Download Five inequalities, five solutions.

Men United v Prostate Cancer:
Five inequalities, five solutions.
2
Foreword
At the start of 2014, Prostate Cancer UK launched Men United v Prostate Cancer, a
campaign to encourage everyone to stand together and create a movement for change in
men’s health. Within three months, over 100,000 people had signed for Men United to help
us get men’s health back on the agenda in the UK.
At the heart of this campaign is the issue of inequalities faced by men with, and at risk of,
prostate cancer. These inequalities exist across the country, across the population and at
different stages of a man’s prostate cancer experience. This report doesn’t outline a single
issue, but rather summarises each inequality in its own chapter, providing the evidence
around the current situation and our recommendations for the future.
We aim to highlight and eradicate inequalities around awareness, age, ethnicity, address
and access to treatments, to ensure that all men diagnosed with prostate cancer in the UK
receive the best possible information, treatment and care.
Content
Foreword 3
Recommendations 4
Diagnosis, awareness, information and support 6
Inequalities faced by Black men with prostate cancer 10
Quality Care Everywhere? Prostate cancer and variation across the UK 14
Age 18
Access to treatments 24
3
Recommendations
Diagnosis, awareness, information and support
Inequality: Despite prostate cancer being the most common cancer in men, public health
programmes have not included awareness raising work on the risk factors for this disease. Nor
are men getting the right help and support for side effects following treatment.
Our call: Public Health England, the Scottish Government, Public Health Wales and the Public
Health Agency in Northern Ireland should design awareness programmes such as ‘Be Clear
on Cancer’ and ‘Detect Cancer Early’ around risk factors rather than symptoms alone. Health
departments in all countries of the UK must urgently review and update the current prescribing
guidance for erectile dysfunction. The Prostate Cancer Risk Management Programme (PCRMP)
should be better communicated and used in primary care across the UK.
Inequalities faced by Black men with prostate cancer
Inequality: Black men have double the average risk of being diagnosed with prostate cancer
in their lifetime. However, awareness of prostate cancer is low in Black communities; and
Black men with cancer are reporting poorer experiences of NHS care. Black men are more
likely to die from prostate cancer compared to other ethnicities, and a lack of comprehensive
data on cancer outcomes and experiences by ethnicity makes it difficult to assess what lies
behind these inequalities.
Our call: Public Health England, the Scottish Government, Public Health Wales and the Public
Health Agency in Northern Ireland should target future awareness programmes on prostate
cancer towards Black communities, and encourage more comprehensive collection and
reporting of ethnicity data for all aspects of prostate cancer care.
Quality Care Everywhere? Prostate cancer and variation
across the UK
Inequality: There are inconsistencies in the quality of care and support that men receive
across the UK.
Our call: NHS England must ensure that measurable aspects of patient experience in low
performing trusts are brought into line with the best in England – for example, all men should
have a detailed written care plan, an assigned Clinical Nurse Specialist, and the necessary
information and support following a prostate cancer diagnosis. The Scottish Government
must introduce a National Cancer Patient Experience Survey to identify and find solutions
to issues faced by men with prostate and other cancers. In Wales, the Welsh Government
should act on the recent Cancer Patient Experience Survey to address the often poor levels
of support offered to men with prostate cancer. The Department of Health, Social Services
and Public Safety (DHSSPS) in Northern Ireland will also need to listen to its own Cancer
Patient Experience Survey when it is released in the coming months to ensure that prostate
cancer patients’ needs are addressed.
4
Age
Inequality: Older men diagnosed with prostate cancer are far less likely to be told about side
effects of treatment, and at times have fewer treatment options offered to them, than younger
men. It is not clear that treatment pathways are based on a person’s fitness and preferences
rather than their age alone.
Our call: NHS England, NHS Wales, the Scottish Government and Health and Social Care
(HSC) in Northern Ireland should ensure that older men are not denied treatments on the
basis of their age, and that they are given information about possible treatment side effects.
Access to treatments
Inequality: Not all men in the UK have access to the information they need to make an
informed choice about the PSA test, or about the best treatments or aftercare support for
prostate cancer, especially for side effects such as erectile dysfunction.
Our call: Commissioning and regulatory authorities should take urgent steps to ensure that
the best treatments and diagnostics are available across the UK. For example, the National
Institute for Health and Care Excellence (NICE) must ensure that clear guidance is provided
to allow men to access treatments for advanced cancer; the Scottish Medicines Consortium
(SMC) must ensure greater patient participation and transparency in their decision making;
health departments in all countries of the UK must urgently review and update the current
prescribing guidance for erectile dysfunction; and the Prostate Cancer Risk Management
Programme should be better communicated and used in primary care across the UK.
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Diagnosis, awareness, information and support
Improving risk assessment for prostate cancer
One of the major challenges facing men in the UK today is that there is no reliable, widely
applicable, easy way to assess their individual risk of developing prostate cancer. A PSA
(prostate specific antigen) test alone cannot provide men and their doctors with all the
information they need to make life-changing decisions about treatment and monitoring.
Although some risk calculators (nomograms) have been developed for use in other countries,
we need a tool that is applicable to the UK population and acceptable to men in the UK, their
doctors and the NHS when delivered through primary care.
This is why we plan to provide up to £1.5m to support research that will develop and test a
more effective tool that combines a suite of known risk factors to give a more useful indication
of a man’s risk of prostate cancer. Our vision is that this research will deliver a tool backed by
appropriate evidence that is ready for wide scale clinical implementation through NHS primary
care within a 5 year timescale. Ultimately, the aim of a new risk assessment tool should be to
reduce unnecessary biopsies and treatment and increase the number of men whose aggressive
prostate cancer is detected and treated early.
Making an informed choice about the PSA test
Until a risk assessment tool is developed and widely used, determining their PSA level is the first
step towards a diagnosis for most men with prostate cancer. Men aged 50 and over have the
right to make an informed choice about whether to have a PSA test under the Prostate Cancer
Risk Management Programme (PCRMP) (1). In order to make this choice, men need to:
• know their risks (age, family history and ethnicity); and
• know their rights (to a PSA test free of charge on the NHS if they are aged 50 and over
provided they have had a discussion about the pros and cons with a GP (1)).
We know from a recent survey that GPs think that men over 50 should have access to the
PSA test if they want one; that balanced information should be provided; and that GPs
should be responsible for delivering this information (2). However, the GPs themselves are not
initiating conversations about prostate health proactively. We also know that 53% of UK men
over 50 have never heard of the PSA test (3). So at the moment men are not in a position to
make an informed choice.
Despite being the most common cancer in men in the UK (4), prostate cancer is often omitted
from awareness programmes such as Be Clear on Cancer and Detect Cancer Early because
early stage prostate cancer does not always present with symptoms. We believe that there is a
need for such programmes to be redesigned so that prostate cancer can be incorporated and
men can make an informed choice about testing.
Information and support
Prostate Cancer UK’s Quality Checklist outlines the care and support men should expect
to receive whether in England, Wales, Northern Ireland or Scotland (5). The standards in
the Checklist are based on research with over 700 people affected by prostate cancer and
healthcare professionals (6,7).
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Men aren’t getting the right help and support for side effects
A 2012 survey of 866 prostate cancer survivors in England (8,9) showed that on average,
58% of prostate cancer patients were unable to have an erection 1-5 years after treatment,
with a further 11% having significant difficulty in having or maintaining an erection, 13% having
difficulty controlling their bowels and 39% having some degree of urinary leakage. The presence
of urinary leakage was significantly associated with poorer quality of life. Prostate Cancer
UK’s 2012 survey of 610 men’s views of quality care found an overwhelming majority of men
reported experiences of treatment side effects (7) – over 4 out of 5 (85%) told us that they had
experienced side effects as a result of their treatment. Our survey found that of the men who
reported experiencing side effects as a result of treatment, 79% rated erectile dysfunction as
‘bad’ or ‘very bad’, 72% rated loss of libido as ‘bad’ or ‘very bad’, 60% rated anxiety as ‘bad’
or ‘very bad’, 59% rated fatigue as ‘bad’ or ‘very bad’ and 54% rated urinary incontinence as
‘bad’ or ‘very bad’ (7).
Prostate Cancer UK has commissioned a 3-year UK-wide survey of prostate cancer survivors
with the active involvement of NHS partners. This will give us an unparalleled insight into men’s
quality of life following a diagnosis of prostate cancer, including what patients feel they need
from treatment and care, and will identify current gaps in treatment and care according to men
and families affected by prostate cancer.
Not all men with prostate cancer are receiving information, care and support for the life
changing side effects that result from their treatment. The 2013 National Cancer Patient
Experience Survey (NCPES) in England (10) found that:
• 36% of prostate cancer patients were not told about treatment side effects that could affect
them in the future
• 26% of prostate cancer patients did not have possible side effects explained in an
understandable way
• 17% of prostate cancer patients were not given written information about side effects.
Prostate Cancer UK’s 2012 survey found that 1 in 5 men (19%) described the care and
support they received for the side effects they experienced as ‘bad’ or ‘very bad’. After
completing treatment, 1in 3 men (31%) said that they received ‘too little’ aftercare for the
treatment of side effects.
Erectile dysfunction and prostate cancer
A Prostate Cancer UK survey undertaken in 2012 showed that 76% of men who experienced
treatment side effects suffered from erectile dysfunction (ED) (7). Of the men who experienced
ED, 79% said they found it very difficult or difficult to deal with. The Department of Health’s
2012 survey of prostate cancer survivors found that only 35% of respondents reported having
no difficulty with sexual matters (8). In the same survey, 58% reported that they were unable to
have an erection at all with a further 11% reporting difficulty having or maintaining an erection.
The US Prostate Cancer Outcomes Study (PCOS) questioned how big a problem sexual
function was at two years post-surgery. They found that 14% of men said it was no problem,
23% said it was a small problem, and 42% said it was a moderate to big problem (13,14).
This research also highlights that the effect of ED on patients’ quality of life is both variable and
highly individualised; some patients with significant sexual dysfunction experience little bother
while others may experience minimal dysfunction but significant bother (15). These findings are
reflected in qualitative, interview-based research commissioned by Prostate Cancer UK into the
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differential support needs of men with prostate cancer at different life stages (11). This research
found that for many men, ED is the most distressing impact of their prostate cancer. Before
treatment, men often underestimated the impact that this side effect might have on their selfidentity. Although ED had more of an impact on younger men, older respondents were often
surprised at how much they were emotionally affected by it.
There are currently no NICE guidelines on the management of ED. Other professional
organisations, including the British Society for Sexual Medicine, have produced a number of
guidelines (12), but none of these have the same weight and influence as guidelines produced
by NICE or the equivalents in the devolved nations. To address this, Prostate Cancer UK has
supported the development of a new guideline (13), and quick guide to complement it, for the
treatment of ED post-surgery for prostate cancer. This guidance reflects best practice, including
the recognition that the earlier an ED management strategy is in place, the better the outcome
is likely to be. This includes having a strategy in place before treatment starts, as well as having
access to a combination of drugs and devices to treat ED. In addition, the prescribing guidance
has not been comprehensively updated since 1999, despite significant developments in the
field, and urgently needs to be reviewed and updated. Without this, men will continue to receive
inadequate support for ED.
In summary
Inequality: Despite prostate cancer being the most common cancer in men, public health
programmes have not included awareness raising work on the risk factors for this disease. Nor
are men getting the right help and support for side effects following treatment.
Our call: Public Health England, the Scottish Government, Public Health Wales and the Public
Health Agency in Northern Ireland should design awareness programmes such as ‘Be Clear on
Cancer’ and ‘Detect Cancer Early’ around risk factors rather than symptoms alone.
Health departments in all countries of the UK must urgently review and update the current
prescribing guidance for erectile dysfunction. The Prostate Cancer Risk Management
Programme should be better communicated and used in primary care across the UK.
8
References
1. Burford D, Kirby M, Austoker J. Prostate Cancer Risk Management Programme information for primary
care; PSA testing in asymptomatic men. Evidence document. NHS Cancer Screening Programmes
[Internet]. 2010. Available from: http://www.cancerscreening.nhs.uk/prostate/pcrmp-guide-2.html
2. Kantar Health. Figures from a survey of 500 GPs in the UK conducted by Kantar Health on behalf of
Prostate Cancer UK in January 2014. 2014.
3. YouGov. Figures from YouGov Plc. Total sample size was 2864 adults. Fieldwork was undertaken between
13th January to 4th February 2014. The survey was carried out online. The figures have been weighted
and are representative of all UK adults (aged 18+). 2014.
4. Cancer Research UK. Cancer incidence for common cancers: Ten most common cancers in males (2011)
[Internet]. 2014. Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/incidence/
commoncancers/#Ten
5. Prostate Cancer UK. A quality checklist: Your standards of care [Internet]. 2013 [cited 2013 May 10]. Available
from: http://prostatecanceruk.org/media/1604548/a_quality_checklist_-_your_standards_of_care.pdf
6. Prostate Cancer UK. It’s time for quality care. Everywhere. [Internet]. 2013 [cited 2013 May 10]. Available
from: http://prostatecanceruk.org/media/2105544/2298-its-time-for-quality-care-everywhere_full-2-.pdf
7. Prostate Cancer UK. Men’s views on quality care in prostate cancer: What does good quality care mean for
men with prostate cancer? [Internet]. 2012. Available from: http://prostatecanceruk.org/media/1559431/
prostate_cancer_uk_quality_care_survey_report_june_2012.pdf
8. Glaser AW, Fraser LK, Corner J, Feltbower R, Morris EJA, Hartwell G, et al. Patient-reported outcomes of
cancer survivors in England 1–5 years after diagnosis: a cross-sectional survey. BMJ Open [Internet]. 2013
Jan 1 [cited 2013 Apr 16];3(4). Available from: http://bmjopen.bmj.com/content/3/4/e002317
9. Quality of Life of Cancer Survivors in England - Report on a pilot survey using Patient Reported Outcome
Measures (PROMS) [Internet]. Department of Health; 2012. Available from: https://www.gov.uk/
government/uploads/system/uploads/attachment_data/file/267042/9284-TSO-2900701-PROMS-1.pdf
10. Quality Health. Cancer Patient Experience Survey 2012-13 National Report [Internet]. 2013. Available from:
http://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2013-nationalcancer-patient-experience-survey-reports/301-2013-national-cancer-patient-experience-survey-programme-national-report/file
11. BritainThinks. Findings from qualitative research carried out by BritainThinks. The total sample size was 53
adults affected by prostate cancer across the UK (including 8 partners of men with prostate cancer). The
fieldwork was undertaken between 5th February and 13th March 2014, comprising telephone interviews,
focus groups and online qualitative research. 2014.
12. British Society for Sexual Medicine. Guidelines on the management of erectile dysfunction [Internet]. 2013.
Available from: http://www.bssm.org.uk/downloads/BSSM_ED_Management_Guidelines_2013.pdf
13. Kirby MG, White ID, Butcher J, Challacombe B, Coe J, Grover L, et al. Development of UK
recommendations on treatment for post-surgical erectile dysfunction. Int J Clin Pract. 2013;n/a–n/a.
9
Inequalities faced by Black men with
prostate cancer
Black men are more likely to develop prostate cancer than men of other ethnic backgrounds.
In the UK, 1 in 4 Black men will be diagnosed with prostate cancer in their lifetime, putting
them at double the risk of UK men as a whole (1). Black men may also be more likely to be
diagnosed with prostate cancer at an average of 3-5 years younger than White men (2–4).
The prostate cancer mortality rate is 30% higher for Black men than White men in the UK (5).
Awareness and diagnosis
Cancer awareness is generally low in Black and Minority Ethnic (BME) groups (6). This is a
worrying trend given the crucial role that awareness and detection play in catching cancer
early, when it is most treatable (7). Furthermore, prostate cancer survival rates correspond
to stage at diagnosis, with survival rates far worse for men with advanced disease than for
those with prostate cancer that is caught in the early stages (8). Men’s awareness of prostate
cancer is key; yet awareness amongst men is low and, despite an increased risk of being
diagnosed with the disease, awareness is lowest amongst Black men (9).
Within BME communities, cancer is sometimes perceived as a disease affecting the White
population only (10). This view may be contributing to a lower engagement amongst Black
communities with national cancer awareness campaigns, which deliver vital information about
risk factors and how to access screening services.
Prostate cancer is the most common cancer in men (11). In a survey of 1377 men, 91% of
White men had heard of prostate cancer, decreasing to 81% amongst Black men (9). We
call on the Department of Health, NHS England and Public Health England (PHE) to deliver
a national awareness campaign for prostate cancer as part of Be Clear on Cancer (BCOC).
As most early prostate cancer does not cause any symptoms, an awareness campaign for
prostate cancer would need to focus on associated risk factors and how and when men
should access diagnostic services. It will be vital to include risk by ethnicity in all information
material so that Black men know their increased risk and are empowered to access services.
Another contributing factor to poorer health outcomes and the health inequalities gap is
deprivation. Deprivation-based health inequalities are inextricably linked with ethnicity. The
unemployment rate of all Black men of working age in 2009-11 was 18% (12), representing
the highest rate of unemployment of all ethnicities. With cancer outcomes poorest for men
classified as ‘most deprived’, it is clear that the wider, socioeconomic inequalities faced by
Black men are impacting on their health. Prostate cancer stage at diagnosis data was only
available for 26% of newly diagnosed prostate cancers in 2008-2010. Of these cases, 24%
had ‘unknown’ ethnicity (13). We recommend that PHE ensures stage at diagnosis data is
systematically collected and recorded by ethnicity. We believe that improved data collection will
contribute to our understanding of the barriers Black men face in accessing services, which will
in turn inform both national and local strategies about closing the inequalities gap.
10
Treatment and care
PHE already collects important data on the treatment routes of men diagnosed with prostate
cancer (14). These data are broken down by ethnicity, enabling us to draw demographic
comparisons and monitor equality of access.
National Cancer Patient Experience Survey (NCPES) results provide data that are paramount
to guiding improvements in the NHS. In all NCPES to date, BME patients are significantly less
likely than other patients to be positive about their care (15–17). The 2013 NCPES showed
37% of Black cancer patients rated their overall care as excellent, compared with 55% of
cancer patients of all ethnicities (see figure below).
100
80
60
40
0
Visited their GP five or
more times before being
referred to hospital
20
Comparison between all cancer patients and Black cancer patients in the
2013 NCPES.
18%
9%
Involved as much as they
wanted to be in the decisions
about their treatment and care
72%
59%
Given enough care and help
from health and social
services post discharge
All cancer patients
60%
Black cancer patients
45%
55%
Rated their overall
care as excellent
37%
0%
20%
40%
60%
80%
100%
Source: (17). Black cancer patient data from Quality Health, 2014, by special request.
8.1% of respondents to the 2013 NCPES were prostate cancer patients (17). We do not have
data on the experience of Black prostate cancer patients specifically, as the sample size was
too small. For all cancers, however, Black respondents reported statistically significant overall
poorer experiences compared with White respondents, representing clear ethnicity-based
health inequalities in NHS cancer care.
Evidence shows that those cancer patients who have a positive experience of their NHS
treatment and care often have better outcomes (18). With poorer experiences being
consistently reported by Black cancer patients, it is likely that health outcomes within this
group are being impacted by equality failings in NHS treatment and care.
11
Of the 68,737 cancer patients that responded to the 2013 NCPES, only 1.4% identified
themselves as Black (17). Given that this figure only represents 0.05% of England’s Black
population (1,846,614) (19), we do not believe that the views of Black cancer patients have
been adequately represented. The proportion of White people represented is significantly
higher. (0.15% of England’s 45,281,142 White population). We recommend that PHE set a
demographic response rate target for the NCPES which is representative of Black men
with cancer.
Living with and beyond prostate cancer
There are 255,000 men living with and beyond prostate cancer in the UK (20). Due to the
lack of data on patient ethnicity, we do not know how many of these are Black men; however,
using data collected from the NCPES, we do know that Black cancer patients are reporting
lower levels of help and care from health and social services following hospital discharge,
compared with the level reported by White patients. Whilst these patient experience data
inform us of an inequalities gap that needs closing, without adequate regional profiling data,
interventions cannot be targeted and prioritised appropriately under localised commissioning
structures. Getting healthcare access right in the community setting is important in prostate
cancer given that a large proportion of treatment takes place at the primary care level.
The Department of Health found that conclusions on ethnicity-based variations reported in the
National Cancer Survivorship Initiative’s (NCSI) first pilot survey of cancer survivors could not
be drawn due to the absence of available data (21). By a rise in cancer survey response rates
amongst Black participants, health outcomes for this demographic can be improved.
The National Cancer Data Repository (NCDR) recorded 102,252 new cases of prostate
cancer in 2008-10 in England. Of these, 26% had no ethnicity recorded (13). Proportionally,
prostate cancer incidence is significantly higher in Black men than in White men. Without
adequate data, the NHS will not be in a position to prioritise improvements towards meeting
the needs of Black men who have returned from hospital care into the community and are
living with or beyond prostate cancer with associated morbidities.
In summary
Inequality: Black men have double the average risk of being diagnosed with prostate cancer
in their lifetime. However, awareness of prostate cancer is low in Black communities; and
Black men with cancer are reporting poorer experiences of NHS care. Black men are more
likely to die from prostate cancer compared to other ethnicities, and a lack of comprehensive
data on cancer outcomes and experiences by ethnicity makes it difficult to assess what lies
behind these inequalities.
Our call: Public Health England, the Scottish Government, Public Health Wales and the Public
Health Agency in Northern Ireland should target future awareness programmes on prostate
cancer towards Black communities, and encourage more comprehensive collection and
reporting of ethnicity data for all aspects of prostate cancer care.
12
References
1. Prostate Cancer UK. Working out the risk of prostate cancer in Black men [Internet]. 2013
[cited 2013 Oct 30]. Available from: http://prostatecanceruk.org/we-can-help/african-caribbeancommunities/1-in-4-stat-explained
2. Ben-Shlomo Y, Evans S, Ibrahim F, Patel B, Anson K, Chinegwundoh F, et al. The risk of prostate cancer
amongst black men in the United Kingdom: the PROCESS cohort study. Eur Urol. 2008 Jan;53(1):99–105.
3. Karami S, Young HA, Henson DE. Earlier age at diagnosis: another dimension in cancer disparity? Cancer
Detect Prev. 2007;31(1):29–34.
4. Metcalfe C, Evans S, Ibrahim F, Patel B, Anson K, Chinegwundoh F, et al. Pathways to diagnosis for Black
men and White men found to have prostate cancer: the PROCESS cohort study. Br J Cancer. 2008 Oct
7;99(7):1040–5.
5. National Cancer Intelligence Network. Mortality from Prostate Cancer: Urological Cancers SSCRG
[Internet]. 2012. Available from: http://www.ncin.org.uk/view?rid=1701
6. National Cancer Intelligence Network. Evidence to March 2010 on cancer inequalities in England [Internet].
2010. Available from: http://www.ncin.org.uk/view?rid=169
7. Richards MA. The size of the prize for earlier diagnosis of cancer in England. Br J Cancer. 2009 Dec 3;101
Suppl 2:S125–129.
8. National Cancer Intelligence Network. Prostate Cancer Survival (1999-2002) - NCIN Data Briefing [Internet].
2010. Available from: http://www.ncin.org.uk/view?rid=47
9. YouGov. Figures from YouGov Plc. Total sample size was 1723 men. Fieldwork was undertaken between
13th January to 4th February 2014. The survey was carried out online. The figures have been weighted
and are representative of all UK adults (aged 18+). 2014.
10. BME Cancer Communities. Hear Me Now - The uncomfortable reality of prostate cancer in black AfricanCaribbean men [Internet]. 2013. Available from: http://www.bmecancer.com/index.php/cancers/prostatecancer/82-hearmenow
11. Cancer Research UK. Cancer incidence for common cancers: Ten most common cancers in males (2011)
[Internet]. 2014. Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/incidence/
commoncancers/#Ten
12. ethnicity.ac.uk. Unemployment by gender and ethnicity, 2009-2011 [Internet]. [cited 2014 May 15].
Available from: http://www.ethnicity.ac.uk/employment/unemployment.html
13. Public Health England. Prostate cancer and ethnicity [Internet]. 2013. Available from: http://www.ncin.org.
uk/view?rid=2635
14. National Cancer Intelligence Network. Treatment Routes in Prostate Cancer Urological Cancers SSCRG
[Internet]. 2012. Available from: http://www.ncin.org.uk/view?rid=1260
15. National Cancer Patient Experience Survey Programme: 2010 National Survey Report. Department
of Health [Internet]. 2010. Available from: https://www.gov.uk/government/uploads/system/uploads/
attachment_data/file/216682/dh_122520.pdf
16. Department of Health. National Cancer Patient Experience Survey 2011/12 - National Report [Internet].
2012. Available from: https://www.wp.dh.gov.uk/publications/files/2012/08/Cancer-Patient-ExperienceSurvey-National-Report-2011-12.pdf
17. Quality Health. Cancer Patient Experience Survey 2012-13 National Report [Internet]. 2013. Available from:
http://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2013-nationalcancer-patient-experience-survey-reports/301-2013-national-cancer-patient-experience-survey-programme-national-report/file
18. NHS Confederation. Feeling better? Improving patient experience in hospital [Internet]. 2010. Available
from: http://www.nhsconfed.org/~/media/Confederation/Files/Publications/Documents/Feeling_better_
Improving_patient_experience_in_hospital_Report.pdf?dl=1
19. Office for National Statistics. KS201EW - Ethnic group [Internet]. 2011 [cited 2014 May 2]. Available from:
http://www.nomisweb.co.uk/census/2011/KS201EW/view/2092957699?cols=measures
20. Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J
Cancer. 2012 Sep 25;107(7):1195–202.
21. Department of Health. The Quality of Life of Cancer Survivors in England [Internet]. 2012. Available from:
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213192/9284-TSO2900701-PROMS.pdf
13
Quality Care Everywhere? Prostate cancer
and variation across the UK
Men diagnosed with prostate cancer should not be disadvantaged just because of where
they live. However there are inconsistencies in the quality of care and support men receive
across the UK.
Using the findings from the 2013 National Cancer Patient Experience Survey (NCPES) in
England (1), the Welsh Cancer Patient Experience Survey (CPES) (2) and a Prostate Cancer
UK commissioned survey of the experiences of men with prostate cancer in Scotland (2013)
(3), we have highlighted examples of variation across the UK. In Northern Ireland a Cancer
Patient Experience Survey is in progress, however at the time of publication of this document
the results were not available. A NCPES for Scotland is urgently needed to drive quality
improvements at a local level and allow for comparisons to help improve sharing of best
practice between health boards.
All men and their families deserve equal access to information on financial matters.
Following a diagnosis of prostate cancer, having access to high quality information and
support can help men and their friends and family manage the disease more effectively. This
includes support and information on finances.
Shockingly, results from the most recent NCPES showed significant variations in the
proportion of prostate cancer patients in England saying they had been given information
about how to get financial help or benefits. Gloucestershire Hospitals NHS Foundation Trust
performed the worst with only 4% of respondents with prostate cancer stating that they
received enough information from hospital staff about financial help or benefits, compared
to 85% at South Tees Hospitals NHS Foundation Trust. Data from Scotland reveals that just
30% of men with prostate cancer reported that hospital staff gave them enough information
on any financial help that may be available (3). A similar result from the 2013 Welsh CPES
highlighted an average of only 32% of men saying they had been given information about
how to get financial help or benefits (2).
All men should have a written care plan
Not all men are being offered a written care plan (see figure opposite). Many men experience
life-changing side effects from prostate cancer treatment and require support from healthcare
professionals for some time after treatment has finished. During treatment, the type of
support required varies and a man may see many different healthcare professionals including
GPs, urologists, oncologists and specialist nurses. It is therefore essential that men are given
a detailed care plan that sets out the follow-up tests and care they should expect to receive
from these healthcare professionals.
Despite this, many men still don’t get a written care plan. Just 7% of men with prostate
cancer treated at University Hospital Southampton NHS Foundation Trust reported that they
were offered one, compared with 38% of men with prostate cancer from the Heart of England
NHS Foundation Trust (1). The results from the devolved nations highlight the variation too
with an average of 8% of men in Scotland reporting that they received a care plan (3) and
19% of men in Wales (2).
14
Variation of Trusts providing men with prostate cancer with a written care plan.
University Hospital Southampton NHS Foundation Trust
Hampshire Hospitals NHS Foundation Trust
University Hospitals Bristol NHS Foundation Trust
The Christie NHS Foundation Trust
Wrightington, Wigan and Leigh NHS Foundation Trust
The Royal Wolverhampton NHS Trust
Western Sussex Hospitals NHS Trust
Gloucestershire Hospitals NHS Foundation Trust
Calderdale and Huddersfield NHS Foundation Trust
Oxford University Hospitals NHS Trust
The Shrewsbury and Telford Hospital NHS Trust
North Bristol NHS Trust
Blackpool Teaching Hospitals NHS Foundation Trust
Nottingham University Hospitals NHS Trust
Norfolk and Norwich University Hospitals NHS Foundation Trust
University Hospitals of Leicester NHS Trust
Warrington and Halton Hospitals NHS Foundation Trust
Cambridge University Hospitals NHS Foundation Trust
Southend University Hospital NHS Foundation Trust
The Pennine Acute Hospitals NHS Trust
Plymouth Hospitals NHS Trust
Barts Health NHS Trust
The Leeds Teaching Hospitals NHS Trust
Royal United Hospital Bath NHS Trust
York Teaching Hospital NHS Foundation Trust
Royal Cornwall Hospitals NHS Trust
Mid Cheshire Hospitals NHS Foundation Trust
United Lincolnshire Hospitals NHS Trust
East Lancashire Hospitals NHS Trust
Countess of Chester Hospital NHS Foundation Trust
Luton and Dunstable Hospital NHS Foundation Trust
Mid Essex Hospital Services NHS Trust
University College London Hospitals NHS Foundation Trust
East Sussex Healthcare NHS Trust
Poole Hospital NHS Foundation Trust
Imperial College Healthcare NHS Trust
Surrey and Sussex Healthcare NHS Trust
Sheffield Teaching Hospitals NHS Foundation Trust
Royal Surrey County Hospital NHS Foundation Trust
Portsmouth Hospitals NHS Trust
The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust
North Middlesex University Hospital NHS Trust
Harrogate and District NHS Foundation Trust
Hull and East Yorkshire Hospitals NHS Trust
University Hospitals Coventry and Warwickshire NHS Trust
South Tees Hospitals NHS Foundation Trust
Royal Berkshire NHS Foundation Trust
Central Manchester University Hospitals NHS Foundation Trust
The Queen Elizabeth Hospital King's Lynn NHS Foundation Trust
Bradford Teaching Hospitals NHS Foundation Trust
Frimley Park Hospital NHS Foundation Trust
University Hospitals Birmingham NHS Foundation Trust
Royal Devon and Exeter NHS Foundation Trust
Peterborough and Stamford Hospitals NHS Foundation Trust
Medway NHS Foundation Trust
Maidstone and Tunbridge Wells NHS Trust
Derby Hospitals NHS Foundation Trust
Lancashire Teaching Hospitals NHS Foundation Trust
Stockport NHS Foundation Trust
Barking, Havering and Redbridge University Hospitals NHS Trust
Northumbria Healthcare NHS Foundation Trust
Sandwell and West Birmingham Hospitals NHS Trust
Worcestershire Acute Hospitals NHS Trust
Taunton and Somerset NHS Foundation Trust
Colchester Hospital University NHS Foundation Trust
Dartford and Gravesham NHS Trust
East and North Hertfordshire NHS Trust
The Royal Liverpool and Broadgreen University Hospitals NHS Trust
Gateshead Health NHS Foundation Trust
The Royal Marsden NHS Foundation Trust
City Hospitals Sunderland NHS Foundation Trust
Guy's and St Thomas' NHS Foundation Trust
Wirral University Teaching Hospital NHS Foundation Trust
George Eliot Hospital NHS Trust
Kettering General Hospital NHS Foundation Trust
Northern Devon Healthcare NHS Trust
The Newcastle upon Tyne Hospitals NHS Foundation Trust
South London Healthcare NHS Trust
The Clatterbridge Cancer Centre NHS Foundation Trust
East Kent Hospitals University NHS Foundation Trust
Northampton General Hospital NHS Trust
University Hospital of North Staffordshire NHS Trust
South Devon Healthcare NHS Foundation Trust
Buckinghamshire Healthcare NHS Trust
University Hospital of South Manchester NHS Foundation Trust
The Ipswich Hospital NHS Trust
Heart of England NHS Foundation Trust
0%
5%
Source: (1)
15
10%
15%
20%
25%
30%
35%
40%
All men should have access to a specialist nurse
Men really value access to a specialist nurse (also referred to as a Clinical Nurse Specialist
(CNS)) who can help to support them and co-ordinate care through their prostate cancer
journey. However, variation exists in men having access to a CNS and being able to contact
them. On average, 88% of men with prostate cancer in England reported that they were
given the name of the CNS in charge of their care, with the poorest scoring Trust being
Calderdale and Huddersfield NHS Foundation Trust, where only 64% of men with prostate
cancer were given the name of their CNS (1). Only in 5 Trusts across England reported were
100% of men with prostate cancer were given the name of a CNS (1).
In 2011, a census of the CNS workforce in England (4) found that there are 357 Urology
(majority of cases will be prostate) CNS Macmillan support posts compared to 554 Breast
CNS Macmillan support posts in cancer practice. Of these, one Working Time Equivalent
(WTE) Urology CNS will have a median of 176 new cases per year, compared to a Breast
CNS WTE median of 79 new cases. This clearly shows the need for more CNS provision. The
next CNS census is currently taking place and will be published later this year.
The Welsh CPES stated that cancer patients, of all tumour groups, who had access to a CNS
were significantly more likely to be positive about their experience than those who did not
have access to a CNS (2).
Being able to contact their CNS is also a key part of the support that men need. Indeed
over three quarters of men in our 2012 ‘Men’s views of Quality Care’ survey stated that
being given the name and contact details of a CNS was very important to them (5). There
is a wide variation in prostate cancer patients’ experience of contacting their CNS across
England. The poorest performing Trust was the Leeds Teaching Hospitals NHS Trust where
only the 47% felt they were able to contact their CNS, whilst the best performing Trust was
Buckinghamshire Healthcare NHS Trust (96%) (1). The average for prostate cancer patients in
England was just under three quarters at 73% (1), compared to 83% in Scotland (3) and just
below 80% for all cancer patients in Wales (2). So although the average figures are seemingly
high, variation is still prevalent and needs to be addressed.
All men should receive seamless integrated care
It is essential to men with prostate cancer that interactions between health and social care
are seamless in order to ensure that they receive the best possible care. However, findings
from the NCPES show that in the Royal Surrey County Hospital NHS Foundation Trust just
30% of men with prostate cancer were definitely given enough care and help from health/
social services, compared to Poole Hospital NHS Foundation Trust where 100% of men
with prostate cancer reported that they were (1). The average for prostate cancer patients in
England was just 57%, and Wales even lower at 42% (2).
16
In summary
Inequality: There are inconsistencies in the quality of care and support that men receive
across the UK.
Our call: NHS England must ensure that measurable aspects of patient experience in low
performing Trusts are brought into line with the best in England – for example, all men should
have a detailed written care plan, an assigned Clinical Nurse Specialist, and the necessary
information and support following a prostate cancer diagnosis. The Scottish Government
must introduce a National Cancer Patient Experience Survey to identify and find solutions
to issues faced by men with prostate and other cancers. In Wales, the Welsh Government
should act on the recent Cancer Patient Experience Survey to address the often poor levels
of support offered to men with prostate cancer. The Department of Health, Social Services
and Public Safety (DHSSPS) in Northern Ireland will also need to listen to its own Cancer
Patient Experience Survey when it is released to ensure that prostate cancer patients’ needs
are addressed.
References
1. Quality Health. Cancer Patient Experience Survey 2012-13 National Report [Internet]. 2013. Available from:
http://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2013-nationalcancer-patient-experience-survey-reports/301-2013-national-cancer-patient-experience-survey-programme-national-report/file
2. Wales Cancer Patient Experience Survey: National Report. Quality Health [Internet]. 2014. Available from:
http://www.quality-health.co.uk/resources/surveys/welsh-cancer-experience-survey/2013-welsh-cancereperience-survey/wales-cancer-patient-experience-reports-english-language-versions/527-wales-cancerpatient-experience-survey-national-report-2013/file
3. Quality Health. Prostate Cancer UK Survey: The Views of Prostate Cancer Patients in Scotland. 2013.
4. Clinical Nurse Specialists in Cancer Care; Provision, Proportion and Performance. A census of the cancer
specialist nurse workforce in England 2011. National Cancer Action Team [Internet]. 2012. Available from:
http://webarchive.nationalarchives.gov.uk/20130513211237/http:/ncat.nhs.uk/sites/default/files/NCAT%20
Census%20of%20the%20Cancer%20Specialist%20Nurse%20Workforce%202011.pdf
5. Prostate Cancer UK. Men’s views on quality care in prostate cancer: What does good quality care mean for
men with prostate cancer? [Internet]. 2012. Available from: http://prostatecanceruk.org/media/1559431/
prostate_cancer_uk_quality_care_survey_report_june_2012.pdf
17
Age
Age is a risk factor for prostate cancer
Prostate cancer incidence is strongly related to age, with 9 out of 10 prostate cancer cases
diagnosed in men aged 60 and over, and incidence rates at their highest for men between
70 and 74 years of age (1). Prostate cancer mortality rates are also higher in older men,
with 73% of prostate cancer deaths in men aged 75 and over (2). In England, 5 year relative
survival rates for prostate cancer ranged from 92% in 60-69 year olds to 60% in 80-99 year
olds. The reason for the higher survival rates for men in their 50s and 60s is likely to be due to
higher rates of PSA testing in this age group (3).
Age is just a number
Although across a population physical fitness may decrease with age, age is far from the
only determinant of health. Men of the same age may have different co-morbidities, have
been exposed to different environmental conditions affecting health, exhibit different levels of
activity and have different lifestyles – all of which will affect their health. That’s why we believe
that at every stage of a man’s prostate cancer journey, his personal circumstances, not just
his age, must be taken into account.
Diagnosis
This is why decisions about whether to undergo PSA testing are framed in terms of life
expectancy rather than age. The information provided to GPs on PSA testing as part of
the Prostate Cancer Risk Management Programme states that, ‘PSA testing is not usually
recommended for asymptomatic men with less than 10 years’ life expectancy’ (4). However, it
is not clear what information GPs may take into account when estimating life expectancy.
We are concerned that average life expectancy might be used in decision making, rather than
making an estimate based on an individual’s circumstances. Furthermore, we advocate for a
system of informed choice where men can make a decision that is right for them, whatever their
age, provided they have an opportunity to discuss the pros and cons of testing with their GP.
Treatment decisions
For all men to be able to make a shared decision, they must have access to the information
they need about their treatment options, and possible side effects. NICE Clinical Guideline 175
Prostate cancer: diagnosis and treatment (5) states that clinicians should:
‘Adequately inform men with prostate cancer and their partners or carers about the effects
of prostate cancer and the treatment options on their sexual function, physical appearance,
continence and other aspects of masculinity. Support men and their partners or carers in
making treatment decisions, taking into account the effects on quality of life as well as survival.’
Despite this, the 2013 NCPES found that the extent to which prostate cancer patients are
told about side effects of treatment varies according to age (6). Only 53% of prostate cancer
patients aged 76 and over were told about side effects that could affect them in the future,
compared with 71% of prostate cancer patients aged 51-65 (see figure opposite).
18
% prostate cancer respondents
Prostate cancer patients told about possible future side effects
100
80
75
71
67
60
Average 64%
53
40
20
0
Source: (6)
36-50
51-65
66-75
76 and
over
Age
Following a diagnosis, it’s essential that treatment options are offered on the basis of
clinical outcomes and men’s preferences given the side effects of different treatments.
However, Macmillan Cancer Support have recently raised concerns that older cancer
patients may not be offered some treatments and that decisions regarding their treatment
lack fairness and transparency (7).
We are concerned that age alone may limit the options for some men, regardless of their
physical fitness. We know that for prostate cancer, age at diagnosis affects the type of treatment
that men are likely to receive (see table on next page) (8). Prostatectomy and brachytherapy are
more common in younger men, while hormone therapy alone is more common in older men.
This may be because a greater proportion of older men present with more advanced cancer, or
because a decision is taken not to pursue more radical treatments for older men with localised
disease. The results of a postal questionnaire provided to 244 British consultants asking them
to respond to a series of clinical characteristics found that urologists were more likely to favour
radical treatments for men under 70 than over 70 with localised prostate cancer (10). However,
according to research by Macmillan Cancer Support and the National Cancer Intelligence
Network (NCIN), there are more than 8,000 people alive today who have survived for at least
10 years after receiving a cancer diagnosis aged 80 or over (9).
In some circumstances, older men and clinicians may make a shared decision not to opt
for radical treatment due to concerns about side effects, or short life expectancy due to
comorbidities. However, we are concerned that age alone may limit the options for some
men regardless of their physical fitness and preferences. We urge NHS England and others to
monitor and investigate the causes of age-related patterns in treatment routes.
These patterns may be due to sound clinical reasons, but could also suggest that treatment
options are limited for older men with no account taken of an individual’s physical fitness or
preferences in the decision making process. To provide a complete picture, data are needed
on treatment routes broken down by age, stage at diagnosis and a measure of physical fitness.
19
Main treatment routes for patients diagnosed with prostate cancer in 2009,
by age at diagnosis:
Age at diagnosis
40-49
50-59
60-69
70-79
80+
No recorded treatment
20%
21%
17%
19%
36%
‘Active monitoring’
11%
13%
15%
16%
12%
Hormones
6%
9%
13%
29%
44%
Hormones + Radiotherapy
9%
12%
18%
19%
4%
Prostatectomy
40%
29%
18%
3%
0%
Prostatectomy + Hormones
1%
0%
1%
0%
0%
Prostatectomy+Radiotherapy
3%
3%
2%
0%
0%
Radiotherapy
5%
8%
11%
11%
3%
Brachytherapy
3%
3%
2%
1%
0%
70-79
80+
Statistical significance compared to England average:
Age at diagnosis
40-49
50-59
60-69
No recorded treatment
Higher
‘Active monitoring’
Lower
Lower
Higher
Higher
Lower
Hormones
Lower
Lower
Lower
Higher
Higher
Hormones + Radiotherapy
Lower
Lower
Higher
Higher
Lower
Prostatectomy
Higher
Higher
Higher
Lower
Lower
Higher
Lower
Lower
Prostatectomy + Hormones
Prostatectomy+Radiotherapy
Higher
Higher
Higher
Lower
Lower
Radiotherapy
Lower
Lower
Higher
Higher
Lower
Brachytherapy
Higher
Higher
Higher
Lower
Lower
Source: (8)
Access to drugs
We also have concerns about access to drugs for older people. The Department of Health
has proposed that ‘wider societal benefit’ should be considered when assessing drugs for
approval. This measure takes into account the return society can make from treating an
individual back to full health, for example, enabling an adult to return to work following illness.
Including return to employment as a societal benefit will effectively discriminate against cancer
drugs, as the majority of people affected by cancer are adults in the later stages of their
working careers and those who have reached retirement age. These concerns are outlined in
our joint report, Value-based pricing: Getting it right for people with cancer (10).
20
Age-appropriate support needs
Prostate Cancer UK recently commissioned research into the differential needs of men with
prostate cancer at different life stages, and this work found that age influences the needs,
priorities and preferences of men with prostate cancer (11).
Younger men were more likely to perceive diagnosis and treatment as having a larger impact
on their lives than older men. In particular, they saw ED, and subsequent effect on sex life,
as having a more significant effect on their lives. Younger men were also more likely to be
concerned about the impact of the condition and its treatment on their careers. They tended to
be less deferential toward doctors, and more likely to go online to research treatment options.
Older men tended to see urinary incontinence as having a more significant impact on their
lives than ED. As they were more often retired, they were less concerned about the effect
of prostate cancer on their careers. Older men tended to be more reluctant to express their
need for support, often only talking about these needs after prompting. Their preference
tended to be to access information through leaflets and books, rather than online.
This shows that although men of all ages should have access to the same standards of
information and care, health professionals and service providers should be mindful of the fact
that men at different stages of their lives may require tailored support.
Older people deserve quality care
The aim of the English national cancer strategy, Improving Outcomes: a strategy for
cancer (12) was to help the NHS deliver cancer services that are amongst the best in the
world. The number of men diagnosed with prostate cancer is predicted to increase by
almost 70% between 2007 and 2030 (13), and many of these will be older men. Therefore,
if the Government’s ambition is to be realised, it is essential that older men with prostate
cancer are given access to high quality treatment and care. This is acknowledged in the
Department of Health report: The impact of patient age on clinical decision making (14),
which states that, ‘If we are to improve cancer outcomes, it is therefore important that we
do all that we can to ensure that older people are able to benefit from the most appropriate
treatment, care and support’.
Men must not be denied quality care on the basis of their age.
In summary
Inequality: Older men diagnosed with prostate cancer are far less likely to be told about side
effects of treatment, and at times have fewer treatment options offered to them, than younger
men. It is not clear that treatment pathways are based on a person’s fitness and preferences
rather than their age alone.
Our call: NHS England, NHS Wales, the Scottish Government and Health and Social Care
(HSC) in Northern Ireland should ensure that older men are not denied treatments on the
basis of their age, and that they are given information about possible treatment side effects.
21
References
1. Cancer Research UK. Prostate cancer incidence statistics: By Age (2009-2011) [Internet]. 2014.
Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/prostate/incidence/#age
2. Cancer Research UK. Prostate cancer mortality statistics: By Age (2009-2011) [Internet]. 2013.
Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/prostate/mortality/#By
3. Cancer Research UK. Prostate cancer survival statistics: By Age (2005-2009) [Internet]. 2012.
Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/prostate/survival/#By
4. Burford D, Kirby M, Austoker J. Advising men about the PSA test for prostate cancer [Internet]. 2009.
Available from: http://www.cancerscreening.nhs.uk/prostate/prostate-summary-sheet.pdf
5. National Institute for Health and Care Excellence. Prostate cancer: Diagnosis and treatment. NICE clinical
guideline 175 [Internet]. 2014 [cited 2013 Apr 25]. Available from: http://www.nice.org.uk/guidance/CG175
6. Quality Health. Cancer Patient Experience Survey 2012-13 National Report [Internet]. 2013. Available from:
http://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2013-nationalcancer-patient-experience-survey-reports/301-2013-national-cancer-patient-experience-survey-programme-national-report/file
7. brap for Macmillan Cancer Support. ‘Walking into the unknown’ - Survivors and carers speak out on
discrimination and inequality in cancer care services [Internet]. 2011. Available from: http://www.macmillan.
org.uk/Documents/AboutUs/Health_professionals/OlderPeoplesProject/Walkingintotheunknown.pdf
8. National Cancer Intelligence Network. Treatment Routes in Prostate Cancer Urological Cancers SSCRG
[Internet]. 2012. Available from: http://www.ncin.org.uk/view?rid=1260
9. Macmillan Cancer Support and the NCIN. 130,000 people diagnosed at 65 or over survive cancer for at
least a decade [Internet]. 2014 [cited 2014 May 13]. Available from: http://www.macmillan.org.uk/Aboutus/
News/Latest_News/130,000peoplediagnosedat65oroversurvivecancerforatleastadecade.aspx#.
10. Prostate Cancer UK. Value-based pricing: Getting it right for people with cancer [Internet]. 2012 [cited 2013
May 10]. Available from: http://prostatecanceruk.org/media/1633387/1513_value-based_pricing_report_
for_print.pdf
11. BritainThinks. Findings from qualitative research carried out by BritainThinks. The total sample size was 53
adults affected by prostate cancer across the UK (including 8 partners of men with prostate cancer). The
fieldwork was undertaken between 5th February and 13th March 2014, comprising telephone interviews,
focus groups and online qualitative research. 2014.
12. Department of Health. Improving Outcomes: A Strategy for Cancer [Internet]. 2011. Available from: https://
www.gov.uk/government/uploads/system/uploads/attachment_data/file/213785/dh_123394.pdf
13. Mistry M, Parkin DM, Ahmad AS, Sasieni P. Cancer incidence in the United Kingdom: projections to the
year 2030. Br J Cancer. 2011 Nov 22;105(11):1795–803.
14. Department of Health. The impact of patient age on clinical decision-making in oncology [Internet]. 2012.
Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215155/
dh_133095.pdf
22
23
Access to treatments
Men with prostate cancer should have access to the best available treatments. The current
system needs to be reformed to ensure they receive this. Treatment options for men with
prostate cancer are limited due to historical underfunding of prostate cancer research
and the time taken for new treatments to be approved. In 2012, abiraterone for use after
chemotherapy was the first drug to have been approved for advanced prostate cancer in 12
years. As health budgets are ever more squeezed across the UK, new treatments for prostate
cancer face added hurdles to being approved. Access to the best treatments ultimately leads
to improvements in overall survival, which is important in helping to realise the Westminster
Government’s ambition to deliver cancer services that are amongst the best in the world.
Since few treatments currently exist for prostate cancer, it is essential that new innovations
are made available to men if they are proven to be effective.
In the UK, the National Institute for Health and Care Excellence (NICE) and the Scottish
Medicines Consortium (SMC) decide whether new treatments for prostate cancer can be
made available to men. In 2012, Prostate Cancer UK led a successful and award-winning
campaign for the use of abiraterone on the NHS – despite its initial rejection. Following this,
new treatments have come forward which could offer more choice and hope – particularly to
those men who are approaching the end of their lives.
It is important that decisions about making treatments available to men who are running
out of options are made in a fair and transparent manner, but we are worried that this is not
happening. For example, the SMC has made decisions on whether to approve or reject
new treatments with limited opportunity for input from patients and patient organisations as
their meetings have been held in private. At the time of writing, several drugs for advanced
prostate cancer, offering men the prospect of precious extra months to spend with loved
ones, had been considered by NICE and the SMC.
In the case of enzalutamide, a hormone therapy treatment, NICE first announced that the
drug should only be made available for those men who had not previously received the drug
abiraterone, before finally deciding that this was outside the scope of the review. The SMC
recommended that the drug was made available in Scotland without restriction. We are
concerned that imposing restrictions based on previous treatments that men have received
sets a dangerous precedent and could deny men approaching the end of their lives another
option when all else has failed.
We have also seen other treatments rejected by NICE, such as cabazitaxel and radium-223,
on the basis of cost and lack of data in comparison with other treatments – this shows that
pharmaceutical companies also have a responsibility to provide the evidence necessary to
NICE in order that they can make a full evidence-based assessment. There must also be
an acceptance that drugs should be reasonably priced in order to stand a better chance of
being approved.
The Cancer Drugs Fund (CDF) in England has been established as an interim solution to the
cost barrier associated with new cancer treatments. While the CDF is in effect, it remains the
only hope for many patients wishing to access innovative drugs that cannot be afforded by
the NHS in England. However, we do not feel that a temporary measure, such as the CDF,
addresses long-term gaps in provision for cancer drugs. Additionally, it is not fair that only men
in England should have access to certain cancer drugs while men in other parts of the UK
24
cannot access them. We want all men with prostate cancer to be able to access the drugs
and treatments that their doctor believes will be beneficial to them, no matter where they live.
Some of the examples above highlight that, despite advances in treatments for prostate
cancer, men are still unable to access all available licensed options. As advances in prostate
cancer treatments steadily increase, it would be a travesty if men in the UK were unable to
access them on the NHS.
A system fit for purpose – taking account of what matters most
to patients
We do not believe the current system for making cancer drugs available on the NHS is fit
for purpose. What is required is a system that takes better account of the current lack of
approved treatments for prostate cancer.
Since the Government first floated the idea of Value Based Pricing (VBP) in 2010, there has
been much debate about the question of value, and little consultation with patients and
patient organisations. In 2012, Prostate Cancer UK led a piece of work looking at VBP and
what people affected by cancer believe value should mean to them. Our report highlights
what people affected by cancer see as their priorities when assessing the value of new drugs
(1). In addition to placing a high value on drugs which offer clear clinical benefits, our research
shows that people value drugs which provide quality of life improvements such as reducing
pain and fatigue. People affected by cancer have also expressed their belief that drugs which
give people nearing the end of their lives precious extra time should be given a high value.
The report also identifies the increasing worry about focusing on the value of the societal
benefits of drugs.
Prostate Cancer UK is concerned that, if implemented, the measures put forward by the
Department of Health in their terms of reference to NICE (2) will mean older people will lose
out due to wider societal benefit favouring those of working age – with no recognition of
the contribution older people have made over their own working lives. The proposals would
disadvantage many people with cancer who may have already retired, are too unwell to ever
re-enter the workforce, or are children or young people still in education or training.
In March 2014 NICE launched a public consultation seeking views on two new areas they
are proposing to add to their technology process guidance – burden of illness (looking at the
loss in quality and length of life) and wider societal impact (looking at the loss of a person’s
capacity to engage in society as a result of living with a disease or condition). NICE has
proposed incorporating end of life criteria within the burden of illness measures. We are
concerned that removal of end of life measures as direct criteria may lead to new prostate
cancer treatments not being approved in the future.
Communication of the Prostate Cancer Risk Management
Programme
As identified earlier, men aged 50 and over have the right to make an informed choice about
whether to have a PSA test under the Prostate Cancer Risk Management Programme
(PCRMP) (3). Currently, this is not effectively communicated and used in primary care so that
men can make this choice and know their risks.
25
Erectile dysfunction guidelines
Again as we highlighted earlier, there are no national guidelines on the management of ED. A
number of guidelines have been produced by professional organisations, including the British
Society for Sexual Medicine (4), but none of these has the same weight and influence as
guidelines produced by NICE or the equivalents in the devolved nations. Therefore, there is an
urgent need for a review and update of the current guidance for ED given that this is a major
side effect following treatment for prostate cancer.
Emerging best practice
It is important that men are able to access the best standards of treatment as soon as there
is good evidence of efficacy. For example, there is an emerging body of evidence about the
diagnostic benefits of using multiparametric MRI (magnetic resonance imaging) for ruling some
men out of needing unnecessary biopsies (5). A clinical trial is underway that will explore this
further (6), but in the meantime there is variation in clinical practice (7). Where robust clinical trial
data is published between reviews of clinical guidance, it is important that the necessary steps
are taken to ensure that men everywhere can benefit. This may require consideration of training,
infrastructure and equipment.
In summary
Inequality: Not all men in the UK have access to the information they need to make an
informed choice about the PSA test, or about the best treatments or aftercare support for
prostate cancer, especially for side effects such as ED.
Our call: Commissioning and regulatory authorities should take urgent steps to ensure that
the best treatments and diagnostics are available across the UK. For example, NICE must
ensure that clear guidance is provided to allow men to access treatments for advanced cancer;
SMC must ensure greater patient participation and transparency in their decision making;
Health Departments in all countries of the UK must urgently review and update the current
prescribing guidance for erectile dysfunction; and the Prostate Cancer Risk Management
Programme should be better communicated and used in primary care across the UK.
References
1. Prostate Cancer UK. Value-based pricing: Getting it right for people with cancer [Internet]. 2012 [cited 2013
May 10]. Available from: http://prostatecanceruk.org/media/1633387/1513_value-based_pricing_report_
for_print.pdf
2. Department of Health. Value-Based Pricing terms of reference [Internet]. 2013. Available from:
http://www.nice.org.uk/proxy/?sourceUrl=http%3A%2F%2Fwww.nice.org.
uk%2Faboutnice%2Fhowwework%2Fdevnicetech%2FDevelopmentWorkForValueBasedPricing.jsp%3Fdo
media%3D1%26mid%3D9A46903F-A8A3-2090-57684CA0D69C6E1D
3. Burford D, Kirby M, Austoker J. Prostate Cancer Risk Management Programme information for primary
care; PSA testing in asymptomatic men. Evidence document. NHS Cancer Screening Programmes
[Internet]. 2010. Available from: http://www.cancerscreening.nhs.uk/prostate/pcrmp-guide-2.html
4. British Society for Sexual Medicine. Guidelines on the management of erectile dysfunction [Internet]. 2013.
Available from: http://www.bssm.org.uk/downloads/BSSM_ED_Management_Guidelines_2013.pdf
5. Moore CM, Robertson NL, Arsanious N, Middleton T, Villers A, Klotz L, et al. Image-guided prostate biopsy
using magnetic resonance imaging-derived targets: a systematic review. Eur Urol. 2013 Jan;63(1):125–40.
6. MRC Clinical Trials Unit. PROMIS - Prostate MRI Imaging Study: Evaluation of Multi-Parametric Magnetic
Imaging in the Diagnosis and Characterisation of Prostate Cancer [Internet]. [cited 2014 May 22]. Available
from: http://icon8trial.org/research_areas/study_details.aspx?s=126
7. National Institute for Health and Care Excellence. Prostate cancer: Diagnosis and treatment. NICE clinical
guideline 175 [Internet]. 2014 [cited 2013 Apr 25]. Available from: http://www.nice.org.uk/guidance/CG175
26
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2640
Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland (SC039332). Registered company 2653887.
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