CampaignsHealthcare RationingCancer Screening & TreatmentProstate Cancer e-petition: the Government responds Prostate Cancer e-petition: the Government responds
By Alan Taylor - 29/01/2008
My online petition to the Prime Minister in September 2007 asked for an increase in public awareness of prostate cancer and what funds would be made available to do this. The petition was intended to keep a focus on prostate cancer awareness and was timed to be considered shortly before the Government’s Cancer Reform Strategy (CRS) was published. The CRS was published on 3 December 2007 and the response to my petition was given on 7 December 2007. There are links at the end of this article to the petition and the response.
But first of all a big thank you to those who signed the petition.
The response to the petition provides little that is new for anyone who is closely involved with prostate cancer - but it did at least produce a document which sets out the Government’s policy over the last few years and how this is being taken forward.
The response also included a significant recognition that “in the past, prostate cancer did not receive the attention it deserved”. What is really disturbing about this acknowledgement is that prostate cancer is the most common form of cancer diagnosed in UK men. Each year 35,000 men are diagnosed with prostate cancer and 10,000 men die from the disease.
Put another way, one man dies from prostate cancer every hour.
Awareness of prostate cancer is essential for men as they get older and it is good to see from the response that key messages for the general public have been identified by the Prostate Cancer Advisory Group.
Following a joint initiative by the Department of Health and the Prostate Cancer Charter for Action in October 2005 a charity in Coventry ran a pilot awareness campaign to assess the value of the messages and the effect on local NHS services. The pilot campaign has now been evaluated and the Prostate Cancer Advisory Group will decide whether or not prostate cancer awareness information should be widely available across the country.
This has to be good news but part of the evaluation was to assess how the awareness pilot to provide men with information about prostate cancer has affected local NHS services and, I assume, PCT budgets. I do wonder what will happen if the increased local interest from the awareness programme has resulted in an increase in medical case loads which cannot be contained within current budgets. Will any extended awareness programmes be scaled down or will new money be provided to meet the cost of any new NHS awareness initiatives?
Funding question ignored
The Government did not respond to this funding question in the petition but it was confirmed that The Prostate Cancer Charity has received £135,000 to help to increase awareness of prostate cancer with an additional £105,000 to be spent on improving awareness for African and Afro-Caribbean men who are at a greater risk of developing prostate cancer.
The Prostate Cancer Charity provides excellent information and support on their website and on their confidential Helpline and recently they received a Plain English Campaign award for two of their information booklets. I have no doubt that the Charity has made very good use of the money to spread awareness and to improve an already excellent service. However, these resources were provided several years ago and should not be confused with the new money needed now to introduce the extensive national awareness programme following the pilot awareness campaign.
Research Funding
Those who are closely involved with prostate cancer either as a patient or a healthcare professional see the lack of attention to prostate cancer as neglect which resulted in under funding for research and awareness. There is no doubt that lack of funding is an easy target for criticism. What is often forgotten is that no amount of research funding will progress the understanding of prostate cancer unless there are research institutions or other organizations - with teams of talented research professionals which are prepared to bid for quality research projects.
In their response to the petition the Department of Health confirmed that £20m has been allocated to the ProtecT trial to evaluate the effectiveness of screening using the PSA blood test. This trial started in 2001 and it will be another five or six years before anything comes out of it, so the funding amounts to less than £2m per year. The Department of Health is also providing £6.1 million of the total cost of £11.3 million for two collaborative projects over three years with the National Cancer Research Institute – one at the University of Cambridge and the other at the Institute of Cancer Research.
There will, no doubt, be other funding for research initiatives but if the Government funding of research for prostate cancer is around £4m to £5m per year this is a lot less than the reported annual salary paid to Fabio Capello to manage the England football team.
I would be very surprised if there were not sufficient scientific talent and research capacity in institutions in this country which could bid for research projects if the funding were made available. Compared with funding for other national research projects and NHS investment projects these amounts for prostate cancer are really tiny. Look no further than the £12 billion which will be spent on the new NHS computer records system, which in the view of many respected computer science experts will probably not see the light of day in its original specification.
Its effectiveness will be further reduced as thousands of individuals choose to opt out of the shared electronic patient clinical record element of the programme because of a lack of confidence in the ability of Government Departments to safeguard personal information. What is wrong with issuing a personal memory stick updated with relevant medical information by the person’s GP to be held by the patient?
Prostate Cancer Risk Management Programme (PCRMP)
The Government’s Prostate Cancer Risk Management Programme (PCRMP) provides GPs with an information package to explain to men the risks of prostate cancer and in particular the information they need to decide whether or not to have a PSA blood test when they do not have any symptoms.
Despite this programme anecdotal evidence continues to show that many GPs do not provide men with the information they need to decide whether or not to have a PSA blood test or they may be refused a PSA test. This is very worrying and is borne out by a survey by The Prostate Cancer Charity “The First National Survey – The Real Man’s Prostate Cancer Journey” in November 2005.
Part of the survey asked men about their experiences when they asked their GP for a PSA test when they did not have any prostate or related symptoms. 38% said the PSA test was fully discussed and information provided before the test; 13% were given written information without any discussion; 39% of men said they were not given any information and there was no discussion before the test. An unfortunate few, 13%, said their GP ignored their request for a PSA test and they had to return later. This means that only 40% of men were properly advised about the PSA test.
The information package provided to GPs under the PCRMP has been reviewed and this is certainly very welcome news. The revised information packs will be available to GPs in the Summer 2008 but I don’t think it is enough simply to provide an updated information pack to GPs. Men need to know that clear information about the PSA blood test is available from their GP. A man’s GP can explain the limitations, risks and consequences of having a PSA test and when a man has all the information he should know that he is entitled to have a PSA if he chooses to have one.
The Department of Health has confirmed its position about a national prostate cancer screening programme in the response to the petition and in the Cancer Reform Strategy. The policy has not changed which means that a national population prostate cancer screening programme by invitation will not be introduced until it can be shown that the PSA test provides more benefit than harm. This was to be expected and it reinforces the view that men should learn about the risks from prostate cancer and after considering the information provided by their GP decide whether or not a PSA test is for them. Not every man chooses to have a PSA test but men should know about the disease and that the risks increase as they get older.
Cancer Reform Strategy
The Cancer Reform Strategy was published on 3 December 2007 and it is an extensive and comprehensive strategic document. For the purpose of this article it may be helpful to pick out a few issues which affect men who have prostate cancer. First of all, the CRS sets out the strategic vision of the Government to give a clear direction to PCTs about the provision of cancer services over the next five years.
Strategic aims frequently go off track and in this case it is the PCTs which have to implement the new thinking on cancer services. One of the ten pledges in the document is that cancer services will continue to be properly funded. This is clarified by the explanation that PCTs will have the funds necessary to pay for the commitments made in the Cancer Reform Strategy. The commitment is clear but we must wait and see whether new money is made available and how the funding is juggled by the PCTs.
Clinical Nurse Specialists
The Cancer Reform Strategy recognised the crucial support provided by Clinical Nurse Specialists (CNS) to men and their families who have to deal with prostate cancer. If the support is so vital what do they do? The ideal scenario is that a CNS should be present or available when a consultant tells a man that he has prostate cancer. They then provide ongoing information and support to men and their families from the day of diagnosis, throughout the initial planning and treatment period and beyond as they manage their prostate cancer.
Some radical treatments may cure a man’s cancer but leave him with side-effects which could seriously affect his quality of life in future years. For example, a CNS can help a man and his family through urinary problems, impotency, loss of sex drive, bowel problems, as well as psychological and emotional problems.
The strategy has made it clear that PCT and commissioners must review the role of the CNSs and recruit more CNS where this is necessary to provide equality of access across the country for patients with different types of cancer. This will be a significant task for prostate cancer as shown by the report published in November 2007 by the Prostate Cancer Charter for Action “Because Men Matter – The Case for Clinical Nurse Specialists in Prostate Cancer”.
The report illustrated the disparity of CNS between different types of cancer but as important, it revealed that the Royal College of Nursing (RCN) has warned that CNS posts are under threat because PCTs have frozen posts and asked CNS to cover non-specialist duties.
More worrying is that CNS posts in some PCTs are under threat of redundancy. It cannot be right that CNSs who work with men and their families who are very often under severe stress face uncertainty about their future. Perhaps the Cancer Reform Strategy will reverse this trend!
Community-based Prostate Health Clinics
A new approach in the strategy for prostate cancer is for PCTs to set up community-based Prostate Health Clinics. In these clinics decision advisers would provide advice to men without symptoms who are considering a PSA test, men showing urinary symptoms or other symptoms relating to prostate cancer and men who are considering having a biopsy for prostate cancer following a PSA test. Men with benign prostate disease would also been seen by these clinics. The decision advisers would be clinical nurse specialists who are based locally or CNSs seconded from other areas of the PCT. GPs, community based specialist urologists or other appropriately trained practitioners could also carry out this role.
I have reservations about this for a number of reasons. If I was showing symptoms of prostate cancer I would be looking for a fast referral by my GP to a Urologist in the local hospital rather than speaking to a CNS. Similarly, I would prefer advice on whether or not to have a biopsy to come from a Urologist.
I think priorities here should be to increase the number of CNS in hospitals so their case loads can be reduced and to provide support to men faced with difficult decisions on the day of diagnosis and later. Decisions made by these men and their families may affect their physical, emotional and psychological quality of life for years to come and they need expert advice to make those decisions. Advice before deciding to have a PSA test is important but, on balance, support when prostate cancer is diagnosed and later is vital.
High quality treatment
The CRS pledges access to high quality treatment at every stage of an individual’s cancer journey. One of the newer treatments for early prostate cancer which was approved by the National Institute for Clinical Excellence (NICE) in March 2005 is High Intensity Focused Ultrasound or HIFU. This is a technique in which high intensity ultrasound energy is focussed on the tumour which increases the temperature and destroys the cancer cells.
One of the visions for 2012 is that there would be more evidence available on newer treatments including HIFU. The ink had hardly dried on the Cancer Reform Strategy when it was revealed that NICE is about to restrict HIFU to men who have failed to respond to conventional treatment. Cost seems to be a factor here because HIFU costs £13,000. However, HIFU does not require a stay in hospital and doctors are convinced that this is a good option for some men in the early stages of the disease. HIFU does not provide a better quality of life for only a few months but it can result in a cure or a better quality of life for many years.
A recent report in the European Journal of Urology makes the point that five years after treatment with HIFU eight out of ten men are healthy. I am not an expert or a clinician but once again NICE guidance looks to be going against expert medical opinion and new research.
Despite the alarming statistics it is clear from the response to the petition and the proposals for prostate cancer in the Cancer Reform Strategy that there will not be a quick fix for identifying, treating and managing prostate cancer. This was to be expected but I hope this short article provides a wake up call to remind men that as they get older the risk of them developing prostate cancer increases.