things, but they do it and politicians - politicians with a diverse political interest - John Baron, who would be seen as a Thatcherite member of the Conservative Party, and Howard Stoate who would be seen as a Blairite member of the Labour Party, Ian Gibson who might be seen as somewhat to the left of the Blairite Labour Party - they all work together.

Vivienne Parry: Rebelling even as we speak

Mike Birtwistle: Rebelling even as we speak. I don't know think Howard is, but Ian certainly will be. So I think you can see that you don't have to completely agree on everything to collaborate. You can come from a very different background to make it work. But you have to then accept that there will be some challenges and compromises which need to be made.

Vivienne Parry: John, can I just come to you a moment? Because I think one of the things that was attractive to GUS about this - and maybe it's something that you can use in your own advocacy work - was the way that actually a relatively small amount of money could be leveraged to make a great deal more.

John Peace: Just listening to the way the debate is evolving, I repeat something I said a few moments ago. It really isn't just about raising money. It really is focusing expertise in the right direction and bringing the right resources and skills to bare to solve a particular problem. And I think the great thing about this particular project, and similar projects which hopefully over time will evolve, is the strength in the fact that there are so many people prepared to work so closely together. And I think by having that level of collaboration and getting the focus onto the problem in the way that the Charter for Action has done, so then you don't need perhaps as much as if you had 20 plus type initiatives all trying to do the same thing. A little in that context can go a long way.

Mike Whitlam: One of the other hopes I would have had for GUS would be you be able to use your network of other businesses, globally. And dare I say it, maybe even your customer base. Because the notion of engaging customers in a campaign of this kind is a very powerful tool that those of us in the voluntary sector can't bring in.

John Peace: That's exactly what we do. And if I may, I would just like to compliment the lady who is just waving me nearer the microphone, who earlier described me as her boss but I do literally everything she tells me. And I think she does a fantastic job in creating the focal point for all of this to come together. And I think what Vivienne will tell you, is that in organisations inside GUS there are lots of people at varying levels of the organisation that do want to get engaged and do want to take part and use their intellectual capabilities and their physical capabilities, to actually take part in some of these activities. And I think with social responsibility, it isn't just about box ticking, it really is engaging the right people in the organisations to make a difference.

Vivienne Parry: Let's take some questions from the audience.

How do you feel about this field? What do you feel could be done to get the prostate cancer agenda really moving?

Audience: I have only been very recently diagnosed so this is a very steep learning curve for me but one thing did come out of today for me, that the standards of practice and treatments do appear to vary very widely across the country. Somebody said earlier there is a great body of information available could it not be got out to the primary care trusts and disseminated so that practice standards could be much more consolidated. And I am just wondering if people were going to write to their MP that might be something quite concrete and straight forward that they could do.

Vivienne Parry: So are you suggesting, sir, that what you might be able to do is; if there is for instance a specific guideline, you take it along personally to your GP and say, here it is, please read it. Because it's more powerful than it just flopping through onto the doormat along with hundreds of other things.

Audience: Yes, I would go along with that. But I would also say that there should be Government, or a concerted code of practice, that should be adhered to as a pattern.

Vivienne Parry: We are talking about that mythical thing that we call joined up Government.

Mike Birtwistle : You are obviously quite high up your learning curve, as this is something which is frequently mentioned to us. The Charter will be calling for, and Mike Richard mentioned earlier, consultation going on about primary care and the future of primary care. One of the key calls of the Charter in our submissions list - which will be submitted tomorrow so the ink is drying on it now - will be for each PCT to have a register of local and national patient support groups who patients can go to for information. So what we want to do, we think at the moment standards of information are variable. We think PCTs have an absolute duty to be able to provide and signpost patients as to where that information is. We don't want to reinvent the wheel - it's out there already, let's use it.

Very interesting actually the National Audit Office survey which both John and Mike Richards referred to, shows prostate cancer is still a long way behind every other cancer. But overall there was an improvement in all cancers. Less of an improvement in prostate cancer than others, which is the very worrying and something we are going to address. But the one area across all cancers that didn't improve was access to patient support groups. Now think about this: how many of you here are from patient support groups? An awful lot of you, looking around. A good 20% of you are from patient support groups. And yet despite all the money that has gone into cancer services, less patients are given information about the work you do in five years. Now that tells me two things: One - it tells me - and I am going to be very blunt here - you are failing to get your message across to the NHS. And two - it tells me that the NHS is failing to listen.

We've absolutely got to address that if we are to get the patient experience up. And I think there are some easy steps we can take, such as making sure that each PCT does develop a directory of patient support groups which can address that, and that's what we are going to be campaigning for.

Mike Whitlam: Can I just add something to that if I may? And putting my PCT hat on for a minute - the pressure on PCTs, as you heard earlier, is to make the books balance. So you are up against at the moment, at this point in time, a battle that is going to make Directors listen to you rather than the pressure they are getting from the Department of Health.

Vivienne Parry: You were saying earlier with your blindness story, about how economics was a driver in the success of that campaign. Now one of the things that help PCTs balance their books is if they are able to see more patients and spend less time having deal with some of the things that actually probably the voluntary sector is better at doing.

Mike Whitlam: That is exactly what I was going to suggest. Because I think it is all well and good going to the members of parliament and through that route. But I think you do have to contact your PCTs directly and put to the boards your argument in the context that you have just put it; That this can actually help them achieve the issues that they are dealing with in terms of finance and produce a better a primary care service within their PCT, a better patient lead service and so on. It's just about how you address that in order to make it happen.

The second point I was going to make is that the voluntary sector at the moment is in a very good position to be able to become a provider for the NHS and should be looking to say to PCTs we can provide this range of services on contract to you, for a heck of a lot less than the private sector or even the acute trusts, because the acute trusts are charging an arm and a leg.

Audience: If the voluntary organisations who are struggling with the idea of collaboration go back to their charitable objectives they will probably find, in fact, I am sure they will find a common cause.

Audience: I am delighted if GUS is actually pursuing that with vigour because I think as most of us in the business world know that some companies just pay lip service to social responsibility, produce a report each year to show how well they are doing but nothing much happens. And I wondered whether you had any advice for the chicken and egg type situation for consumers to put pressure on companies, we've talked a lot about pressure on politicians, but what can consumers do to bring the agenda forward with companies? Just a thought.

John Peace: Its already happening now, in that there are investors, fund managers, who refuse to invest in certain types of stocks perhaps because of the practices that a particular business is undertaking, and clearly as a share holder or an investor in one of those funds, you should let the fund management know just exactly what your intentions are, what your concerns may be, and I think what you have seen over the course of that last five years or so is a great deal more shareholder activism, such so that the board of directors have to listen to what shareholders are saying to them. So that would be my advice get the shareholders galvanised to make sure the boards and the management in the company are doing what they want them to do.

Vivienne Parry: And I think you only have to buy one share to go to a shareholders meeting don't you?

John Peace: One share, indeed.

Vivienne Parry: They are rather expensive though GUS shares.

Mike Whitlam: It's actually much easier than that, you don't even have to buy a share. Because you are probably all customers of these companies. And I think if you want some advice on how to persuade people then go to the research that shows that a good corporate social responsibility program will help the bottom line of any company. And business in the community has got stacks of it on the website, or in hard copy. Have a look at that, take that along to the company if you want to persuade them and use your buying power, and only shop and use the businesses that have the corporate social responsibility programs that you want. GUS has clearly shown that they are committed to this cause so you can use it in that way, but the evidence is there that companies are increasingly listening to you now, and it isn't just about the investments, its about the whole business and how they can work with you to help both sides, and all you have to do is present the evidence and increasingly it works.

Vivienne Parry: Well thank you for saying all of you can now shop at Argos with enthusiasm of its support for this cause.

Audience: I have been encouraged this afternoon to hear words like work together, collaboration, clarity of thought, cross party forums and listening to the main political leaders excelling the work of prostate cancer charities. How can we move this forward? A suggestion I would make is, why not take the NHS out of the political arena. I know you can't completely do that, but when different governments come in and they move on there is always a re-jig and people going for the same jobs, and all this money that is wasted. Can you not see that if the NHS was taken out and made separate and that people with the knowledge, the expertise and the skills to move it forward, so when there is a general election every five years or so, things are maintained and not taken off track.

Vivienne Parry: I think actually your articulating probably what everybody feels about the NHS, that it should be out of political control, and I suspect that our three panellists might agree with that.

Mike Birtwistle: Can I just say one thing; prostate cancer is too important for party politics, it kills too many men it ruins too many lives. Having said that I want it to be an intensely political issue, because I don't want any politician to be able to stand up at the next election and not say they have done their bit for this cause. So yes lets not make it party political but lets keep it political because that is how we are going to get change.

Vivienne Parry: And in the real utopia we would like to live in, yes, the NHS would be outside political control.

Audience: One thing that has come across today is that it is quite important to know how many prostatectomies and how efficient your surgeon or your urologist is. How on earth does one find that out, because if you go to your GP and they then refer you to so and so hospital how does one as a patient find out how efficient that hospital is?

Mike Whitlam: At the moment under the new arrangements, hospitals are having to produce this kind of information in preparation for that. So its going to be a whole lot easier to get hospitals will have to produce it and PCTS and GPS will have to ask for that information. Watch this space over the next few months but by all means campaign to make sure that that level of information is made available throughout the arrangement we talked about.

Mike Birtwistle: I would add two things to that, one ask your GP, your GP should be able to tell you. All the cancer networks have had to produce action plans for implementing the guidance so they should have those figures, they should be available. There is no excuse if they don't they should be able to get them. If they still can't get them, my number is on the leaflets over there, phone me and I will find out for you.

Secondly I would just say the Charter is going to be doing a lot of work on this; on data about the performance of individual surgeons. It's very important that there is as much transparency as possible; however it is also very important that the data that is made available is as useful as possible to patients. So things such as crude death rates or exact numbers of operations carried out aren't necessarily the most helpful things. This is something we have been working very closely with Mike Richards, with the British Association of Urological Surgeons who are one of our signatories, with charities such as The Prostate Cancer Charity and others, to make sure that we get this right so hopefully by this time next year we will have some more good news to tell you on that one.

Vivienne Parry: But the very act of asking concentrates people's minds. So actually it is incredibly important to ask those questions. Sir, I know you come from Cornwall ..

Audience: I am from the Cornwall Prostate Support Association, I want to put out a brochure or pamphlet across Cornwall that says "Prostate cancer is here and it is killing". Do you think that is going over the top? Thank you.

Vivienne Parry: Mike, is he going over the top?

Mike Whitlam: No, of course he is not because it's true. I think one of the things you often see from campaigns of this kind, and just to give a different example from the blindness campaign; we did a calculation which showed that every 20 second in the world somebody went blind, and that was a strapline we put on everything. And in a meeting like this at the end of it we would have said: do you realise that while we have just been talking about it 50 kids in the world have just gone blind and they needn't have done? And in your case I think some kind of statement which is true but bold, which catches someone's attention is a very good campaign communication ploy. You have to be able to then back it up with the real facts, as this gentlemen over here said, you have caught their attention, what now?

Mike Birtwistle: I'll just add to that one thing - get in touch with your PCT. Get them involved in this public awareness pilot. We have got to make this public awareness pilot a success. Once we can make it a success in that area once, we can make it a success in every single area around the country. That is what we want to be doing. We want the Government to be doing public awareness campaigns - that's their role. So yes, do your own thing, but get your PCT involved in the Department of Health pilot as well.

Vivienne Parry: I would just say, this is me wearing my journalist hat rather than my GUS hat, but as a journalist local newspapers have a much, much bigger reach than national newspapers (and I shouldn't say that being that I write for national newspapers, but they do). And they are incredibly important. So if you research your local area and you find a statistic, then people will run with that, they want Cornish stories.

Audience: I must say it is nice to hear and people speak about things happening in the next two weeks rather than the next two decades. May I suggest in view of the figures given earlier about how only about 20% or 30% of the people were given the address of the local prostate support group on diagnosis or given contact with a prostate nurse or given literature at all, I certainly wasn't in any of those two cases. Would it not be a very simple procedure and only cost a few thousand pounds, for this meeting to write to the Department of Health and say could they instruct all PCTs to give patients on diagnosis, a prostate cancer journey card? We have heard this word, this prostate cancer journey. But a journey card with twenty boxes, or ten boxes to be ticked and dated like, given the name of the support group, given the telephone number of a prostate cancer nurse, given literature. If there is a tick, the figures that were at 20 or 30% will suddenly become 100%.

Mike Birtwistle: As I said earlier, our submission goes into the Department of Health tomorrow on the Your Health, Your Care, Your Say consultation. Very similar suggestions to that are going to be in it, absolutely, this is crucial. What I would say is, in the meantime if you need information, I will give it another plug, UK Prostate Link. Write down the web address - it's at the back there - have a look around it, there is good information on there. There is lots more we need to do in this area and we are going to be pushing very, very hard with the Department of Health on this one.

I am also on the back of your suggestion there, I'm going to make a suggestion to one of our signatories, Cancerbackup, who produce a series of power questions for cancer patients. My understanding is they don't have some yet for prostate cancer patients. On the back of your suggestion, I am going to suggest that they do them. If we can maybe catch two minutes after I will get your contact details so I can follow up on that.

Audience: I would like to thank GUS for all that they are doing. I think it's fantastic. We are asking - how do we get the best for men? One of the things that struck me during my twelve years of having prostate cancer, and has come out very strongly today is the fact that, so many men don't know where to go for information and it is partly patient led prostate cancer support groups, like the one I started in 1997, to say that we exist but we need the support of the Health Service to do that, and I am not impressed by amount of publicity we don't get from them but I am wondering about business. I would be very interested to know, from somebody who runs an occupational health unit for a London Borough, whether the occupational health unit in the various GUS companies makes opportunities for members of perhaps local prostate cancer support groups, to come in and talk to your male employees who are over forty? I am sure they would be only too pleased to do so.

John Peace: First of all can I just say thank you sir, for that very kind comment that you made there, it's very much appreciated. And clearly an organisation like GUS is a very diverse organisation. We have almost 1,000 shops around the country, we have factories, we have warehouses and obviously head offices, and therefore I wouldn't comment specifically on every aspect of our business. But I will take it upon myself to find out and make sure that we are doing everything we can to make sure those facilities are available.

Audience: The whole of England at the moment is undergoing peer review and we are about half way through the program. The results of that peer review are going to be made public, and this is really in response to somebody's question earlier; You can from those responses decide, the idea is that one of things you can decide - what kind of hospital you are being recommended to. And something that was said earlier about getting individual surgeon statistics is currently being debated by the National Steering Group of Peer Review as to whether or not they should form part of that public statement about the particular hospital that you are looking at. The whole program is due to be finished in 2007, and then there will be a follow up.

I also want to respond to something else that was said about support groups. Within the peer review process there is a standard for support groups. That has not been universally well received and that is currently being reviewed. But one of the big gaps that exist is that as it applies to hospitals, acute trusts and it doesn't apply to PCTs, that is a gap that I personally would like to see you lobby your local network about, I think the PCT ought to be far more involved, there is a gap between the primary and secondary care. Thank you.

Vivienne Parry: Thank you, that's a very useful comment. There is a lady here in a very fetching purple jumper.

Audience: I am a specialist nurse working with prostate cancer patients and five years ago we set up a support group. I was very well supported by my consultant at the time Mr Baxter-Smith, and we both ran it together with the support of a very good committee. This does not work unless you have got health professionals helping with the committees. You really do need your health professionals on board, and they have to do it in their own time, and a lot of people can't give that time. I've deliberately made the effort to do so because I enjoy it so much, it gives me a lot of pleasure. But not every health professionals can. I think if you can talk it through with your health professionals you might make them see the need more.

Vivienne Parry: So there you are - the ultimate collaboration. Your children have gone without meals in the evening have they?

Audience: My children have children. I must say we have 320 members and a widow's group as well that we support.