Peter,  Now that the forum is open, I would like to add my voice to this debate. It is disappointing that the patients you spoke to did not mention any of the prostate cancer charities by name. Disappointing, but perhaps not altogether surprising when you consider that our research of the NHS experiences of nearly 1,200 men with prostate cancer, carried out in 2005, revealed that 43% of men were not given information on prostate cancer at the time of their diagnosis. This was backed up by further research by the National Audit Office. We have worked extremely hard to address this gap since then. Many GPs and hospitals now issue our information to men affected by prostate cancer and recommend us to them. We have also worked closely with the NHS in establishing the Information Prescription pathway for prostate cancer on which our information will be extensively used. Only last night we won a Patient Information Award from the BMA for a publication many healthcare professionals are choosing to give to men at the point of diagnosis, so we are confident we are making strides in this area. The publication has also been well received by men living with prostate cancer, whose feedback has been highly positive. It also has to be pointed out that the sample of 30 patients you spoke to was relatively small, concerned one hospital and not all of them were living with prostate cancer. I would concur with Emma Halls’ point that the higher recognition of Cancer Research UK and Macmillan Cancer Support among the patients you targeted is likely to have been due to television and other advertising in which both charities invest heavily. We have worked very hard to raise the profile of prostate cancer and our charity. However, we do not have the budgets to spend on advertising that these charities deploy. This leads me to my next point. In deciding which charity ‘deserves’ donations, there is a place for both generic cancer charities and prostate cancer specific charities which are close to the cause and work to ensure the voices of men affected by prostate cancer are heard, understood and inform all of their activities. The prostate cancer community has played a pivotal role in raising awareness of the disease and placing it firmly on the front-burner, leveraging support from the media. It is also worth pointing out when considering which charities merit donations that you make your arguments solely on the basis of investment in research funding. Although research is a fundamental element in the fight against prostate cancer, it is not the only factor in deciding whether a donation is ‘deserved’. The reach of many of the prostate specific charities encompasses the care and welfare of men affected by prostate cancer, as well as their family and friends. The Prostate Cancer Charity’s mission is fighting prostate cancer on every front – through research, support, information and campaigning. We provide evidence-based information, a free and confidential Helpline service, work with African Caribbean communities, in addition to our research programme. Surely investment in these services is also deserved. A donation that supports these areas is in my view a donation well spent. This is echoed by the responses of those who use our services, which are overwhelmingly positive. In a survey in 2007, 96% of our Helpline users said that they would recommend the service to others.[1] We are also very proud of our research programme. Since 1994 we have invested over £7 million in research. Our research programme focuses solely on research into prostate cancer. Across the UK we fund the full range of research: basic; translational; clinical and psychosocial.  Many factors determine which charity deserves a donation. Prostate cancer is the most common cancer in men in the UK. I would hope that anyone wishing to support a prostate cancer-related charity will make an independent choice whether to give to one of the larger, generic charities or decide a smaller organisation, which has the best interests of men affected by prostate cancer and their families at the heart of everything it does, gets their vote. John NeateChief Executive The Prostate Cancer Charity
[1] Source The Prostate Cancer Charity and IPSOS Mori 2007

Hi Peter, for us we are getting most of our calls and support from families who have lost someone to prostate cancer, it maybe because men are not that great about talking about their health, and this may contribute to their lack of knowledge about us, we are only better known now because of our Bob Monkhouse campaign.  We all clearly have much more to to in order to get better recognition.

Emma Halls Chief Executive The Prostate Cancer Research Foundation

 Emma - I take your point about comparing like with like when it comes to looking at levels of research funding.

It would have been great to have compared prostate cancer with breast cancer but it was impractical for us to do this.    The clinicians we surveyed were urologists who were only familiar with funding research into prostate, bladder, kidney and testicular cancer . 

 By the way, the 38 urologists in the pilot clinician survey were an experienced bunch.  31 were specialist registrars.  66% had 3 or more years of research experience.  47% had been personally involved in dealing with charities to raise funds for research.

 Having said that, I recognise that our surveys are just testing the water on evaluating the work of charities.  There's plenty of imperfections.  That's why I've only given a few high-level conclusions and couched them in careful language.  Perhaps we will be able to compare prostate and breast cancer research funding in the future!

Peter Heywood, Intelligent Giving

Emma, you make a good point about CRUK and Macmillan getting more recognition because they advertise heavily. 

 All the same, keep in mind that we targeted PATIENTS in that particular pilot survey so I expected them to be much more aware of prostate cancer charities than the average person.   I thought they might have been getting advice and support  from some charities.   I also thought some patients might have looked into charities conducting research into their condition. 

Peter Heywood, Intelligent Giving

Peter, thank you for highlighting prostate cancer, and for opening the debate about what the prostate charities are doing. 

With regard to your first point, and which charities are recognised, the fact the CRUK and Macmillian stand out, must be in part to the huge sums of money they spend on advertising.  It is impossible to watch the TV without seeing an advert the Cancer Research UK and this must be in part why they are the most recognisable charity.  All of us in the prostate field, must now work as hard as we can (without spending huge sums of donated funds) to ensure that the general public know who we are and what we do, and I hope that is partly what our Bob Monkhouse 'Give a few bob' campaign has done.  We are though still a very small organisation, there are 4 of us that work in the office, so we do have a long way to go before we are anywhere near as recognisable.

 With regard to your second point aboutn the need for research I would argue that there is a need for more research and that it is not adequately funded.

You use kidney, bladder and testicular cancer as comparisions, but I do not agree that they work, for example prostate cancer is diagnosed in 35,000 men each year and kills 10,000.  Testicular cancer is diagnosed in 1,960 and kills 80 per year.  Surely it is better to use breast cancer as a comparison with affects 35,500 women and kills 12,392.  Breast cancer receives 10x the amount of funding as prostate cancer.  Prostate cancer is little understood, and the only way this will change is by money being put into research, and not just basic research, but also research into more effective, and less invasive treatment.  10,000 to my mind to far too many.

Anyone who calls us to enquire about donating will be given information on why we are different, and why giving money to a prostate specific charity is more effective than giving to a large 'cancer' charity, we actually fund much early stage research that the larger charities don't fund.

I know that we all need to do more to make people aware of what we do, and why we are different, but I hope that we are doing this, and that people will make an informed choice when it comes to making a donation.

Emma Halls Chief Executive The Prostate Cancer Research Foundation