HC 1048-III Health CommitteeWritten evidence from The Prostate Cancer Charity (PH 69)

1. Introduction

1.1 Prostate cancer is the most common cancer in men in the UK. Each year 37,000 men are diagnosed and 10,000 men die from the disease. 250,000 men in the UK are living with and beyond the disease.

1.2 The Prostate Cancer Charity herein “the Charity” is the UK’s leading charity working with people affected by prostate cancer. The Charity funds research, provides support and information, and campaigns to improve the lives of men with prostate cancer.

1.3 The Charity provides the most comprehensive range of services dedicated to prostate cancer providing vital support for everyone affected by the disease, including men concerned about the disease as well as men who have been diagnosed, their partners, friends and families.

1.4 In this submission the Charity provides written evidence about the potential impact of the Governments proposed changes to the organisation of public health services on prostate cancer care in England.

1.5 The Charity would also welcome the opportunity to provide a witness to give oral evidence to the Committee on the issues raised.

2. Executive Summary

2.1 The Charity welcomes the opportunity to contribute to the Health Select Committee’s inquiry on public health and would like to raise the following points in our evidence submission|:

2.1.1 The Charity welcomes the proposals set out in the Department of Health’s Public Health White Paper to establish a public health services which will be “created to ensure excellence, expertise and responsiveness.

2.1.2 As the most common cancer affecting men in the UK prostate cancer is a public health issue. In the absence of a national screening programme, all men should be able to make an informed choice about the PSA test—a simple blood test that helps to identify a man’s risk of having prostate cancer.

2.1.3 The Charity is concerned by the lack of clarity about where the responsibility for commissioning and developing information about prostate cancer and the PSA test will lie in the new public health system. The Department of Health needs to clarify how information on PSA testing will be commissioned under the new public health structures.

2.1.4 Currently, very little is being done to improve men’s awareness of prostate cancer and the tests available to them. The National Awareness and Early Diagnosis Initiative (NAEDI) does not currently address prostate cancer awareness but has the potential to do so in the future. The Department of Health must clarify how NAEDI will be incorporated within Public Health England’s remit.

2.1.5 Devolving power to local authorities creates an opportunity for the development and delivery of targeted awareness campaigns that reach men at higher risk of prostate cancer. However, local authorities will need to be provided with adequate support, guidance and expertise to carry out their new functions as set out in the White Paper.

2.1.6 Careful planning must be undertaken to address the different geographic and administrative boundaries between local authorities and NHS organisations to ensure there are no gaps in public health services and initiatives, leading to the exclusion of some populations.

2.1.7 Indicators should be included within Domain 4 of the Public Health outcomes Framework to measure awareness and uptake of the PSA test to ensure that all men have the opportunity to make an informed choice about the test. An additional indicator is needed to measure the “take up of the NHS Health Check programme”.

2.1.8 Steps must be taken to improve GPs’ awareness of public health issues, including prostate cancer. GPs should receive training to enable them to proactively engage with men at higher risk of prostate cancer about their risk of the disease, the PSA test and the options available to them.

2.1.9 Educating primary care nurses and Community Health Champions to deliver key messages about prostate cancer and the PSA test would be an effective and cost effective way of raising awareness of the disease.

3. Background: Public Health and Prostate Cancer

3.1 As the most common cancer affecting men in the UK and the second highest cause of male deaths from cancer, prostate cancer is a public health issue.

3.2 In the UK, national screening programmes have been introduced for breast, cervical and colorectal cancers, helping to reduce mortality from these diseases. However, there is currently no prostate cancer screening programme. This leaves men at a significant disadvantage.

3.3 Currently, the UK National Screening Committee (UK NSC) advise against the introduction of a national screening programme for prostate cancer using the PSA test because evidence indicates that such a programme would lead to significant levels of over-diagnosis and potential over-treatment of the disease.

Box 1: The PSA test

The PSA test is a simple blood test that can indicate whether a man has a problem with his prostate. This problem may be prostate cancer but it could also be a benign condition, such as Benign Prostatic Hyperplasia. Currently, the PSA test cannot be used in a national screening programme because it cannot diagnose prostate cancer. It is also unreliable and can lead to a significant number of false positive and false negative results. Despite its limitations, it is the best available tool to help a man identify his risk of prostate cancer.

3.4 The Charity currently supports the UK NSC advice. However, recent research tells us that some men will benefit from having their prostate cancer diagnosed earlier when it has a greater chance of successful treatment. , This creates a need for all men at higher risk of prostate cancer to have the opportunity to consider the pros and cons of having a PSA test and make an informed choice about whether it is right for them.

3.5 To make an informed choice about the PSA test men need first to be aware of prostate cancer and the test. They then need information and one-to-one support from a health professional to guide them through the decision making process. The UK NSC recommend that in the absence of a screening programme men should be able to make an informed choice about the PSA test. In response, the Department of Health have developed the Prostate Cancer Risk Management Programme (PCRMP) to ensure that men who are concerned about the risk of prostate cancer receive clear and balanced information about the advantages and disadvantages of the PSA test and treatment for prostate cancer. The Programme consists of an information pack that has been sent to GPs across the country to assist them in the counselling of men who enquire about testing.

3.6 Aside from the review and redistribution of the PCRMP in 2009, there has been no significant activity to improve awareness and early diagnosis of prostate cancer since the publication of the Cancer Reform Strategy in 2007, and the condition has not been a priority for the National Awareness and Early Diagnosis Initiative.

4. Commissioning of Public Health Services

The Prostate Cancer Risk Management Programme

4.1 The Charity’s primary concern about the proposed changes to the organisation of public health services in England is that there is currently no clarity about where responsibility will lie for commissioning and providing information to men about prostate cancer and the PSA test.

4.2 The Healthy Lives, Healthy People strategy proposes that Public Health England should be responsible for funding and ensuring the provision of screening programmes already in place. In the absence of a screening programme for prostate cancer, the Department of Health must ensure that measures are in place to provide information about prostate cancer and the PSA test to men so that they have the opportunity to make an informed choice.

4.3 The Charity would welcome clarity about how information on PSA testing will be commissioned and funded in the future, as well as the agency that will be responsible for producing and disseminating relevant information and guidance to GPs about PSA testing.

4.4 Changes to public health services should also take into account the current problems with the delivery of information to men about prostate cancer and the PSA test through the PCRMP. Currently for men to access information through the PCRMP they must first be aware of prostate cancer and the PSA test. Then they must also visit their GP for advice. However, two thirds of men over 50 are unaware of the PSA test. In addition, one in five GPs never talk about the test with at-risk groups, unless they have potential symptoms of prostate cancer, despite early stage prostate cancer often having no symptoms. This means many men are not able to make an informed choice about whether to take the test.

Awareness raising

4.5 Section 4.3 of the strategy outlines that Public Health England is to also receive a ring-fenced budget. Clarity is needed about the manner in which initiatives such as the National Awareness and Early Diagnosis Initiative (NAEDI) will be incorporated within the remit of Public Health England. It is vital that the work of NAEDI continues to complement other work that aims to improve cancer services and outcomes, which are currently largely led by the Department of Health. Improvements in cancer outcomes will be best achieved through a combination of activities at local, regional and national levels, and as such, these activities must be delivered in a cohesive manner rather than in isolation. The Charity is keen to work with the Secretary of State for Health, the Chief Medical Officer and Public Health England to improve men’s awareness of prostate health issues.

4.6 To reduce mortality from prostate cancer, it is essential to increase the numbers of men with aggressive forms of the disease diagnosed at a stage when the cancer is amenable to treatment and decrease the numbers diagnosed with advanced disease. There has not been significant activity to improve awareness and early diagnosis of prostate cancer since the publication of the Cancer Reform Strategy in 2007, and the condition has not been a priority for NAEDI.

4.7 Increased and appropriate awareness work needs to be carried out to ensure all men are aware of prostate cancer, prostate cancer risk and the potential signs and symptoms of the disease. However, raising awareness is complex because there is no national screening programme for prostate cancer to direct people to and early stage disease often has no symptoms. National and local prostate cancer awareness campaigns to promote informed choice about the PSA test need to be funded and carried out in close partnership with the voluntary sector and informed by the target audience.

4.8 It is critical that activities undertaken to improve public health are evidence-based and we welcome the emphasis on this as set out in the Public Health White Paper. However, further detail on what types of evidence will be included in informing the public health evidence base is needed.

4.9 Programmes are already underway which aim to provide evidence about how interventions may be effective in raising awareness of cancer, such as the NAEDI. However, prostate cancer has to date been omitted from this initiative.

4.10 Through the Charity’s Testing Choices campaign, pilots to test new ways of providing information to men about the PSA test will take place. These pilots will provide new evidence about how best to raise awareness of prostate cancer and enable men to make an informed choice about the PSA test. The Charity would welcome the opportunity to share the findings from these pilots and work with Public Health England and local governments to develop awareness campaigns.

4.11 Public Health England should make funding available for national and local prostate cancer awareness campaigns, which should be carried out in close partnership with the voluntary sector and informed by the target audience.

4.12 As Public Health England will be responsible for commissioning health checks, the Charity also recommends that a wider range of conditions is discussed with men at the NHS Health Check. This check offers an excellent opportunity to provide information about prostate cancer and the pros and cons of PSA testing targeted at higher risk men. The Charity could provide advice on how best to approach this.

5. New Role of Local Government

5.1 The Charity broadly welcomes the decision to give local authorities responsibility for commissioning public health services locally as they will be best suited to understand the public health needs of local populations. Targeted approaches to raise awareness of prostate cancer and the PSA test are needed to ensure men at higher risk of the disease have the opportunity to make an informed choice about the test. Devolving power to local authorities creates an opportunity to commission targeted prostate awareness campaign. However, the Charity is concerned that local authorities will be expected to broaden their remit significantly and steps must be taken to ensure that they have sufficient capacity, resources and insight into delivering this role effectively.

5.2 In addition, careful planning must be undertaken to address the different geographic and administrative boundaries between local authorities and NHS organisations to ensure there are no gaps in public health services and initiatives, leading to the exclusion of some populations.

5.3 The Charity supports the establishment of local health and wellbeing boards which will play an important role in ensuring greater integration of NHS, public health and social care services. When developing their Joint Health and Wellbeing Strategies (JHWS) and Joint Strategic Needs Assessments (JSNAs), local health and wellbeing boards should work with the emerging clinical commissioning consortia to tackle variations and take steps to improve outcomes for men at risk of developing prostate cancer and those already diagnosed with the disease.

5.4 Recent figures published by the Charity have continued to show disparity in the rate of deaths across England—with twice the rate of deaths in Sandwell than in Kensington and Chelsea. The data on death rates from prostate cancer, averaged over a three-year period (2007–09), reveals a two-fold variation between Primary Care Trust (PCT). Of the 151 PCTs in England, 24 have a mortality rate which is more than 10% above the national average of 24 deaths per 100,000 of the population.

5.5 Through national support and guidance, health and wellbeing boards will need to take steps by working with local NHS commissioners, to address these unacceptable variations by raising awareness of prostate cancer locally among those most at risk of developing the disease and the treatment options available to them.

5.6 The Charity believes voluntary sector involvement in designing and delivering public health services is important and we welcome proposals for Directors of Public Health to work “in partnership with the local NHS and across public, private and voluntary sectors” when seeking to deliver improvements to health inequalities locally. This will be particularly important when seeking to improve public health outcomes for cancer.

5.7 Raising awareness of prostate cancer is a complex issue and many local authorities will not necessarily have the specialist expertise to undertake work in this area. Organisations such as The Prostate Cancer Charity have the experience and expertise to guide and inform public health initiatives (see Box 2)—supported by input from our service users—in order to make certain that the right information is provided in the right way.

5.8 Health and wellbeing boards should be encouraged to actively seek to engage with voluntary organisations when developing JSNAs, JHWBs and wider public health initiatives.

Box 2: The Prostate Cancer Charity Older and Wiser project

The Older and Wiser project, run by the Charity between 2007 and 2010, raised awareness of prostate cancer amongst African Caribbean groups in three London boroughs (Newham, Hackney and Lambeth). Volunteers were trained and supported to raise awareness in their local community, for example by giving talks to local community groups or holding information stands at local events. Amongst other results, we demonstrated that:

It is effective to have a programme that is user-driven and adapted to reflect the community’s needs and settings.

Community champions are useful because they: know their community; know how to communicate effectively with their audience; and devise innovative ways to get health messages across.

Educating men about their rights to information and PSA testing increases willingness to visit a GP with concerns about prostate cancer.

6. The Structure and Purpose of the Public Health Outcomes Framework

6.1 While uptake of “national screening programmes” is a proposed indicator of Domain 4 in the proposed Public Health Outcomes Framework, the Charity is concerned that there are no indicators designed to encourage local public health commissioners to promote the provision of information on other forms of testing.

6.2 The Charity has highlighted above (see points 4.1 to 4.4) the need for clarity over the commissioning of information about prostate cancer and the PSA test to ensure that men are able to make an informed choice about the test. To support the commissioning of this information, indicators will also be required within Domain 4 of the Outcomes Framework regarding awareness and uptake of the PSA test. The “take up of the NHS Health Check programme by those eligible” should also be included as an indicator to measure provision of this service across the country.

6.3 Local partnerships need to have access to, or be able to derive, the relevant data to identify inequalities in their area. In many areas of health we lack the necessary data to identify any inequalities that may exist. For example, data on the clinical outcomes from prostate cancer of people from particular ethnic or socio-economic backgrounds has not been routinely collected. As such it will currently be difficult to assess which groups within local populations need to be targeted to improve prostate cancer awareness. Furthermore, to ensure the Outcomes Framework can contribute to a reduction in health inequalities the collection of outcomes data must include information on different demographic factors, such as locality, age, ethnicity, sexuality, disability and socio-economic background.

6.4 The Charity believes that an indicator relating specifically to men’s health should also be included in the Outcomes Framework under Domain 5. This would encourage local authorities and their NHS partners to take action over time to address the causes of premature mortality among men.

7. Future of the Public Health Workforce

7.1 The Charity welcomes the proposals to “strengthen the focus on public health issues in the education and training of GPs.” The Charity believes this training should include information about how to proactively engage with men about prostate cancer (particularly those at higher risk of developing the disease) and to discuss the disease and all of the options available to them, including the PSA test.

7.2 GPs are often the first point of contact for men concerned or at risk of developing prostate cancer. As a result, it is vital that they are adequately trained and educated on public health issues.

7.3 Findings from a survey conducted by the Charity found that two thirds of GPs were unaware of the Prostate Cancer Risk Management Programme. This is despite efforts by the Department of Health to promote and disseminate a revised resource pack to GPs about the programme between July 2009 and March 2010.

7.4 If investment is targeted towards increasing public awareness about health conditions, prompting them to seek professional help when they have concerns, it is vital that GPs are aware of the latest programme and also motivated and able to implement them. Only then will we be in a position to ensure that all men at higher risk of prostate cancer are to be able to exercise their right to an informed choice about whether or not to have a PSA test.

7.5 The Charity is interested to see that the strategy recognises the importance of Community Health Champions. Educating community champions to take key messages into their community would be an effective and cost effective way of raising awareness of prostate, and other, cancers. The Charity has experience of training community champions to take these messages to their communities (see Box 2) and is willing to share its experience with local authorities.

7.6 The Charity will also be piloting the provision of a primary care nurse-led service to deliver information to men about prostate cancer and the PSA test, as a time and cost saving alternative to the PCRMP model of delivering this information through the GP.

June 2011

Prepared 28th November 2011