Florence Nightingale School of Nursing & Midwifery
King’s College London
Evaluation of a Community-based
Prostate Health Clinic in London
September 2012
Prof. Emma Ream
Ms. Jennifer Finnegan-John
Ms. Vibe H. Pedersen
King’s College London
This project was a collaboration between:
Barts Health NHS Trust
NHS Newham
North East London Cancer Network
National Cancer Action Team
Prostate Cancer UK
Cancer Black Care
Department of Health
King's College London
The evaluation was funded by Prostate Cancer UK and the National Cancer Action Team.
Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland
(SC039332). Registered company 2653887.
2
Contents
1. Executive summary
5
2. Background
10
3. Methods
3.1
Aims of the evaluation
3.2
Design of the evaluation
3.3
Sample
3.4
Data Sources
15
15
15
15
4. Findings
4.1 Observation
4.2 Audit of service uptake
4.3 Audit of referrals
4.4 Economic appraisal of the outreach clinic
4.5 Men’s perceptions of the service
4.6 Stakeholder’s perceptions of the service
18
25
36
37
39
48
5. Summary and recommendations
57
References
60
Appendix 1 - Examples of material used to promote clinic
Appendix 2 - Steering group members
Appendix 3 - Tools used in the evaluation
62
67
68
3
Figures, Tables, Plates
Figures
Figure 1: Community-based prostate health clinics
Figure 2: Details of activity used to promote clinic
Figure 3: Resources available to men
Figure 4: Distance between the clinic and men’s homes
Figure 5: Impact of promotion on clinic attendance
Figure 6: Themes discussed in interviews with clinic attendees
Figure 7: Themes discussed during stakeholder interviews
11
13
23
26
28
39
48
Tables
Table 1: Record of observations undertaken
Table 2: Time of day when men attended the clinic
Table 3: Sources of knowledge regarding the clinic
Table 4: Country of birth and ethnicity of men who had a consultation
Table 5: Frequency of deprivation quintiles within sample
Table 6: Frequency of men with family history of prostate
cancer by ethnic group
Table 7: Reasons why symptomatic men did not consult their
GP about their urinary symptoms
Table 8: Experience of being offered a PSA test
Table 9: Knowledge of prostate cancer before attending the clinic (%)
Table 10: Knowledge gains through attending the clinic (%)
Table 11: Satisfaction with service provided by clinic
Table 12: Prostate cancer stage at diagnosis (n=9)
Table 13: Costs associated with the set up and running of the clinic
Table 14: New referrals to urology clinics
Table 15: PSA tests taken in community and processed by
Newham University Hospital Trust
19
25
27
29
29
30
31
32
33
34
35
36
37
38
38
Plates
Plate 1: Scenes around the African Caribbean Community Centre
Plate 2: Photograph of waiting area in the clinic
Plate 3: Photographs of consultation bays
20
21
22
4
1. Executive summary
1.1 Project summary
This evaluation sought to provide a comprehensive understanding of the process and outcomes
of setting up and providing a community-based outreach clinic for prostate cancer in an ethically
and socially diverse London borough.
1.2 Background
Prostate cancer is three times more common in black African and black Caribbean men when
compared to white men. However, previous research into men’s knowledge of prostate cancer
has shown that black men generally know less about the disease than white men. Evidence also
suggests that black African and Caribbean men are less trusting of medical professionals and
more reluctant to seek help when experiencing symptoms associated with prostate cancer.
Research from the US – where most health care providers offer annual PSA testing to their male
patients as part of their health insurance cover - found that interventions to enhance knowledge
about, and uptake of, testing for prostate cancer were most successful when delivered in a
community setting.
However in the UK, unlike the US, healthcare providers do not routinely offer men PSA testing
due to the lack of evidence regarding its benefits. Instead, UK countries have adopted the
Prostate Cancer Risk Management Programme (PCRMP). This was introduced by the
government in 2002 following a review of the evidence.15 This programme asserts that PSA tests
should be available to men over 50 years who request a test after they have been informed about
the benefits and disadvantages of both it and potentially ensuing investigations and treatments.
The aim is to ensure men make an informed choice regarding whether or not to undergo tests
for the disease. This approach requires men to be knowledgeable about prostate cancer and
proactive in seeking a PSA test from their primary care team. However, some men may be
reluctant to seek advice from their GP about issues of prostate health and prostate cancer.
Consequently, the Cancer Reform Strategy pointed to community based prostate clinics as an
alternative model of care to improve support for men in making decisions about investigations
or treatment for prostate cancer and to assist in early presentation with the disease and timely
referral to secondary care. A discrete number of prostate health clinics have been evaluated.
Findings suggest they have some success in timely and appropriate referral of men to secondary
care and in identifying cases of prostate cancer. However, due to the locations of these clinics it
has not been possible to determine their suitability for, and uptake in, socially and ethnically
diverse populations.
Within the UK, the largest proportion of black African and black Caribbean men live in London
and prostate cancer is a health issue with great impact on its communities. In Newham, reported
outcomes from cancer are worse than in other boroughs and especially so for black men. To
address this, an outreach clinic for prostate cancer education and testing was set up at the end of
2010. It was housed in an African and Caribbean Community Centre. The service was designed
to be accessible, adaptable and known to the local community.
5
1.3 Design and methods
This evaluation of the pilot Newham clinic comprised:
1. Observation of the clinic in action through freehand written reports and visual
representations by two researchers. These were analysed thematically.
2. An audit of service uptake. An investigator-designed audit tool was developed to
determine number and characteristics of clinic attendees and distance they travelled to
attend. Data were also attained related to the health professional(s) men were seen by
during their clinic visit and diagnostic tests performed.
3. An audit of referrals made. Data were collected through dialogue with the lead consultant
for the walk-in clinic to determine how many referrals for further investigation were
made and how many of these resulted in diagnoses of prostate cancer.
4. An economic analysis. Data were collected on the costs of setting up and running the
clinic and used to determine the cost per clinic visit and cost per diagnosis of prostate
cancer.
5. A survey of men’s pathways to attending the clinic and their levels of satisfaction. These
data were analysed descriptively.
6. Interviews with a diverse sample of 20 men who had attended the clinic and with 13 key
stakeholders. These were transcribed and analysed using framework analysis.
1.4 Findings
1.4.1 Observational
Observational findings provided the evaluation with a detailed impression of the visual
appearance and day to day running of the clinic. The clinic was set up in a centre usually used for
other community activities. This environment was informal to encourage men to attend but
some issues were observed concerning privacy. Every effort was made to provide a professional
service but there was a sense that the clinic was a ‘pop up facility’.
Furthermore, staffing challenges were observed. Initially the clinic was run by both medical and
nursing staff. However, staffing levels in the clinic declined over time and it became increasingly
a nurse-delivered model of care. While patients appeared satisfied with this, it could be
problematic for the nurses when they had no medical support to deal with complex clinical
situations or were not skilled in necessary procedures, e.g. performing DRE.
1.4.2 Service uptake
The evaluation measured the volume of visits to the clinic to understand how much the service was
used and how it was used. Over a period of 98 days the clinic saw 328 men. About half of them
knew of the clinic through advertising and a quarter of them through word of mouth. Nearly
half of clinic attendees defined themselves as black African or black Caribbean. Seventy percent
of those attending said they had come because of urinary symptoms or for a check up. Of those
with symptoms, 50% had not attended a GP to discuss them. The most frequent reason
provided by these symptomatic men for not consulting their GP was that they did not consider
their symptoms serious enough (40%), or because they were worried (12%) or embarrassed (5%)
by them. Six percent reported that they did not attend their GP as they did not have time, whilst
a further 6% stated they did not attend as they were dissatisfied with their GP. A small
proportion did not think their GP would take their symptoms seriously (2%).
6
1.4.3 Referral and diagnosis
Referral and diagnosis rates from the clinic assessed how the service benefited the health
outcomes of men visiting. Of the 322 men who had a consultation, 59 were referred to
secondary care. From these men, 9 were diagnosed with prostate cancer, and 3 with other
conditions. Of those diagnosed with prostate cancer, most were identified as having local
disease. This is unlike typical patterns of diagnosis where 20-30% of men are diagnosed with
metastatic disease.
1.4.4 Economics
To appraise the clinic from an economic perspective, the cost per patient was compared with
that of a GP consultation. Cost per man attending the clinic was £ 283. If the target of 12 men
had attended each session and a maximum annual attendance of 1,176 men had been reached,
the cost per consultation would have been around £77. This would compare very favourably
with the cost of GP consultation of £36, especially given the clinic’s ability to provide additional
tests not usually available in a GP practice.
1.4.5 Men’s perception of the service
Men felt the clinic was very accessible and praised staff professionalism, competence and
communication. However there were some reservations about the environment – particularly in
relation to privacy.
Men who visited the clinic seemed happy to undergo diagnostic tests. In fact they had come to
the clinic for this specific reason. It was clear they had made the decision to be tested before
attending the clinic. Limited discussion was held with them regarding the pros and cons of PSA
testing.
Some of the men interviewed expressed concern over the lack of clarity in the follow up
procedure to their tests. Further to this, some men struggled with how to understand their
results and how the service interacted with their GP.
1.4.6 Stakeholders perceptions of the clinic
Stakeholders were interviewed about setting up and running a community prostate clinic and
how it impacted on men’s health in the locality. Interviews revealed that stakeholders felt the
specific nature of the clinic targeting men’s health was beneficial especially for those reluctant to
go to their GP. Importantly, the clinic was also felt to have good cross cultural appeal.
Stakeholders further concluded that the clinic had made an improvement in terms of raising
awareness of prostate cancer in the borough and breaking the silence over issues considered
taboo.
The success of the clinic was identified as a collaborative one – with clinicians, academics and
policy-makers working together. However, there were some challenges which meant the set up
took longer than anticipated. Stakeholders found that staffing the clinic was a time consuming
process. Other challenges related to procuring equipment. While important focus was put on the
set up of the clinic, stakeholders felt that its promotion was less well managed. There were also
issues over the management of PSA testing as ‘point of care’ PSA tests, that provide on-the-day
results, could not be used because of their low level of accuracy. The absence of a project
manager throughout the clinic’s duration was felt to be behind some of the above challenges.
7
There were some unforeseen outcomes of the clinic’s presence. Importantly, some other serious
diagnoses were made other than prostate cancer. Further, over time the clinic became largely
used for diagnostic tests rather than acting as an information hub. This was seen by some as a
missed opportunity.
1.5 Conclusions
The collaboration between multiple agencies established an outreach service for prostate health
and prostate cancer which ran for two afternoons/evenings a week for a year. Over 320 men
attended. A lot of good will and cooperation helped the service work, which might not have
been sustainable in the long term.
The clinic was popular in the community and seemed to attract men who may otherwise not
have visited their GP for advice about, and testing for, prostate cancer. Men were predominantly
from the lowest socio economic quintile by postcode showing that diverse populations of men
will avail themselves of these services. The clinic attracted those from within the borough, but
also outside – 22 men lived more than 10km away. This evidence confirms that men will travel
for a service dedicated to prostate cancer. Men in Newham seemed to talk about the clinic – a
quarter found out about the clinic through word of mouth. This raised awareness could have
been built on further.
Nine new diagnoses of prostate cancer were made, and made at an early stage. Arguably early
diagnosis can lead to lives saved. Beyond this, other diagnoses were also made suggesting that
men used the clinic for accessible medical advice. Most men who attended the clinic attended
with the intent of being tested for prostate cancer. They had made the decision to be tested
prior to attending and appeared disinterested in discussions promoting testing choices. This
raises important issues about what informed choice comprises and how best to achieve this in
outreach clinics like the one introduced.
The clinic was valued by those that used it and seen as an effective partnership that reached
those at risk and hard to reach. However other more economically viable approaches might be
more favourable and these should be developed and evaluated in order to make a comparison
with this one.
1.6
Recommendations
1. Further community-based prostate clinics are introduced and evaluated to determine optimal
service models and locations to reach men reluctant to use traditional primary care services
for education about, and testing for, prostate cancer. A model that incorporates an MOT for
men’s health could be an alternative.
2. Ensure complex new service models are sufficiently funded to provide for a project manager.
3. Ensure service models are promoted sufficiently.
4. Advertising and promotional campaigns to emphasise that service is free and avoid messages
suggesting prostate cancer is always symptomatic.
5. Where new models of service are not in a GP surgery, to consider:
5.1. Location.
8
5.2. Hours of service.
5.3. Clarity of interface between the outreach model and GP services
5.4. Possibility for a one-stop clinic: if ‘point of care’ PSA test is sufficiently accurate.
5.5. Actively encourage men to use the clinic as an information hub
6. Capitalise on word of mouth referral.
7. Place greater emphasis on education in addition to providing a clinical service.
8. Future evaluations of service models should incorporate strong economic evaluation.
9
2. Background
The incidence of prostate cancer has increased worldwide1. In 2008, 899,000 new cases of the
disease were diagnosed; the majority were in developed countries. In the UK, age-standardised
incidence rates have trebled from 33 to 98 per 100,000 men over the period from 1975 to 200825
. Currently, over 36,000 cases are diagnosed annually whereas in 1975 there were only around
8,000 cases. This rise is most likely explained by incidental discovery of the disease following
transurethral resection of the prostate undertaken to reduce urinary symptoms associated with
prostate enlargement and, more recently, with increased uptake of PSA testing. Encouragingly,
whilst incidence has been rising this has not been reflected in mortality rates from prostate
cancer these have remained relatively unchanged.
Of late, understanding of prostate cancer incidence has been enhanced through routine
collection of ethnicity data by cancer registries. This has enabled comparison by ethnic group
and determined that the incidence of prostate cancer is not equal across these groups. It is three
times more common in black African and black Caribbean men when compared with white
men6. This inequality is of particular concern within London as the largest proportion of black
African and black Caribbean men living in the UK reside in the capital. Further, comparison of
prostate cancer outcomes across London boroughs reveals further inequality. One borough, the
borough of Newham, has reported poorer cancer outcomes than most other London boroughs
and worsening outcomes for black men. Newham is one of the most diverse boroughs in the
country and the population includes a high proportion of black males. Relatively poorer cancer
outcomes may be accounted for by lower health literacy in the relatively socially deprived
borough of Newham, poorer knowledge of cancer in the ethnically diverse population residing
there, or reluctance to attend GPs for advice regarding prostate health.
Previous research into black men’s perceptions and knowledge of prostate cancer was recently
appraised and synthesised7. This review determined that compared with white men, many black
African and black Caribbean men had poorer knowledge of the disease, believed the disease to
be incurable and held grave concerns over the impact of treatment on issues related to sexuality.
Further, there was some evidence to suggest that black men were less trusting of medical
professionals and more reluctant to seek help when symptoms of prostate cancer arose than
their white counterparts. However, the majority of the research reviewed was from the US and
conducted with relatively affluent groups of black and white men (most had medical insurance).
One of the two UK studies incorporated into the review8 reported that both black and white
men had relatively high knowledge about the main risks for prostate cancer. However, the
researchers determined that whilst 20% of the white men surveyed had been tested for the
disease only 5% of the black men had been8. This relative reluctance of black men to be tested
for prostate cancer may be explained in part by findings from the other UK study in the review
undertaken by Metcalfe et al9. They found that black men were more embarrassed by urinary
symptoms than white men, and less comfortable consulting their GP about them.
Interventions to enhance knowledge of prostate cancer and uptake of diagnostic testing have
been developed and tested within the US where most health care providers offer annual PSA
testing to their male patients as part of their health insurance cover. These have largely been
either delivered within religious institutions10-12or community halls13-14and collectively suggest that
interventions to enhance understanding of the disease and uptake of diagnostic tests are most
successful when delivered in a community setting within easy access of the target population thereby reducing barriers to access.
10
However healthcare professionals in the UK, unlike their counterparts in the US, do not routinely
offer PSA testing for prostate cancer due to lack of evidence regarding its benefits .15 Challenges
currently faced by national screening programmes for the disease include lack of accuracy
associated with the PSA test (method currently used to detect curable localised prostate cancer)16,
difficulty determining indolent from aggressive prostate cancers, and significant morbidity
associated with treatments for localised disease17. Inevitably, introduction of screening for
prostate cancer would increase diagnosis of both cancers that would not impact men in their
lifetime (indolent cancers) as well as those with potential to result in death (aggressive cancers).
As it is currently difficult to differentiate one from another, many men would face unnecessary
treatment as a consequence of screening, with potential implications for quality of life.
In England, following a review of the evidence, the Prostate Cancer Risk Management
Programme (PCRMP) was introduced by the government in 2002 as part of the NHS Prostate
Cancer Programme. The approach of the PCRMP was subsequently endorsed by the UK
National Screening Committee in 2010, and has been adopted by the other UK countries. This
advocates that primary care teams perform PSA tests on men over 50 years who request one but
only after providing them with clear and balanced information about the benefits and
disadvantages of the test and investigations or treatments that could follow. The aim is for men
to make an informed choice regarding testing for the disease. This approach requires men to be
knowledgeable about prostate cancer and proactive in seeking a test from their primary care
team.
However, some men may be reluctant to seek advice from their GP about issues
regarding prostate health and prostate cancer. Consequently alternative service models are
needed to enhance men’s uptake of services for prostate health. The Cancer Reform Strategy
referred to community-based prostate health clinics as an alternative to traditional GP services in
a chapter on delivering care in the most appropriate setting (Figure 1). The idea of a community
health clinic as a model for improving access, strengthening advice and support, and helping
facilitate better decision making for men around their health was developed and shaped by a
national group Prostate Cancer Advisory Group (PCAG). A small working group further refined
the concept, reflected on operational practicalities, and mapped suitable locations for a pilot site.
Following a series of meetings with local stakeholders Newham in North East London was
chosen as the pilot site.
Figure 1: Community-based prostate health clinics
Due to the complexities involved in diagnosing significant prostate cancers, one suggested model
is that men should receive advice and support on prostate health issues at dedicated communitybased prostate health clinics. Decision advisers would help men at the following points in the
pathway:
● Men without symptoms considering having a PSA test or equivalent;
● Men with urinary or other potential symptoms of prostate cancer;
● Men considering having a biopsy for prostate cancer following a PSA test; and
● Men diagnosed with benign prostate disease.
Decision advisers could be clinical nurse specialists (CNSs) on a dedicated or outreach basis,
GPs with a special interest in prostate cancer, community based specialist urologists or other
appropriately trained practitioners. Access to prostate health clinics would be via GP referral or
direct access for men concerned about their prostate health.
Taken from The Cancer Reform Strategy19 (p. 95)
11
The outreach clinic opened at the end of 2010 in an African and Caribbean Community Centre
in the heart of Newham. The clinic aimed to promote prostate health and awareness of prostate
cancer in men within the locality and in particular (but not exclusively) black African and black
Caribbean men. It aimed to attract men often depicted as ‘hard to reach’ in particular those from
ethnic or socially deprived backgrounds. In line with the proposal in the Cancer Reform
Strategy19 and Prostate UK’s Testing Choices campaign20, the purpose of the clinic was to
facilitate men’s access to timely advice and support regarding prostate health and prostate cancer,
facilitate their making an informed decision regarding undergoing testing for the disease, provide
diagnostic tests for prostate cancer, communicate test results to men and their GPs regarding
outcomes (where men had a GP), and organise rapid referral for further diagnostic tests where
indicated. It sought to actively promote testing for prostate cancer in men at risk of the disease notably black African and black Caribbean men and men with a family history of prostate cancer
in men under 60 years of age.
As men can be reluctant to seek advice and testing for prostate cancer given the taboo and fears
regarding the disease and its treatment7, the intent was to create a service that was both easily
accessible and acceptable. Men could self-refer without having to go to their GP and the clinic
was established in an African and Caribbean Community Centre familiar to the local community.
There was no requirement to pre-book and the clinic ran on Mondays and Tuesdays from 14001900. By running after work hours it was anticipated that men at work would be able to attend
with minimal disruption to their working lives.
The clinic was a timely response to the National Awareness and Early Diagnosis Initiative
(NAEDI); a public sector/third sector partnership between the Department of Health, National
Cancer Action Team, and Cancer Research UK. NAEDI’s goals are to improve public awareness
of the signs and symptoms of cancer and encourage people with cancer symptoms to seek help
for them early.
A relatively comprehensive communications strategy was adopted once the clinic had opened to
inform men in the locality about it. The clinic was promoted via various means primarily
between January–April 2011 (Figure 2). Thereafter, the level of advertising and promotion fell
away although a final promotional push was employed in the 2 weeks before the clinic closed in
December 2011. A selection of materials used to promote the clinic is provided in Appendix 1.
We aimed to evaluate the clinic through a mixed method approach incorporating data from
multiple sources to enable the clinic’s feasibility, acceptability, impact and cost effectiveness to be
determined. The evaluation was overseen by a steering group; members had various roles
(Appendix 2).
Research governance of the evaluation was assured by gaining service evaluation approval from
Newham University Hospitals NHS Trust.
12
Figure 2: Details of activity used to promote clinic
Source
Start
End
Details
1. Photo of older black man.
Caption: ‘Welcome. Your Newham
prostate health drop-in clinic is now
open’
2. Photo of tap. Caption:
‘Waterworks trouble?’
[as above]
Interview with urological consultant,
local GP & man from Association for
Prostate Awareness
Excerpts from radio interview
Posters/flyers, 1st batch
Targeted mail-out
13/12/10
-
Posters/flyers, 2nd batch
Radio interview on Voice of
Africa Radio
18/01/11
02/02/11
-
Radio adverts on Voice of
Africa Radio
Media Release
07/02/11
07/04/11
04/02/11
-
Photo call
Yellow Advertiser feature
08/02/11
10/02/11
-
Launch Event
Media Release – launch invite
07/03/11
09/03/11
-
BBC Radio Interview
13/03/11
-
Newham Recorder
Newham Recorder
16/03/11
16/03/11
-
First local media introduction to the
clinic.
Local paper sent photographer.
Caption: ‘Walk-in clinic opens for
prostate sufferers’
Local Counsellor present
Highlighted prostate cancer
awareness month
Interview with urological consultant
& retired black policeman (PC
advocate)
‘Prostate clinic opens for men’
‘Don’t die of embarrassment – get
yourselves checked out’.
Feature on local counsellor’s visit to
Mentions
symptoms
Content
Get more
info
Get
checked/
tested
Yes
Yes
No
Yes
-
Yes
-
No
-
-
-
-
N/A
N/A
N/A
N/A
Yes
N/A
No
N/A
Yes
N/A
N/A
N/A
N/A
N/A
N/A
-
-
-
Yes
Yes
+ stated
asymptomatic
No
No
Yes
Yes
13
Newham Magazine
18/03/11
-
Posters/Business Cards
04/04/11
-
A5 flyers
04/04/11
-
Bus Campaign
04/04/11
04/05/11
Newham Hospital newsletter
‘Link Up’
Quarterly publication for staff
and visitors.
News release
30/05/11
-
10/09/11
-
Newham Recorder
23/11/11
-
Newham Recorder (letters
section)
14/12/11
-
the centre
Patient case study
‘Be pro-active with your prostate’
(issue 216, p27).
Targeted mail-out to all religious
establishments
Targeted mail-out to pubs,
restaurants & community centres
Content as posters/ leaflets
100xbus panels/ 10xbus rears
Content as posters/ leaflets
‘Trust opens community prostate
clinic’
‘Call for Newham men to check their
prostate health at walk-in clinic’
Local newspaper feature. ‘Men are
told to have checks on prostate
health at clinic’.
Letter from councillor
Yes
No
Yes
N/A
N/A
N/A
Yes
Yes
No
Yes
Yes
No
Yes
No
Yes
Yes
Yes
Yes
Yes
+ stated
asymptomatic
No
Yes
Yes
Yes
Yes
14
3. Methods
3.1 Aims of the evaluation
The evaluation sought to provide a comprehensive understanding of the process and
outcomes of setting up and providing a community-based outreach clinic for prostate
health in an ethnically and socially diverse London borough.
3.2 Design of the evaluation
The evaluation comprised:
Observation of the clinic in action
Audit of the uptake of, and service provided by, the clinic
Audit of referrals
Satisfaction survey of men attending the clinic
In depth interviews to explore perceptions of the clinic (both clients and
stakeholders)
Economic analysis
3.3 Sample
The evaluation sought to include all men who had an appointment with one of the
clinical team to discuss prostate health and undergo diagnostic tests as appropriate. They
participated through completion of a survey questionnaire. A subsample was invited to
interview (n=20) to explore further their reasons for attending and views on the service
received.
Further the evaluation sought to include all people attending the clinic in search of
advice, for themselves or others. These individuals were also invited to complete a
shortened survey questionnaire.
Stakeholders (n=13) were additionally invited to take part in an interview to provide their
perspectives on the set up, running, sustainability and impact of the clinic.
3.4 Data Sources
Data were collected using various methods to provide detailed insight into the running of
the clinic and its utility and acceptability.
3.4.1 Observation
Observation provides an understanding of how a service, like the one evaluated, is
delivered in practice. It can provide opportunity, as in this case, to observe and record
what happens to a patient as they pass through and experience a service 21. The
observation provided insight into the routine running of the clinic which generated
valuable understanding for the context of the evaluation. The clinic was observed on six
occasions – twice at the beginning, twice at the middle and twice at the end of the year
over which the clinic ran. It was anticipated that the running of the clinic could alter over
time and the observation was scheduled to reflect this. On each occasion the clinic was
15
observed for between 2 and 3.5 hours. The clinic was observed at differing times of the
afternoon/evening.
What was observed was recorded freehand. Specifically notes were made regarding the
ambience of the clinic, and interactions between staff and clinic attendees. Further the
written account was augmented by sketches drawn to depict the physical layout of the
clinic, and photographs taken to illustrate this.
Initially, two researchers undertook the observation and comparisons made of the notes
taken to determine the consistency of what was recorded. Written accounts from the
observations were analysed thematically.
3.4.2 Audit of service uptake
An investigator-designed tool was developed to determine characteristics of the clinic
attendees and the distance they travelled to attend (Appendix 3).
Data were also attained related to the health professional(s) men were seen by during
their clinic visit and diagnostic tests performed.
Data were entered into SPSS version 15.0 and analysed descriptively.
3.4.3 Audit of referrals
Data were collected through dialogue with the lead consultant for the walk-in clinic to
determine how referrals were made to urology or other services within local acute Trusts
(Newham University Hospital NHS Trust and Barts and the London NHS Trust) when
abnormalities were identified during consultations at the clinic, as well as the number of
diagnoses of prostate cancer made as a consequence.
3.4.4 Satisfaction survey
An investigator-designed satisfaction survey was developed (Appendix 3) to explore how
men had heard of the clinic, men’s reasons for attending, and their knowledge prior to
and on leaving the clinic related to: prostate cancer symptoms; risks of developing the
disease; and diagnostic tests for it (PSA and DRE). Further, data were collected on their
overall satisfaction with regards to the clinic and how likely they would be to recommend
it to other men.
Data were entered into SPSS version 15.0 and analysed descriptively.
3.4.5 Interviews
Interviews were undertaken with 20 men purposively sampled from those that expressed
willingness to be interviewed. Men were invited to be interviewed by mailed letters
posted out in several batches. The intent was to achieve an ethnically diverse sample of
men including black African and black Caribbean men, with and without a family history
of prostate cancer and both with and without urinary symptoms. By so doing, it was
anticipated that the differing drivers and barriers to attending the clinic could be
explored.
16
Interviews were additionally conducted with a sample of 13 stakeholders to determine
their views on the practicalities of setting up and running a clinic in the community, and
the contribution it made to men’s health in Newham. Schedules were used to guide
interviews with clinic attendees and stakeholders (Appendix 3).
All interviews were transcribed verbatim and analysed using a Framework Analysis
approach22.
3.4.6 Economic analysis
Data were collected on the costs of running the clinic and used to determine the cost per
clinic visit and diagnosis of prostate cancer or other serious condition made.
17
4. Findings
4.1 Observation
Observation provided opportunity to gain a detailed impression of the visual appearance
of, and the service provided by, the clinic. Over 16 hours (16 hours 20 minutes) of the
clinic’s operation were observed over 6 days. Forty three men attended on the days
observation was undertaken, 31 of whom were within the clinic during the periods
observed (Table 1).
4.1.1 Clinic location
The clinic was located in a community hall housed within the African and Caribbean
Community Centre on Barking Road in Newham. In addition to the hall (available for
hire), the African and Caribbean Community Centre has offices, a crèche, and both
meeting and activity rooms. The hall is used regularly by local groups for community
activities including drama and music. Additionally it can be hired for private social
events. It was evident on travelling to the clinic that the street is busy, it has a number of
shops and market type stalls nearby and an apparently high footfall (see Plate 1). The
clinic intended to provide an informal environment that was different from a hospital
setting to encourage men’s attendance.
The hall is large with high ceilings and little soft furnishing. It was clearly well used and in
need of some redecoration; paint on the walls was worn as was the flooring and window
blinds were broken. The room felt cool in the summer months and cold during the
winter. As the hall was large, the room did not appear particularly welcoming or
comfortable. However, when the clinic was set up it appeared functional and had distinct
areas related to the clinic’s activities. Despite this, the hall did not feel ‘clinical’ as it
would have done within a usual healthcare setting. In fact the clinic’s equipment looked a
little incongruous within the hall. It was clear that efforts were made to ensure the clinic
looked professional, all equipment was new, yet it maintained the look of a ‘pop-up’
facility.
18
Table 1: Record of observations undertaken
Date
15 Feb 2011
22 March 2011
20 June 2011
4th July 2011
29th Nov 2011
6th Dec 2011
Time of
observation
1.45pm- 5.15pm
2.30pm-5.00pm
2.00pm- 5.15pm
2.50pm-5.00pm
2.15pm-4.30pm
1.50pm-4.30pm
Duration of
observation
3 hrs 30 mins
2 hours 30 mins
3 hours 15 mins
2 hours 10 mins
2 hours 15 mins
2 hours 40 mins
No. of men
observed
5
12
4
1
9
0
No. of men
attended
clinic on date
7
15
5
2
14
0
3
Receptionist
Prostate CNS
Reception cover
3
Receptionist
Prostate CNS
Reception cover
No. of
personnel
observed
6
6
4
3
Project manager Project manager Receptionist
Receptionist
Receptionist
Receptionist
2x Prostate
Prostate CNS
2x SPRs
2x SPRs
CNSs
Reception cover
HCA
Prostate CNS
Reception cover*
Operations
HCA
Manager
*Providing reception cover from 5pm until clinic closed at approximately 8pm.
19
Plate 1: Scenes around the African Caribbean Community Centre
While the clinic was not within an NHS facility, it was operated and supported by NHS
staff and linked in with both primary and secondary care. Prior to the clinic opening,
questions were raised by members of the project team and Newham University Hospital
NHS Trust regarding the centre’s suitability for operating a healthcare service for
members of the public. Communications took places with the health and safety team at
Newham Hospital as well as with the local fire safety officer in East Ham. It became
apparent that healthcare professionals were viewing the clinic as an extension of the
hospital or GP surgery rather as a community pilot specifically located to increase access
among a particular group of men. A number of local changes were made that appeared to
resolve issues that were raised.
4.1.2 Signage for the clinic
There were no signs on the outside of the centre advertising the clinic. Once inside the
centre, there were flyers for the clinic on the walls of the corridor leading to the hall.
Initially, there were no signs on the hall doors confirming the clinic’s location. However,
once the clinic was established a laminated sign was appended during clinic hours.
4.1.3 Setting up the clinic
Periods of observation incorporated the interval prior to the clinic starting to provide
understanding of what setting up the clinic entailed. For the first three months
(December 2010-March 2011) a project manager undertook this task and additionally
supported the running of the clinic. This appeared important for setting systems in place
prior to their leaving. Additionally, they provided a point of contact if needed for
troubleshooting. After the project manager left, clinic set-up became the responsibility of
clinical, usually nursing, staff. Setting up the clinic generally took 20-30 minutes.
Occasionally, help in setting up was offered by the caretaker of the African and
20
Caribbean Community Centre. On occasions, the nursing staff were late arriving from
previous clinics and men had to wait whilst the clinic was set up.
Set up entailed fashioning a waiting area (Plate 2), two consultation bays divided by
portable screens (Plate 3), an area for assessing urine flow rate, a reception area, a display
of information on men’s health and prostate cancer – a range of patient literature and
resources provided by The Prostate Cancer Charity were available (Figure 3) - and an
area housing clinical equipment.
Plate 2: Photograph of waiting area in the clinic
21
Plate 3: Photographs of consultation bays
22
Figure 3: Resources available to men
The Prostate Cancer Charity contact cards
The Prostate Cancer Charity leaflets including:
● Understanding PSA tests
● Prostate Cancer
● Prostatitis
● Recurrent Prostate Cancer
● Detecting Prostate Cancer
● Know your Prostate
● Diet, exercise and Prostate Cancer
● What do you know about Prostate Cancer? Information for African and Caribbean Men.
4.1.4 Noise levels in the clinic
The African and Caribbean Community Centre is located on a busy road. Consequently,
sirens and general street sounds were audible within the hall. However, this was not
sufficient to dampen conversations within. The hall was large and slightly cavernous
rendering interactions between healthcare staff and men during consultations easily
audible. This was particularly the case when the clinic was not busy.
4.1.5 Privacy within the clinic
Effort was made to ensure consultation areas were as private as possible. Treatment bays
were situated at the back of the hall. However, although portable screens were used these
were not substantial. Further, privacy was impacted by the audibility of conversations.
4.1.6 Typical progress of men through clinic
On entering the hall, men typically approached the receptionist who explained the clinic’s
purpose. The receptionist provided men with a clipboard and a clinical assessment form
to complete (Appendix 3). Men sat in the waiting area to fill it in. Waiting times when the
clinic was not busy were typically less than 30 minutes; when busy men could wait over
an hour to be seen. The receptionist usually notified men of the approximate waiting
time when the clinic was busy. When busy, men were given the choice of waiting or
returning to the clinic after the rush had subsided.
Whilst waiting, as well as completing the clinical assessment form, men were able to
browse or read available leaflets (Figure 3). However, observations revealed men
appeared to refer little to the leaflets and were not proactive in picking them up. Usually
there was little conversation between men whilst waiting although this varied according
to the dynamic in the group waiting.
The time taken for the consultation with either a nurse or doctor varied during the
period observed between 10 and 30 minutes. Men who were symptomatic and were
23
required to have urine flow rate investigations usually waited for around an hour as they
had to drink a quantity of fluid prior to it.
On completion of investigations, men were provided a summary of investigations
performed and preliminary findings. These were written on the clinical assessment form.
A copy was also provided to men to pass on to their GPs. The follow up procedure was
explained verbally to men before they left the clinic. The process was that men would be
contacted if their PSA was raised and required further investigation. They completed the
satisfaction questionnaire before leaving and were provided some business cards
advertising the clinic to pass on to friends and acquaintances. These outlined the clinic’s
purpose, location and opening times.
4.1.7 Clinic personnel
There were challenges involved with staffing the clinics. Nurses were recruited from
across North East London Cancer Network but the process was slow and challenging.
Identification of the nurses came from the lead clinician who approached colleagues
informally. A number of Trusts were reluctant to release staff as they did not have the
capacity to do so. In the end, some of the nurse specialists joined the Agency bank at
Newham Hospital and supported the clinic independently.
Initially the clinic was run by both medical and nursing staff. However, staffing levels in
the clinic declined over time and it became increasingly a nurse-delivered model of care.
By the end, it was routinely staffed on a Monday by two prostate clinical nurse specialists
(one male and one female) and on a Tuesday by a female prostate cancer nurse. The
intent was to have two nurses running each clinic however extended sick leave prevented
this. Indeed, the limited nursing resource available to the clinic made provision of
sickness and annual leave cover difficult.
The change to a nurse-led model of care did not appear from observations to impact
men; men appeared equally satisfied by the service provided. However, it could be
problematic for the nurses when they had no medical support to deal with complex
clinical situations or were not skilled in necessary procedures, e.g. performing DRE.
The clinic also had the services of a healthcare assistant who helped with a range of tasks
including administration (such as entering data onto the laptop), supporting men with
completion of clinical assessment forms, completing PSA blood forms, taking blood
samples to the hospital after clinic sessions, and conducting urinalysis and bladder
ultrasound. A receptionist was also allocated to work at the clinic to support its smooth
running, although towards the end of the pilot this was only available on a Tuesday.
24
4.2 Audit of service uptake
The clinic ran for 98 days - on 3 days it did not run as planned. On two occasions this
was due to lack of staffing (it was cancelled once and closed early on the second
occasion). On the third occasion the clinic closed early on advice of the local authority
due to the London riots.
4.2.1 Clinic attendance
Over 98 clinic days, 328 men attended. The number of clinic attendees on any one day
ranged between 0 and 15, the median number was 3; neither Monday nor Tuesday
appeared more popular than the other. Roughly equal numbers of men attended on
Mondays (n=174, 54%) and Tuesdays (n=146, 46%).
However, the afternoon appeared a more popular time to attend the clinic than the
evening, although a significant proportion of men of working age did opt to attend the
clinic after 5pm (Table 2).
Table 2: Time of day when men attended the clinic
Time seen
Age
at clinic
<65 years
(%)
104
2-5pm
n
60
5-7pm
% within Age group
n
(%)
% within Age group
41
Total
175
71
Total
≥65 years
(56)
81
(44)
87
(86)
12
93
(100)
69
(15)
13
(65)
185
83
(100)
31
(35)
268
(100)
The majority of clinic attendees lived within 1 km of the clinic. However, there was
considerable variation (Figure 4). One man (not included in Figure 4) had travelled from
Luton to attend the clinic. This man was contacted to gain better understanding of his
motivations for travelling this distance to attend. He explained that he knew of the clinic
from a friend who worked at Newham University Hospital Trust. He stated that he
'wouldn’t know where else to go to get tested'. He worked in London and so drove to
the city frequently. However, he attended on a day when he was not working.
25
Figure 4: Distance between the clinic and men’s homes
26
4.2.2 Uptake of clinic services
Most clinic attendees (n=322) had a consultation about prostate cancer and underwent
diagnostic tests; the other six wished only to have information about the disease. Further,
the six men visiting the clinic to obtain information were seeking information for
themselves.
Of the 322 men who had an appointment with a health professional to discuss prostate
symptoms and prostate health 271 (84%) opted to have a PSA test, 237 (74%) had a
DRE, 181 (56%) had their flow rate examined and 169 (52%) had a bladder ultrasound
for residual volume.
4.2.3 Knowledge of the clinic
Men knew of the clinic in the main through advertising (n=142, 47%) although a sizeable
proportion had found out about it through word of mouth (n=74, 24%) (Table 3).
Table 3: Sources of knowledge regarding the clinic
n
%
Advertising
142
47
Word of mouth
74
24
Visiting the African and Caribbean clinic
33
11
Other
55
18
Total
304
100
The impact of the various forms of promotion is evident in Figure 5. Clinic attendance
varied over the year but there were clear peaks in attendance in the 2 weeks following
promotion of the clinic in local newspapers, notably the Newham Recorder. This had no
associated cost yet compared favourably with the relatively expensive advertising
campaign that ran on the side and interior of buses during April 2011. The bus campaign
appeared to generate little response. Unfortunately, the impact of local press coverage
appeared short lived.
27
Figure 5: Impact of promotion on clinic attendance
28
4.2.4 Demography of men who had a consultation/were screened for the disease
The men (n=322) who were screened for prostate cancer ranged in age between 26 and
88 years (mean 58.8 years, SD 11.32). They varied widely with regards to their country of
birth. Although the largest proportion (35%) was born in the UK, around half were born
in either African (27%) or Caribbean (23%) countries. Forty six percent of men defined
themselves as either black African or black Caribbean, and 28% as white (Table 4).
Table 4: Country of birth and ethnicity of men who had a consultation
Country of birth
n
%
UK
112
35
Africa
87
27
Caribbean
72
23
Asia
30
9
Europe other
16
5
South America
1
<1
Missing
4
Ethnicity
White
89
28
Black Caribbean
75
23
Black African
74
23
Other
45
14
Asian
37
12
Missing
2
Postcode data (using total deprivation scores) revealed that men who had a consultation
with clinic staff were typically living in highly deprived localities. Analysis of deprivation
quintiles revealed that seventy five percent were living in areas classified within the 5th
(most deprived) quintile (Table 5).
Table 5: Frequency of deprivation quintiles within sample
n
%
1 Least deprived
2
<1
2
7
2
3
9
3
4
63
20
5 Most deprived
241
75
Total
322
100
The majority of men who had a consultation with clinical staff did not have a family
history of prostate cancer (82%). However, a larger proportion of men in the black
Caribbean (26%) and black African (23%) groups had a history of prostate cancer in their
29
family when compared with white men attending the clinic (7%) (Table 6). Of those that
had a family history of the disease (n=51), most had a father (n=18, 35%) or an uncle
(n=17, 33%) with prostate cancer. A smaller number (n=11, 22%) had a brother who
had been diagnosed with the disease.
Table 6: Frequency of men with family history of prostate cancer by ethnic group
Ethnic group
Family
All
White
Other
Asian
Black
Black
Caribbean
African
(15)
19 (26)
16 (23)
history
Yes
n(%)
55 (18)
6
(7)
9
(21)
5
No
n(%)
246 (82)
78 (93)
33 (79)
28 (85)
54 (74)
53 (77)
Total
n(%)
301 (100)
84 (100)
42 (100)
33 (100)
73 (100)
69 (100)
4.2.5 Reasons for attending the clinic
Men who attended the clinic and had a consultation with clinical staff reported that they
had attended the clinic for many reasons. Seventy percent were attending due either to
urinary symptoms or because they wished to have a ‘check up’. A small number (3%)
reported that their GP had referred them to the clinic.
Fifty five percent of the sample (n=179) reported that they had been experiencing
urinary symptoms. Despite being symptomatic, 90 had not attended a GP to discuss their
symptoms. The most frequent reason provided by these symptomatic men for not
consulting their GP was that they did not consider their symptoms serious enough (Table
7).
30
Table 7: Reasons why symptomatic men did not consult their GP about their urinary symptoms
Reason
n
%
Didn’t think symptoms serious enough
36
40
Worried about symptoms
11
12
No time to visit GP
5
6
Not satisfied with GP service
5
6
Embarrassed by symptoms
4
5
Didn’t think GP would take symptoms seriously
2
2
Other
26
29
Total
89*
100
*1 man did not provide a reason why he did not consult his GP with urinary symptoms
Of the 89 men that had previously attended their GP for urinary symptoms it appeared
most consulted with their GP only once and their consultations had primarily been in the
previous 6 months. (However, questions relating to number and timing of previous GP
visits were poorly completed by men and there were considerable missing data relating to
these questions.)
One question asked whether men had previously requested a PSA test. This question was
only answered by 119 men. Of these, a very small number (n=5, 4.2%) had previously
requested a PSA test from their GP but this had been refused. Three of these men had
had their requests for PSA refused on several occasions.
4.2.6 Experience of the clinic
Men who had a consultation with clinical staff were asked which health professional(s)
they had been seen by and how long they had waited to see them. The majority reported
that they had been seen solely by a nurse (n=159, 56%), whilst just over a third were seen
by both a nurse and doctor (n=102, 36%) and a small minority by a doctor only (n=23,
8%).
Typically men waited less than 10 minutes to be seen (n=209, 71%) and the majority
(n=149, 51%) were seen in less than 5 minutes. Conversely, a small minority reported
that they had waited over 30 minutes to be seen (n=15, 5%).
The majority of men (n=271, 84%) had a PSA test as part of the diagnostic process.
However, all men that had a consultation at the clinic were invited to report on their
perceptions of the information they had received about it, the opportunity they were
provided to ask questions about it, their degree of satisfaction with the advice provided
and the extent to which they were happy with their decision to have/not have the test.
These data confirmed that men were highly satisfied with the process of being informed
about the test and their decision to have/not have the test (Table 8).
31
Table 8: Experience of being offered a PSA test
n
%
265
94
261
96
281
98
Happy/very happy with decision
266
94
Not made decision yet
16
6
Amount of information provided about PSA test (n=283)
Right amount of information provided
Opportunity to ask questions about PSA test (n=273)
Enough opportunity to ask questions
Satisfaction with advice provided about PSA test (n=287)
Satisfied/very satisfied with advice
Degree of happiness with decision to have/not have PSA test (n=284)
4.2.7 Knowledge about prostate cancer
Men who had a consultation were asked to report on their perceived knowledge before
attending the clinic of risk factors for prostate cancer, symptoms of prostate cancer and
the PSA and DRE tests used to test for the disease. These data were analysed to describe
prior knowledge within the sample as a whole, and allow comparison between ethnic
groups (Table 9). Table 9 provides the percentage of men within the different groups
with varying levels of knowledge about prostate cancer and associated symptoms and
tests. Categories for none and little knowledge are combined. Whilst there appear no
consistent patterns in the data with regards to prior knowledge it is evident that across all
groups knowledge of prostate cancer was poor and knowledge of the PSA test was
particularly poor.
32
Table 9: Knowledge of prostate cancer before attending the clinic (%)
All
Informed
Reasonable
None/little
11
30
60
Informed
Reasonable
None/little
10
21
68
Informed
Reasonable
None/little
14
13
74
Informed
Reasonable
None/little
16
17
65
White
Black
Black
Asian
African
Caribbean
Knowledge of risk factors (n=296)
15
10
25
13
26
40
27
34
60
49
63
54
Knowledge of prostate cancer symptoms (n=297)
12
10
11
9
21
27
18
25
67
64
70
66
Knowledge of PSA test (n=294)
17
15
13
13
13
12
13
16
70
73
74
72
Knowledge of DRE (n=293)
16
19
16
19
16
19
17
13
68
61
67
69
Other
3
10
78
7
14
79
9
9
81
7
19
75
Men were additionally asked to report on their level of knowledge regarding the same
issues relating to prostate cancer after their consultation with one of the clinical staff (and
in most cases having undergone some elements of testing for the disease). Data
comparing levels of knowledge prior to and following men’s consultation are provided
(Table 10).
33
Table 10: Knowledge gains through attending the clinic (%)
Before attending
After attending
Knowledge of risk factors
Informed
Reasonable
None/little
11
29
60
39
45
16
Knowledge of prostate cancer symptoms
Informed
Reasonable
None/little
10
21
69
33
43
24
Knowledge of PSA test
Informed
Reasonable
None/little
14
13
74
29
36
36
Knowledge of DRE
Informed
Reasonable
None/little
16
17
67
37
33
30
Association between clinic attendance and enhanced knowledge of risk factors for
prostate cancer was statistically significant (Chi square 129.457, df3, p<0.001), as were
associations between clinic attendance and knowledge of prostate cancer symptoms (Chi
square 122.445, df 3, p<0.001), knowledge of PSA (Chi square 106.154, df 3, p<0.001)
and knowledge of DRE (Chi square 83.084, df 3, p<0.001).
However, a relatively large proportion of men (>25%) reported that even after
attendance at the clinic they had limited knowledge about symptoms of prostate cancer
or investigative tests for it (Table 10).
4.2.8 Satisfaction with the clinic
All people attending the clinic, whether in search of information, or to undergo a check
up for prostate cancer were invited to report on their level of satisfaction with the clinic.
Data they provided suggested they were very satisfied with the service provided by the
clinic and would recommend others to attend in the future (Table 11).
34
Table 11: Satisfaction with service provided by clinic
Satisfaction with visit to
clinic
Would you recommend
clinic to others?
n
%
Very satisfied
237
83
Satisfied
47
16
Could have been better
2
<1
Not happy at all
-
-
Yes
292
100
Not sure
1
<1
No
-
-
35
4.3 Audit of referrals
Of the 322 men that had a consultation with clinical staff, 59 were referred on to
secondary care. These were men that either had urinary symptoms and/or prostate
enlargement that warranted further investigation (n=56) or men with other concerning
symptoms (n=3).
4.3.1 Positive diagnoses
Of the 59 men referred to secondary care, nine were diagnosed with prostate cancer, one
with an epididymal cyst (requiring surgery), one with urine retention and one with
diverticulitis. Of the men diagnosed with prostate cancer the majority were diagnosed
with local disease (Table 12). This is unlike the typical pattern of diagnoses where 2025% men are diagnosed with metastatic disease23.
Table 12: Prostate cancer stage at diagnosis (n=9)
T2 N0 M0
T3 N0 M0
7
2
36
4.4 Economic appraisal of the outreach clinic
Costs of setting up and running the clinic, along with those associated with promoting it,
were collated and summed (Table 13).
Table 13: Costs associated with the set up and running of the clinic
Item
Equipment
Cost
£23551.63
Spectrafuge 6C x1 @ £485
Ultrasound machine x2 @ £12,350
Multiviewer software x2 @ £50
Urodyn+ with Wirless Spinning disc flow unit and frame x1 @ £2,370.25
Clinical Micturition Chair for Spinning disc flow units x1 @ £228.95
Urodyn+ with weight cell flow meter and frame x1 @ £2,227.75
Commode - for urinary weight cell machine x1 @ £204.25
Funnel for Commode for urinary flow weight cell machine x1 @ £23.75
Paget portable/folding examination couch x3 @ £585
Paget carrying bag x3 @ £29
Screen partitions x4 @ £149.25
Laptopx1 @ £666
Printer x1 @ £154.99
USB Stick x1 @ £14
VAT @ 17.5% £3,507.69
Staff costs
Specialty doctor 39 sessions @ £204.80
Receptionist 85 sessions @ £74.28
Consultant Urologist 21 sessions @ £600
Nurse 48 sessions @ £159.98 per session
Additional nursing costs £12, 446
Hall hire
£7987.20
£6313.80
£12600
£7679.04
£47026.04
£15,000
Advertising costs
Posters/leaflets £492.58
Radio interview £460
Radio advertisements £400
Advertising campaign on buses £2750
£4102.58
PSA tests (271 x £5)
£1355
TOTAL
£91035.25
From Table 13, costs per man that attended for consultation were calculated as £282.72
(£91035.25/322). If 12 men had attended each session (target number), and a maximum
annual attendance of 1,176 men had been reached, the cost per consultation would have
fallen to £77.41. This would compare very favourably with the cost of GP consultation
£3624, not least as men would have had additional tests not generally provided within
37
general practice (urine flow and ultrasound readings). Costs were indicative of setting up
a new service; had the clinic ran for a second year the £23000 procurement costs would
have been spread over 2 years rather than 1.
Costs were also calculated by diagnosis and revealed that the costs per man diagnosed
with prostate cancer was approximately £10,011 (£91035.25/9). If diagnoses of other
serious medical conditions were included the cost per diagnosis of serious illness fell to
approximately £7,586 (£91035.25/12).
All cases of prostate cancer diagnosed through the clinic were diagnosed at an early stage
(Table 12). Arguably, treatment costs could potentially be saved as a consequence.
4.4.1 Wider impact of the clinic
Data were attained from Newham University Hospital NHS Trust to explore whether
new referrals of men to urology clinics within the hospital were impacted - potentially
through GP’s and men’s enhanced awareness of prostate cancer - as a result of the clinic
and its promotion locally. These data determined that numbers of new referrals have
been steadily increasing since 2008. Whilst there was a more marked rise from 2010-2011
– over the time the clinic ran (Table 14) - this could have been attributed to a number
of factors, not least more men proactively seeking PSA testing through general awareness
of the disease (a national trend). Further, referrals could have been made for many
reasons other than suspicion of prostate cancer. However, these upward trends were also
evident in numbers of PSA tests processed by Newham University Hospital Trust on
behalf of GPs across the PCT (Table 15). Again there was a pronounced increase over
the time the clinic was running.
Table 14: New referrals to urology clinics
September
October
November
December
Total Sept-Dec
New male referrals to
urology 2009
202
174
158
199
733
New male referrals to
urology 2010
212
203
168
163
746
New male referrals to
urology 2011
241
214
236
184
875
Table 15: PSA tests taken in community and processed by Newham University Hospital
Trust
PSA tests processed
PSA tests processed
PSA tests processed
2009
2010
2011
September
311
320
354
October
306
312
338
November
274
284
377
December
233
196
313
Total Sept-Dec
1124
1112
1382
38
4.5 Men’s perceptions of the service
Interviews aimed to capture men’s views on the accessibility and acceptability of the
clinic and to understand some of the factors that act as barriers or facilitators to men
attending their GP or walk-in clinics, such as the one established in Newham, to discuss
issues around prostate health and prostate cancer. Most men interviewed had attended to
be tested for prostate cancer. Two men (both Asian) went to the clinic to attain a second
opinion about tests they had undergone and/or medication they had been prescribed
previously by a GP or urology specialist.
Findings generated a number of themes and subthemes presented below (Figure 6).
Figure 6: Themes discussed in interviews with clinic attendees
Accessibility of clinic
Acceptability of clinic
o Suitability of venue
o Professional presentation
o Privacy
Diagnostic tests
o Experience of them
o Testing choices
Follow up
o Understanding processes
o Communication with GP
o Understanding results
4.5.1 Accessibility
Men were unanimously positive about the clinic’s accessibility. It was regarded as
convenient - being close to home for many. One man explained:
'It was nice just to be able to go somewhere 3 minutes from one’s house. Pop in, get it
done in half an hour, 45 minutes... it was just in and out...’ (ID03, a white man).
Four men stated they attended the clinic as it was more convenient than going to their
GP. This greater convenience related largely to not requiring an appointment prior to
attending and the provision of the service after work hours. As one man explained:
‘The main reason I went there was because I knew [from] my brother-in-law that I didn’t
need to make an appointment beforehand and it was convenient ... I can go after work as
well, rather than just business hours as you do with the doctors’ (ID09 a black Caribbean
man).
39
Men compared their experience of attending the clinic with that of attending the GP.
They revealed how having to book an appointment with the GP via a receptionist can be
off-putting when the medical issue of concern is of a sensitive nature:
‘Going to the GP; first of all it is a big hurdle even to get around to the receptionist.
Sometimes you’ve got to explain to the receptionist ... what is wrong with you. You don’t
always feel like telling the receptionist ‘hey man, I’ve got a problem with my waterworks’!
Secondly, the GP only has 10 minutes to talk to you. That to me is a joke. How could
you explain something? I don’t think 10 minutes is enough’ (ID11, a man of mixed race).
As evident above, short appointment times in GP surgeries were additionally seen by
some as insufficient to allow comprehensive discussion of health concerns.
Overall, the clinic was seen as accessible geographically (near to men’s homes),
financially (requiring few if any travel costs for most), and very ‘male friendly’:
‘Being men, something like that where we can just walk in after work as in my case, is
quite handy. Rather than having to book an appointment, go and see a doctor, take time
off work etc. etc. This is just simply a case of walking in, get yourself checked out and
then take it from there. So from that point of view it’s very male friendly’ (ID04, a black
Caribbean man).
Another black Caribbean man explained:
‘...if they [black men] know how easy and quick it is, that may reduce some of the
resistance or the apprehension from the Afro Caribbean male population' (ID09, a black
Caribbean man).
4.5.2 Suitability of clinic venue
The majority of men interviewed (n=11) knew of the African Caribbean Community
Centre - five had previously visited it for private parties or social events while another six
lived nearby and so knew of it, but had not been in the centre previously. Some men
voiced their surprise that the clinic was run from a social centre and explained how this
was somewhat disconcerting. One man revealed: 'I was a bit bewildered. Hey is this a
social club? Or what is it all about?’ However, he went on to explain: ‘But I was soon put
at ease by the people there and they done what they had to do and I come away happy
enough.’ Yet he did suggest that some people may not have persevered:
‘I’m sure other people might have taken a look and walked away’ (ID07, a white man).
Arguably, white and Asian men may have been deterred from attending the clinic
because it was run from a centre for the African and Caribbean community. This was not
an issue that the Asian men raised, but two of the white men interviewed raised this
issue. One of the two articulated:
‘I’d say the Afro Caribbean name is a little bit off putting for me... So it went through my
mind whether it was the right place to go but I thought I’d give it a try anyway’ (ID17, a
white man).
40
A man of mixed race also raised this and suggested:
‘It needs putting in the local papers [saying] there’s a local clinic here and [it is] open to
anyone... You see, the problem is if they hear Afro Caribbean Centre, white men who
suffer maybe from the same thing would tend to say ‘well Afro Caribbean Centre, oh
that must be only for black people’ or something like that’ (ID11 man of mixed race).
Men emphasised the importance of having adequate signage directing them to the clinic,
particularly once inside the centre. The clinic was at the end of a corridor which one man
appreciated as ‘you wouldn’t get people walking past it’ (ID09, a black Caribbean man);
clinic visitors would be unaware of who was attending. However, a lack of sufficient
signs was alluded to. Consequently, some men asked the receptionist in the centre for
directions to the clinic. Whilst this was acceptable to most, one man felt inhibited by a
group of young people gathered at the entrance to the centre:
'If you go to a building which is not really a medical building, and you ask someone for
something relating to medical problem, sometimes you don’t really want to tell people
what you are here for’ (ID12, a black Caribbean man).
Men were also asked about their immediate impression and thoughts about the
appearance of the clinic. Most of them thought it was acceptable if 'fairly rough and
ready' and ‘not impressive, but ok’. Men appeared to have differing expectations on
arriving at the clinic. Some appreciated that it was not permanent and this impacted their
expectations:
'I wasn’t expecting a proper sort of place, they said ‘we are starting this’, so it was alright,
not bad... When entering the hall I said, ‘Oh, I see’- it looks like a fairly simple layout, I
said ‘That's fine’. It's just, they are camping, isn't it, [it is] temporary' (ID08, an Asian
man).
However, for some the clinic fell short of expectation. One man explained in some
detail:
‘I thought it doesn’t look much like a clinic! It’s just like a community hall really, which
was a bit off-putting. I was expecting like when you walk into a hospital. I didn’t think it
was very nice really... It doesn’t give the impression that it’s professional if you like. But
don’t get me wrong, there was nothing wrong with the people doing their job. It’s just...
the environment didn’t look right, you know. Not what you are expecting to walk into’
(ID15, a white man).
4.5.3 Conveying professionalism
The importance of conveying professionalism was frequently alluded to in the interviews
with clinic attendees. It appeared particularly important to achieve given the unorthodox
environment in which the clinic operated. This related to not only the physical
environment but the appearance, attitude and skills of the clinic staff. The clinical staff
(and notably nursing staff) was unanimously praised for their respectful communication,
clinical competence and calming presence (some men were anxious on arrival). As one
man stated:
41
'The nurses were a very calming influence. Try to put you at ease, really. And they were
all professional in their duties. So I was impressed with them. They show you respect
and they go about it in a professional way' (ID14, a black African man).
However as well as their attitude, the nurses’ appearance was important for some men.
They were not in uniform and did not wear identity badges which made at least one man
question their credibility:
‘Well, the walk-in aspect of it was good but I was a bit apprehensive as to the privacy of
it and whether they [were] actually professional nurses or just someone that volunteered
to come and do some experiments. But I did talk to the nurse and she said she was a
proper nurse; she works at the local hospital. I felt a bit more relaxed then that it wasn’t
just volunteers, you know, come in and have a go. They didn’t dress like nurses you see.
I suppose you are looking for a stereotype nurse with a white cap and nurses’ veil on and
blouse and whatever’ (ID06, a black Caribbean man).
However, confidence in a service - and the conveyance of professionalism - begins from
first point of contact with it. In some instances this could have been improved, one
interviewee revealed:
‘I was saying hello, hello..., good afternoon, good afternoon, [the receptionist] didn’t
bother to turn. I don’t know what happened, maybe she was sleeping or I don’t know,
but normally reception [staff], as soon as you open the door they should welcome you’
(ID16, a black African man).
4.5.4 Privacy
Consultations were undertaken in screened off areas in close proximity to one another
partitioned by relatively insubstantial screens. When men were asked for their views on
the physical layout of the clinic, privacy was an oft mentioned subject and opinion was
divided. The majority of interviewees (12 out of 20) were unconcerned by the level of
privacy during consultations. As one black Caribbean man declared:
'I know there are some people who would prefer a room with a big door with no sound
at all [laughs]. But I mean it is in the middle of this giant hall. The camouflage is all
around, you are sitting away from it, you can't really hear nothing, it just… guys are
paranoid... But I was fine with it' (ID01, a black Caribbean man).
However, six men conveyed concern over perceived lack of privacy. One expressed:
‘I think given the nature of it, that environment wasn’t suitable for such activity at all... as
sometimes some tests could be a personal examination. Such environment is not suitable
for it at all. Just no privacy. It is just a normal hall. It is like [a] makeshift hospital' (ID13,
a black African man).
These views were echoed by five other men who were also concerned about the
audibility and confidentiality of their and others’ consultations. One disclosed:
‘You could hear the questions going and then their responses. It wasn’t too private and
because of the nature of the [room] you could hear the conversation going on and [the
men waiting] could definitely hear what was going on’ (ID16, a black African man).
42
This was particularly concerning for some due to the sensitive nature of what was
discussed:
‘Some of the questions they are asking, like do you get up in the middle of the night to
go to the toilet... I mean, that is a bit personal, isn’t it? Because it was an empty hall and
the noise kind of travels, and its quiet as well. So unless you are kind of whispering,
mumbling, it’s a bit awkward' (ID12, a black Caribbean man).
Two interviewees had attended the clinic when there were no or only a few other men
waiting and reported feeling unconcerned about others overhearing conversation.
4.5.5 Diagnostic tests
Of the 20 men who were interviewed, 18 had had a DRE and 17 had undergone PSA
testing at the Newham clinic. Most men had undergone both tests (n=14), while six had
only had one. Twelve men had additionally had their urine flow assessed.
4.5.5.1 Digital Rectal Examination
Most (14 of the 18) interviewees who had a Digital Rectal Examination (DRE) were clear
about its purpose. Some men had previously had a DRE (n=3) and these men were not
concerned about having the test repeated. Others had heard of the test from friends and
relatives. This was not always helpful as friends/relatives in some cases constructed a
degree of taboo surrounding the test, regarding perceived associations with
homosexuality and concerns over personal violation associated with it. For example three
different black Caribbean men:
‘There is still that thing where, you know, no-one is putting their hand there [laughs]
there is still that macho thing. It is very intimate for a stranger to do' (ID01).
'Two of my friends didn’t quite like the back passage examination... It is a stigma,
especially with black men; they don't like things entering their back passage. You know,
there is a stereotype with gay and lesbian and they think that once [someone] starts to go
up their back passage, they are dishonouring themselves' (ID06).
'I think maybe men are embarrassed to be examined by a male [doctor]. I remember
when I went to my doctor; I didn't really want to go, to tell you the truth. [Interviewer:
why?] I don't know, for some people [a] macho thing come in' (ID14).
For other men, the DRE was perceived as a necessary element of the diagnostic process:
'If that is the way it has to be done, do it... It didn’t really bother me what sort of test it
was' (ID10, a white man).
Most men reported that their initial fears were unfounded as the test was neither as
uncomfortable nor invasive as they had anticipated:
'I thought [the DRE] would have been more intrusive, uncomfortable. But it wasn’t'
(ID11, a man of mixed race).
43
Not all men felt adequately prepared for the test. One explained how he would have
showered and put on clean underwear had he realised what it would entail (ID16, a black
African man).
4.5.5.2 Prostate Specific Antigen test
Unlike the DRE where men appeared relatively well informed about the purpose of the
test, men in general voiced less certainty regarding the purpose of the Prostate Specific
Antigen (PSA) test. Of the 17 who had reportedly had a PSA test, three at first could not
recall whether it had in fact been performed. A further six could not recall being given
information about the test before the blood sample was taken. Many appeared to
consider it routine - not dissimilar to blood tests undertaken for other medical reasons,
and they typically did not reflect on what test results could mean. For example one black
Caribbean man disclosed:
[The doctor] said ‘we have to take some blood from you to check the prostate, see how
large or what reaction is there’. But apart from that it was no different to the normal
blood test I get from my doctor. He just took a vial and that was that. But I don't know
what he was looking for, he never said, and up to now I still don't know, and to be
honest I never asked' (ID05, a black Caribbean man).
However, a small minority appeared to have a good understanding of the test and were
aware that it could detect prostate cancer at an early stage and potentially avoid complex
or invasive treatment. For instance another detailed:
‘They said if they found abnormal cells in the blood test sample then that would warrant
more investigation. But if there is none, then it would be considered normal... [If] these
abnormal cells [are detected] at this stage, then it could be that a normal simple
procedure of curing it could be applied and it would be effective’ (ID13, a black African
man).
Yet, even those with a good knowledge of what the test measured reported not knowing
what the normal range comprised:
'They mentioned something about they were going to examine the PSA, but at that time
I didn’t know the ranges of the PSA and what was good and what was bad. So I knew
they were taking my blood, but I wasn’t sure why’ (ID04, a black Caribbean man).
4.5.6 Making decisions about diagnostic tests
Men were asked how they decided whether or not to undergo diagnostic tests provided
by the clinic. In response, men typically explained that they did not perceive that choice
was required and that in general they could not recall what, if any, information they had
been provided about the tests to enable such a choice to be made. They had come to the
clinic explicitly to be tested for prostate cancer; they wished to have whatever tests were
offered irrespective of what they entailed or could result in:
'I think it was just said that it's a matter of course that they take the blood test. [Were you
happy with you decision to have the tests?] Oh yeah, yeah. I mean that is why I came in
you know. There is no point coming in and then saying well I don't want this and I don't
want that, is there? Defeats the object’ (ID15, a white man).
44
[Were you told the advantages and disadvantages of the PSA test?] ‘Well, to be honest, I
just wanted to have the test done. It wasn't a point of ‘no you can't have my blood’ or
‘yes you can have my blood’. I just wanted the test to be done to find out if I was
suffering from prostate or if it was OK. So I was happy with whatever went on... I think
if I had had a doubt, I wouldn't have come. Once I make up my mind to do something, I
like to do it' (ID05, a black Caribbean man).
[Was it difficult to decide to have a DRE?] ‘No, because once I agreed to go along to the
clinic, I realised that I would have to go through that... I am prepared to go through
whatever it takes really just to find out if there is an issue and what needs to be done. So
to me, the thing is, once I've made the decision to go through, they could go through the
door, I am quite happy to go along with whatever it is I need to do' (ID04, a black
Caribbean man).
Only one man reported difficulty in deciding whether to have one of the diagnostic tests
(the DRE) as he explained:
‘’The bottom test, for a good oh three minutes I was debating whether or not to carry on
and then I concluded that it was in my best interest. So I went ahead with it. But initially
I did think about it, really. [The nurse] said it was going to be [performed by] a man, so I
was a bit anxious, I suppose.... But I was brave and I went through with it’ (ID14, a black
Caribbean man).
These statements are indicative of the interviewees’ experiences. They had in the main
clearly made the decision to be tested before they attended the clinic. They did not
expect to be asked by clinic staff whether they wanted to be tested for prostate cancer or
not. This finding may in part explain why they appeared neither to seek nor retain
information about the tests and their potential outcomes.
4.5.7 Gender and professional background of professional
Interviews additionally explored the importance to men of the gender and professional
background of the person providing the clinical consultation. Nine of the twenty
interviewed were impartial in this regard. Analysis of the other 11 men’s views revealed
no clear preference. Some men articulated a preference for a man to undertake the
consultation and associated examinations, for example:
‘I thought [the tests] were done very well. I was glad to have a man examine me, rather
than a woman - I was slightly put off when I first got there, [to see that] women seemed
to be running the thing’ (ID17, a white man).
Yet others preferred to be examined by a woman:
'I feel more comfortable with nurses, I don’t know why. There is just something about
nurses, they have a way of relaxing you that doctors don’t have and that male nurses
don't have to be honest... Maybe it is because your mother raised you, a woman raised
you, [women] make you feel more comfortable' (ID01, a black Caribbean man).
Three men voiced a preference for the consultation to be undertaken by a doctor; they
expected a doctor to have more knowledge and expertise than a nurse. One of these men
was examined by a man, this was important to him, but he was disappointed that the
health professional was in fact a nurse:
45
'When the guy actually did the test, you know they check the prostate or whatever, it was
done by a nurse, right? Some nurse. I thought a doctor would do it, you know, a more
experienced, somebody who knows what he is doing ... I didn't like that bit’ (ID20, an
Asian man).
4.5.8 Follow-up
Interviews revealed lack of clarity for some men about how they would be provided PSA
test results or told of any need for follow up. One man had returned to the clinic to
collect his results but was instructed to get them from Newham University Hospital. In
the event, they arrived (as per planned protocol) by post. Another gentleman had not
received results by post but had been informed of his satisfactory PSA test result by his
GP.
Most men interviewed were satisfied with how and when they were given their results.
However, at the time of the interviews five men had not received their results even
though they had attended the clinic several months previously.
Lack of clarity over the follow up and referral process resulted in one interviewee being
referred to one hospital’s urology service by the clinic staff and to another hospital’s
service by his GP. Consequently, he attended both hospitals and became confused over
who was overseeing his care.
4.5.9 Understanding test results
Men were asked during the interviews how well they understood their test results. Eight
interviewees reported having a good understanding; however the remaining 12 lacked
clarity. One man explained:
'I still don’t understand, I got the result and the nurse said it was enlarged, but I am not
really 100% know what that meant. I thought they would maybe give me a call or you
know some letter say that you're ok or don’t worry or…’ (ID02, a black Caribbean man).
This gentleman had received a letter with his PSA result from the clinic but revealed how
he had been unsure ‘where on the paper [the results] were written’. He had taken the
letter to his GP, but his GP had merely noted the results without explaining them. He
remained worried about what his results meant.
.
Similarly, another man had been informed by the clinic - following DRE - that his
prostate was enlarged. This ‘frightened’ him as he was uncertain whether this was of
concern. He had received his PSA test result by post but stated that he could not
interpret it. He had a GP but had not consulted her regarding his test results. This is of
concern as the clinic had suggested he consulted his GP for medication to address his
symptoms. He stated:
‘No, I haven’t asked my GP. I was expecting that if there was something my GP would
get in touch with me. But since my GP hasn’t got in touch I thought she hasn’t got a
letter’ (ID16, a black African man).
46
4.5.10 Communication with GPs
Men that were interviewed appeared reluctant to initiate discussions with their GPs about
their clinic attendance or test results. The following quote from a man who had attended
the clinic 4 months previously exemplifies this:
‘I’ve been to see my GP a few times and he hasn’t mentioned it to me and I haven’t
heard anything... They said they would write to me, [that] my GP would write to me if
there’s a problem, but did the GP receive the report? I don’t know. Should I be the one
to go and follow-up my GP or pester him? (ID06, a black Caribbean man).
Several men appeared to lack confidence in discussing matters relating to prostate health
with their GPs. One man explained why:
‘I don’t know…sometimes with the GPs it’s very difficult to talk to them. For instance
when I go to my GP [to] get my blood pressure checked, it’s like; you go there, you see
him, he checks your blood pressure, it’s a bit high, it’s a bit this and then you’re out
again... It’s like you’re on the clock. So it’s a little bit difficult sometimes’ (ID12, a black
Caribbean man).
These data suggest some men felt uncertain about the interface of the service with their
GP practice. Further, it appeared men were not always confident in talking to the GPs
about issues regarding prostate health.
47
4.6 Stakeholder’s perceptions of the service
Stakeholders were interviewed to gain their perceptions of the practicalities of setting up
and running a clinic in the community, and the contribution it made to men’s health in
the locality. Analysis of their interviews generated a number of themes (Figure 7).
Figure 7: Themes discussed during stakeholder interviews
Clinic’s unique contribution:
● Focused on men’s health
● Bespoke service
● Empowering
● Bypassed GP
Successes:
● Cross cultural appeal
● Raised awareness of issues for men’s health in community
●Word of mouth referral
Unexpected consequences:
● GP referrals
● Conditions other than prostate cancer diagnosed
● Goodwill required
Operational challenges
● Effective collaboration
● Project management
● Procurement
● PSA testing
● Staffing
● Promotion of clinic.
Interviews with stakeholders provided opportunity for the collaborating agencies to
reflect on the clinic’s contribution to men’s health within and beyond the confines of
Newham and to consider how the outreach clinic for prostate health differed from health
services already in existence in the locality.
4.6.1 Bespoke service focussed on men’s health
Stakeholders perceived that the clinic’s focus on issues relating explicitly to men’s health
were one of its particular strengths and set it apart from other local services. As one
stakeholder explained:
48
‘Well there isn’t anything like that ... where men just go along and it’s just a prostate
focus, as opposed to blood pressure or cardiovascular disease or diabetes, so I think it’s
different in that it’s a men’s health or part of a men’s health, it’s like a men’s health
agenda.’
The service was perceived as bespoke developed expressly to reach men that may be
reluctant to use GP services and to provide a service with cross cultural appeal within the
local community.
‘It’s a bespoke service for a start. I think it’s a signature service...It’s been purely
established for a group of people that perhaps would not access healthcare through
other routes therefore it relies an awful lot on self referral to come through the door. It
doesn’t rely on GPs putting people through…’
4.6.2 Self referral and empowerment
Negating need for GP referral was seen as beneficial in reducing obstacles to early
presentation and diagnosis with prostate cancer and empowering:
‘Well it wasn’t formal; it was something that men were encouraged to just walk in. It
never normally happens, normally you have to have an appointment, a letter, a hospital
number, a point of reference, you’ve got to go to your GP, you’ve got to do this, that
and the other whereas this completely put the onus on the person just to say ‘oh well I
want to take some responsibility for my health, I’m a bit worried about this.’
‘It’s great, you walk in, you walk out with a diagnosis, a plan, instead of going to your GP
and having to wait to be referred into hospital which can take anything up to 18
weeks…’
Comparison was made by stakeholders between the experience of visiting the GP and
visiting the clinic. Their views were similar to those presented by the men that were
interviewed (Section 4.5.1):
‘A GP hardly has 10 minutes and when you go to a GP… he is looking at the screen, not
at you… but when you go to [prostate] clinic, which is a specialist clinic, the clinicians
don’t look at the computer screen they actually talk to you, they explain to you, and I
think that gives a different touch when you deal with patients. So I think it’s quite
different and I think to raise awareness and actually to promote something new, I think
this is a very good approach.’
4.6.3 Clinic’s perceived successes
Stakeholders strongly believed that the clinic helped to raise awareness of men’s health
issues within Newham. It appeared to stakeholders that health concerns often regarded
as taboo were being spoken about by men; this was consistent with findings (Section
4.2.3) regarding the proportion of attendees who knew of the clinic through word of
mouth (25%). One explained:
‘…well from a patient or user point of view you know I think we’ve seen well over 250
men come through the doors in that time so that’s probably 250 people better informed
about their health issues from a urology point of view...there was probably an indirect
and an intangible benefit from where the clinic was because that centre is used by people
from the community from the African Caribbean group in the main so I’m sure they will
have, people who didn’t go direct to clinic would have been aware that it was going on
49
those two days, week by week...they might have actually picked up information and
talked to others.’
This view was echoed by others:
‘...certainly it has raised the awareness amongst them [men in Newham] and I think if
you have raised awareness amongst one person he would go back home and son or
brother or someone they would have told him as well… so I think simply raising
awareness, that money is well spent there.’
Another stakeholder was more specific about how awareness of prostate cancer was
being raised through the clinic:
‘Most of these men who turned up didn’t know anything about the prostate, the PSA,
but by setting up this clinic we opened their minds, we taught them about the PSA,
about prostate cancer, that prostate cancer sometimes doesn’t even have any symptoms
at all so obviously that opens their mind then you can talk about this to their family or
neighbours or friends...’
4.6.4 Word of mouth referral
It was envisaged that success would breed success – when men found the clinic’s service
valuable they would inform others of it. Stakeholders were of the impression that men
were ‘so grateful for the service…’ and that those who attended typically ‘found it a
marvellous service... an attractive thing to be offering’ a service men thought of as ‘quite
different and innovative.’ Stakeholders believed this positive reputation was of
fundamental importance because:
‘...you need to have a fairly good reputation with the local community if colleagues are
going to refer among friends, which they seem to do… I think there was a strong peer to
peer referral element; people were telling people about it.’
Other stakeholders held a similar view, for example another explained:
‘I think there was a large degree of peer to peer referral so I think people were talking to
each other over dominoes, over pints, out shopping and mentioning the clinic and I
think that helped. I think there was an acceptance among the community... I think the
fact that it wasn’t an NHS provider made a real difference.’
4.6.5 Clinic’s cross cultural appeal
The clinic’s cross cultural appeal was perceived by stakeholders as one of its important
successes.
‘I think we’ve been able to engage men of all ethnicities in this clinic. I think we’ve
demonstrated that you know, men have got sufficient interest in their health, you just
have to provide the right kind of environment to for them to come.’
Success was attributed in part to the collective endeavours of the collaborators who
brought expertise and insight into clinical, academic and policy issues to the pilot:
‘I think having input from different organisations with different perspectives really made
it more comprehensive.’
50
4.6.6 Operational challenges
Time from conceptualisation to the opening of the clinic was not inconsiderable. As one
stakeholder revealed:
‘This project’s been ongoing since summer 2009. It’s been operational since January
2011, so that gives you the size and the chronological distance between vision and the
inception.’
This was not unsurprising given the requirements of establishing a clinic of this nature. A
number of different challenges needed to be resolved as outlined below.
4.6.7 Finding a suitable location
Finding a suitable location for the clinic was a key consideration. It had been hoped to
run the clinic from West Ham football ground and incentivise men to attend by offering
a tour of the club’s facilities. However, changes in club management rendered this
impossible. Consequently, a new location was required and the African and Caribbean
Community Centre was selected because it was as a resource within the community
already engaged in health promotion activities.
Stakeholders strongly emphasised that the clinic was not intended to replicate a clinical
space, but rather to function within an environment familiar to those it aimed to target.
One explained:
‘I think the physical environment of the clinic is absolutely suitable… I think the
challenge was originally when people first started to view the clinic they were viewing the
clinic with NHS eyes so by that they were looking at health and safety issues...They were
looking at fire issues, they were saying it was a little bit dirty, it’s a little bit grubby and
they seemed to be missing the point completely that this was an African Caribbean
Centre for people used by the community for the community.’
Stakeholders, like the men interviewed, praised the clinic’s location:
‘I think that was perfect because it, you know, it was quite local, it’s on the main road
and it’s a community centre that is used widely within that area… I think it was good
that it was there.’
Another had noticed that many clinic attendees were very familiar with the centre:
‘Everyone walked in to the hall saying they’ve had many parties here. I think half of
Newham must have had a party in the centre so… it was not a clinical situation, it was
just there for helping people.’
4.6.8 Managing personnel issues
Recruiting clinical staff to work at the clinic was time consuming as was the process of
sorting out contracts - not least as a number of clinical staff recruited to work in the
clinic (notably nursing staff) were not employed by Newham University Hospital Trust.
In the event, insufficient numbers of nursing staff were recruited to work at the clinic
which created stress for the staff rota. Operating with minimal staff meant that there was
no cover for sickness or annual leave:
51
‘… from the outset I said that we needed to have a pool of nurses. We wanted to have
eight nurses who could form a rota to staff the clinic and therefore we needed to
advertise… there was a reluctance to advertise because it would take months to get
someone in post. I wish we had done so… some went on annual leave for example then
we might be short, or there might be just the one nurse [at the clinic] or someone goes
off sick for example, one nurse went off sick and therefore there was only one nurse
[working]… that was unnecessarily stressful.’
Further, nursing staff did not always have the required clinical competence - for example
training in conduct of DRE. This impacted the range of tests that the clinic could
provide and required men to be followed up in the hospital trust (moving further from
the one-stop service that it was hoped to achieve):
‘… if somebody who was experienced with DRE could just examine their prostate it
might be that they say ‘no its definitely not anything to worry about’ and discharge them
back to the care of their GP, whereas I will have to give them an appointment in to the
hospital because that [DRE] is the limit of my experience.’
The lack of a project manager meant that complications with the project were managed
at a local level by the nurse specialists (e.g. accessing and fetching equipment from
Newham hospital, and delivering blood specimens to the laboratory at Newham hospital
after the clinic had finished). While these problems were not insurmountable they did
cause stress and were not the most efficient use of a nurse specialist’s time.
Reduction of medical cover for the clinic did have some important implications. For
example, nursing staff had concerns regarding potentially having to break bad news to
men. One nurse explained:
‘…when we do a physical examination and we find that the prostate was really abnormal
we have to tell the patient that there’s a possibility of cancer which is not really good for
the nurses to say to the patient. It should be coming from a doctor or a medical person,
who handles sensitive medical information...’
4.6.9 Procuring clinic equipment
Other time-consuming challenges related to procuring equipment for the clinic. This was
lengthy and took longer than anticipated. As was explained, much new equipment was
required:
‘…we had to procure everything, we had to procure the flow rate machines, we had to
procure the ultrasound machines, we had to procure the couches… the blood test
bottles…’
As nursing staff were not employed by Newham University Hospital Trust, they were
unable to liaise with the hospital procurement department directly to attain clinic
equipment. Thus, clinic staff had to rely on their contacts within the hospital trust to
submit orders, sometimes as short notice, for clinic items. Additionally, equipment was
not delivered direct to the clinic:
‘If we’ve ever ordered anything we don’t get it, whoever goes to Newham [hospital] and
works at the clinic has to pick it up and bring it physically’
52
Further, equipment did break down during the life of the clinic (flow rate and ultrasound
machines). Stakeholders identified that service contract agreements were important in
getting equipment mended.
4.6.10 Determining process for transferring clinical information to acute hospital
Storing and transferring clinical information to Newham University Hospital Trust was
complex, particularly because the clinic could not be linked to the hospital’s computer
system. Consequently, data were not entered into electronic patient records in real time
and the process for processing men’s data was laborious:
‘What we intended was to use a laptop to record all of this data, we mapped out the
process for that would include photocopying handwritten material, data entry onto
simple access database... That didn’t work in the way we intended … The other thing we
explored was whether we could have a connection via the internet through a secure
medium to the hospital’s main system from [the clinic]...But because that [hall] had no
broadband connectivity, that wasn’t an option we could explore so what we had to have
was like a standalone process on paper.’
4.6.11 Promoting the clinic
Stakeholders were aware that efforts to advertise and promote the clinic were sporadic
and impacted on clinic uptake. In the event, the communications strategy was developed
after the clinic commenced. One stakeholder stated: ‘…I think that was a failing
internally really.’ The establishment of the clinic was the overriding priority. Another
explained:
‘I think quite a lot of energy is put into actually setting the service up and the
communication sometimes gets a little left on the wing. But of course if you don’t
advertise the clinic it’s not going to really take off because people won’t know about it,
all those channels aren’t being used… that [communications strategy] was not
immediately on the agenda.’
Promotional materials were changed over time. Initially, materials showed an image of a
black man. However, there was some recognition that as the clinic was also housed in an
African and Caribbean Community Centre that men from other ethnic groups may have
been discouraged from attending:
‘I think at first there was an impression that it was for black people alone. I think that
was the initial impression people got until they did another poster which had a black
person, an Asian person, a white person… when that poster came out then that’s when
Asian’s started coming, white’s started coming and so on.’
Additionally, promotional materials were amended to ensure men were aware that the
service provided by the clinic had no charge. As one stakeholder elaborated:
‘I think looking back some of the posters could have been designed differently
because… it was eight or nine months in when the message came back that some men
didn’t come because they didn’t know it was a free service and they thought they’d have
to pay for it.’
53
4.6.12 PSA testing
The initial intent was to offer men ‘point of care’ PSA testing; they would have a PSA
test and be provided the results during the same clinic visit. However, in the event this
was impossible due to the low accuracy of available point of care tests. This unforeseen
change resulted in a complicated process for the attaining, transferring, processing and
reporting of blood specimens:
‘So we had to devise a plan very quickly as to how we were going to get these men’s
PSA’s done, which involved negotiating with biochemistry, with the path lab and
working out this complex system of taking blood samples there [to the hospital] with the
special forms and then transporting them back to the lab and getting the results back
from the lab and informing the patients and the GPs.’
Nurses working in the clinic were required, at the end of the clinic, to transport blood
specimens to the hospital for processing. However this proved problematic, as access to
the pathology laboratory was restricted to staff working in the hospital trust:
‘So that built in a whole load of further steps around staff being able to transport
hazardous specimens over to the lab and that’s not easy at eight o’clock at night because
the hospital is locked up and you can’t get them to where they need to be… I repeatedly
had complaints, not unreasonably from the nurses, that you know, despite having set
them up with access cards on the swipe system, they couldn’t get into the hospital at
eight o’clock at night to drop off the specimens.’
Additionally, accessing test results proved problematic in the early months of the clinic:
‘The original model was that the nurse specialist who saw the patient would chase the
blood results and give that back to the patient. For various reasons that didn’t work
particularly well because most of them… weren’t working in Newham so they had
difficulty getting those results out of the lab. So halfway through we changed it so that all
the results would come back to [the clinical lead’s secretary]… She would get all the
results in and [the clinical lead] would go through all the results and put normal or
abnormal and then a letter would go out to the patient depending on whether it’s normal
or abnormal.’
This process was time consuming, as one stakeholder explained:
‘My expectation was that [results] should be available and communicated to the men
within a working week. I think the reality was that it was probably a number of weeks
before they got their result…so I think it was quite a negative thing for the men who
came in if they were worried… we did have a few patients I recall who came back to the
clinic… saying ‘I came in a couple of weeks ago I still haven’t had my result.’ That was
unfortunate because there would be no means there for the nurse to look up on the
system because they are not connected to the system.’
4.6.13 Managing the pilot
Stakeholders were strongly of the opinion that many of the challenges outlined above
would have been addressed effectively had a project manager been employed for the
duration of the clinic. The clinic functioned in the main without a project manager, and
most of the stakeholders agreed that this was a significant obstacle for the smooth
running of the pilot. It was believed that the clinic required ‘someone to manage it and
look after the process of registration, to publicise the clinic, report what’s going on every
week, make sure that every person who is in the system… has not been missed… make a
54
proper file on each patient. Someone who is responsible for looking after this
clinic…making sure that everything is OK.’
Another perceived that ‘the biggest challenge has been around quality of data and actually
how well we are recording who is coming through the door, what are they coming
through the door for and what is happening when they’ve left.’
Additionally, many stakeholders felt the project did not have a clear lead. It needed an
individual who would follow through on actions agreed at operational meetings; ‘I think
the sheer size of the agencies involved has meant that there has been on occasion danger
of things falling through the cracks… I think the principal challenge for the amount of
agencies is that there has not been one person leading it per se.’
With the passage of time, there was unsurprisingly a change in personnel working on the
project. This resulted in ‘a degree each time of organisational memory loss, so you’ve
having to consistently remind what’s been agreed, what’s been established so far.’
Another detailed:
‘…from my critical sense, the challenge was that different people came to this project at
different stages and times…’
However, it was conceived that this would have impacted less had the pilot been
overseen by a project manager.
4.6.14 Unexpected consequences of the clinic
The clinic progressed in the main according to plan. However, there were some
unanticipated consequences. First, an important and unexpected positive outcome of the
clinic was the diagnosis of serious conditions other than prostate cancer. As one of the
clinicians explained: ‘we have picked up, not just men with prostate cancer, we have
picked up men with other things like benign prostate hyperplasia… we’ve also picked up
chronic retention. We’ve picked up men with other medical problems.’ See Section 4.3.1
for further details regarding this.
A second unanticipated aspect related to referral of men to the service by GPs. The clinic
was not intended to be used in this fashion as one stakeholder revealed:
‘I think some GPs are very lazy and they just referred people to us rather than see the
patients themselves… people say they’d been to their GP and their GP told them to
come to us.’
Third, there was some recognition by stakeholders that over time the clinic largely
revolved around performance of diagnostic tests as opposed to encouraging men to use
the clinic as a hub of information. This was seen to be to some extent a lost opportunity:
‘…there wasn’t necessarily enough capitalisation on information.’
4.6.15 Requirement of goodwill
It was anticipated that goodwill would be required to deliver a clinic like that provided in
Newham as ‘…without goodwill you can’t do much in the community setting…it was
essential that it worked, it was a collaboration.’
55
However, it was perceived that the level of goodwill required was above that envisaged.
Much of how the clinic ran, the time dedicated to running and supporting it and ensuring
it served the community was down to the goodwill of stakeholders. For example one
stakeholder elaborated: ‘…virtually all the staffing…was just by sheer asking people and
calling in favours.’
56
5. Summary and recommendations
5.1 Summary
The establishment of the clinic was the result of a very successful collaboration between
multiple agencies including Newham PCT, Newham University Hospital Trust, the
North East London Cancer Network, Prostate Cancer UK, the Department of Health,
the National Cancer Action Team, Cancer Black Care and King’s College London. The
collaboration established an outreach service for prostate health and prostate cancer that
ran two afternoons/evenings a week for a year. Over 320 men attended over this time. It
required considerable goodwill across agencies involved to set up and run the clinic. This
may not have been sustainable in the longer term.
The outreach clinic was popular with the local community and appeared to attract men
who may not have gone to their GP for advice about prostate health or to have an
examination for prostate cancer. A large proportion of men with urinary symptoms that
attended the clinic had not attended their GP to seek help regarding them. This strongly
suggests there is a role for community-based clinics for prostate health; the clinic
provided a viable alternative choice to traditional primary care services. As anticipated,
the clinic attracted men primarily from the borough of Newham (most lived within 10km
of the African and Caribbean community centre). However, 22 men lived more than 10
km away from the clinic. One man travelled a considerable distance - from Luton - to get
to it (85km). This confirms that men will travel for a service dedicated to prostate health.
A quarter of clinic attendees knew of the clinic through word of mouth. This would
suggest that men in and around Newham were talking about the clinic, which arguably
would raise awareness of prostate cancer and the importance of being screened. This is
an aspect of the clinic that could have been capitalised on further. Most men new of the
clinic from articles published in the Newham Recorder following press releases.
Nine new diagnoses of prostate cancer were made as a result of the clinic. Most were
diagnosed at an early stage; staging at diagnosis did not reflect the national trend where
≥20% men diagnosed are metastatic at time of diagnosis17. Arguably, early diagnosis
could result in lives saved. Interestingly, diagnoses other than prostate cancer were made,
suggesting that men may have used the clinic for timely access to medical assessment and
advice.
It is difficult to ascertain how much the clinic impacted on knowledge of prostate cancer
or increased uptake of tests for the disease more generally within the local community. It
could have raised awareness of prostate cancer across Newham and impacted GP
knowledge, PSA testing and referral patterns but this was not possible to determine with
any confidence in this evaluation.
The evaluation sought in part to explore how men made decisions regarding testing
choices for prostate cancer. The PCRM18 programme asserts that a PSA test should be
provided to men over 50 years who request one after they have been informed of the
benefits and disadvantages of PSA testing. However, many men in this evaluation
appeared ambivalent regarding information about the advantages and disadvantages of
the PSA test.
They came to the clinic to be tested and were keen to have any
investigations they were offered. Consequently, it is questionable how informed their
choice was to have a PSA test. This raises important question regarding how to
57
communicate the principles of informed choice within community outreach clinics for
prostate health like the one in Newham. This should be considered when developing
similar services in the future.
The pilot evaluated one approach to raising awareness of prostate cancer and uptake of
prostate tests in men at risk of the disease. The clinic was valued by men that attended it
and appeared to have successfully met its aims of: 1) promoting prostate health and
awareness of prostate cancer in men within the locality and in particular (but not
exclusively) black African and black Caribbean men; 2) facilitating men’s access to timely
advice and support regarding prostate cancer and to diagnostic tests for the disease; and
3) enabling rapid referral for further diagnostic tests where indicated. However, it may
not have been the most effective or cost effective way of achieving these. Other
approaches should be developed and evaluated and their outcomes compared with those
generated by the clinic in Newham.
5.2 Recommendations
Further community-based clinics are introduced and evaluated to determine
optimal service models and locations to reach men reluctant to use traditional
primary care services for education about, and testing for, prostate cancer. A
model that incorporates an MOT for men’s health could be an alternative.
Ensure complex new service models are sufficiently funded to provide for a
project manager.
Ensure service models are promoted sufficiently. This will require establishment
of a dedicated communications budget and comprehensive communications plan
before the new service opens. It is recommended that promotional activity is
repeated regularly (e.g. monthly) as effects of promotional activity appear short
lived. It is suggested that use is made of local press as this appears most
successful.
Advertising and promotional campaigns should emphasise that the service has no
charge and avoid communicating messages suggesting prostate cancer is always
symptomatic.
Where new models of service are not based in a GP surgery, various aspects need
careful consideration:
1. Location: important features include convenience and ease of access, privacy,
familiarity.
2. Conveying professionalism: this could be achieved by use of signs and name
badges, training staff regarding the importance of portraying a professional
service .
3. Hours of service: this evaluation suggests that provision of a service after
work hours is important.
58
4. Interface between the outreach model and GP services: men and GPs must
be clear about processes for follow up after men leave the clinic. For
example, men could be provided a central telephone number for clinic
enquiries on leaving.
5. Minimising embarrassment: clinics should be staffed where possible by both
male and female health professionals to allow men choice over who examines
them. Attempts should be made to maximise privacy within the constraints
of the surroundings.
6. Possibility for one-stop clinic: if ‘point of care’ PSA testing becomes
sufficiently accurate. This would entail less reliance on agencies within the
hospital (e.g. pathology lab), simplify the process for processing samples and
communicating results to men and provide men with test results immediately.
7. Information provision: clinic staff should be supported in providing
information about prostate cancer and prostate cancer treatment to men
visiting the clinic, and actively encourage them to use the clinic as an
information hub, rather than focusing solely on performing diagnostic tests.
Where men are not directly invited to a service, efforts should be made to
capitalise on word of mouth referral. The current evaluation used business cards
that men could hand to friends, relatives and colleagues to advertise the clinic. It
is suggested that these be used routinely and staff trained/supported in providing
them to men.
Other pilot services should place greater emphasis on education in addition to
providing a clinical service. This would maximise the model’s impact on
awareness and understanding of prostate cancer in the community. It could also
address other health-related issues such as obesity and smoking.
Future evaluations of service models should if possible incorporate a strong
economic evaluation to take wide consideration of both associated costs and
benefits.
59
References
1. Hsing, A., Tsao, L., Devesa, S. (2000) International trends and patterns of prostate
cancer incidence and mortality. International Journal of Cancer (Pred.Oncol), 85: 60-67
2. Northern Ireland Cancer Registry. (2010) Cancer Incidence and Mortality
3. Welsh Cancer Intelligence and Surveillance Unit (2010)
4. ISD Online Information and Statistics Division (2010) NHS Scotland.
5. Office for National Statistics, Cancer Statistics Registrations: Registrations of Cancer
Diagnosed in 2008, England (PDF 544KB) Series MB1 no.39. 2010, London: National
Statistics
6. Ben-Shlomo Y., Evans S., Ibrahim F. et al. (2008) The risk of prostate cancer amongst
black men in the United Kingdom: The PROCESS cohort study. European Urology,
53(1):99-105.
7. Pedersen V., Armes J., Ream E. (2012) Perceptions of prostate cancer in Black African
and Black Caribbean men: a systematic review of the literature. Psycho Oncology, 21(5):457468.
8. Rajbabu K., Chandrasekera S., Zhu G. et al. (2007) Racial origin is associated with poor
awareness of prostate cancer in UK men, but can be increased by simple information.
Prostate Cancer and Prostatic Diseases, 10(3):256–260.
9. Metcalfe C., Evans S., Ibrahim F. et al. (2008) Pathways to diagnosis for Black men and
White men found to have prostate cancer: the PROCESS cohort study. British Journal of
Cancer , 99(7): 1040–1045.
10. Boehm P., Schlenk E., Funnell M. et al. (1995) Prostate cancer in African American men:
Increasing knowledge and self-efficacy. Journal of Community Health Nursing, 12(3):161-169.
11. Collins M. (1997) Increasing prostate cancer awareness in African American men.
Oncology Nursing Forum, 24(1):91-95.
12. Husaini B., Emerson J., Scales S. et al. (2008) A church-based program on prostate
cancer screening for African American men: reducing health disparities. Ethnicity &
Disease, 18(2 Suppl 2):S2-179-84.
13. Abbott R. & Barber K. (1998) A comparison of prostate knowledge of AfricanAmerican and Caucasian men: changes from prescreening baseline to postintervention.
The Cancer Journal from Scientific American, 4(3): 175-177.
14. Wilkinson S., Sinner M., Dai L. et al. (2003) Educating African-American men about
prostate cancer: impact on awareness and knowledge. Urology, 61(2): 308-313.
15. Bryant R. & Hamdy, F. (2008) Screening for prostate cancer: an update. European Urology,
53: 37–44.
16. Thompson I., Ankerst D., Chi C. et al. (2005) Operating characteristics of prostatespecific antigen in men with an initial PSA level of 3.0 ng/ml or lower. Journal of the
American Medical Association; 294:66–70.
17. Burford D., Kirby M., Austoker J. (2010) Prostate Cancer Risk Management Programme
information for primary care; PSA testing in asymptomatic men. Evidence document. NHS Cancer
Screening Programmes. Available at:
http://www.cancerscreening.nhs.uk/prostate/pcrmp-guide-2.html
18. Burford D., Kirby M., Austoker J. (2009) Prostate Cancer Risk Management Programme:
Information for Primary Care; PSA Testing in Asymptomatic Men. NHS Cancer Screening
Programmes.
19. Department of Health (2007) Cancer Reform Strategy. Department of Health: London.
20. Prostate Cancer UK (2011) Testing Choices Campaign Available at:
http://prostatecanceruk.org/get-involved/campaign/our-campaigns/the-testingchoices-campaign
60
21. Ovretveit J. (1998) Evaluating Health Interventions. Open University Press: Maidenhead,
Berkshire UK.
22. Ritchie J., Spencer L., O’Connor W. (2003) Carrying out qualitative analysis. In
Qualitative Research Practice: A guide for Social Science Students and Researchers. p. 219-262. Eds.
J. Ritchie & J. Lewis. Sage: London
23. Jack R., Davies E., Moller H. (2009) Prostate cancer incidence, stage at diagnosis,
treatment and survival in ethnic groups in South-East England. British Journal of Urology
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24. Personal Social Services Research Unit (2011) Unit Costs of Health and Social Care 2011.
Personal Social Research Unit: Canterbury, Kent.
61
Appendix 1– Examples of material used to promote
clinic
62
63
64
65
66
Appendix 2 – Steering group members
Name
Mr Frank Chinegwundoh
Mr Paul Trevatt
Ms Paula Allchorne
Mr Joey Ancheta
Mr Ray Walker
Mr Tim Baker
Professor Emma Ream
Ms Nyambe Mangolwa
Ms Kesti Gossling
Mr Bryan Jones
Mr Mohsin Patel
Ms Frances Haste
Role
Consultant
Urological Surgeon
Cancer Network
Nurse Director
Clinical Nurse
Specialist
Uro-Oncology
Clinical Nurse
Specialist
Uro-Oncology
Cancer Development
Manager
Assistant Director
Public Health
Principal Investigator
of Evaluation
Public Health
Associate
Senior
Communications
Lead
Policy and
Campaigns Manager
Associate Director /
Service Improvement
Lead
Public Health Lead
Organisation
Newham University Hospital NHS Trust
North East London Cancer Network
Barts and the London NHS Trust
Barts and the London NHS Trust
Newham University Hospital NHS Trust
Newham Primary Care Trust
King’s College London
Newham Primary Care Trust
Newham University Hospital NHS Trust
Prostate Cancer UK
North East London Cancer Network
North East London Cancer Network
67
Appendix 3 -Tools used in the evaluation
Prostate Clinic Patient Details
Please complete in BLOCK CAPITALS and return to receptionist
Title:
Mr
Mrs
Miss
Ms
Other
……………
Name:
DoB:
M/F
Male
Female
Age:
Address:
Postcode:
Home
Telephone:
Email Address:
Mobile Telephone:
Preferred method of
Contact:
GP Name:
Not registered
with GP?
GP Address:
GP Telephone:
consent for GP
to be sent
information
Ethnicity (please
tick):
Yes
No
White British
White Irish
White Other
Mixed -white & Black
Caribbean
Mixed Other
Mixed- White &
Black African
Asian or Asian
British- Indian
Asian or Asian
British-Other
Black or Black
British-Other
Do not wish to
disclose
Mixed-White &
Asian
Asian or Asian
British- Pakistani
Black or Black
British-Caribbean
Chinese
Asian or Asian BritishBangladeshi
Black or Black BritishAfrican
Any Other
Language spoken
at home:
Country of Birth:
Reason for
attending:
68
Prostate Clinic
Clinical Assessment Form
Patient ID
Patient age
Ethnicity
(please tick)
White British
White Irish
White Other
Mixed -white & Black
Caribbean
Mixed Other
Mixed- White & Black African
Asian or Asian
British-Bangladeshi
Asian or Asian British-Other
Black or Black BritishAfrican
Any Other
Black or Black British-Other
Mixed-White &
Asian
Asian or Asian
BritishPakistani
Black or Black
BritishCaribbean
Chinese
Asian or Asian British- Indian
Do not wish to disclose
International prostate symptom score (IPSS) (Max score 35)
Quality of life due to urinary symptom range
(Scale 1-6)
Family history of prostate cancer?
If yes, Who? E.g. Uncle, father, brother
Has patient had urinary related symptoms previously?
Has the patient been to the GP for urinary related symptoms?
If yes, on how many occasions?
If yes, when was the most recent GP visit?
In the last month
In the last 3 months
In the last 6 months
Over 6 months ago
If no, why not?
Not registered with GP
No time to visit GP
No GP appointments available
Not satisfied with GP service
Didn’t think symptoms serious enough
Worried about symptoms
Embarrassed by symptoms
Didn’t think GP would take symptoms seriously
Other (please state)
YES/NO
YES/NO
YES/NO














Other Symptoms, not covered by IPSS
69
Maximum urinary flow rate in ml/s
Residual volume by ultrasound
Urinalysis Blood Results:
Glucose:
Protein:
Nitrites:
White blood cells:
PSA blood test:
Rectal Examination Findings: (Please tick)
Normal Consistency
Nodule?
Abnormal
If Yes, what Size?
Small
Yes
No
Moderate
Large
Medications:
Medical Conditions:
Outcome?
Suspicion of Cancer?
Yes
No
Urgent Referral to 2ww office at NUHT
Refer to GP
Discharge +/- results
Information given?
Advised to return to clinic?
70
Prostate Clinic Evaluation Form (consultation route)
Patient ID:
Please complete in BLOCK CAPITALS and return to receptionist
Date seen
How did you find out about the clinic?
Advertising
Word of mouth
Visiting the African and Caribbean centre
Other (please explain)




Went to clinic to book appointment
No appointment- just walked in


Doctor
Nurse
Both doctor and nurse
Less than 5 minutes
5-10 minutes
10-15 minutes
15-30 minutes
Over 30 minutes
Less than 5 minutes
5-10 minutes
10-15 minutes
15-30 minutes
Over 30 minutes
No knowledge
Little knowledge
Reasonably informed
Well informed

















Symptoms of prostate cancer
No knowledge
Little knowledge
Reasonably informed
Well informed




Rectal examination
No knowledge
Little knowledge
Reasonably informed
Well informed




PSA test
No knowledge
Little knowledge
Reasonably informed
Well informed




How did you book your appointment?
Why did you attend the clinic?
Who did you see today?
How long did you wait to see the
nurse/doctor?
How long did you have with the
nurse/doctor?
Before attending the clinic today, what
was your knowledge about
Risk of prostate cancer
71
After attending the clinic today, what is
your knowledge about
Risk of prostate cancer
No knowledge
Little knowledge
Reasonably informed
Well informed




Symptoms of prostate cancer
No knowledge
Little knowledge
Reasonably informed
Well informed




Rectal examination
No knowledge
Little knowledge
Reasonably informed
Well informed




PSA test
No knowledge
Little knowledge
Reasonably informed
Well informed






Did you have any examinations today?
Yes
No
If no, why not?
How much information were you given
about the PSA test?
Too much
The right amount
Not enough
None
Enough
Not enough




How satisfied are you with the
nurse/doctor’s advice about the PSA test?
Very satisfied
Satisfied
Could’ve been better
Not satisfied at all (If dissatisfied please
explain below)




How happy are you about your decision to
have/not have the PSA test?
I have not made a decision yet
Very happy
Happy
Unhappy
Very unhappy (If unhappy please explain
below)





How much chance did you have to ask
questions about the PSA test?


72
Have you been given the results of any
examinations/tests today?
Yes
No


How well do you understand what the
results of the examinations/tests mean?
I completely understand them
I could do with more information
I do not understand them at all
I didn’t have any tests today
Very satisfied
Satisfied
Could’ve been better
Not happy at all (If unhappy please explain
below)








Yes
Not sure
No (if you said no, please explain why)



How satisfied are you with your visit to
the clinic today?
Would you recommend the clinic to
others?
What is your age?
Are you… (please tick)
White British
White Irish
White Other
Mixed -white & Black
Caribbean
Mixed Other
Mixed- White &
Black African
Asian or Asian
British- Indian
Asian or Asian
British-Other
Black or Black
British-Other
Do not wish to
disclose
Mixed-White & Asian
Asian or Asian BritishBangladeshi
Black or Black BritishAfrican
Any Other
Asian or Asian BritishPakistani
Black or Black BritishCaribbean
Chinese
What language do you speak at home?
Thank you for your time.
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Prostate Clinic Evaluation Form (information route) Patient ID
Please complete in BLOCK CAPITALS and return to receptionist
Date you attended the clinic
How did you find out about the clinic?
Advertising
Word of mouth
Visiting the African and Caribbean centre
Other (please explain)
Who have you come to the clinic about?
Myself
Father/grandfather/son/partner/friend /
brother/colleague (please delete)
Why did you attend the clinic?
For written information
For advice from health professionals
Make appointment for someone else
Other (please explain)
How long were you in the clinic?
Did you get what you needed from your
visit?
How satisfied are you with your visit to the
clinic today?
Would you recommend the clinic to others?
Asian or Asian BritishBangladeshi
Black or Black British-African
Any Other




Less than 5 minutes
5-10 minutes
10-15 minutes
15-30 minutes
Longer than 30 minutes
Yes
Partly
No (if you said no, please explain why)








Very satisfied
Satisfied
Could’ve been better
Not satisfied at all
Yes
Not sure
No (if you said no, please explain why)







A few questions about you. Are you…
Male
(please tick)
Female
White British
White Irish
Mixed -white & Black
Caribbean
Mixed Other






Mixed- White & Black
African
Asian or Asian BritishIndian
Asian or Asian British-Other
Black or Black British-Other


White Other
Mixed-White & Asian
Asian or Asian BritishPakistani
Black or Black BritishCaribbean
Chinese
Do not wish to disclose
What language do you speak at home?
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Newham Prostate Cancer Walk-in clinic
Interview Schedule for clinic attendees
The Newham Prostate Cancer walk-in clinic is being evaluated in terms of its feasibility,
acceptability, fitness for purpose, unintended consequences and perceived sustainability.
An important aspect of the evaluation involves examining views of men that have
attended the clinic. These views are being attained by conducting a structured face to face
interview. The aims of this aspect of the evaluation are to:
Examine perceptions of the service and how men knew of it
Examine knowledge and perceptions of prostate cancer
Explore barriers to using the service
Discuss if/how the service matched up to expectation
Purpose
The purpose of this interview is to explore your views on, and satisfaction with, the
Newham Prostate Cancer Walk-in clinic.
1. How did you know about the prostate clinic?
2. What did you know about prostate cancer before you attended the clinic? What did
you know about tests to detect it? What did you know about its treatment?
3. Have you known of other men that have had prostate cancer?
4. Why did you attend the clinic?
5. How long did you know about the clinic’s existence before you went to it?
6. What were your thoughts about the clinic before you visited?
7. How easy was it to find the clinic?
8. How did you feel on entering the building?
9. What did you think when you entered the hall and saw the layout of the clinic?
10. How were you greeted? What happened next?
11. How was the level of privacy when you were having your consultation /tests?
12. Who did you expect to see at the clinic, a doctor or a nurse? Did it matter to you
whether you saw a nurse or a doctor?
13. How much did it matter whether the person you saw was a man or woman?
14. What tests did you have done?
15. What were you told about the PSA test?
16. Men have different views tests for prostate cancer- how did you feel about having
them done?
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17. How did you find the tests?
18. How much do men talk about prostate cancer or tests to use to detect it?
19. How about women- have you heard women mentioning prostate cancer?
14. What happened after you left the clinic?
15. How smooth was this process?
16. If tests positive… What has happened since?
17. If tests negative… What are your views about having checkups in the future?
18. Have you told anyone else about having attended the clinic?
19. How useful would it be if the clinic had internet access and men were able to be
shown information about men’s health and prostate cancer online?
20. Is there anything else you would like to add about your experience of the clinic?
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Newham Prostate Cancer Walk-in clinic
Interview Schedule for stakeholders
The Newham Prostate Cancer walk-in clinic is being evaluated in terms of its feasibility,
acceptability, fitness for purpose, unintended consequences and perceived sustainability.
An important aspect of the evaluation involves examining stakeholder’s views of the
clinic. These views are being attained by conducting a structured telephone interview.
The aims of this aspect of the evaluation are to:
Examine perceptions of the service
Examine what lessons have been learnt in setting up the clinic
Examine the sustainability of the clinic
Examine perceived outcomes including unanticipated or negative outcomes
Discuss the future of the clinic
Purpose
The purpose of this telephone interview is to explore your views on, and satisfaction
with, the Newham Prostate Cancer Walk-in clinic.
Questions
1. How many stakeholder groups have been involved in the set up of the clinic?
2. How do you think collaboration with other stakeholder groups has been- what have
been the advantages? Disadvantages?
3. From your perspective, what have been the motivations of the stakeholder groups
involved in setting up the clinic?
4. Please describe your involvement in the set up of the Newham clinic.
5. How involved were you with its development? From which point?
6. Were there challenges involved with setting up the clinic?
7. What factors affected the process of setting up the clinic?
8. Have there been procurement issues with regards to setting up the clinic?
9. Have there been workforce related issues in setting up the clinic?
10. What expectations did you have of the clinic?
11. To what extent have these expectations been met?
12. To what extent did you to perceive the clinic as different from other services or
offering different patient benefits?
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13. What challenges have been involved with the day-to-day operation of the clinic?
14. What have been the clinic’s successes to date?
15. What unintended or negative consequences have arisen from introduction of the
clinic?
16. Are there any fundamental changes you would like implemented to improve the
service?
17. What are your opinions regarding advertising and promotion of the clinic?
18. What are you opinions on the physical environment of the clinic? What do you think
about it’s accommodation within the African Caribbean resource centre?
19. What are your opinions regarding the process for PSA testing?
20. Would you like to see the clinic continue beyond the pilot?
21. What will be needed in future to enable the success and sustained provision of the
clinic?
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