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Evaluation of the Health and Social Care Professionals Programme – Interim report Prostate Cancer UK

July 2014

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Evaluation of the Health and Social Care Professionals Programme – Interim report Prostate Cancer UK

Report submitted by ICF Consulting Services July 2014

ICF Consulting Services Limited Michael Lawrie Watling House 33 Cannon Street London EC4M 5SB

T +44 (0)20 3096 4830 F +44 (0)20 3368 6960

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Document Title Evaluation of the Health and Social Care Professionals Programme – Interim report

Job number 9677

Prepared by Fraser Battye, Michael Lawrie, Holly Krelle, Nahid Ahmad, Lucy Loveless

Checked by Fraser Battye

Date 31 July 2014

This report is the copyright of Prostate Cancer UK and has been prepared by ICF Consulting Services

Ltd under contract to Prostate Cancer UK. The contents of this report may not be reproduced in whole

or in part, nor passed to any other organisation or person without the specific prior written permission

of Prostate Cancer UK.

ICF has used reasonable skill and care in checking the accuracy and completeness of information

supplied by the client and/or third parties in the course of this project. ICF is however unable to

warrant either the accuracy or completeness of client and/or third party information nor that it is fit for

any purpose. ICF does not accept responsibility for any legal, commercial or other consequences that

may arise directly or indirectly as a result of the use by ICF of inaccurate or incomplete client and/or

third party information in the course of this project or its inclusion in project outcomes.

Contents

Executive summary ............................................................................................................ i Summary of the research ..........................................................................................................................i Main findings .............................................................................................................................................i Lessons learned ...................................................................................................................................... iii Recommendations ................................................................................................................................... iv

1 Introduction .........................................................................................................1 1.1 Aims and objectives of the study ............................................................................................. 1 1.2 Method overview ...................................................................................................................... 1 1.3 This report ................................................................................................................................ 2

2 Description of the HSCP programme .....................................................................4 2.1 Goals and operation of the programme ................................................................................... 4 2.2 Bids received and projects funded ........................................................................................... 5 2.3 Analysis of funded projects .................................................................................................... 10

3 NHS Fife ............................................................................................................. 15 3.1 Update since the last visit ...................................................................................................... 15 3.2 Implementation ....................................................................................................................... 15 3.3 Outcomes and impacts .......................................................................................................... 16 3.4 Sustainability .......................................................................................................................... 18 3.5 Concluding points ................................................................................................................... 18

4 St Michael’s Hospice ........................................................................................... 19 4.1 Update since the last visit ...................................................................................................... 19 4.2 Implementation ....................................................................................................................... 19 4.3 Outcomes and impacts .......................................................................................................... 20 4.4 Sustainability .......................................................................................................................... 22 4.5 Concluding points ................................................................................................................... 23

5 Leeds Teaching Hospitals NHS Trust .................................................................... 24 5.1 Update since the last visit ...................................................................................................... 24 5.2 Implementation ....................................................................................................................... 25 5.3 Outcomes and impacts .......................................................................................................... 26 5.4 Sustainability .......................................................................................................................... 27 5.5 Concluding points ................................................................................................................... 27

6 Royal United Hospital Bath ................................................................................. 28 6.1 Update since the last visit ...................................................................................................... 28 6.2 Implementation ....................................................................................................................... 28 6.3 Outcomes and impacts .......................................................................................................... 30 6.4 Sustainability .......................................................................................................................... 31 6.5 Concluding points ................................................................................................................... 31

7 Western Sussex Hospitals NHS Trust ................................................................... 33 7.1 Update since the last visit ...................................................................................................... 33 7.2 Implementation ....................................................................................................................... 34 7.3 Outcomes and impacts .......................................................................................................... 35 7.4 Sustainability .......................................................................................................................... 35 7.5 Concluding points ................................................................................................................... 36

8 North Bristol NHS Trust ....................................................................................... 37 8.1 Update since last visit ............................................................................................................ 37 8.2 Implementation ....................................................................................................................... 37 8.3 Outcomes and Impacts .......................................................................................................... 39 8.4 Sustainability .......................................................................................................................... 40 8.5 Concluding points ................................................................................................................... 41

9 Analysis of annual returns .................................................................................. 42 9.1 Inputs...................................................................................................................................... 42 9.2 Project outputs ....................................................................................................................... 45 9.3 Outcomes reported to date .................................................................................................... 48

10 Lessons learned .................................................................................................. 50

11 Recommendations .............................................................................................. 53 11.1 Recommendations relating to the HSCP programme ............................................................ 53 11.2 Recommendations relating to future programming ................................................................ 54

Annex 1 Annual reporting form completed by projects . Error! Bookmark not defined.

Annex 2 Summary table of the programme ................... Error! Bookmark not defined.

Annex 3 Summary of bids received ............................... Error! Bookmark not defined.

Annex 4 Summary table of projects’ rationales, activities and outcomesError! Bookmark not defined.

Annex 5 Project evaluation status ................................. Error! Bookmark not defined.

Annex 6 Project-specific output data ............................ Error! Bookmark not defined.

Annex 7 Project-specific outcome data ......................... Error! Bookmark not defined.

Annex 8 Case studies of beneficiaries ............................ Error! Bookmark not defined.

Annex 9 How the programme is addressing the Movember statementsError! Bookmark not defined.

i

Executive summary

Summary of the research

This is the interim report for the Evaluation of the Health and Social Care Professionals (HSCP)

programme. ICF International has been commissioned to provide Prostate Cancer UK with monitoring

and evaluation services to support this programme. The aims are to gather evidence of the outcomes

and impacts of the programme as a whole, and its constituent projects; provide objective feedback

through ongoing process evaluation in order to improve the management and implementation of the

programme; and, to work with each project to support their own monitoring and evaluation and share

learning across the projects.

Prostate Cancer UK established a set of specific requirements for the work which were for ICF to:

work with each of the projects to agree tailored monitoring and evaluation plans; provide ongoing

support to projects on monitoring and evaluation; gather and analyse monitoring information from the

projects which are submitted on a monthly basis; provide in-depth evaluation reports for the

programme; and support programme management with learning and dissemination.

This report is the second substantial evaluative output from the study. It brings together research

findings from several sources, including the monitoring and evaluation plans that projects have been

supported to develop; an ongoing programme of contact with projects as part of the monitoring and

evaluation support; case study visits to six projects carrying out a range of different activity; and

projects’ annual monitoring returns to the programme which provide and update on progress, and

views on the processes followed. The report sets out the strategic context for, and goals of the

programme; a description of the programme so far, including rationales that informed projects; the

activities they are carrying out; and the sorts of outcomes they hope to achieve; six project case

studies; analysis of projects’ monitoring returns; and a set of lessons learned and recommendations

for this programme, and Prostate Cancer UK.

Main findings

Programme intention

Prostate cancer services in the UK face a number of challenges. Analysis of these challenges informs

Prostate Cancer UK’s wider work in service improvement, and the intention and design of the HSCP

programme. The programme, which is funded by the Movember Foundation and Royal Mail, is one of

Prostate Cancer UK’s most significant investments to date in service improvement.

Prostate Cancer UK has funded a programme manager and project officer to manage the HSCP

programme. In addition, projects are provided with evaluation support, support with project

management, training and information on prostate cancer which can be distributed to patients.

Opportunities for funding have been opened to the NHS and other healthcare organisations in the UK.

It was specified that the programme would fund health and social care professional roles which: result

in better integration of treatment between primary and secondary care; support GP practices and

within community settings in providing care for men with prostate cancer; and, support the National

Cancer Survivorship Initiative in the care and support of men living with prostate cancer. As the

programme has evolved these criteria have remained although, in general, bidding requirements have

become more rigorous (including the introduction of a second stage) and the sorts of projects that

would be funded has become more tightly specified, in order to fill gaps from earlier rounds of funding.

A range of different organisation types have bid for funding. A total of 68 bids have been received and

just over half (56%, 68) have been funded. The projects are primarily based in the acute sector

(three-fifths of projects). Around one in six (16%) are being led by Scottish and Welsh Health Boards.

The four rounds of funding so far have attracted bids from all parts of the UK except Northern Ireland.

Nearly half (47%) of all bids received come from organisations based in London and the eastern and

south eastern regions of England. This broadly matches with the proportion of successful projects

from these regions (44%). Just one successful project has been awarded in the West Midlands and

there are none in the East Midlands.

ii

The rationales, main activities and desired outcomes from successful projects (from phases 1 and 2 of

commissioning) have been analysed. This found that:

■ Projects typically aim to address multiple issues in their local area. Underpinning all projects is the

changing demographic profile of the area which is contributing to a growing incidence of prostate

cancer.

■ Other common challenges that projects seek to address through their activities include alleviating

high pressure on acute services in their areas, by shifting more service provision to primary care

settings, and developing skills of primary care staff to deliver more care, and addressing poor

experience of follow-up care.

■ Across the programme there are three main activities being used address these issues. These

are: improving or developing a new pathway of care; improving or developing a new clinic or

service; and, delivery of education or information (either to patients or healthcare professionals).

■ Finally, projects aim to achieve outcomes in three broad areas: improvements in patient’s

experience, knowledge or skills, clinical outcomes, and ability to self-manage their condition;

improvements to clinicians’ knowledge or skills; and, service improvements in terms of greater

reach or improved access; greater quality or consistency of services; a better developed

understanding of ‘what works’; and, efficiencies or cost savings.

Inputs and outputs

Prostate Cancer UK funding – which for phases 1, 2 and 2.5 stands at around £2.3 million as of July

2014 – is the largest single input across the programme. In addition, the projects themselves report

that they have contributed over £6,600 in cash contributions and nearly £80,000 in in-kind

contributions which is primarily made up of staff time. Additional contributions therefore total £85,547,

or around 4% of the Prostate Cancer UK support.

To date, 19 of the 22 phase 1 and 2 can be considered to be in ‘full delivery’ (i.e. they are supporting

patients and / or their families). In total these projects have supported 3,192 beneficiaries, around

97% of whom are males. Around three-quarters of the beneficiaries are between 60 and 79 and four-

fifths are white (although data on ethnicity is not available for around one-tenth of beneficiaries).

Support to these beneficiaries is primarily delivered either through remote support / monitoring or one-

to-one in a face-to-face context. The content or focus of the support across the programme has been

mixed. The two largest categories – education and psychological support – which make up around half

of the support delivered, are also the two most broadly defined.

In addition to data on the patients and families supported, the following outputs have been produced to

date across the programme. For healthcare professionals, projects have reported delivering 13

meetings, workshops or training sessions (including 3 sessions on the holistic needs assessment tool

– HNA) and 1 training session has been delivered to a patient volunteer tutor. A further 10 to 20 health

professionals are reported to have been engaged in training by another project. For services, several

projects have reported that they have supported men and carers to access new services. This

includes undertaking ten HNAs with men, assessing the rehab needs of six men at the point of

diagnosis and providing appropriate information, signposting / referring six men on to additional

services, providing access to a named prostate cancer specialist nurse for three men with complex

prostate cancer, and enabling 41 men to have access to a key worker in primary and secondary care.

Outcomes

On a quarterly basis, projects are required to submit outcome data on a set of indicators agreed in

their monitoring and evaluation plans. At present there are useable outcome data available from seven

projects, reflecting the challenges that many projects have faced in implementing their planned

activities. Of the remaining projects, a small number are at the early stages of collecting outcome data

and so the data they have provided are only indicative at this stage. The outcome data reported to

date includes over 1,000 patients reporting satisfaction with the care they have received (98% of these

men have been supported by two projects which are relatively advanced in their planned activities).

There is evidence from another project that the men they are supporting with issues with ED or

significant bladder and bowel symptoms post treatment have been supported and referred on to

iii

appropriate advice. Two other projects report that the men they have supported have reported feeling

more able to self-manage or feel more informed about their treatment.

Two projects so far have reported data on improvements to the skills and knowledge of healthcare

professionals. This includes 19 health professionals who have improved knowledge as a result of their

project. Finally there are data available from two projects on outcomes related to service

improvements. This includes a project which reports that the introduction of a nurse-led clinic has

reduced average waiting times between biopsy and histology by 41% (from 22 days down to 13 days)

and between biopsy and consultant-led follow-up appointment by 13% (from 47 days to 41 days).

Lessons learned

The HSCP programme is at an important stage in its development. Its 26 projects are at varying

stages of maturity. Several phase 1 and 2 projects are approaching their final six months and so

plans for sustainability and outcome evaluation are key concerns. The majority of the programme,

though, is at quite an early stage of delivery (or at the commissioning stage in the case of phase 3

projects) and so the lessons learned to date can influence their delivery and potential success. These

are summarised below:

■ Commissioning processes have not, so far, encouraged projects to ‘hit the ground running.

Projects, in general, have reported that commissioning processes have been quite light touch. As

a result, in several cases, the process of commissioning has not prepared projects to begin

scoping work and implementation immediately after being awarded funding. Processes have

improved through each round of funding.

■ Implementation has been variable and recruitment is the central challenge. Up to half of projects

have faced delays relating, primarily, to the recruitment of post-holders. The two main reasons are

that the short-term and temporary nature of many of the projects discourage potential applicants,

and there is potentially a low supply of people with the correct skill and experience mix for these

types of roles.

■ There are other common challenges facing projects. The two key issues identified have been the

lack of resources available for project management particularly for larger and more complex

projects while other projects reported that they have failed to engage with the expected number of

patients or clinicians at this stage.

■ In general, projects comply with the monitoring system. Most projects have robust systems for

collecting the basic monitoring data required by the programme therefore the substance of the

monitoring requirements seems to be appropriate. However the timing of the monitoring returns is

a cause of dissatisfaction with some projects noting that completing the returns on a monthly basis

is time consuming, and there is an opportunity cost to doing so.

■ Projects’ self-evaluations are variable at this stage. Projects recognise the crucial role of

evaluation in ensuring their activities are sustained, and the approach of supported self-

evaluations is supported. However, most projects have not yet started providing outcome data.

This is primarily because of the delays that many projects have faced, but also the fact that

outcome data often has to be collected over several months.

■ Projects’ plans for sustainability require attention. The more mature projects are starting to

consider approaches that they will take to achieving sustainability. But several challenges have

been identified including the fact that many existing services are under threat at present and so

funding for enhanced activities such as those being carried out by projects is even harder to

access.

■ There are opportunities to develop a greater ‘sense of programme’. Projects have reported that

they have gained valuable support from Prostate Cancer UK (particularly the educational

opportunities and marketing materials) however a few have noted that they would appreciate a

closer relationship. There is also an opportunity for greater sharing of information and experience

between projects.

iv

Recommendations

There are nine recommendations which relate to the HSCP programme, and six to future Prostate

Cancer UK programmes.

Recommendations relating to the current programme

Recommendation: Prostate Cancer UK should ask projects to re-validate / re-submit their PIP after

their scoping phase is completed.

Recommendation: The programme management team should establish a programme of catch-up

calls with projects (e.g. calling each project once per quarter); the time taken to do this should be built

into the resource needs of the programme.

Recommendation: Prostate Cancer UK should bring forward the telephone call to projects about their

plans for sustainability from six months before their completion to nine months before completion.

Programme management should ask projects to identify the steps they have taken / plan to take to

achieve the sustainability, as well as the key barrier(s) to doing so, allowing steps to address this to be

taken at an early stage. Prostate Cancer UK should also be explicit about expectations on

sustainability.

Recommendation: The programme management team should circulate a short quarterly newsletter

to all projects. This should contain an update on the programme (including an aggregation of the sorts

of activities projects are carrying out, the types of challenges they are addressing, and an update on

progress at the programme level). Links to potential support should also be provided, for example,

educational resources and marketing opportunities. Contact details for post-holders and project leads

should also be shared.

Recommendation: As the programme matures, and projects start to generate more tools, resources

and findings about what is working for them, Prostate Cancer UK (supported by ICF) should make

efforts to gather, organise and make available this information to the funded projects.

Recommendation: The programme management team should re-emphasise to projects the

importance of / requirement for evaluation and in particular, data on outcomes achieved.

Recommendation: ICF should contact all projects prior to the next quarterly report to ascertain what

data projects will be submitting, and when outcome data are likely to become available. Support to

projects should also be based on the evaluation risk assessment in Annex 5.

Recommendation: Projects should more proactively anticipate potential risks to delivery, and do so

from the bidding stage. Plans to address potential challenges should be developed before they occur

and be written up in the project’s risk register (which is part of the quarterly monitoring reports).

Recommendation: Based on the in-depth case study research and review of the monitoring forms for

all projects, it is clear that projects should start to consider strategies for sustainability and develop

robust data collection practices and commitment to collecting evaluative information at an early stage

(scoping phase).

Recommendations relating to future programmes

Recommendation: In future programming and negotiations with funders, Prostate Cancer UK should

request that posts are funded for up to three years. The first six months of any funded projects should

be earmarked as a discrete phase of scoping work (which may / may not be fully used); full delivery

should not be expected in this period (although key outputs of this work should be reported). This will

allow projects to focus on developing their delivery models (conducting research to inform design),

and recruiting post-holders.

Recommendation: In future programming and negotiations with funders, Prostate Cancer UK should

emphasise the value of support for non-clinical staff, such as project managers and evaluation

support, by linking this resource input with the outcomes it is likely to contribute to. Prostate Cancer

UK should also highlight the consequences of failing to fund project management using examples

from funded projects.

v

Recommendation: In future programming, Prostate Cancer UK should consider providing a hierarchy

of support for projects which are larger or more complex in nature. This could encompass direct

funding for project management for these projects. This may also imply funding fewer, larger projects

– thereby allowing programme managers to develop more ‘hands on’ relationships with delivery

organisations.

Recommendation: Future programmes should be more clearly ‘themed’ from the outset. Themes

should be linked to broader policy / campaigning work, e.g. tailoring provision for specific ethnic

groups. Programme activity can thereby act as an exemplification / set of practical solutions to

identified problems.

Recommendation: In future programmes, Prostate Cancer UK should consider whether output data

are required on a monthly basis. If this requirement is driven by external stakeholders, Prostate

Cancer UK should consider advising these stakeholders that there is a substantial resource

implication – and consequent opportunity cost – to collecting this information. Quarterly reports on

project outputs are sufficient for most programmes of this type. The expectation of quarterly outcome

data could also be reduced to an annual or twice yearly basis.

Recommendation: In future programmes, Prostate Cancer UK should avoid, if at all possible,

changing monitoring requirements mid-way through the programme delivery. A range of stakeholders

should contribute to the design of the monitoring system ensuring that they aware of what is being

collected from the outset.

1

1 Introduction

This is the interim report for the Evaluation of the Health and Social Care Professionals

(HSCP) programme.

1.1 Aims and objectives of the study

ICF International has been commissioned to provide Prostate Cancer UK with monitoring

and evaluation services to support the HSCP programme. The overall aims of this

assignment are to:

■ Gather an evidence base on the outcomes and impact of the programme as a whole,

and its constituent projects.

■ Provide objective feedback through ongoing process evaluation, in order to improve the

management and implementation of the programme.

■ Work with each project to support their own monitoring and evaluation, and share

learning across the projects.

Prostate Cancer UK established a set of specific requirements for the work. These were to:

■ Negotiate, agree and oversee evaluation plans with each project;

■ Identify projects’ support needs and provide ongoing support;

■ Gather and analyse monitoring information from projects;

■ Provide in-depth evaluation reports for the programme; and,

■ Support programme management with learning and dissemination.

This report is the second substantial evaluative output from the study following on from a

baseline report submitted in July 2013. It relates primarily to the fourth of the above

requirements: providing an evaluative assessment of the programme overall.

1.2 Method overview

Inception

This study began with a scoping phase of research in order to understand the background to

prostate cancer and key service delivery challenges, and the experience of men who have

the disease. A detailed introduction to Prostate Cancer UK and its strategic goals, and the

HSCP programme was also provided.

Self-evaluation support

Following this scoping phase, the research team has undertaken a programme of research

with, and is providing evaluation support to, the funded projects. All phase 1 and 2 projects1

have received an initial visit from an ICF researcher. Interviews undertaken on these visits

informed tailored monitoring and evaluation plans for each project (which were agreed over

follow-up telephone calls and emails). These plans inform a monthly project-specific

monitoring form which keep Prostate Cancer UK up to date with projects’ progress towards

their desired outputs and outcomes. The process is illustrated in Figure 1.1

.

1 The programme’s ‘phases’ are described in section 2 of the report.

2

Figure 1.1 Summary of the monitoring and evaluation process

All phase 1 and 2 projects were also contacted in February 2014 to support the change to a

slightly altered monitoring system. Phase 1 projects had an additional catch-up call in late

2013 (before the phase 2 projects were funded). Alongside their tailored monitoring and

evaluation plan, all projects are issued with guidance on evaluation, and tailored monitoring

forms.

Project visits

Six projects, selected to provide coverage of programme activities, as well as illustrating

good progress to date, were visited in June/July 2014 to inform an in-depth case study.

These case study visits involved interviews with project managers, post-holders, wider

stakeholders (such as other clinicians or commissioners involved in the project), and some of

the patients and their families who have benefited from the projects.

Programme monitoring

As well as support for self-evaluation ICF has managed a monitoring system. On a monthly

basis, each project submits a basic update via email (detailing activities undertaken over the

last month) and data on the number of people supported key demographic data, and the

type of support provided. These monthly reports are synthesised to provide Prostate Cancer

UK’s programme team with information to manage risks as well as update funders and

stakeholders on progress.

On a quarterly and annual basis, projects are asked to provide additional information which

includes data on the outputs and outcomes of their project, as agreed in their monitoring and

evaluation plan.

1.3 This report

This report brings together findings from each of these sources. It provides:

■ A summary of the strategic goals of the programme, data on number of projects and type

of organisations funded, data on the number of unsuccessful bids and types of

organisations that were unsuccessful, and a description of the bidding process (Chapter

2)2.

■ A description of the programme so far including the rationales that informed the projects,

the activities they are carrying out, and the sorts of outcomes projects seek to achieve

(Chapter 2).

2 This report is primarily based on phase 1 and 2 projects, however where information is available and relevant

(such as in relation to bidding organisations) phase 2.5 and phase 3 projects are included.

3

■ Six project case studies, examining the implementation, outcomes and lessons learnt in

detail (chapters 3, 4, 5, 6, 7, 8).

■ Analysis of projects annual returns (chapter 9).

■ A set of lessons learned by projects, and recommendations for the programme

management and Prostate Cancer UK (chapters 10 and 11).

4

2 Description of the HSCP programme

This chapter outlines the strategic goals of the HSCP programme, the arrangements made

for its management, the commissioning processes used, and the projects funded (including

the sorts of organisations hosting projects, the challenges each aims to address, the

activities they are using to do so, and their intended outcomes).

2.1 Goals and operation of the programme

Prostate cancer services in the UK face multiple challenges. Analysis of these challenges –

and means of addressing them - informs Prostate Cancer UK’s wider work in service

improvement, and this programme in particular. Prostate Cancer UK’s work in relation to

service improvement is also shaped by the ‘MANifesto’ which sets out Prostate Cancer UK’s

understanding of the main actions required to achieve improve outcomes for men with

prostate cancer.

The HSCP programme is one of Prostate Cancer UK’s flagship activities, and in terms of the

investment in service improvement, it is one of the most significant parts of the organisation’s

work. It is also a priority for the organisation as it represents one of its largest investment to

date in relation to service improvement – the total value of agreed contracts stands at £2.3

million, although this is likely to grow to more than £3 million once the final selection of phase

3 projects has been agreed. The two main funders of the programme are the Movember

Foundation and the Royal Mail.

2.1.1 Programme management

Prostate Cancer UK has funded a programme manager and project officer to manage the

HSCP programme. Their role includes making commissioning decisions alongside a wider

panel of colleagues from across the charity and external experts, managing programme

finances and risks to delivery, and reporting to key stakeholders inside the charity and to

funders about progress.

In addition to this evaluation support provided by the independent contractor (ICF

International), Prostate Cancer UK also commits to providing projects with:

■ Support to develop a project implementation plan;

■ Access to specialist study days and MSc modules through the Prostate Cancer UK

education programme;

■ Workshops to share learning with other funded areas across the UK;

■ An equipment fund of up to £1,000 per funded post, if required;

■ Free expert health information on prostate cancer care that can be distributed to

patients.

2.1.2 Commissioning processes

The opportunities for funding under the programme have been opened to the NHS and other

healthcare organisations in the UK. Advertisements were put up on the Prostate Cancer UK

website as well as being circulated to contacts in the sector. The first two rounds of

commissioning were open to health and social care professionals - including nurses and

allied health professionals. Three types of role were originally specified. These were roles

that:

■ result in better integration of treatment between primary and secondary care;

■ support GP practices and within the community setting in providing care for men with

prostate cancer;

5

■ support the National Cancer Survivorship Initiative in the care and support of men living

with prostate cancer to ensure they get the care and support they need to lead as

healthy and active life as possible.

The third round of commissioning, which has recently been completed, had a more specific

focus on nursing roles.

2.1.2.1 Bidding requirements

The bidding requirements have evolved as the programme has developed in three main

ways:

1. A second step was added to the commissioning process for the second phase of

funding. Prostate Cancer UK required that, after submitting an expression of interest

successfully, projects submit an implementation plan. This added layer of assessment

was a response to difficulties that many phase 1 and 2 projects reported in translating

their initial project ideas into implementation (see Baseline Report from this evaluation).

By requesting an implementation plan at an early stage, it is hoped that this problem will

be mitigated for phase 3 projects.

2. The evaluation of applications has become more rigorous and explicit. For the first

round of funding, bids were assessed against five areas: the quality of the project outline

and whether there was a clear programme of works; the capacity and track record of key

personnel and the organisation; the plans for sustainability; the degree to which key

stakeholders and partners had been engaged; and, the extent to which the project met

one of the criteria for the type of role that Prostate Cancer UK wished to fund. By the

third phase of funding, Prostate Cancer UK had introduced greater detail to the scoring

matrix, incorporating some of the points of learning from the project delivery. Additional

requirements were for greater information on:

– How applicants intended to be operational within six months of approval (with

projects failing at this stage if they did not demonstrate how they would achieve this);

– The area of support for men with prostate cancer that the projects would entail;

– The cost per patient supported;

– How long the project would take to begin seeing patients;

– How the project will link to the wider health economy;

– The nature of the need in the local area (both in terms of the deprivation faced, and

how the project will meet unmet need);

– The extent to which best practice from the project could be replicated in other

locations; and,

– How the project will support the transition of patients from secondary to community /

primary care.

3. The sort of projects that will be supported is now more tightly specified in order to

fill gaps from the previous two rounds. For example, in the third round of bidding,

Prostate Cancer UK specified that it would particularly welcome bids which were primary

care-led, or focused on men undergoing hormone therapy, or with erectile dysfunction

and continence issues.

Each of these changes reflects learning from the previous phases of the programme. The

approach has moved from a relatively light touch process, with an open call for bids, through

to a more specified and detailed approach.

2.2 Bids received and projects funded

This sub-section examines bids received and awards made under the process described

above.

6

2.2.1 Type and location of organisations funded

The programme has involved three main rounds of commissioning so far. An additional ‘sub-

round’ of funding was issued between rounds 2 and 3; this is called phase 2.5 of the

programme and consists of four projects. Phase 3 of the programme has just been

commissioned and consists of 12 projects to date (with the remaining funding to be allocated

by October 2014). Full analysis of project activities for phase 2.5 and 3 projects is not

included in this report as initial monitoring and evaluation plans have not been agreed in all

cases (and in the case of phase 3, visits have not yet taken place). Where information is

available on these projects (for example, the amount of funding they have been awarded,

and the types of organisations that have bid) these projects have been included in the

analysis.

Table 2.1, Figure 2.1 and Figure 2.2 provide a summary of the types of organisations that

have bid for / been awarded funding. Table 2.1 shows that a total of 68 bids have been

received across all rounds of funding. Just over half (56%, 38) of these bids were successful.

The successful projects have been split into three main phases of between 10 and 12 total

projects and a smaller phase (called phase 2.5) of four projects.

7

Table 2.1 Number of bids received and awarded, by phase3,

4, 5,

Phase No. of bids

Type of organisation Region Number of projects commissioned

6

Type of organisation Region

1 23 Acute – 14; Charitable –

4; HB – 1; CCG – 0

CHST – 1; CSU – 1;

Research – 1; SCN – 1

Lon – 6; East – 4; S. Cen – 4;

Y&H – 2; NE – 2; NW – 1; Scot

-1; SW- 1; WM – 0; SE Coast –

0; Wales – 1; EM - 1

10 Acute trust – 6; Charitable –

2; CSU – 1; Research

partnership – 1.

London – 4; NW -1; Scotland – 1;

South central -2; SW – 1; Y&H -1

2 25 Acute – 16; Charitable –

2; HB – 3; CCG – 2

CHST – 2

Lon – 4; East – 3; S. Cen – 2;

Y&H – 2; NW – 4; Scot -2; SW-

2; WM – 3; SE Coast – 2;

Wales – 1

12 Acute – 6; CCG – 1;

Charitable – 1; CHST – 1;

HB – 3

East -1; Scotland - 2; NW – 2; London

– 2; SW – 1; S. Cen – 2; Wales – 1;

SE Coast – 1

2.5 4 Acute – 3; HB – 1

Lon – 1; Y&H – 1; SE Coast –

1; Scot – 1

4 Acute – 3; HB – 1

Lon – 1; Y&H – 1; SE Coast – 1; Scot

– 1

3 16 Acute -12; CCG – 1;

Charitable – 1; HB – 2;

East – 2; Lon – 2; NE – 4; NW

– 1; Scot – 1; S. Cen – 1; SW –

1; Wales – 1; WM – 1; Y&H – 2

At least 12 Acute – 8; CCG – 1;

Charitable – 1; HB – 2

East – 1; Lon – 1; NE – 4; NW – 1;

Scot – 1; S. Cen – 1; SW – 1; Wales –

1; WM 1

Total 68 Acute – 45; Charitable

– 7; HB – 7; CCG – 3

CHST – 3; CSU – 1;

Research – 1; SCN – 1

Lon – 13; East – 9; S. Cen –

7; Y&H – 7; NE – 6; NW – 6;

Scot – 5; SW – 4; WM – 4; SE

Coast – 3; Wales – 3; EM – 1

38 (at a minimum) Acute – 23; HB – 6;

Charitable – 4; CCG – 2;

CSU – 1; Research

partnership – 1; CHST – 1

Lon – 8; Scot – 5; S. Cen – 5; NE –

4; NW – 4; SW – 3; East – 2; SE

Coast – 2; Wales – 2; Y&H – 2; WM

– 1

3 Phase 3 has been included here, although final commissioning decisions have not yet been taken. The projects included here are those which have had their funding

confirmed, or those projects from which Prostate Cancer UK has requested more information. 4 Acute = Acute Trust; Charitable = Charitable organisation; HB = Health Board; CCG = Clinical Commissioning Group; CHST = Community Health Services Trust = CHST;

CSU = Commissioning Support Unit; Research = Research Partnership; SCN = Strategic Clinical Network. 5 Lon=London; S. Cen = South central; Y&H = Yorkshire and Humber; NE = North East; NW = North West; Scot = Scotland; SW = South West; WM = West Midlands; SE

Coast = South East Coast; EM = East Midlands 6 Or more info requested – phase 3

8

Figure 2.1 shows that the HSCP programme is primarily based in the acute sector with

three-fifths of projects being delivered by teams based in hospitals. This is a slightly lower

proportion of projects than those who applied for funding, indicating that acute trusts have

slightly less successful than those from other non-acute organisations. Six projects (16%) of

projects are being delivered by Scottish and Welsh Health Boards. Bids from this category

of organisation represented only around 10% of the total received indicating that this type of

organisation has been relatively successful in gaining funding. Around one-in-ten projects

are being delivered by organisations from the charitable sector; this is the same proportion of

charitable organisations that bid for funding.

Figure 2.1 Type of organisations bidding and funded

9

Figure 2.2 illustrates the location of bidding and successful organisations. It shows that the

HSCP programme has attracted bids from all regions of the United Kingdom (former

Strategic Health Authority regions and UK nations), except for Northern Ireland. Nearly half

of all bids received (47%) came from organisations based in London, eastern or south

eastern regions. This broadly matched the proportion of successful projects, with 44% of the

awards being made to projects in these areas. Project teams from Scotland and Wales were

relatively successful in securing funding; of the eight bids received (12% of the total number

of bids) all but one was awarded. Just one successful project has been awarded in the West

Midlands, and there are none in the East Midlands.

Figure 2.2 Location of bidding and successful organisations

10

2.3 Analysis of funded projects

This sub-section presents an analysis of all phase 1 and 2 funded projects. It examines

organisation type, location, rationale for intervention, activities and outcomes. It therefore

draws on several sources, including project bids, monitoring and evaluation plans and

project visits.

2.3.1 Projects’ rationales

At the bidding stage, projects are required to articulate how the project will make a difference

to men and their families and how their intended activities will address unmet needs. Figure

2.3 presents a summary of this information, using a typology of the challenges that projects

have been established to address.

Projects are typically addressing multiple issues, requiring some judgement in establishing

and applying a typology. This is reflected in the graph as projects were allocated to more

than one category if it was clear that they had multiple rationales. For example, all projects

noted the changing demographics of their local area: more men living longer leads to a

higher incidence of prostate cancer (as a result of its ubiquity, this rationale has been omitted

from the graph). From this central challenge, projects then articulated different demands

being placed on local services.

The Figure shows that, most commonly, project teams reported that their intervention(s)

aimed to alleviate pressure on resources in acute settings by shifting more service provision

to primary care settings. Linked to this, three projects specifically aim to address a lack of

knowledge of prostate cancer in primary care settings in order to enable primary care

providers to play a larger role in delivering services.

At least two of the rationales set out in Figure 2.3 are focused mainly on patients’ experience

of services: six projects are responding to men in their area reporting poor experiences of

follow-up care, while four projects aim to address a perceived lack of integration between

primary and secondary care.

Figure 2.3 Typology of projects’ rationales

11

2.3.2 Project activities

At the bidding stage, and during preparation of their project implementation plans, projects

set out the main activities they intend to carry out in order to achieve their project aims.

Figure 2.4 presents an analysis of planned activities, again using a typology devised by the

evaluation team. Most projects involve multiple activities; where this is the case, each has

been included in the analysis.

The results show that projects intend to carry out activities in three main areas (as illustrated

in Figure 2.4 with the four different shades). These are:

■ Improving or developing a new pathway of care;

■ Improving or developing a new clinic or service (viewed as one element of the care

pathway);

■ Delivery of education or information, either to patients or other healthcare professionals.

In addition 13 projects were identified as having a substantial research component (over and

above the monitoring and evaluation requirements) however this was a secondary activity for

these projects. Improving an existing, or establishing a new, service is the most common

type of activity. Provision of education - either to patients, or more commonly to other

healthcare professionals (primarily in the primary care sector) – is also common.

Figure 2.4 Summary of project activities

12

2.3.3 Project outcomes

In the inception phase of their work, projects were asked to set out the outcomes they intend

to achieve. Analysis of these outcomes is set out in Figure 2.5.

Outcomes that projects aim to achieve are grouped into three high-level categories (as

illustrated in the diagram with the four different shades): whether the desired outcome relates

to patients, clinicians or services. In practice, project teams articulate multiple types of

outcome, which is often a result of the varied nature of the activities they are carrying out.

Similarly, the desired outcomes of a project were articulated as part of a causal chain (for

example, improving clinicians’ knowledge leads to a better patient experience), which meant

that several different types of outcome – short and medium term - were identified. A single

project can therefore account for multiple outcome types.

Figure 2.5 shows that outcomes for patients are the most common. The 22 projects included

in this analysis aim to achieve 48 outcomes in total outlined in this area. Within this,

‘improved patient experience’ is the main area where projects are seeking improvements.

15 of the 22 projects report setting out to improve clinicians’ knowledge.

A variety of service improvement outcomes are noted by projects, with 39 desired outcomes

noted in total. The most prevalent among these, is that projects aim to develop an improved

understanding of what works in their service (which can then be used to inform service

improvement). Ten projects describe achieving efficiencies or cost savings as an explicit

goal of their project.

Figure 2.5 Projects’ intended outcomes

Figure 2.6, Figure 2.7 and Figure 2.8 provide more detail of the sorts of outcomes projects

aim to achieve, elaborating on each of the three broad areas noted above.

Figure 2.6 sets out in more detail the patient-focussed outcomes that projects aim to achieve

– alongside illustrative project examples. As noted above, there is a clear focus on

improving patient experience, and in particular, ensuring that patients express satisfaction

13

with any new service that is offered (in some cases relative to an existing service). Several

projects within this group are specifically aiming to improve experience of follow-up care in

the community.

Several projects also aim to increase patient’s knowledge of prostate cancer, either as a

means of supporting decisions to be taken about treatment or ongoing care, or to improve

men’s ability to self-manage. Related indicators include a reduction in the anxiety many

patients feel as part of their treatment or ongoing condition management.

Finally, projects articulated the clinical benefit they wish to generate through their activities.

This includes indicators such as improved self-reported quality of life or wellbeing, and

improved clinical indicators following prostatectomies.

Figure 2.6 Patient outcomes

Figure 2.7 sets out in more detail, the outcomes relating to healthcare professionals. These

are quite clear as projects across the programme are seeking to develop the knowledge,

skills and confidence of staff in their local area. These staff are often in generalist clinical

posts, and the training aims to support them to deliver more and improved care to men with

prostate cancer or to underpin (or come in advance of) a change in the service delivery

model.

14

Figure 2.7 Healthcare professional outcomes

Figure 2.8 provides more detail on outcomes relating to services. This is perhaps the

broadest category. It includes resource savings, for example projects which seek to engage

men in a less resource intensive follow-up care pathway (perhaps using nurse / GP-led

support as opposed to consultant-led). Several projects also seek to improve the

accessibility of services, for example, through reducing waiting times (and helping

organisations to meet national targets in so doing), or through the use of nurse-led services

which are often seen as more accessible than consultant-led support. Several projects also

seek to address gaps either in their services or across the geography of the local area (by

bringing services up to a consistent level).

Figure 2.8 Service outcomes

15

3 NHS Fife

Funder and total funding: Royal Mail, £38,199

Post(s): Band 6 Nurse 1.0 FTE

Phase: 2

Start date: 4/11/2013

End date: Nov 2014

Duration: 1 year

This project has received funding for a band 6 nursing post for one year. The project’s

primary aim is to improve follow-up support for men in Fife with prostate cancer. Around 250

men are diagnosed with prostate cancer each year in Fife; a further 600 men (approximately)

are on a remote surveillance postal follow-up.

The project aims to achieve its goals by setting up new nurse-led provision in addition to

current models of care, being delivered at key points in the care pathway and offering

ongoing telephone support throughout men’s treatment. A longer term goal of the post is to

support the clinical lead’s ambition of implementing a ‘shared care model’ in Fife, which

would involve primary care providers agreeing to provide more support in helping men with

prostate cancer manage their condition.

3.1 Update since the last visit

Since the first visit, the project team has put into action the ideas that they had initially

proposed in the bid to Prostate Cancer UK. There have been no substantial changes to

these high-level goals. A more detailed delivery model has been developed involving three

main activities, led by the funded post-holder:

■ The introduction of a nurse-led clinic before men’s biopsies. This aims to prepare men

for the procedure by providing support in the build-up to the biopsy. It is also seen as a

good way of starting a relationship with the patient. At this point the post-holder also

makes a follow-up appointment with the man and, if relevant, his family for the delivery of

the results.

■ The introduction of a nurse-led clinic to deliver the diagnosis. At this pre-arranged

appointment, the post-holder is able to spend time going through the diagnosis and

some of the options around treatment.

■ From the first meeting with the patient, the post-holder becomes the named contact for

coordinating their care, and answering any questions they have. In addition, the post-

holder is the first point of contact for men with prostate cancer already on treatment or

follow-up pathways of care, who hear about the service and feel like they need the

support. This part of the project is primarily delivered over the telephone.

3.2 Implementation

Core project activities

The project has made better progress than either the clinical lead or the post-holder

expected at inception. So far, the project has supported over 700 people over the telephone

or face to face since April 2014. This total is made up of men who are supported from the

original biopsy (including those who are not diagnosed with prostate cancer) through to

treatment / active surveillance, as well as men on longer term management who have

become involved in the service through word of mouth or the post-holder’s marketing

activities. Most support is delivered face to face and typically involves the post-holder

providing information about services, different options for treatment, and the potential side

effects (although a lot of follow-up support is delivered over the telephone).

16

Factors suggested as explaining the high usage included:

■ Engaging with men at the point of biopsy and diagnosis meant the post-holder was

involved in the treatment pathway from an early stage. This means that over her time in

post, she has supported the majority of men referred to the urology service (including

those who are not diagnosed with prostate cancer).

■ The service and her support had been passed on by word of mouth. This indicates that

the intervention is making a difference to those who use it. It also highlights that the

project is reaching beyond men who are newly diagnosed to those who are on longer-

term follow-up care.

■ Supportive consultants were noted as being a key step in allowing nursing involvement

in pre-biopsy support and diagnosis.

Underpinning her work, the post-holder also suggested that during the period she has been

in post, the profile of prostate cancer has grown (partially attributed to Prostate Cancer UK’s

awareness raising work – and particularly the ‘Men United’ campaign). The post-holder

reported that more men are thought to be having a PSA test and the urology department is

on course to do more biopsies this year than last.

Shared care model

The post-holder has also been involved in activity to support the consultant urologist to

implement a shared care model for the management of men with prostate cancer in Fife.

The goal is to develop an agreement between secondary and primary care providers about

which aspects of managing men with prostate cancer that each should do. The aim is that

this agreement would establish that primary care providers take on more of the support for

long-term management (thereby reducing resource usage in primary care and potentially

improving experience for patients due to a reduced need to go to hospital).

The clinical lead for the project noted that this aspect of the project would be very ambitious

and tangible outcomes were unlikely to be achieved during its one year duration. The

original goal was for the post-holder to help to ‘do the ground work’ through, for example,

awareness raising among primary care staff, or a bottom-up process of increasing the

knowledge and self-management skills of patients who will then highlight this to their GPs.

As anticipated, the project team has found this work challenging. So far a business case for

developing the shared care model has been developed. The post-holder has also

undertaken awareness raising work with primary care clinical staff and educators (including

the Macmillan palliative care service, and the GP and community practice nurse educator)

outlining the work she is carrying out and the ongoing needs of men with prostate cancer.

The main challenge – which remains unresolved – is to develop a model for the new

financial agreement between primary and secondary care that will be required.

3.3 Outcomes and impacts

The activities of the post-holder in secondary care are thought to have contributed to positive

outcomes in two main areas: reduced waiting times for patients (with and associated

improvement in experience); and, improved knowledge of condition and its management for

patients. The post-holder’s work in contributing to the shared care model is too early in its

development to have realised its desired outcomes at this stage.

Figure 3.1 shows early indications of the impact that the nurse-led support at biopsy and

diagnosis may be having on waiting times in the urology service. The data indicate a

reduction in the average waiting times between biopsy and histology appointments of nine

days, and between the biopsy to an appointment with a consultant following the

multidisciplinary team meeting of six days.

17

Figure 3.1 Changes to patients’ waiting times after the introduction of the nurse-led clinic

Interviews with the project team suggested that the main cause of this reduction is the post-

holder’s role in the biopsy, and her role in setting up follow-up appointments at the biopsy.

This new process is seen by the clinical lead as making, “A stark difference to the service”.

This is because patients now do not have to wait to hear from the hospital about when their

appointment will be; at the end of the biopsy procedure, an appointment is booked in so that

the patient knows when they will find out their results. The project team reported that this is

having a positive impact on their care:

“[Patients] can focus on that [the date of their next appointment]. They can say ‘I have a time

and a date to come back’ and that’s obviously reassuring… psychologically that has been

key”.

At the biopsy appointment, the post-holder is able to spend more time with the man than in

the consultant-led model. As opposed to a ten minute discussion with the consultant before

the biopsy begins (as well as receiving a letter detailing the process), the post-holder spends

around half an hour helping patients feel more comfortable and prepared for the procedure.

This process also contributes to greater efficiency as during this half an hour consultation,

the post-holder also supports the man to get into their gown and into the bed.

The project team also reported that, in general, patients are better informed as a result of the

more holistic support offered by the post-holder at biopsy and diagnosis. The clinical lead

has reported that this means that when he sees the men, they are able to have “a much

more meaningful conversation” with more focused questions asked by the patients who are

“much more aware of what is going on”.

Secretarial staff have also noticed an impact of the role. They receive fewer calls from

patients, particularly about when results of tests will be available. Those that they do receive

they can forward on to the post-holder. This is seen as good practice as rather than

speaking to a secretary that they do not know and who has no clinical background, the

patients are able to speak to the post-holder who they are likely to have met, and who will be

able to provide clinical and emotional support if required. The post-holder is also able to give

results out over the phone, something that secretarial staff are not able to do.

The post-holder has also released nursing time which would otherwise be used to support

the biopsy procedure. The post-holder delivers the pre-procedure support (such as getting

the man dressed and prepared for the procedure) while also delivering the holistic support.

Patients’ views

Interviews with patients and their families highlighted several aspects of the delivery model

18

The other main achievement of the project to date, reported by the clinical lead, is that it has

highlighted the need for the original intervention. The output data on the number of people

the post-holder has supported highlights this (and will form a central part of the case for the

role being mainstreamed). Moreover, having the additional resources to tweak service

delivery models has allowed innovation:

“Having Debbie in post has given us the breathing space to explore other aspects of our

service that we can improve on”.

The project is also taking steps to evaluate the programme. In addition to having a robust

system for collecting output data (including data on men’s diagnosis, their age and ethnicity),

there are data available about the impact of the post on waiting times (although this has not

been finalised yet).

3.4 Sustainability

The project has plans to sustain its activities in two main ways. First, the data collected on

the outputs of the role (primarily, the large number of patients and families who have been

supported) combined with patient and family testimony will be used to make a case to the

Health Board’s management to fund the role as a mainstream CNS post. The evidence on

the impact of the role on metrics such as the waiting time between biopsy and diagnosis will

also inform the business case. Second, the clinical lead has submitted another bid to

Prostate Cancer UK for HSCP phase 3 funding. This will be for an enhanced project with

two roles which will aim to continue the development of the shared care model, and follow-up

support.

The progress made towards establishing the shared care model will also be a legacy of the

work. A business case for this model of care has been developed; the next stage is to

include financial information on how any changes to what primary care is expected to do is

reflected in the funding package for primary and secondary care providers. This will take

more time to develop, but the sense is that the clinical lead would not have got this far

without the Prostate Cancer UK-funded post-holder, the work of whom has raised awareness

of prostate cancer management and the shared care model among primary care providers .

3.5 Concluding points

This project has surpassed its own expectations in relation to the number of people it has

supported. This has provided evidence that there was a need for such a role. Two factors in

the design of this intervention are likely to be transferrable. First the use of a single point of

contact who supports the man from a relatively early stage in the care pathway, has been an

important factor in the reductions in waiting times, and the improved coordination of care

delivery. Second, the post-holder is very accessible, either by telephone or face to face. The

impact of this accessibility is evident through the patient interviews and has also contributed

to the high numbers of people supported.

which were particularly beneficial. The accessibility of the post-holder, particularly over the telephone was valued (“Anytime I’ve got a query, I’ve got her number in my wallet… I take the number everywhere… I’ve even phoned her when I was away on holiday.”) The involvement of the post-holder from diagnosis was also highlighted as a key component of the delivery model. One patient noted that this allowed ongoing support and information to be provided after the initial shock of diagnosis (at which point it is very difficult to absorb any information).

Patients and their families also reported the impact that the post-holder had made on their lives and treatment. The main impact noted from the four interviewees was that the post-holder had helped them to be more informed about prostate cancer, and this was a factor which informed decisions about treatment (“We came away really clued up on what was going to be happening with regard to treatment.”). Patients also highlighted that the post-holder’s support (and the accessibility of this) had contributed to a reduced level of anxiety (“It’s been great to have someone there that you can contact immediately for reassurance”).

19

4 St Michael’s Hospice

Funder: Movember, £69,400

Post(s): CNS (0.1 FTE); Physiotherapist (0.6 FTE); Occupational Therapist (0.2 FTE); Specialist Nurse (0.1 FTE); Clinical Psychologist (0.1 FTE).

Phase: 1

Start date: 3/6/ 2014

End date: December 2014

Duration: 18 months

This project has received funding to pay for the backfill of time for a nurse, two

physiotherapists, an occupational therapist, a dietician and a clinical psychologist, each of

whom spends relatively small amounts of their time on the project. These professionals

work together to deliver a six week programme of holistic support for men diagnosed with

prostate cancer; the two physiotherapists lead the work and are the key contacts for the

project.

The six week programme of activity aims to support men and their wives / partners to

improve their wellbeing through physical activity, information to improve their knowledge of

prostate cancer, its treatment and side effects, dietary advice and psychological support.


The programme is being delivered for the fourth time. In the first three completed

programmes, 49 people (men and their wives/partners/family members) attended, of whom

29 are men; 21 of these men have completed the programme. A further nine men are

currently going through the fourth programme.

There have been minimal changes to the goals and delivery model of the programme since

its inception, although the team has altered throughout. The individual who wrote the initial

bid and agreed the monitoring and evaluation plan has moved on to another job. The two

current project managers started this role during the scoping phase of research.

4.2 Implementation

The programme runs over six weeks, each of which has a theme:

■ Week 1: Living with and after a diagnosis of prostate cancer – benefits of exercise and

managing fatigue.

■ Week 2: Symptom management.

■ Week 3: Healthy living and nutrition.

■ Week 4: Relationships.

■ Week 5: Complementary Therapy.

■ Week 6: What next?

Each session lasts a whole afternoon and comprises of an education session on the theme

of the week, some time to talk with other attendees on an informal basis and an exercise

session. The exercise sessions are led by physiotherapists and include a circuit of exercises

that the men can do at home. That the men continue to exercise during the week is a crucial

aspect of the programme. To encourage this, participants are provided with a book of

exercises, an exercise diary to complete and a pedometer to encourage continued exercise

during the week. The delivery of the programme has been iterated each time but only in

very minor ways (such as changing the order in which the sessions take place).

Target group / referral criteria

20

Initially there were difficulties in gaining enough appropriate referrals to the programme. The

project managers reported that the ideal candidates for this programme are men coming to

the end of their initial treatment phase who are about to start managing their recovery from

this treatment, and move into a follow-up phase of care. These men would be well-suited to

the mix of exercise and advice that the programme delivers. More specifically, interviewees

noted that an ideal candidate would be someone who has recently undergone a radical

prostatectomy as this is a procedure which is typically done to relatively young men who may

require support with the side effects. However this procedure is not carried out at the local

hospital, limiting the number of men referred. It has also meant that the men who have

accessed the programme have come from more varied parts of the care pathway.

In the early stages of the project, the men referred were often quite frail and often had other

health problems that had a more significant impact on their wellbeing than prostate cancer.

The project team therefore aimed to broaden referral routes, although this has not yet been

implemented. The project currently receives most of its referrals from one CNS in the local

hospital (who typically supports men with treatments such as hormone therapy). They have

plans to approach local GPs to raise awareness of the project; potential beneficiaries

through this route include men who have multiple appointments at the GP who are managing

their condition but have lots of concerns and questions. They also intend to approach a

clinician in a hospital in Guildford (the local site for prostatectomies) to ask them to refer men

on.

Ensuring that the most relevant candidates access this programme of support affects the

impact that the programme can have. One of the occupational therapists gave an example

of this by reporting that the fatigue sessions have had a varied impact. Often the patients

feel fatigue not because of their prostate cancer treatment but because they are getting

older; the potential impact of the intervention is therefore limited.

Feedback from the patient interviews suggests that two further adjustments to the delivery

model may improve its impact:

■ Greater opportunity for one-to-one support, potentially to be used for an activity such as

goal planning. Interviewees noted that this intervention may lead to the exercises and

other positive behaviours being continued after the programme’s completion.

Interviewees also reported that there is no signposting / referral at the end of the

programme, and that this may improve the longevity of some of the changed behaviours.

It was also noted that any one-to-one support should be in addition to the group work,

not instead of it; overall interviewees were very supportive of the group delivery.

■ Further opportunity for informal discussions with the other attendees and peer support.

Interviewees highlighted the value they got from speaking to other attendees and thought

this could have been of greater value if there had been more time.


Approach to data collection and evaluation

On beginning the project, men complete:

■ The six minute walking test, which is being used to assess the impact on physical ability

and mobility;

■ EQ-5D-3L which is being used to assess quality life looking, in particular at five

dimensions (mobility, self-care, usual activities, pain / discomfort and anxiety /

depression);

■ EQ VAS which is being used to look at patients’ self-rated health; and,

■ FACT-P (The Functional Assessment of Cancer Therapy – Prostate) which is being used

to assess the health related quality of life for men with prostate cancer.

They also complete these tests and survey tools one week and six months after finishing the

programme. Men are also contacted one month and three months after completing the

21

programme and asked to complete a telephone interview which asks about what exercise

they are currently undertaking (and if not, why not), what other changes they have made to

their lifestyle, and what other professionals / services they have accessed since the end of

the programme. The results from these various data collection tasks are brought together to

form an audit paper six months after the completion of each programme.

Initial findings

The full evaluation will be completed in 2015. It will be based on the initial audit report which

provides the data shared below although the project intends to take steps to increase the

proportion of men completing both the pre and post-intervention questionnaires, and to

incorporate findings from a six month follow-up as well (in order to assess the longer-term

impact of the intervention).

The first of these audits has just been completed. Twenty patients are included in this,

ranging in age from 67 to 81 (their average age is 75). It has found that:

■ Mobility of those who take part has slightly increased.

■ There is limited evidence of an improvement in quality of life. Of the twelve men for

whom pre- and post- intervention data are available, three had an improved quality of life

score, eight showed no change, and one man’s score was lower.

■ Eight patients provided pre- and post- scores on their self-rated health. There was an

overall average increase of 2.5 points (out of 10), although four patients reported no

change in their score.

■ Eleven patients provided pre and post course FACT-P data. Analysis of these responses

shows that:

– Six of the eleven patients showed an overall improvement in their responses (when

collated together). Two showed no increase and three showed small decreases.

– The area of wellbeing which showed the largest increases is ‘satisfied with my sex

life’. Only one area of wellbeing showed no change: ‘pain stops me doing what I

want’.

A fuller dataset will be available once more men have completed their six month follow-up

survey. However, this brief summary of the findings of the audit provides an early indication

of the impact that the project is having. The audit report also provides a summary of verbal

and written feedback from patients and their partners that suggests that the project provided

an impetus for some of the men to increase their activity levels, and that the project

represented a good mix of education and exercise. On the evaluation visit, an additional five

men and one woman who had been part of the programme were interviewed. A summary of

the findings from these interviews is included in the blue box below.

Summary of interviews with patients

The project team had emphasised that while they were collecting data on the impact of their intervention on men’s health and physical activity levels, much of the impact of the programme may be drawn out in qualitative interviews with those who had completed it. Five men and one woman were interviewed. Most reported that the programme had had a positive impact on their quality of life, and that as a result, there was a case for the project being continued in some format. Two of the interviewees were less positive and noted that, while there were some benefits to attending, they had been fairly peripheral to them (partly because they felt they were managing their condition well at the time).

Overall the main benefits seem to have been:

■ Gaining an insight into the experience of other men with prostate cancer (and their families) and then providing and receiving support to and from their peers.

“The older you get, the more you realise that contact with other people is important and that has been valuable”.

22

“It makes you realise that some of these chaps are in a worse place than me”.

■ Improved activity levels of some of those who were interviewed. The programme provided an impetus to do some (light) exercise that was not there previously.

“[I had become] A couch potato… not even cutting the grass… [this made me take up] walking with a purpose”.

“In my case that was perfect [the fact that the exercises could be done at home] as it gave you the discipline to do those exercises at the same time every day”.

■ Improved understanding of prostate cancer and living healthily of all those who were interviewed. This differed from interviewee to interviewee, for example, one man noted the value of the dietary advice while another thought the more clinically focused sessions were of most use.

“I’m better informed, particularly about how to exercise.”

“[The course has] Given me awareness of prostate cancer and how it affects everyone in a different way”

In terms of the delivery model followed, the interviewees favoured the group dynamic, and recognised that it allowed efficient access to a range of different health professionals; it also facilitated the peer support which was beneficial. All interviewees thought that inviting men’s wives and partners was a positive feature – “You need to face it [prostate cancer] as a pair” – and that the ladies had as many questions as the men.

Most interviewees thought the programme should be continued – “I got value from the programme… I would be very disappointed if it didn’t continue”. A couple of interviewees acknowledged that this sort of service often sat outside mainstream services – “You don’t see this sort of thing happening with the NHS”. And it was also reported that the service filled a gap in provision contributing to a more integrated model of delivery: “It’s not anyone’s fault necessarily but there’s just a bit of a gap between finishing one part of a treatment and starting another part.”

An unexpected outcome, noted by both the staff and the patients, is the benefits of the peer

support. This is being raised spontaneously in the follow-up interviews that the project is

undertaking; the men are not asked about this:

“It was good to be around people that have the same condition that are moving forward. It

was also good that the men’s wives can talk together and find out about the condition”.

This has heightened importance in an area with no local peer-support groups.

4.4 Sustainability

Plans for sustainability are based upon the involvement of a GP who has a role as cancer

and end of life clinical lead at the local CCG. She has been involved in the steering group

and is persuaded of the need for this service. This is because, in her view, there needs to be

a greater focus on survivorship in the CCG cancer priorities. She has also examined some

of the evidence around the links between exercise and the quality of life of people with

cancer and thinks it should become more widely carried out. She noted that, “There has

been huge success with cardiac rehab… why not take the same approach with cancer?”

Despite this support, GPSI noted that the project would be unlikely to get CCG funding

(although the project plans to submit a business case which the GPSI will support). To do so

would require robust data on the benefit that the project has had on the patients’ health, and

whether the project contributes to longer-term behaviour change in terms of the amount of

exercise / activity the cohort of patients are doing. Potential ways forward include using

funds from St Michael’s to support a continuation of the project in some format, or bidding to

another charity for more funding.

23


This project is high-intensity, low-throughput. It has engaged a relatively small number of

patients and their families in a programme of quite intense support over a six week period

covering a range of subjects. It is clear that the men and their families derive some benefit

from attending (particularly around the peer support they get from the other participants and

their knowledge of their condition). However the evidence is not yet in place about the

impact on health and whether it prompts sustained behaviour change.

The project faces a significant challenge in sustaining the service beyond the Prostate

Cancer UK funding period. This is partly a result of the disjointed scoping phase, in which the

initial bidder and proposed project manager left. The project team is not confident that in the

current financial situation facing their local CCG and in the absence of hard data on the

economic impact of the new service, that it will be able to access mainstream funding.

24

5 Leeds Teaching Hospitals NHS Trust

Funder and total funding: Movember, £64,338

Post: Community Nurse Specialist (1.0 FTE)

Phase: 1


End date: April 2015

Duration: 18 months

The project, led by Leeds Teaching Hospitals NHS Trust (LTHT), was awarded £63,338

(with a £1,000 equipment fund) to support a Band 7 nurse for 18 months. Its aim is to

improve follow-up care, with a specific focus on remote monitoring.

Fundamentally, the rationale for the project is that demand for services has grown rapidly

(and is projected to continue to do so), while resources available to provide services have

not grown in proportion. Models of care have therefore evolved in response - including more

‘remote’ models of follow-up care (e.g. over the telephone). The intention of this project is to

go a step further and develop a ‘virtual prostate clinic’.

The virtual clinic will provide remote support, alongside assessment and information to

empower men and promote self-management. Two of men groups were originally identified

as suitable:

■ Those who have had radical curative treatment where there is a low chance of recurrent

disease over the short / medium term. This group needs follow-up in hospital to ensure

that they have recovered from the treatment, but ongoing follow-up may take place over

many years and could be done remotely; and,

■ Those who have presented with locally advanced prostate cancer, have responded to

hormone therapy, and are assessed as stable.

By providing remote support to these men, the virtual clinic is intended to reduce

unnecessary hospital visits and telephone consultations. This should thereby reduce

pressure on resources, ideally enabling longer face-to-face consultations for men requiring

consultant-led follow-up.

LTHT is a large tertiary centre and provides care for men and their families from across the

region and further afield. Part of the logic of the project is therefore to test approaches that

may have more general applicability in similar settings.


Since the first visit, the implementation of the project has changed significantly (although the

design / intention of the project remains the same). The post-holder has been appointed and

her work has concentrated on reviewing and improving current services, rather than

immediate implementation of the virtual clinic.

This change to planned activity was made because a review of the case load of prostate

cancer patients on the Trust’s ‘Patient Pathway Management’ (PPM) software, alongside

consultation with clinicians, revealed inconsistency in the care pathways associated with

different treatments. This inconsistency led to men with similar disease profiles / risk factors

being assigned to different follow-up regimes:

“Say you had four men, all with the same risk of disease, all having had surgery eight years

ago. You might have two on telephone follow-up – one on annual review, one on six months

– one will be seeing a consultant, one will be seeing their GP”.

This inconsistency was seen as unjustifiable:

25

■ from a patient perspective - why would similar men get different treatment?;

■ from the Trust’s perspective - how to ‘keep on top of’ men in the system? How to know

‘what comes next’ for each patient?; and,

■ from the commissioner perspective - why pay different rates for what ought to be similar

treatment?

Because of this, the project team took the view that the virtual clinic should not be introduced

until a more thoroughgoing review and reform of care had been undertaken:

“Doing this [the virtual clinic] in isolation would be fruitful - but to really maximise the benefits

we needed to look at our complete service”.

5.2 Implementation

Developing and agreeing these pathways has been the focus of the post-holder’s work. This

has entailed:

■ Analysing cases on PPM;

■ Reviewing local, national and international guidance;

■ Reviewing evidence on effectiveness;

■ Taking consensus views where there are gaps in the guidance / evidence;

■ Writing this into a set of pathways that can be implemented; and

■ Getting these pathways agreed by clinical teams.

16 pathways have been produced to date, covering care from the point of diagnosis, through

treatment and into follow-up. Pathways look at what treatments have been used and the

risks of recurrence. So follow-up care has been stratified (along the lines recommended in

the NCSI) and follow-up in clinics, by telephone and (once implemented) virtually is used

according to agreed criteria. The pathways are now in the process of being implemented;

once in full use, they will promote consistency between clinicians.

Having an agreed set of criteria and pathways has also shown the numbers of men that:

■ need to be seen in clinics;

■ could be followed-up by telephone; and

■ may be suitable for the virtual clinic.

The review of patients in the PPM, alongside the production of the pathways has led to the

project team envisaging a greater than originally anticipated proportion of men being suitable

for virtual clinic.

The expected content of the virtual clinic has not changed. IT is a major component of its

implementation. This includes:

1) An IT system (the ‘tracker’) to support the operation of the virtual clinic

This system sends out letters, texts and emails prompting tests (e.g. PSA) at set points in

time according to the pathway that the man has been assigned to. Results come back into

the tracker; if ‘something is amiss’ it is flagged in the system and clinical teams are

contacted. This therefore tracks clinical symptoms over time and enables action where

warning signs are raised.

2) ‘Qtool’, which will be used to assess and support more holistic needs

Alongside the tracker, there is the ‘Qtool’ IT system (developed by LTHT), which can be

accessed over the internet and so is accessible at home and in clinics. Qtool acts as a

platform for the administration of questionnaires; these might include distress thermometers,

standard holistic risk assessments, patient assessed symptoms, etc. This will allow holistic

26

needs to be assessed and addressed according to types and levels of support required,

meaning that men can be asked about wider social needs as part of the virtual clinic:

“If you’re sending patients away then you need to follow their clinical symptoms. But you

absolutely need to know if they’re coping…to pick up and address those issues”.

Support provided will include: information on sexual function, incontinence, advice and

details of support services on relationships, and other survivorship-related needs. Links to

other local support services have been made, including to a support worker provided by Age

UK (and funded by Macmillan) who goes out to men’s homes and provides support to reduce

isolation and encourage re-integration.

Qtool will be a feature of the virtual clinic and results are fed back into PPM; responses can

also therefore be tracked over time and used for auditing.

Getting these two IT systems operational has been challenging. This is partly a function of

getting the different systems to ‘talk to each other’, and partly because of difficulties getting

specialist IT support within the Trust. Making progress here is a core focus for

implementation.

Because of the need to make sure that IT systems are stable and operational before

assigning men to the virtual clinic, a test is being run with testicular cancer patients. This is

because there are far fewer of these patients than for prostate cancer, minimising risk should

it not work. This test will take around three months.

While a stable IT system is being developed, some remote follow-up care is being

implemented. Since May, this has been delivered by the post-holder; over time this will be

handed over to an administrator (funded by the local CCG). This work is starting with men on

telephone follow-up, identifying those that would be coming to the end of their involvement

with the Trust.

Having the post-holder delivering this interim support has led to learning that will be used

when the virtual clinic is fully operational. For example, review letters communicating test

results and follow-up plans have been fundamentally changed:

“When you’re from a clinical background, you get used to letters that start with clinical

information…It [the standard letter] started off in clinician-speak, it’s now in patient-

speak…rather than it being a letter to the GP that the patient gets copied into, it’s now to the

patient and the GP gets copied in”.

The expectation is that, following the test with testicular cancer patients, the IT system and

content will be ready for implementation with prostate cancer patients in the winter.


Outcomes to date have been for the service and are described above. The main outcome

has been a fundamental re-writing of care pathways for men receiving different treatments.

This has been a significant, if unexpected, outcome of the work. It is also likely to be a

sustained impact since it does not rely upon additional ongoing funding: as men enter the

system they will be placed on these more formalised and evidence-based pathways.

The post-holder has been central to making these changes. This has been as result of both

increased capacity (having someone who can ‘step back’ and review day-to-day practice)

and clinical knowledge (someone who understands clinical requirements and evidence to

inform pathways):

“Too often in healthcare we rely upon existing clinical resources to make the change. People

are well intentioned and have good ideas, but don’t have the time. [Names post holder] has

given us this – and her time has been filled!”

Having a consultant as a clinical champion for the project has also been important –

especially in challenging the practice of other senior clinicians and guiding the production of

the pathways.

27

There have been no outcomes for men, since none have been supported by the virtual clinic.

Expected outcomes remain as at the first evaluation visit:

■ Men have an improved experience of follow-up care. This should be both for those using

the virtual clinic (fewer hospital appointments, more tailored care), and also for those

receiving longer appointments for consultant-led care;

■ Men are empowered to manage their condition. Through the provision of information and

support, men should understand their condition and treatment; they should then be more

able to self-monitor and self-manage;

■ Men achieve good clinical outcomes. The expectation is that outcomes will either remain

the same (while consuming fewer resources) or improve as a result of better self-

management;

■ Resource use is improved. Men accessing the virtual clinic will consume fewer

resources, freeing consultant time. There should also be fewer cancelations of

appointments and clinics.

■ More is known about providing virtual follow-up care. Establishing the virtual clinic will

enhance knowledge of innovative means of providing follow-up care; the model could

then be adopted elsewhere.

5.4 Sustainability

The pathways that have been developed are based on evidence and clinical consensus.

They should therefore support sustainable change (becoming part of everyday practice), as

well as being transferable (there is no reason to think that the evidence / pathways would be

peculiar to Leeds).

The pathways should also become part of local commissioning arrangements, with

payments attached to specific interventions on agreed pathways. Plus treatments for

prostate cancer are constantly evolving: having an agreed set of pathways will enable a

clearer view as to how any new treatments might apply – and therefore the associated costs

for commissioners.

Finally, once developed, the virtual clinic should also be sustainable (and more sustainable

than the previous model of service provision) and the model should also be transferable (to

other areas and diseases with analogous challenges in follow-up care).


In some ways the project has not operated as intended. It is behind schedule and has not yet

supported men directly. Challenges associated with implementation mean that it is likely to

be later this year before beneficiaries are recruited onto the virtual clinic.

Yet these changes to the original plan are based on a rational assessment of ‘mainstream’

care at the Trust, which has resulted in changes to care pathways that are likely to result in

fundamental and durable improvements. As with the virtual clinic itself, these changes are

also likely to merit replication elsewhere.

28

6 Royal United Hospital Bath

Funder and total funding: Movember, £54,034

Post: Clinical Nurse Specialist

Phase: 1

Start date: 1 July 2013

End date: December 2014

Duration: 18 months

The main aims of this project are to:

■ Improve the interface between urology and oncology departments in the hospital; and

■ Make CNS support more consistent across the two departments.

CNS support in urology has traditionally been surgically led, providing support to men having

surgery. By comparison, those men who were receiving radiotherapy in the oncology

department did not have as many contact points with a CNS; they would see the urology

team at diagnosis, then go into radiotherapy, and not see a CNS again until remote follow up

after the end of their radiotherapy treatment. Patients in urology were therefore seeing a

CNS at six-weeks follow up, but radiotherapy patients were not being seen until three

months follow-up:

“These are patients who have come for seven weeks, are getting a really good service from

radiotherapy, and then suddenly there’s nothing.”

The project also delivers remote follow-up in the form of telephone support, thereby aiming

to avoid queries being dealt with in out-patient appointments and GP consultations.


At the time of the last visit, the funded post had not yet been filled. The post-holder has now

been in post for a year, having been appointed in July 2013. The main change to project has

been in relation to the survivorship strand of the project (the health and well-being days).

However these activities have been funded by another Prostate Cancer UK programme (and

programme management is aware of the change.

Project activities have therefore focussed on setting up a new follow-up clinic, supporting

oncologists in existing clinics, and offering remote follow-up by calling patients after surgery,

and taking ongoing telephone queries from both urology and oncology patients. In addition,

the post-holder has conducted a baseline audit of patient experience, which will be repeated

in September 2014.

6.2 Implementation

The main project activities have been:

■ An audit of oncology patients was carried out before project delivery began, using a

patient experience questionnaire developed in collaboration with oncologists. 135

patients who had received radiotherapy between March 2012 and April 2013 were sent

the questionnaire; 100 completed the questionnaire. The main finding of note was that

patients said that they would have liked to see a CNS at six weeks follow-up. The audit

took three months; it will be repeated in September for patients who have been seen at

six week follow-up, over the first six months of the delivery stage of the project (January-

July 2014).

■ The post-holder provides a consistent contact point for patients. She is present in the

clinic at which consent for radiotherapy is taken, sees patients at the end of their

radiotherapy to provide information and support and, since January 2014, has been

29

running a follow-up clinic at four-six weeks after the end of radiotherapy. The follow-up

clinic runs on a fortnightly basis, with approximately five men at each clinic. A Holistic

Needs Assessment is done with the men, and a letter is sent to the GP. Currently, the

oncologist runs the clinic at three months follow-up, but it is likely that for low-risk men

this may also be run by the post-holder in future.

■ The post-holder carries out remote follow-up by providing telephone support. Men are

given a telephone number where they can get in touch with the CNS at any point. In

addition, the post-holder calls men after they have been discharged from surgery (radical

prostatectomy and brachytherapy), where she takes many catheter queries. The post-

holder is able to advise, support, and fast-track patients when they might need medical

interventions.

The biggest success for the project was described in terms of how it filled a gap in service

provision. There was a need for radiotherapy patients to receive more CNS support, and the

project has made a difference to patient experience. It has also become highly valued by

oncologists, who are supported in their roles by CNS support for patients during clinics. Two

key factors were identified as contributing to this:

■ Careful planning of the post-holder’s induction. Allowing three months for this process,

where the post-holder was able to “ease into the role” has benefited her learning, skills,

and confidence.

■ They also have internal support with data analysis, where somebody who works in

Quality Improvement is able to help the post-holder with presentation of monitoring and

evaluation findings.

Interviewees also noted that there had been challenges in delivering this project. There were

initially difficulties in working with two of the oncologists, who ‘felt threatened’ by the nurse

role and wanted to do their own follow-up support with men:

“I think they felt that there had been complaints about their service not being good enough,

but that’s not what happened at all. It was about improving the quality of the service and the

experience for men.”

This resulted in them having high expectations of the post-holder, who was still building her

expertise (for example they questioned why she was not a nurse prescriber). This challenge

has been overcome, and now the post-holder is well embedded as a part of the oncology

team (the oncologists frequently call her, and ask her to attend their clinics). The turning

point came through a meeting that was held between them and the project lead; the post-

holder was able to present the baseline audit of patient experience to the medical staff and

this highlighted the need for the intervention.

Other aspects of the project were cited as challenging:

■ Taking telephone queries is an integral part of the support for men. This can be time

consuming however, as the queries often involve the post-holder having to talk to others

in the team to find a solution or the right information for patients. There is also no cut-off

point for access to this number; men can often suffer from late effects of treatment and

can continue to call for up to a year after the end of treatment. The high level of demand

for the service has, so far, has been managed by the post-holder. However this may

present a bigger challenge in the future as demand grows in line with the increasing

number of men going through the service.

■ There is a financial challenge of getting CNS posts accepted by trusts, as they are

substantial investments by the managers. However, it was felt that for this project, this

was less of an issue, as there are indications that the post-holder will be supported by

the trust following the end of Prostate Cancer UK support.

30


6.3.1 Patient outcomes

Patient outcomes have been identified from the baseline survey, from patient letters; and

from feedback on NHS Choices. The main outcome for patients was reported in terms of

radiotherapy patients receiving a better service with more contact points with a CNS who can

give information, advice, support and, if necessary, medication. Most radiotherapy patients

will have urinary or bowel-related side effects, and the post-holder has produced a ‘diet

sheet’ to help with this. They can also refer to an exercise programme, and give information

about counselling.

Patient reported outcomes

Two patients were interviewed in depth on the case study visit. They described the project

in terms of a review to check how they were following treatment, particularly in terms of

side effects experienced or answering any questions they had.

Patients want to ‘take stock’

The follow-up process was well regarded by the patients we spoke to:

“It’s useful to have a review some way down the line and take stock again.”

The new six-week follow-up was seen as an improvement to having only a three-month review that was in place before the project was implemented:

“My concern was when I finished my treatment on the 30th of April I wasn’t due to see the

consultant until 31st of July, and I thought that’s a long time! So when the [post-holder]

called me and asked did I want to be seen by her I was delighted. I saw her on the 3rd

of June.”

The value of talking to someone outside of the ‘routine’ consultations was noted:

“I thought it was useful to sit down with somebody, outside the usual people I see. Just to

sit back and review it in the cold light of day. Because you go for your usual consultation,

and you have all these questions buzzing in your head, and all this information thrown at

you, and you think why didn’t I ask that, why didn’t I ask that?”

“I don’t think her being a nurse made a difference, it’s just because she’s outside the normal routine, it’s just useful to go over it all again. Different things come out in your head, and you ask different questions.”

Patients value the holistic interaction with a CNS

Patients thought that the interaction with the post-holder was different to the interactions

they had had with other clinicians. This difference was noted in terms of being able to talk

to about more intimate issues, but also in terms of the relative independence a generalist

role can offer compared to specialists:

“I think talking to a nurse is different, they do it all the time. The nurses are terrific, because it’s a bit embarrassing to start with, but then within a few days you’re not bothered.”

“It was a slightly different sort of interview, and you’re not talking to any specialist. If you talk to a radiologist you get a different take, and if you talk to a surgeon you get a different take on the same problem. Bring it together and see how that works. I think [post-holder’s] role is important in drawing all that together… she’s not a specialist in oncology or in surgery, so she can talk to me on a different level.. I think there’s value in both, you get a different interaction completely.”

“When you go to see a consultant they’re not interested in your side effects from the treatment, they just want to know is your PSA alright, is your bowel function alright, is your urine function alright.”

Patients also noted some areas for improvement

31

Areas for improvement were wider than the project itself, but are relevant in terms of how

the project fits within the patient pathway. In particular it was suggested that:

■ Appointments could be better coordinated. Patients can have multiple appointment from urology, oncology, and from the CNS. The patient experience could be improved by having these on the same day. It was also noted that some of the letters didn’t name who the appointment was with.

■ Contact cards could be given out at the start of treatment. Patients are invited to contact a number of HCPs if they have any queries along their journey through treatment and follow-up. It was noted that although they are given a sheet with different numbers on at the end of treatment, this would be more useful to have from the start.

Project staff reported that telephone queries are also dealt with sooner; patients get more

immediate support, and there are rarely any answerphone messages left now. The increase

in CNS contacts was also reported to have doubled the number of telephone calls received.

6.3.2 HCP outcomes

Outcomes reported for the post-holder included gains in knowledge (“I’m learning all the

time”), which has increased her skills and confidence in working with men with prostate

cancer. The post-holder has attended Prostate Cancer UK training for GPs, where she found

learning about the primary care perspective useful. The project team are also planning to

present baseline findings at the British Association of Urological Nurses (BAUN) conference.

Other HCPs have also benefitted from the project, as the post-holder is a support to the

urology and oncology teams. Within the urology team this has meant that staff pressure has

reduced; the existing CNS team used to frequently work additional hours, and this is no

longer the case. Support to the radiotherapy team has been indicated by positive feedback

of the post-holder who has been described as having helped to improve their pathway.

6.3.3 Pathways/ organisational outcomes

Organisational level outcomes included better links within the hospital which has meant that

the patient pathway is more coordinated between the urology and oncology departments:

“The old pathway was a little bit hit and miss, with patients falling between the stools.”

Finally, it was suggested that cost savings may be likely for other parts of the local health

system, rather than for the trust itself - for example through the avoidance of GP

consultations. This has not yet been quantified by the project however.

6.4 Sustainability

Project staff are committed to dissemination of project findings both internally and externally

(for example, delivering presentations at internal meetings, in the hospital bulletin, and

presenting at the BAUN conference). There is an indication that the CNS will be supported

locally by the trust; the role was included in the five year plan for urology, and there will be a

business plan submitted to this effect. There are still some details that the team need to

consider however, for example whether a proportion of the budget should come from

oncology, since this department is being supported by the post-holder.

Locally there is also some commitment to consider financial arguments from a system

perspective. There is an awareness that although the CNS post represents a substantial

investment, there is the potential for cost savings across the health community. The trust

works well with the local CCGs, and it was said that there is an “adult conversation that can

be held”, in terms of this.


The project is running according to plan, and has been received well by patients and other

HCPs. It has benefitted from time taken at the start to establish a robust grounding: an

32

extended period of induction allowed the postholder to be well supported and grow in

confidence as she took on her new role gradually. The baseline audit also meant that the

project grew out of identified patient needs; the planned role of the CNS was tested and it

was found that patients would value more rapid follow-up.

It is important that the project collects the evaluation data it plans to in September. The

pre/post design of the patient questionnaire is strong, but requires commitment to ensure

that meaningful follow-up data is collected and reported. Additional analyses such as

comparing CNS contacts in a pre/post design are also possible, and this will lend further

strength to the ‘impact story’ of this project.

33

7 Western Sussex Hospitals NHS Trust

Funder and funding: Royal Mail, £44,362

Post: Clinical Nurse Specialist

Phase: 1


End date: March 2016

Duration: 26 months

The project addresses gaps in care for men receiving hormone therapy. The pathway for

hormone therapy has recently changed, so that it is now being entirely delivered in primary

care. During this time men were not in regular contact with the acute trust, and were

therefore not receiving follow-up support and information about the side effects of hormone

therapy. There were also cases of treatment not being administered correctly. The project

aimed to fill address these problems by providing a sustainable educational component to

healthcare professionals in primary care.

There are two main strands to the project:

■ Identification, CNS support and follow-up – prior to the project being implemented,

CNS support was not consistently provided for men beginning a course of hormone

therapy. Generally these patients start this treatment soon after diagnosis, and may

therefore still be in a state of turmoil and shock. When the patient is started on hormone

therapy this is often only his second consultation with the consultant (the first being when

he received his diagnosis). This project has allowed men starting hormone therapy to

receive CNS support at this early stage, with an increased emphasis on holistic support.

Patients are also contacted over the telephone by the CNS.

■ Education for primary care – the project intends to provide initial training for GPs in

relation to hormone therapy, including information about medication dosage, and how to

manage side effects. The intention was for this training then to be ‘owned’ by primary

care, where it could then be cascaded to other professionals from within the sector.


The original project rationale has been confirmed: the existing CNS did not have the capacity

to manage these patients, and despite a shared care agreement with primary care, much of

the responsibility for managing these patients was not being taken up in primary care:

“When patients went for advice about side effects, they weren’t getting it, and a lot of them

were being bumped back to secondary care.”

The project design was therefore to identify the patients on hormone therapy, provide CNS

support to them, and then work with primary and community care to improve the knowledge

and practice in this part of the system. This last element of the project has been modified,

and the CNS support in the acute trust has been more of a focus than originally planned.

The main change to the plans for this project has been in relation to the second strand of the

project: the educational component in primary care. The project met with many challenges in

the delivery of this component (described below) and this part of the project is under review

in consultation with Prostate Cancer UK (as part of a new funding agreement). Progress to

date has therefore focussed activity on delivering training to GP practices in Worthing rather

than a wider area. However, there has been reluctance from the GPs involved to take on the

additional responsibility of cascading this training to their colleagues. This part of the project

is being reviewed in consultation with PCUK.

34

7.2 Implementation

The main project activities have been:

■ The post-holder has identified and supported over 200 patients to date in the acute trust.

Direct support is provided to patients in clinic at treatment initiation, and continues in

follow-up to the point of them starting radiotherapy treatment. This service ensures

patients receive adequate information and support from the start. The development of

the service came out of an identification of patient needs in the scoping phase of the

project, however it presents a challenge for future sustainability once the post is lost.

■ The post-holder has delivered training in seven out of 13 GP practices in Worthing;

(there are 56 in Coastal West Sussex CCG). Training sessions are planned for two

further practices. GPs have not been willing to cascade this training however: “The initial

idea was that this education package would be self-sustaining, for them to teach each

other. But they’ve not really wanted to do that, they’re quite happy for us to give the

presentation, but their understanding is the patients are still under secondary care, and

it’s their responsibility to support the patients.”

■ Plans have been made to embed the training material on the CCG website for HCPs.

The website already hosts links to clinical guidelines – including for prostate cancer – so

this is a suitable mechanism for spreading the training. However the limitations of this

approach have been acknowledged in terms of the number of GPs likely to use the link,

and the capabilities for monitoring how it is used. There will also be a guide available for

GPs following the training. There is scope in particular for practice nurses to use this, to

print off a patient booklet from here, and to be able to answer more questions directly

after referring to the website.

■ The post-holder will be leaving the project to take a permanent position within the team,

and an advert to replace him is being published. The current post-holder’s new role will

give him a broader remit within urology, but he may still be able to contribute to the

project, at least until the new recruit takes his/her position.

The main strengths of the project’s implementation have been:

■ The project has recruited a highly skilled and competent post-holder, who has been able

to work autonomously to lead and deliver the project activities.

■ The CNS support in clinic has worked well with patients reporting that they value the

support. Consultants are also supportive of the CNS service: “It was a bit tricky at first

when they didn’t know who I was or what I was doing. But now when patients start on

hormones and if for some reason I’m not there, most will let me know the patients which

need following up.”

■ The training in GP practices benefitted from “finding a way in”. The post-holder was able

to align his training for practices with a drugs representative who was visiting and also by

providing lunch for attendees, which acted as an incentive for their attendance. This

arrangement has worked well because each support the other’s role, with the drugs

representative marketing the hormone therapy drugs, and the post-holder providing the

training around hormone therapy side effects.

Despite this approach, the main challenge has been primary care engagement. Whilst GPs

have been happy to receive the training from the post-holder, they have not been willing to

‘own’ this training by cascading it further within their sector. Attempts have been made by the

project to overcome this challenge, by trying to identify an influential ‘champion’. The post-

holder worked with a Macmillan GP for some time who was able to provide links into his own

and other practices. However this GP is now leaving, although there are opportunities to link

with his replacement. There were also attempts to work with the urology lead, but this did not

secure the necessary influence in the sector. The interviewees reflected on how it is difficult

to identify a champion who has influence across primary care, where GPs work in individual

practices – sometimes independently from one another. Limited capacity for service

development was also identified as a reason for this challenge.

35

“Navigating community and primary care is hard, knowing who to speak to is difficult. We

don’t have a list of people we can go to, it’s very dilute, 56 practices and 50 GPs, large

numbers, and I think the pressures in primary care have changed enormously in the last few

years, so they don’t have much capacity to do some of that development work.”

“When patients come into an acute trust they’re all in one area, but as soon as they’re out in

the community they’re dispersed so it becomes more difficult to manage.”

An additional reason for the lack of engagement in primary care was explained by the lack of

importance given to cancer relative to other conditions:

“Also GPs don’t necessarily feel that cancer is a problem for primary or community care, that

the problems out there are to do with COPD, heart failure, diabetes, and that cancer is a

secondary care problem…most GPs say they only diagnose one or two cancers in their

lifetime.”

A lack of resources was also mentioned. The urology team is stretched and therefore, the

project lead and existing CNS have been able to provide limited support for the post-holder.

Finally, interviewees noted that although the project award has recently been extended, the

initial 12-month award has undoubtedly affected project development – illustrated by the

resignation of the post-holder. The necessity to go through a recruitment process again

poses a risk to the continuity of the project as it moves into the next phase.


The project team has not yet collected evidence of patient outcomes. There are further plans

to administer a postal patient questionnaire to assess the impact of the support service

received comparing practice before and after the project began. This has tool has been

piloted and is sitting with the information governance team for approval. The main patient

outcomes reported to the post-holder so far are:

■ The hormone therapy pathway has been strengthened by improving consistency of care

and support for patients. This means that patients now receive timely treatment with the

correct dosage. They also understand side effects better than they did before the project

was implemented.

■ Patient experience of the pathway is more positive. Patients have described the more

holistic interaction of CNS support as valuable: “It’s very important to patients that they

see a nurse as well as a doctor, and that they can call back in.” In particular, patients

have appreciated the proactive approach of follow up care, where the CNS will call

patients, rather than leaving them with just the open invitation for them to call back in.

Outcomes for HCPs include the following:

■ The post-holder has benefitted from the role; this was his first band 7, CNS post, and it

has effectively been a stepping stone into a permanent CNS post for him.

■ The training was not evaluated formally although GPs who have been trained in primary

care said that they enjoyed the training and found it to be informative; two of the

practices were interested in having more information following the training. There is also

anecdotal evidence from patients who say that they have had some information from

their GP about the side effects of hormone therapy. It is also possible that the training in

primary care has raised the profile and awareness of prostate cancer in the community.

7.4 Sustainability

The project has been funded by Prostate Cancer UK for a further 18 months. The current

model requires revisiting however, as the project has not been able to embed a sustainable

model which can continue without the post-holder, as was intended. The main focus of the

project has become the CNS support given to patients starting on hormone therapy, rather

than developing the capacity of primary care services, as was intended. There is a continued

demand for CNS support, but there are no plans in place for support for the post beyond

Prostate Cancer UK funding. The trust is unlikely to support the project, given its aim to

36

make £19 million savings in the next year. There are also other areas within oncology

assessed as having a stronger case for investment.

The project team is keen to meet with the programme team to discuss how the rationale and

design might require adapting as the project moves into the next phase. When the bid for

additional funding was submitted in March, the team was still optimistic about the original

aims, however these are now looking increasingly difficult to meet. Alternative models for the

project may include focussing on practice nurses (although it was noted that they too are

overwhelmed with current workloads); information centres; or volunteer led models, and

support groups.


This project has been hampered by the challenges of engaging primary care in a sustainable

training module for hormone therapy. Whilst a valued new service has been set up for

patients going onto hormone therapy in Worthington Hospital, this does not appear to be

sustainable beyond the support from Prostate Cancer UK. This creates a risk to the delivery

of the project as established, and also therefore to the sustainability of its effects.

37

8 North Bristol NHS Trust

Funder: Movember, £69,875

Post(s): Prostate Cancer Survivorship Lead (x2); Prostate Cancer Assistant Psychologist

Phase: 2

Start date: between Feb and July 2014

End date: mid 2015 onwards

Duration: 18 months

This project has received funding from Prostate Cancer UK for a part-time (0.6) CNS, funded

at Band 7 and for a part-time (0.6) Assistant Psychologist funded at Band 5 (£44,638). Both

posts are funded for 18 months.

The aim of the project is to deliver the comprehensive roll-out of the survivorship reforms

developed by North Bristol Trust (NBT) through the NCSI initiative across the whole care

pathway. The long term intention is to establish a stratified pathway of care for all patients

with prostate cancer at NBT to include a combination of self-management and shared care

programmes as well as the delivery of complex care where needed and rapid re-access to

the system if required.

8.1 Update since last visit

Since the first visit the project team have recruited a part time Assistant Psychologist who

has been in post since January 2014. The CNS who was originally appointed and who had

led the project from the outset has since moved on to a different post. She will be replaced

by a new Urology CNS and Prostate Cancer Survivorship Lead shortly after the evaluation

visit. The new post holder has been involved previously in facilitating the Living-Well days.

The project progresses with the same aims and objectives as set out in the original proposal

to Prostate Cancer UK and described above. It sets out to achieve these through:

■ The provision of one day self-management ‘Living-Well’ events offered to all men with

prostate cancer. A programme of training for patient volunteer tutors who can co-deliver

the ‘Living Well’ courses has also been developed.

■ The provision of six week group-based self-management programmes offered to all men.

■ The provision of a holistic needs assessment for all men moving out of active treatment.

■ The provision of more care at home and in the community through the options of the

community-based and remote monitoring system with open access to secondary care if

and when needed.

■ Delivery of a programme of training workshops promoting improvements and

consistency amongst health professionals from all parts of the care pathway.

8.2 Implementation

Progress

The survivorship programme, initiated under NCSI, has been up and running in NBT for a

number of years. The aim now is to embed the programme, as part of a stratified pathway for

all men with prostate cancer; to ‘streamline’ the follow up pathway so that all men are offered

the same choices.

The post holders have established a Project Steering Group that has met twice. The group

has representation from an oncologist, urologist, IT technician with responsibility for remote

surveillance, CNS, GP, the post holders, early project leads and a patient representative.

The main task of the Steering Group will be to establish and get agreement for the

38

survivorship pathway that has already been designed and set down on paper. At the second

meeting it was also agreed that they would design a simple postcard sized information sheet

to better inform patients about all stages of their pathway following initial diagnosis.

The new Prostate Cancer Survivorship Lead will extend the holistic needs assessment

clinics as soon as she is in post. These have already been started but they have not been

able to carry out as many as they would have liked as they are time and resource intensive.

The long term aim is that all patients will receive an hour long CNS-led appointment. These

will firstly be offered to patients who have had surgery, following removal of their catheter.

The intention is to embed these in the work plan of all relevant CNSs – not just those

appointed to the project. There is currently a treatment summary CQUIN payment

framework7 in place to incentivise these.

The second priority will be to develop closer links with GPs so that there is better integration

between primary and secondary care. There is still work to be done with promoting and

selling the pathway. Many patients will be on remote monitoring and so the aim is to ensure

a treatment summary for patients is in place that is followed up in primary care. They will

also be exploring training for primary care staff but want to ensure this fits with plans in other

parts of the system both locally and nationally. The remote monitoring has worked very well

so far and there is the intention to consolidate and extend this as the project develops.

The Living Well self-management days are established. Men who are in a range of different

positions along their treatment and care pathway can attend the course – not just those

coming out of active treatment. The days cover issues such as erectile dysfunction, coping

with pain and sleep problems. They include input from clinical psychology and an oncologist

who carry out question and answer sessions that enable patients to ask questions on any

aspect of their prostate cancer experience. The courses have been very well received and

have had good patent feedback.

The Living-Well courses have also been running well although these attract a smaller

number of people. Although most people express interest fewer sign up. This is for a variety

of reasons including practical work-related reasons and psychological barriers.

The Assistant Psychologist (funded by Prostate Cancer UK for 0.6 FTE) has been working

on developing the monitoring and evaluation database (among other tasks such as project

management, taking part in the Living Well days and leading on patient engagement work).

In addition, NBT has been collecting data from breast, skin, prostate and colorectal tumour

sites for some time but the database has, until now, been inconsistently managed. The

results from the psychometric questionnaires are collated here – these include the Patient

Activation Measure-13 item questionnaire (PAM-13), the HADS- Hospital Anxiety and

Depression Scale (HADS) and Quality of Life in Adult Cancer Survivors (QLACS). These will

provide the outcome data for the longer term evaluation of the project. For prostate cancer

these questionnaires are administered at the start and end of the Living-Well course and at a

three month follow up point.

Challenges

The programme has faced a number of wider organisational challenges with the merger of

two hospital trusts and changes in staff. These are now settling down and with the

appointment of the new CNS Prostate Cancer Survivorship Lead the project is expected to

progress at a still greater pace.

The survivorship redesign work has had better buy-in from some consultants than others.

The current situation is that men will follow a different pathway of care that is, in part,

dependent on the consultant that they work under. The challenge therefore is to get key

clinicians to facilitate the process of ensuring all consultants agree to, and follow, the same

pathway. Some nurses also see the self-management and survivorship work as additional,

rather than part of mainstream practice, so there is also a challenge in securing their buy-in

and in getting monitoring data from them.

7 Commissioning for Quality and Innovation payment framework

39

There is a further challenge in getting more men to sign up to and follow the six week group-

based self-management programmes. This is in part due to the psychological barriers people

might face in engaging in behaviours that promote self-management:

“People talk about stepping off a dreadful roller coaster ride and they are still feeling ill - ‘I‘ve

dodged the bullet, I’ve had a near miss, I just want to get back to normal life now’... The

instinct is to step away. But you still want to hold onto something – I’ve been given a

breather I can walk away from the funfair ride. But active survivorship is not about ‘wait and

see what happens’ it is about surveillance – the wait and see is the instinct we are up

against.”

Facilitators

NBT is building on a body of survivorship work that has been developed over a number of

years. This has been led by a number of committed individuals. They have developed good

partnerships with a number of organisations including Macmillan and Prostate Cancer UK

and have representation from senior and committed clinicians on the project steering group.

There is also a south west region cancer network led by a clinician who is very proactive in

pushing the survivorship agenda forward. The funding from Prostate Cancer UK is

described as having come at a really opportune time for the work developed in Bristol.

Lessons learnt

Patients have said that it would be really useful to have the information provided at Living-

Well days before rather than after treatment. The team are therefore looking at the points in

the pathway that patients are invited to events to optimise relevance and usefulness.

Flexibility over times in which the six-week course is offered might promote uptake.

Interviewees stressed the importance of securing engagement from health professionals so

that they “carry conviction when talking to patients” about the importance of the survivorship

part of the pathway and hence “selling the Living-Well course to patients”. This also means

linking the holistic needs assessment process to the course to ensure that not only are the

courses better able to meet individual needs but that the importance of covering social and

psychological aspects of transition between care providers is understood by health

professionals.

8.3 Outcomes and Impacts

Outcomes so far pertain to the Living Well events and courses. The one day events have

been running quarterly and are attended by 50-60 patients and some partners. The aim of

the Living-Well events and courses is to achieve reactivation and re-engagement for patients

– enabling them to get back to a ‘normal life’ by promoting self-management and reducing

distress.

The days have been very well received and have had excellent feed-back via formal

evaluation mechanisms. Patients report that they feel better informed about their condition

and are more confident about self-management and where to go if, and when, they need

help, including appropriate use of primary care and access to a CNS. Patients have also

reported that the Living-Well events provide good opportunities for peer support and

establishing friendships between people who are experiencing similar symptoms and

treatment. Those who find it more difficult to ask questions are able to benefit from the

question and answer sessions by hearing answers to questions that others ask in a less

threatening atmosphere.

The Living-Well days, by promoting better self-management will also serve to free up

Consultant time to spend with more complex patients that would be taken up with generic

patients.

‘Rashid’

Rashid was diagnosed with prostate cancer in March 2012. He has since had radiotherapy

40

as well as hormone treatment both before and after the radiotherapy. He currently has hormone injections from his GP and input from the CNS which obviate the need to attend appointments in secondary care.

Rashid was invited to attend a Living Well event shortly after the onset of his treatment. However he was unable to attend at this time and instead attended when a second opportunity presented just after his radiotherapy had finished. He says he regrets this as the information was so useful and he would have been better prepared to deal with his treatment if he had attended the earlier event. He describes the day in the following way:

“A very successful day, very useful. They informed us about so many things about prostate cancer, the tests you are going to have and what they mean, PSA levels, the Gleeson score and what that means… that kind of thing was very useful”

Rashid found the one-day Living-Well event so useful that he went onto attend the extended six-week course:

“I gained a lot and so I applied to join the group sessions…That was really helpful. They talked about everything, the possibility of sexual problems, psychological problems, exercise, diet and sleeplessness. I grabbed all of it”

Rashid has since trained as a co-facilitator for the Living Well event and sits on the project Steering Group as a patient representative.

Rashid went onto describe the particular benefits he gained from the six-week intervention and the way it changed his ability to cope. For example, one of the key benefits he got was coping with the sleeplessness he had experienced as part of his prostate cancer treatment and learning how to relax. He also says that the course made him feel more empowered to contact different health care professionals when problems arose – for example when he wanted to lose the weight he had gained as a result of treatment. Rashid discussed the importance of involving his partner in different aspects of his prostate cancer care and says that although the course did not include partners he was able to pass on learning from the course that was helpful to her as well. He says that the group interaction and the ability to listen to and learn from how others had coped with problems was particularly helpful.

Rashid feels that many more men could benefit from attending the six week course but that there are problems to be overcome in marketing it and getting good uptake. Using patient voices to promote the benefits of the course to other men is the way forward and what they are currently working to achieve through the production of a DVD. Prostate cancer has a high prevalence amongst African-Caribbean men and Rashid says that they ‘are the last people to discuss this openly’. When he attended he was the only person from a BME background but on the course that he has since co-facilitated three men from different BME communities attended.

Delivering the one-day events to all men is limited by resources and there may be a problem in recruiting more volunteer patients. He has suggested the development of a buddying scheme to the steering group.

He is very supportive of the aim of embedding self-management in the care pathway of all men affected by prostate cancer and empowering people through the provision of more and better information about their condition.

The core aim of the project is to embed the redesigned Survivorship Pathway. The project

team and Steering Group report that NBT is further forward with this as a result of the

Prostate Cancer UK funding and committed posts. However it is recognised that this

represents a major change process and so more tangible outcomes are not expected at this

early stage.

8.4 Sustainability

The project intends to embed and sustain its activities in a number of ways. The Steering

Group has already agreed, in principle, a redesigned and streamlined pathway of care for all

men affected by prostate cancer. The ambition is to get all consultants signed up to following

41

this pathway so that it is embedded in practice rather than something that is sustained

through the work of dedicated post holders.

The aim is to embed the Living- Well events in the pathway of all men affected by prostate

cancer as an opt-out rather than opt-in follow up appointment. The letters sent out to

patients have already been looked at so that the Living-Well event will be described as a

follow up appointment rather than an optional extra. The holistic needs assessment is also

intended to be rolled out to all men and both should become part of the practice of all

relevant CNSs. The psychology team run courses for patients and staff to train them to

deliver the Living-Well course.

There are good relationships with CCGs and the Commissioning Support Unit and there are

agreed tariffs for remote monitoring and telephone follow up but currently no charge for the

Living-Well events. They have begun discussions over future tariffs for these, as

standardised follow-up appointments, once Prostate Cancer UK funding finishes.

Establishing agreed tariffs for survivorship work are now part of a broader agenda.


The project is building on a previous programme of successful survivorship work in NBT that

cuts across different tumour sites. The project has the long-term aim of embedding the

survivorship reforms developed under the NCSI through the establishment of a common

pathway of care that includes self-management and shared care. While important progress

has been made towards realising this aim it is still too early to expect comprehensive

change.

The Living-Well events have evaluated well but there are still some challenges in promoting

uptake of the six-week course. The project is currently working to overcome these primarily

through production and use of a DVD that involves interviews with men talking about the

benefits they have had from course attendance. Finally, the project is well set up to

demonstrate health and well-being outcomes through the analysis of data from the

psychometric questionnaires filled out by patients.

42

9 Analysis of annual returns

This section provides analysis of the data projects submitted in their annual monitoring return

including inputs, outputs and outcomes.

9.1 Inputs

Prostate Cancer UK funding is the largest single input across the programme. Data returned

by the projects is detailed in Table 9.1. It shows that:

■ As of July, the cash contribution from Prostate Cancer UK amounts to £2,296,402 over

Phases 1, 2 and 2.58 as of July 2014.

■ The total cash contribution additional to that provided by Prostate Cancer UK is £6,603.

Three projects (Leeds Teaching hospital, NW London Hospitals and University of

Southampton hospital) make up 75% of this total.

■ The estimate that projects give for in-kind contributions from other organisations is over

ten times that of the additional cash support provided by host organisations. In-kind

contributions total £78,944. Over half of the in-kind contributions (£44,000) come from

one project (NW London CSU). Projects are not required to itemise the in-kind

contributions, although many do. This indicates that over half over the in-kind

contributions have been in the form of staff time.

■ As would be expected given their more advanced stage of implementation, Phase 1

projects make up the majority of the overall additional contributions (approximately 85%).

■ The total additional contributions from across the whole programme amount to

approximately £85,547 (around 4% of the funding provided by Prostate Cancer UK).

8 The cash contributions from phase 2.5 projects have been included here; these projects will start reporting on

additional contributions once all monitoring and evaluation plans have been agreed (expected for the Sept 2014 report).

43

Table 9.1 Cash and in-kind contributions from host organisations

Organisation Cash support from Prostate Cancer UK (including equipment fund)

Additional cash contributions In-kind contributions Total additional contributions

Phase 1

Christie Foundation (phase 1) £64,429 £200 £3,9609 £4,160

Leeds Teaching Hospital £64,338 £1,50010

£011

£1,500

NW London CSU £189,878 £692 £44,000 £44,692

NW London Trust £87,300 £1,800 £1,194 £2,994

Royal Marsden £314,040 £0 £17,659 £17,659

Royal United Hospital Bath £54,034 £0 £0 £0

St Michael's Hospice £69,400 £0 £270 £270

UCL Partners / London Cancer £76,151 £500 £1,200 £1,700

UCAN £135,078 £0 £0 £0

Western Sussex Trust £44,362 £0 £0 £0

Total phase 1 £1,099,010 £4,692 £68,283 £72,975

Phase 2

NHS Lothian £76,654 £0 £0 £0

N. Bristol NHS Trust £69,875 £150 £1,036 £1,186

Wirral CCG £134,000 £0 £0 £0

The Hospice of St Francis £73,858 £0 £0 £0

Barts Health & St Josephs £119,099 £0 £2,00012

£2,000

9 June 2014 quarterly report in-kind contributions were: £900 + £900 +£780. ‘Spend to date’ prior to that was recorded as £1380…

10 £315 plus Macmillan-funded Band 7 post-holder (for 2 weeks)

11 The project returned noted that they had received ‘IT support’ but this is not clear enough to make an estimate.

44

Organisation Cash support from Prostate Cancer UK (including equipment fund)

Additional cash contributions In-kind contributions Total additional contributions

Northamptonshire Trust £66,630 £0 £0 £0

BCUHB (Betsi Cadwaladr) £67,670 £0 £0 £0

Brighton & Sussex University hospital £39,683 £82 £0 £82

NHS Fife £38,199 £0 £1,70013

£1,700

Christie Foundation (Phase 2) £67,630 £0 £1,45014

. £1,450

Guy's & St Thomas' £84,248 £0 £4,40015

£4,400

University of Southampton £91,846 £1,678.80 £75 £1,754

Total phase 2 £929,392 £1,911 £10,661 £12,572

The Pennine Acute Hospital Trust £67,000 - - -

The Hillingdon Hospital Trust £67,000 - - -

The Royal Surrey Foundation Trust £67,000 - - -

Tayside Health Urology Cancer Group £67,000 - - -

Total phase 2.5 £268,000 - - -

Total phase 1, 2 and 2.5 £2,296,402 £6,603 £78,944 £85,547

12

The project reported the following: ‘3 x rooms for 3 hours; 8 hours Band 8 time; and HR for recruitment and interviews’. This has been estimated as follows: £600 for the room hire; £800 for the band 8 time; £600 for HR time. 13

The project reported ‘£800 plus 10hrs of urologist time’. The 10 hours of the urologist time has been estimated at £900, therefore this is £1,700 in total. 14

The project reported ‘Study days funded; Dictaphone supplied, £200 bleep supplied; and 3-5 hours clinical staff time’. This has been estimated at £1,000 for study days, £100 for Dictaphone, and half a day of band 5 – 7 which is £150. This is a total of £1,450. 15

The project reported ‘£2,000 plus 5 days project manager time; 1 day deputy head of nursing; half day consultant.’ This has been estimated at: 5 days at £300 / day for the project management - £1,500; and 1 ½ days of senior clinical support which is approximately £900.

45

9.2 Project outputs

Figure 9.1 to Figure 9.5 provide the latest data on the number of beneficiaries supported,

their characteristics, and the nature of the support delivered. Of the 22 projects funded in

phases 1 and 2, 19 are in ‘full delivery’ i.e. they are supporting patients (and families /

carers); this has risen sharply since March 2014 when there were only 12 projects in full

delivery. The total number of beneficiaries supported to date is 3,192, around 97% of whom

are males.

Figure 9.1 Month-by-month increase in beneficiary numbers16

16

The dip in this cumulative frequency chart is a result of the new monitoring requirements put in place in March 2014. This led to a few projects reducing the number of men they had supported (as previously they had reported number of interventions as opposed to the number of people supported).

46

Figure 9.2 and Figure 9.3 show that three-quarters of beneficiaries (75%) are between 60

and 79 and four-fifths are white; around one-in-ten beneficiaries refused to provide data on

ethnicity (although these are primarily from one project, and so is likely to be a particular

issue to do with local data gathering).

Figure 9.2 Age of beneficiaries

Figure 9.3 Ethnicity of beneficiaries

47

Figure 9.4 shows that there are two main types of delivery method used in the HSCP

programme: remote support / monitoring and one-to-one support delivered face to face

(which is quite a traditional mode of delivery). Peer support is the form of support which has

been used least. Projects reporting ‘other’ are primarily doing so about support delivered to

partners which they suggest should be a different category.

Figure 9.4 Mode of delivery

Figure 9.5 highlights that the content of the support delivered by projects has been mixed

with all categories being delivered to around a tenth or more of the beneficiaries. The two

largest categories – education and psychological support – which make up around half of the

support delivered, are also the two most broadly defined. Within the ‘other’ category there

are several activities including appointment queries, medication management, and holistic

needs assessments (which are thought to cover all categories).

Figure 9.5 Focus of support

All projects are also asked to submit data on other outputs specific to their project. In

addition to the outputs related to the number of patients supported outlined in the figures

above, at the programme level the following outputs have also been produced.

For health professionals:

■ 13 meetings, workshops or training sessions have been delivered to health professionals

(including 3 sessions on the holistic needs assessment - HNA).

■ 1 training sessions has been delivered to a patient volunteer tutor.

48

■ A further 10 to 20 health professionals have been engaged in training from another

project (the Christie phase 1).

For services:

■ Several projects report that they have supported men / carers with new services

including:

– 10 HNAs have been completed.

– 6 men have had their rehab needs assessed at the point of diagnosis and received

appropriate information about available services.

– 6 men have been signposted / referred on to other services

– 3 men with complex prostate cancer who have access to a named Prostate Cancer

CNS

– 41 men have access to a key worker in both secondary and primary care.

9.3 Outcomes reported to date

On a quarterly basis, projects are required to submit outcome data on a set of indicators that

were agreed in each project’s monitoring and evaluation plan. This section summarises the

outcome data submitted by projects (Error! Reference source not found. details each

project’s response in relation to outcomes).

At present there are useable outcome data available from seven projects, reflecting the

challenges that many projects have faced in implementing their planned activities. Of the

remaining projects, a small number are at the early stages of collecting outcome data and so

the data they have provided is only indicative at this stage. A few other projects have

reported that they have surveys or research tasks planned for the coming months, and so

data on outcomes is likely to generated for the next two quarterly reports.

There are also a few projects whose evaluation plans have been assessed (by ICF) as being

at risk. These projects have either:

■ faced substantial delays in following the timetable set out in their implementation plans

(for example, a result of a challenging recruitment phase, or post-holders leaving);

■ had difficulties in defining and agreeing a monitoring and evaluation plan; or,

■ not fully engaged with the monitoring system providing inconsistent information.

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recommendations for action to address these challenges.

The following sections aggregate the outcomes reported to date around the categories of

outcome set out in section 2.3.3.

9.3.1 Patient focused outcomes

Patient experience

Several projects have reported positive findings in relation to patient experience. Over one

thousand people (1,111) have reported satisfaction with the care they have received from

projects. 98% of these patients are from two projects (NHS Fife and the Christie phase 1).

Clinical benefits

One project so far has provided data on the clinical benefit of their intervention. The

Christie’s phase 1 project has reported that around 90% of the men who use their service

have ED and for those men that wish to, the project has provided them with appropriate

advice, commenced treatment or referred to specialist services. There is no data yet on the

impact of this intervention.

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St Michael’s Hospice is at an early stage of its data collection in this area, but there are

some signs that it has had relatively small positive impacts on beneficiaries’ quality of life

and mobility levels.

Improvements in self-management / patients feeling informed about treatment

Guy’s and St Thomas’ reported that as a result of the telephone consultations the team is

delivering, 22 patients report that they feel able to self-manage. In a related outcome area,

NHS Fife reports that 90% of its 734 beneficiaries feel more informed about their treatment.

9.3.2 Healthcare professional outcomes

Two projects have provided data on the impact of their activities on healthcare professionals.

So far, the Hospice of St Francis reports that 19 local health / social care professionals have

improved knowledge as a result of their project. NHS Fife also reports that 10% of GPs are

more informed about prostate cancer services. The project has not provided data on the

overall number of GPs reporting improved awareness in this area.

9.3.3 Service outcomes

Two projects have reported outcomes related to improvements in services:

■ NHS Fife reports that the introduction of nurse-led support at biopsy and follow-up has

reduced average waiting times between biopsy and histology by 41% (from 22 days

down to 13 days) and between biopsy and consultant-led follow-up appointment by 13%

(from 47 days to 41 days).

■ The Christie phase 1 has collected quantitative data which suggests that 100% of men

seen in the community clinic reported that it was more accessible (than the previous care

setting). The same project team also reports that they have freed up a total of 188

appointments in secondary care which has then allowed more complex patients to be

seen more quickly (as well as gaining a longer appointment).

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10 Lessons learned

The HSCP programme is at an important stage in its development. Its 26 projects are at

varying stages of maturity. Several phase 1 and 2 projects are approaching their final six

months and so plans for sustainability and outcome evaluation are key concerns. The

majority of the programme, though, is at quite an early stage of delivery (or at the

commissioning stage in the case of phase 3 projects) and so the lessons learned to date can

influence their delivery and potential success. This chapter summarises a set of lessons

learned at the project and programme level. They inform a set of recommendations, outlined

in chapter 11, for the programme management team and wider charity.

Commissioning processes have not, so far, encouraged projects to ‘hit the ground running’

In general, projects have reported that the commissioning processes used by Prostate

Cancer UK are fairly light touch. Indeed, in early rounds of research with projects,

interviewees reported that they completed the Expression of Interest form and thought that a

full Invitation to Tender would follow. As a result, in several cases, the process of

commissioning has not prepared projects to begin scoping work and implementation

immediately after being awarded funding.

Analysis presented in chapter 2 suggests that processes have been improved through each

round of commissioning; whether this leads to the most recently funded starting delivery

sooner than earlier projects will be a key measure of success for the refined commissioning

system, and its use in future Prostate Cancer UK programmes.

Implementation has been variable; recruitment is the central challenge

Up to half of projects reported delays which related primarily to recruiting post-holders. In

isolated cases, this caused delays of up to one year. There appear to be two main reasons

for this:

■ The main challenge projects face when trying to recruit staff members is the temporary

(and relatively short-term) duration of many of the projects, combined with lack of

certainty as to the longer-term sustainability of the posts. There are early indications

from a limited number of projects that these issues are causing post-holders to leave

projects before their completion, creating risks to delivery.

■ When posts are advertised, several projects have reported that they received few

applications. One potential explanation that has been suggested is a lack of supply of

clinical staff who combine the specialist clinical knowledge and the broader skillset

required for these ambitious projects (such as the drive to develop transformation

projects, and project management, stakeholder engagement and research skills). A

couple of projects that are piloting particularly specialist services (for example, a pre-

operative physiotherapy support service) reported that there were only a handful of

potential staff in the country who could fill the post.

In addressing these challenges, projects have used different approaches to filling the post(s).

This includes opening posts up to people who could fill it as a secondment from their

permanent post, targeting particular individuals for recruitment, and re-defining the scope of

the project so that it is a training post (thereby attracting staff at a different stage of their

career).

A couple of projects where recruitment appears to have been less of a challenge provided

evidence of good practice in this area. This includes:

■ Using the Prostate Cancer UK funding to backfill the staff who are moving on to the

project team; and,

■ Building a project around an individual – i.e. bidding for the funding with an individual in

mind.

However, even where recruitment was relatively straightforward there can still be a

substantial large time lag between being awarded money and the post-holder starting. Taken

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together, these delays have contributed to a sense that the programme has failed to make

the progress which might have been expected by this point in its delivery.

There are other common challenges facing projects

Across several projects, the lack of resources available for managing projects has been

reported as being a key challenge. Given that the projects vary in size from £40,000 to

£300,000 and in the number of funded posts, there are differing project management

requirements. Project leads have reported that the lack of resources available for project

management has affected implementation or has meant that post-holders can lack support

and oversight.

Another challenge reported by a few projects is that they have failed to reach the expected

number of patients. This may be attributed to a lack of scoping research or engagement with

key potential referrers during the bid development stage, or immediately after the awarding

of funding. It may also be a function of partners being uncertain about the durability of the

new service.

As a result of these and other common challenges, some projects have altered their scope.

From the case study visits, three of the projects (Leeds Teaching Hospital, Royal United

Hospital Bath and Western Sussex Hospitals) have made changes to their planned activities.

These changes are a response to challenges faced in delivering key activities. As such, they

are not inherently problematic as it allows projects to invest more resources in activities that

are delivering benefit. However, where projects make these more fundamental changes to

their activities, fewer or different outcomes will be delivered. All changes to scope need to be

cleared with Prostate Cancer UK.

A factor which may contribute to the apparent changes in delivery plans is that projects have

to agree key project management tools (the Project Implementation Plan and the Monitoring

and Evaluation plan) prior to their scoping work (and in some cases before their post-holder

has started). This is motivated by a desire to try and focus the projects on delivery after they

receive funding (a key step in addressing some of the delivery challenges outlined above).

But it means that projects are in a relatively embryonic phase of development when key

project management tools are agreed. This relates to a more general point about the

relationship between the programme management function at Prostate Cancer UK and the

projects (discussed below).

In general, projects comply with the monitoring system

Projects have exhibited a high degree of compliance in returning their monitoring forms. The

changes to the monitoring requirements made early in 2014 caused few problems: most

projects were either already collecting the data, could change their data collection approach

quite straightforwardly, or had not yet started project delivery. Where projects have displayed

dissatisfaction with the new data requirements the problems are typically isolated (for

example, a project may not feel that the requests for data on the content of delivery fits with

the work they are trying to do). The substance of the monitoring requirements therefore

seems appropriate and some projects have noted that the data collected will form an integral

part of their business case to commissioners and managers.

However, the timing of the monitoring returns is a cause of dissatisfaction. Several projects

noted that filling in the monitoring form on a monthly basis is time consuming – and there is

an opportunity cost to doing so (which may include reduced clinical support). The lesson

here may be to move to a more traditional quarterly monitoring system.

Projects’ self-evaluations are variable at this stage

Projects recognise the importance of evaluating the impact of their activities. Case study

projects reported that without robust output and outcome data, they are very unlikely to be

sustained. The approach taken of supporting projects to define their desired outcomes and

suggesting approaches to evaluating against these is also broadly supported.

However, in general, projects have not yet started to provide data on the outcomes they are

achieving. There are three main reasons for this:

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■ Few projects have progressed to the stage where they have delivered sufficient ‘activity’

to be able to assess what the outcomes of this are – their focus is on delivery.

■ Requiring projects to submit outcome data on a quarterly basis does not match project

delivery patterns and so outcome data are likely to be submitted as and when it is

collected.

■ Collecting outcome data often requires projects to monitor change over several months.

Some projects are aiming to change men’s behaviours and so an assessment of whether

this has been achieved will only be possible six months after the completion of the

intervention.

A couple of the more developed projects have also reported that they would have valued

being provided with a longer list of data collection tools that they could match with the

relevant indicator. (This challenge is partially addressed by the provision of a ‘menu’ of tools,

as was provided in the new evaluation guidance which was issued to projects).

Projects’ planning for sustainability requires attention

Most mature projects are starting to consider different routes to sustaining their activities;

there are likely to be major challenges to key projects continuing their activities. Case study

visits identified examples of good practice. This includes a project which is developing a

business case for continuing the funding of the post from mainstream resources. This

business case is made using the output data that the project team is currently reporting, as

well as outcome data on a key indicator (waiting times).

However, several common challenges are emerging. Interviewees with key individuals at

the case study sites (including commissioners) identified that there are threats to existing

services at present, and therefore funding for enhanced activities such as those being piloted

by projects is even harder to access. It was also reported that in some instances, the

relevant commissioner is not based locally (for example, NHS England commissions some of

the specialist follow-up services). The risk of post-holders ‘leaving early’ is a further

fundamental risk.

There are opportunities to develop a greater ‘sense of programme’

Interviewees from case study projects reported that while they valued the support they had

received from Prostate Cancer UK (particularly the educational opportunities and marketing

materials) they would have valued an even closer relationship with the charity. They

expressed a desire for more catch-up calls or face-to-face meetings. This would serve to

both strengthen oversight (and thereby delivery) and create opportunities for sharing learning

across the programme. On the latter point, several projects reported valuing the steps taken

so far (e.g. the linkedin page and the annual event) and expressed a desire for further action,

particularly in relation to sharing information about what (and how) the other projects are

doing.

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11 Recommendations

Based on the evidence gathered to date, the report concludes with a set of

recommendations for the programme management team specifically about this programme

and Prostate Cancer UK more generally in approaching its future programming.

11.1 Recommendations relating to the HSCP programme

There are nine recommendations relating to the current programme.

11.1.1 Programme management

Recommendation: Prostate Cancer UK should ask projects to re-validate / re-submit their

PIP after their scoping phase is completed.

Recommendation: The programme management team should establish a programme of

catch-up calls with projects (e.g. calling each project once per quarter); the time taken to do

this should be built into the resource needs of the programme.

Recommendation: Prostate Cancer UK should bring forward the telephone call to projects

about their plans for sustainability from six months before their completion to nine months

before completion. Programme management should ask projects to identify the steps they

have taken / plan to take to achieve the sustainability, as well as the key barrier(s) to doing

so, allowing steps to address this to be taken at an early stage. Prostate Cancer UK should

also be explicit about expectations on sustainability.

11.1.2 Programme building

Recommendation: The programme management team should circulate a short quarterly

newsletter to all projects. This should contain an update on the programme (including an

aggregation of the sorts of activities projects are carrying out, the types of challenges they

are addressing, and an update on progress at the programme level). Links to potential

support should also be provided, for example, educational resources and marketing

opportunities. Contact details for post-holders and project leads should also be shared.

Recommendation: As the programme matures, and projects start to generate more tools,

resources and findings about what is working for them, Prostate Cancer UK (supported by

ICF) should make efforts to gather, organise and make available this information to the

funded projects.

11.1.3 Monitoring, evaluation and compliance

Recommendation: The programme management team should re-emphasise to projects the

importance of / requirement for evaluation and in particular, data on outcomes achieved.

Recommendation: ICF should contact all projects prior to the next quarterly report to

ascertain what data projects will be submitting, and when outcome data are likely to become

available. Support to projects should also be based on the evaluation risk assessment in

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11.1.4 Project-focused recommendations

Recommendation: Projects should more proactively anticipate potential risks to delivery,

and do so from the bidding stage. Plans to address potential challenges should be

developed before they occur and be written up in a project risk register (which is part of the

quarterly monitoring reports).

Recommendation: Based on the in-depth case study research and review of the monitoring

forms for all projects, it is clear that projects should start to consider strategies for

sustainability and develop robust data collection practices and commitment to collecting

evaluative information at an early stage (scoping phase).

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11.2 Recommendations relating to future programming

There are six recommendations relating to future Prostate Cancer UK programmes.

11.2.1 Future programme design and management

Recommendation: In future programming and negotiations with funders, Prostate Cancer

UK should request that posts are funded for up to three years. The first six months of any

funded projects should be earmarked as a discrete phase of scoping work (which may / may

not be fully used); full delivery should not be expected in this period (although key outputs of

this work should be reported). This will allow projects to focus on developing their delivery

models (conducting research to inform design), and recruiting post-holders.

Recommendation: In future programming and negotiations with funders, Prostate Cancer

UK should emphasise the value of support for non-clinical staff, such as project managers

and evaluation support, by linking this resource input with the outcomes it is likely to

contribute to. Prostate Cancer UK should also highlight the consequences of failing to fund

project management using examples from funded projects.

Recommendation: In future programming, Prostate Cancer UK should consider providing a

hierarchy of support for projects which are larger or more complex in nature. This could

encompass direct funding for project management for these projects. This may also imply

funding fewer, larger projects – thereby allowing programme managers to develop more

‘hands on’ relationships with delivery organisations.

Recommendation: Future programmes should be more clearly ‘themed’ from the outset.

Themes should be linked to broader policy / campaigning work, e.g. tailoring provision for

specific ethnic groups. Programme activity can thereby act as an exemplification / set of

practical solutions to identified problems.

11.2.2 Future programme monitoring

Recommendation: In future programmes, Prostate Cancer UK should consider whether

output data are required on a monthly basis. If this requirement is driven by external

stakeholders, Prostate Cancer UK should consider advising these stakeholders that there is

a substantial resource implication – and consequent opportunity cost – to collecting this

information. Quarterly reports on project outputs are sufficient for most programmes of this

type. The expectation of quarterly outcome data could also be reduced to an annual or twice

yearly basis.

Recommendation: In future programmes, Prostate Cancer UK should avoid, if at all

possible, changing monitoring requirements mid-way through the programme delivery. A

range of stakeholders should contribute to the design of the monitoring system ensuring that

they aware of what is being collected from the outset.

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