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

Transcription

1 Evaluation of the Health and Social Care Professionals Programme Interim report Prostate Cancer UK July 2014

2 This page is intentionally blank

3 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) F +44 (0) michael.lawrie@icfi.com

4 Document Control Document Title Evaluation of the Health and Social Care Professionals Programme Interim report Job number 9677 Prepared by Checked by Fraser Battye, Michael Lawrie, Holly Krelle, Nahid Ahmad, Lucy Loveless 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.

5 Contents Executive summary... i Summary of the research...i Main findings...i Lessons learned... iii Recommendations... iv 1 Introduction Aims and objectives of the study Method overview This report Description of the HSCP programme Goals and operation of the programme Bids received and projects funded Analysis of funded projects NHS Fife Update since the last visit Implementation Outcomes and impacts Sustainability Concluding points St Michael s Hospice Update since the last visit Implementation Outcomes and impacts Sustainability Concluding points Leeds Teaching Hospitals NHS Trust Update since the last visit Implementation Outcomes and impacts Sustainability Concluding points Royal United Hospital Bath Update since the last visit Implementation Outcomes and impacts Sustainability Concluding points Western Sussex Hospitals NHS Trust Update since the last visit Implementation Outcomes and impacts Sustainability Concluding points North Bristol NHS Trust Update since last visit Implementation Outcomes and Impacts Sustainability Concluding points... 41

6 9 Analysis of annual returns Inputs Project outputs Outcomes reported to date Lessons learned Recommendations Recommendations relating to the HSCP programme Recommendations relating to future programming Annex 1 Annex 2 Annex 3 Annex 4 Annex 5 Annex 6 Annex 7 Annex 8 Annex 9 Annual reporting form completed by projects. Error! Bookmark not defined. Summary table of the programme... Error! Bookmark not defined. Summary of bids received... Error! Bookmark not defined. Summary table of projects rationales, activities and outcomeserror! Bookmark not defined Project evaluation status... Error! Bookmark not defined. Project-specific output data... Error! Bookmark not defined. Project-specific outcome data... Error! Bookmark not defined. Case studies of beneficiaries... Error! Bookmark not defined. How the programme is addressing the Movember statementserror! Bookmark not defined.

7 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. i

8 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 fourfifths 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 oneto-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 ii

9 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 selfevaluations 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. iii

10 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. iv

11 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. v

12 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 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 projects 1 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 s). 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 The programme s phases are described in section 2 of the report. 1

13 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 (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. 2

14 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). 3

15 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 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 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; 4

16 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 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. 5

17 2.2.1 Type and location of organisations funded The programme has involved three main rounds of commissioning so far. An additional subround 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. 6

18 3, 4, 5, Table 2.1 Number of bids received and awarded, by phase 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 Acute 16; Charitable 2; HB 3; CCG 2 CHST 2 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 Lon 4; East 3; S. Cen 2; Y&H 2; NW 4; Scot -2; SW- 2; WM 3; SE Coast 2; Wales 1 10 Acute trust 6; Charitable 2; CSU 1; Research partnership Acute 6; CCG 1; Charitable 1; CHST 1; HB 3 London 4; NW -1; Scotland 1; South central -2; SW 1; Y&H -1 East -1; Scotland - 2; NW 2; London 2; SW 1; S. Cen 2; Wales 1; SE Coast Acute 3; HB 1 Lon 1; Y&H 1; SE Coast 1; Scot Acute -12; CCG 1; Charitable 1; HB 2; Total 68 Acute 45; Charitable 7; HB 7; CCG 3 CHST 3; CSU 1; Research 1; SCN 1 East 2; Lon 2; NE 4; NW 1; Scot 1; S. Cen 1; SW 1; Wales 1; WM 1; Y&H 2 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 4 Acute 3; HB 1 Lon 1; Y&H 1; SE Coast 1; Scot 1 At least 12 Acute 8; CCG 1; Charitable 1; HB 2 38 (at a minimum) Acute 23; HB 6; Charitable 4; CCG 2; CSU 1; Research partnership 1; CHST 1 East 1; Lon 1; NE 4; NW 1; Scot 1; S. Cen 1; SW 1; Wales 1; WM 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 7

19 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 8

20 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 9

21 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 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 10

22 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 11

23 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 12

24 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. 13

25 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 14

26 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 postholder 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 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). 15

27 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 longerterm 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. 16

28 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 postholder 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 17

29 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 postholder 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 postholder 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 ). 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. 18

30 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. 4.1 Update since the last visit 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 19

31 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. 4.3 Outcomes and impacts 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 20

32 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 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. 21

33 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. 22

34 4.5 Concluding points 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. 23

35 5 Leeds Teaching Hospitals NHS Trust Funder and total funding: Movember, 64,338 Post: Community Nurse Specialist (1.0 FTE) Phase: 1 Start date: 11/11/2013 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. 5.1 Update since the last visit 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: 24

36 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 s 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 25

37 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 patientspeak 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. 5.3 Outcomes and impacts 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. 26

38 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 selfmanagement; 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). 5.5 Concluding points 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. 27

39 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. 6.1 Update since the last visit 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 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 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 28

40 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 postholder 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 postholder 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. 29

41 6.3 Outcomes and impacts 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 30 th of April I wasn t due to see the consultant until 31 st 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 3 rd 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 30

42 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 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 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. 6.5 Concluding points 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 31

43 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. 32

44 7 Western Sussex Hospitals NHS Trust Funder and funding: Royal Mail, 44,362 Post: Clinical Nurse Specialist Phase: 1 Start date: 4/10/2013 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. 7.1 Update since the last visit 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. 33

45 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 postholder 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. 34

46 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. 7.3 Outcomes and impacts 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 35

47 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. 7.5 Concluding points 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. 36

48 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 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 37

49 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 framework 7 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 38

50 There is a further challenge in getting more men to sign up to and follow the six week groupbased 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 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 He has since had radiotherapy 39

51 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 40

52 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. 8.5 Concluding points 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. 41

53 9 Analysis of annual returns 9.1 Inputs This section provides analysis of the data projects submitted in their annual monitoring return including inputs, outputs and outcomes. 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 as of July 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). 42

54 Table 9.1 Organisation Phase 1 Cash and in-kind contributions from host organisations Cash support from Prostate Cancer UK (including equipment fund) Additional cash contributions In-kind contributions Total additional contributions Christie Foundation (phase 1) 64, , ,160 Leeds Teaching Hospital 64,338 1, ,500 NW London CSU 189, ,000 44,692 NW London Trust 87,300 1,800 1,194 2,994 Royal Marsden 314, ,659 17,659 Royal United Hospital Bath 54, St Michael's Hospice 69, UCL Partners / London Cancer 76, ,200 1,700 UCAN 135, Western Sussex Trust 44, Total phase 1 1,099,010 4,692 68,283 72,975 Phase 2 NHS Lothian 76, N. Bristol NHS Trust 69, ,036 1,186 Wirral CCG 134, The Hospice of St Francis 73, Barts Health & St Josephs 119, , ,000 9 June 2014 quarterly report in-kind contributions were: Spend to date prior to that was recorded as 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. 43

55 Organisation Cash support from Prostate Cancer UK (including equipment fund) Additional cash contributions In-kind contributions Total additional contributions Northamptonshire Trust 66, BCUHB (Betsi Cadwaladr) 67, Brighton & Sussex University hospital 39, NHS Fife 38, , ,700 Christie Foundation (Phase 2) 67, , ,450 Guy's & St Thomas' 84, , ,400 University of Southampton 91,846 1, ,754 Total phase 2 929,392 1,911 10,661 12,572 The Pennine Acute Hospital Trust 67, The Hillingdon Hospital Trust 67, The Royal Surrey Foundation Trust 67, Tayside Health Urology Cancer Group 67, Total phase , Total phase 1, 2 and 2.5 2,296,402 6,603 78,944 85, 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, 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

56 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 numbers The dip in this cumulative frequency chart is a result of the new monitoring requirements put in place in March 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). 45

57 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 46

58 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. 47