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Speech by John Neate, Chief Executive, The Prostate Cancer Charity

Thank you, Grant, for that introduction and good afternoon everyone.

I remember Vivienne Parry, Writer and Broadcaster, when she chaired the first National Conference in 2004, telling us that for every cause, there is a moment when its time has come. She felt that for prostate cancer, that time had arrived. But she also offered a warning. She said that in the ebbs and flows of public and political opinion, there was a critical window to be exploited. If that critical window wasn’t utilised, then the moment might be lost.

I am sure that many, if not all, of us follow very closely the public, political and media interest in prostate cancer. All of us share a responsibility for influencing that interest.

Broadly, three factors will ultimately lead to success in the battle against prostate cancer:    First – co-ordinated pressure from everyone affected by the disease or directly concerned about it Second – support from society more generally, including the media, the general public and politicians Third – a responsive Government and a better funded National Health Service

Over recent years, there has been encouraging progress in all three of these areas. There has been a growing sense that our ‘moment’ for prostate cancer has arrived. Although we want to see this much more powerfully expressed, there has been an emerging general feeling that prostate cancer has been neglected and misunderstood and that something should now be done to put that right.

Yet, we have seen a couple of potentially significant counter currents over recent weeks. Quite a lot of you might have picked these up.

Firstly, Professor Michael Baum, Emeritus Professor of Surgery at University College, London, and a highly-respected mover and shaker in the breast cancer world, has launched a tirade against the men’s health movement as part of a debate organised by the Institute of Ideas.

In an interview in The Times newspaper, Michael Baum says:   He would like to give the ‘self appointed custodians of men’s health’ a ‘bloody nose’ ‘They are trying to make men into women. They are trying to whip up the same kind of hysteria about health that bugs women, amongst men as well’  That the endless promotion of awareness about prostate cancer – which is leading more men to ask for PSAs – is ‘especially worrying’  ‘There is a potential risk of over diagnosing a latent pathology which if left alone would not threaten a man’s life, yet if detected, and acted upon, might threaten his continence and his performance’  ‘And there is no evidence that this obsession with health improves length and quality of life – in fact it can actually detract from both. Men should ignore these health zealots’

And writing in The Sun, Dr Keith Hopcroft – again having a dig at men’s health campaigns and talking about prostate cancer – says:  ‘We docs divide them into tigers and pussycats. Tigers are nasty and kill you, but you don’t see them around that much. Pussycats are much more common and just laze about in your prostate, never causing any harm. If you’ve got a pussycat, you’re better off not knowing’  ‘If you find out, you’ll just end up anxious. You could also end up having treatment – with nasty side effects – that you may not have needed’   ‘The problem is current tests can’t tell you for sure if your cancer purrs or roars’ ‘Add up these facts and what are you left with? Confusion. No reliable screening tests. Lots of ifs, buts and maybes. Hardly the stuff of a campaign, is it?’  In other words – until we understand prostates better and can stop talking cobblers about testicles – ignorance is bliss’

Yes, of course, all of us who work in the prostate cancer field understand only too well the complexities of dealing with it. The difficulties of separating the tigers from the pussycats. The tough decisions every man has to make about treatment choices. The risk of over treatment. The difficulties of getting across fair and balanced marketing messages. The inadequacies of current testing. The lack of evidence on screening. The list goes on……

I have no argument with much of what Michael Baum and Keith Hopcroft have to say. They are simply rehearsing the arguments we already understand. But they offer nothing constructive – no solutions. They show no way forward other than to encourage ignorance. Their message plays only to complacency.

The response to the uncertainties of prostate cancer can’t simply be to ignore the issue……to give up because it’s all too difficult….. to put our heads in the sand and just hope it will go away.

And this certainly cannot be our response. We would be letting down thousands of men and their families if it were. It’s vital that we increase our energy in raising the profile of this disease in the eyes of every UK decision-maker – making it a genuine priority for care, research, investment and government. A generally favourable media and public, then – but among that, a couple of troublesome warning shots. What then of the NHS? Please understand – all of you here today who work as health care professionals – the comments I want to make are not about you. Indeed, it is you who are bringing about the improvements we all want to see in men’s experience of prostate cancer. My comments are about the financial and structural environment you work in. We’ve seen several years of well-above-normal financial settlements. The 2002 Comprehensive Spending Review set out plans for inflation-beating awards to the NHS – over 7% a year for the five years to 2007/08. But the end of that ‘golden era’ of investment has already been signalled by the Chancellor. No-one here will have failed to notice the financial pressures already besetting the NHS – the stuff of daily news reports. We’ve heard already today about the benefits that Specialist Nurses bring to men’s experience of prostate cancer – helping them in complex decision-making, answering their many questions and providing support during what can be an enormously difficult and anxious time.

The Prostate Cancer Charter for Action – the powerful campaigning group of 24 charities and professional associations with a key interest in prostate cancer – is calling on Government and the NHS to ensure that Specialist Nurses are appointed to all prostate cancer treatment centres across the UK by the time of the next election. But what’s the reality? Over recent months, we’ve seen many nurses losing their jobs as a result of NHS financial deficits and it seems that the vital role of the Clinical Nurse Specialist is particularly under attack. There is mounting evidence that many are being asked to give up their specialist roles and to work instead as more generalist nurses on wards. Because of their high levels of skill and experience, Clinical Nurse Specialists are relatively expensive and an obvious target in a financially-pressurised NHS. Their work – dealing with information, advice and emotional support – can appear to be less tangible and a relative ‘luxury’ when compared with ward-based nurses.

But it is a short sighted and devalued NHS that fails to appreciate the key role that Specialist Nurses play – not only in their direct support of men and their families, but in education, in development of clinical practice and in redesign of patient pathways through the complexities of NHS service organisation.

The pressures on Specialist Nurses are just one manifestation of the constraints posed by NHS funding. Those of us who work with Mike Richards, the National Cancer Director, and his team within the Department of Health, know that in the drive to push NHS monies to the ‘front line’ – a good objective in many ways – the scope to fund new national projects in prostate cancer is becoming increasingly limited. Who is from Wales? Well, you’ll be well aware of the decision which has been taken not to commission brachytherapy services for the men of Wales. Brachytherapy – a treatment which is no longer experimental or untested and which offers, for some men, considerable benefits in terms of minimising disruption to working or home life. A treatment which is increasingly provided in England and Scotland. A treatment denied in

Wales on cost grounds and on the basis that there are equally valid alternatives already available. Taxotere or docetaxel – the chemotherapy drug recently approved by the National Institute for Health and Clinical Excellence to be made available on the NHS in England and Wales. Yet still some men are having to take on titanic battles with their Primary Care Trusts to access the treatment.

Whether the battle is for Taxotere, brachytherapy or for any other form of tried and tested treatment, it cannot be acceptable that men and their families who are already dealing with the tough news of a prostate cancer diagnosis, are having to wrestle at just the same time with NHS bureaucracy. I am extremely grateful to those men who are prepared to fight these battles, often in the glare of high profile media – spending huge amounts of personal and emotional energy in the process and sapping them of strength. Innovation is the theme running throughout today’s conference – and the challenge of converting that innovation into practical reality.

I believe that we can be encouraged by the extent to which prostate cancer has become a field for innovation. Today, alone, we are hearing about innovation in research, in public awareness raising, in specialist nursing practice and in ways of delivering services. But that innovation needs to spread across the UK and to be firmly embedded in day-to-day practice.

I referred a moment ago to the heroic battles being fought by some men to access tried and tested treatments – but treatments which are nonetheless innovative to the NHS. Yes, there are cost implications and yes, I do understand the challenges for PCTs in balancing their books and in meeting the inexorably rising public demand for wider treatment choices. But we know that prostate cancer is catching up from a very low base and it deserves to be given special recognition for that in funding decisions.

Progress was never made without innovation in any field of endeavour. It is simply not good enough for Health Commission Wales or any PCT, for example, to deny access to brachytherapy on the basis, essentially, that it adds nothing over and above what is already available. It is by extending choice, it is by innovating, by learning and by expanding knowledge that clinical practice and the patient experience improves.

The process of health development in the UK is a bit like a tug of war. Limited finances pull in one direction. Health advocates pull in the other. There are Ministerial pronouncements and policy initiatives and legal challenges and media campaigns. It’s often an uncomfortable experience – but in the end some form of equilibrium is established and some movement is made.

Innovation in prostate cancer is no optional extra. No luxury. It is essential. It is essential morally and it is essential economically – and the prostate cancer movement must drive this argument hard. What do I mean by, it’s essential economically? What I mean is that prostate cancer remains an area of major uncertainty. The differential nature of different prostate cancers – the tigers and the pussycats – and the imperfect state of diagnosis and prognosis, leads to all the difficulties we understand….the difficulties I referred to earlier and so uncomfortably laid out by Professor Baum and Dr Hopcroft.

In some ways, prostate cancer is an overstated problem. Yes, 32,000 men a year are diagnosed with prostate cancer in the UK and there is every likelihood that with increased PSA testing, that incidence will continue to increase. But we also know that many of those cancers – if we could be certain – are relatively harmless. Yet we can’t distinguish effectively those cancers which really need our attention from the ‘background noise.’

Determined investment in new screening technologies and in new diagnostic and prognostic tools would enable the NHS to identify where the problem really lies – and to

focus its limited resources where they would make a significant difference. Improved screening technologies would begin to unravel the present complexities of treatment choice, reduce uncertainty and allow much more effective targeting of public education messaging.

It would mean that we could concentrate on those men most at risk and those diagnosed with aggressive prostate cancer, and monitor others – sparing them from debilitating treatment which for so many can lead to a lower quality of life.

So yes, I believe that short term investment will bring long term gains. It would be a false economy to ignore that.

Finally, then a reminder. Three things will bring about change in prostate cancer. The general public mood – and we’ve touched on that. A responsive and well funded NHS – and we’ve touched on that. And finally, co-ordinated pressure from everyone affected by the disease or directly concerned about it. This Conference today is a manifestation of that growing ‘movement for change’. Across the UK, campaigning activity is growing. The groundswell of concerted action is absolutely essential. We must not only maintain what we already have, but deepen and broaden our impact – nationally with Governments of the UK and locally with MPs and Scottish Members of Parliament and Welsh Assembly members. Let’s work together relentlessly to ensure that innovation accelerates, that innovation is made to stick and that innovation is simply not allowed to be squandered. That’s our challenge and I know we’re up to it.

Thank you very much.

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