RCN Development Programme: Transforming Dementia Care in Hospitals Evaluation Report Supported by Contents Key findings of the External Evaluation .......................................................................................... 5 1. Introduction ................................................................................................................................ 9 1.1 Context .................................................................................................................................. 9 1.2 The RCN development programme .................................................................................... 10 1.2.1 Overview of programme ......................................................................................... 10 1.2.2 Key programme aims and objectives:..................................................................... 11 1.2.3 Intended learning outcomes:.................................................................................. 11 1.3 2. Participating NHS Trusts ................................................................................................. 12 The Evaluation ...................................................................................................................... 13 2.1 The Evaluation Team........................................................................................................... 13 2.2 The Evaluation Design ......................................................................................................... 13 2.3 Online questionnaire .......................................................................................................... 15 3. 2.3.1 Collation of outcomes for staff, patients and carers .............................................. 15 2.3.2 SPACE principles...................................................................................................... 15 2.4 Site visits ......................................................................................................................... 17 2.5 Programme participants ................................................................................................ 18 2.6 Motivations for applying for the programme ................................................................ 20 How course participants rated the programme ................................................................... 21 3.1 Development Days ......................................................................................................... 21 3.1.1 Networking................................................................................................................... 21 3.1.2 Sit and See Tool ............................................................................................................ 22 3.1.3 World Café Event ......................................................................................................... 22 4. 3.2 Site visits ......................................................................................................................... 22 3.3 Programme facilitation .................................................................................................. 23 Direct Benefits identified from Programme participation ................................................... 24 4.1 General Impact of participation in the programme ....................................................... 24 4.2 Tools for Change............................................................................................................. 24 4.2.1 Observational tools ...................................................................................................... 24 4.2.2 Triangle of Care ............................................................................................................ 25 Page 1 4.2.3 SPACE principles........................................................................................................... 25 4.3 5. 6. 7. 8. Direct Benefits of Participating ...................................................................................... 25 4.3.1 Provided focus and structure for effective change ................................................ 25 4.3.2 Networking.............................................................................................................. 26 4.3.3 Facilitated partnership working within Trusts ........................................................ 27 4.3.4 Helped to validate changes ..................................................................................... 28 4.3.5 Boosted confidence and morale ............................................................................. 28 4.3.6 Raised the profile of dementia care ....................................................................... 29 4.3.7 Gave a sense of achievement ................................................................................. 29 4.3.8 Helped to develop carer engagement .................................................................... 30 4.3.9 Recommendations to others .................................................................................. 30 Lessons for future Development Programmes ..................................................................... 31 5.1 Networking with other Trusts ........................................................................................ 31 5.2 Wiki site .......................................................................................................................... 32 5.3 Tailoring the content of development days ................................................................... 32 5.4 Location of development days ....................................................................................... 32 5.5 Other suggestions .......................................................................................................... 32 Achievement of programme objectives and learning outcomes ......................................... 34 6.1 Programme Objectives ................................................................................................... 34 6.2 Learning Outcomes ........................................................................................................ 35 Progress on SPACE Principles ................................................................................................ 37 7.1 SPACE principle scores ................................................................................................... 37 7.2 Improvement in SPACE scores ....................................................................................... 40 7.3 Perceptions of SPACE scores .......................................................................................... 44 Progress on Trust Dementia Action Plans............................................................................. 46 8.1 Overview of achievements ............................................................................................. 46 8.2 Case Studies of Innovation ............................................................................................. 46 8.3 Factors affecting the achievement of objectives ........................................................... 51 8.3.1 Staff engagement .................................................................................................... 52 Page 2 9. 8.3.2 Funding ................................................................................................................... 54 8.3.3 Availability of space and staff time ......................................................................... 54 8.3.4 Difficulties with carer engagement......................................................................... 54 Considerations for Future programmes ............................................................................... 55 9.1 Programme facilitation ....................................................................................................... 55 9.2 Programme content ............................................................................................................ 56 10. Maintaining Change ........................................................................................................... 58 11. Summary and Conclusion .................................................................................................. 60 Appendix 1: Objectives fully achieved by participating Trusts ..................................................... 63 Appendix 2: List of supporting documents submitted by participating Trusts ............................ 67 Page 3 Lead authors Dawn Brooker; Sarah Milosevic; Simon Evans; Christine Carter; Mary Bruce & Rachel Thompson Acknowledgements The evaluation team would like to thank all the Trusts and staff who participated in the evaluation for making us feel so welcome on our visits to each Trust and for showcasing excellent examples of the work they have achieved. We would also like to thank the Carer Representatives: Frank Arrojo, Louise Langham, Helen Taylor and Jean Tottie, for their valuable input and insight on all visit days. Thanks to Ruth Burey, Val Hills and Christine McKenzie from the RCN learning development team for their support in facilitating the programme. Also many thanks to Rachel Thompson and Nikki Mills at the RCN for being so open in their approach to this evaluation. The on-going support from Michael Watts and Jennifer Bray from the Association for Dementia Studies was very much appreciated Finally thanks to the RCN Foundation and the RCN for their support in funding the delivery and evaluation of this programme. Association for Dementia Studies University of Worcester Henwick Grove Worcester WR2 6AJ Tel: +44 (0) 1905 542296 Email: dementia@worc.ac.uk Page 4 Key findings of the External Evaluation Between March 2013 and March 2014, the RCN worked with senior clinical nurse leads responsible for dementia care within nine NHS Trusts providing acute hospital care. The project aimed to improve the experience of care for people with dementia and their carers in hospital by enhancing clinical practice. The following Trusts were successful in gaining a place on the programme: Basildon & Thurrock University Hospitals NHS Trust (Basildon Hospital) Cambridge University Hospital NHS Foundation Trust (Addenbrookes Hospital) Nottingham University Hospital Trust (City Campus) Royal Devon & Exeter Foundation Trust (Wonford Hospital) Kings Lynn NHS Foundation Trust (The Queen Elizabeth Hospital) The Shrewsbury & Telford Hospitals NHS Trust (Princess Royal Hospital and Shrewsbury & Telford Hospital) Salford Royal NHS Foundation Trust Walsall Healthcare NHS Trust (Manor Hospital) Betsi Cadwaladr University Health Board (Ysbyty Glan Clwyd) The Association for Dementia Studies (ADS) at the University of Worcester was commissioned to undertake an external evaluation of the effectiveness of the programme in developing practice and supporting improved outcomes for people with dementia, family carers and staff. How the programme was received within Trusts 1. Providing support to clinical nurse leads in acute hospitals through a structured development programme was a catalyst to achieving positive outcomes for patients and family carers of people with dementia. 2. Involvement of senior nursing staff, including dedicated dementia posts, was essential in ensuring that changes were relevant, credible and visible. Page 5 3. The inclusion of senior management from outside the nursing directorate enabled changes to have broader influence and raised the profile of dementia care. 4. Achievements appeared most successful where project teams had support from the Trust/senior management, which was filtered through to dementia champions working directly within clinical settings. 5. All nine Trusts reported that the objectives of the development programme were either fully or partially achieved. 6. The majority of Trusts felt learning outcomes were ‘greatly’ or ‘partially improved’. Most improved areas were: developing effective networks, skills for leading and managing change, and supporting partnership working. 7. 85% of actions identified by Trusts were fully or partially achieved through the course of the development programme. Each Trust made significant progress in improving care for patients with dementia in hospital. 8. Over the course of the programme, all Trusts showed a statistically significant increase in scores for each of the 5 overarching RCN SPACE principles [1] (as rated on a 5 point scale). The average increase was 45%. 9. Most improved overarching areas were: ‘Partnership working with carers’ (53%), ‘Care plans which are person centred and individualised’ (51%) and ‘Environments that are dementia friendly’ (50%). 10. The Triangle of Care for dementia [2] and observational tools, including Sit and See [3] and Dementia Care Mapping [4], were useful in assessing quality of care and progressing carer engagement. Outcomes for participants and NHS staff Involvement in the development programme offered a number of benefits for staff including: 1. Providing a focus and structure for making changes. 2. Acting as a ‘catalyst’ in moving developments forward at a faster rate. 3. Equipping participants with strategies and confidence to change practice 4. Encouraging partnership working and raising the profile of dementia care within organisations. Page 6 5. Enabling useful networking opportunities and sharing of ideas to support practice. 6. Helping to validate changes in practice. 7. Boosting morale and confidence of staff as well as offering a sense of achievement. 8. Helping to support staff to develop engagement with family carers. Many participants in the programme trained staff within their Trusts in various aspects of dementia care and were encouraged to evaluate this in practice. Examples of improvement included: One Trust surveyed training participants and questionnaires from 12 respondents showed 83% found the training helpful and 83% thought their practice had changed as a result of attending training. In another evaluation of training for 78 non-clinical staff, participants reporting they knew ‘enough’ or ‘a lot’ about dementia rose from 8% pre-training to 99% posttraining. In one Trust, following training of 190 staff in mental health and dementia awareness, a number of actions were identified such as involving relatives in patients’ care and using the Abbey Pain assessment tool 63% of staff who had received dementia training across two wards said they were ‘very confident’ or ‘confident’ in their skills for caring for patients with dementia In one Trust, among 607 staff trained in dementia, measures of confidence in dementia showed statistically significant improvements from 11% pre training to 57% post training and knowledge in dementia scores indicated a significant increase from a median score of 12 – 14. Outcomes for patients and carers It is difficult to measure outcomes for patients and family carers as part of routine practice. However, the majority of participating Trusts managed to do this using a range of measures. Examples of improvements included: One Trust surveyed patients and reported that 100% of respondents felt involved in their care. In one Trust the use of personal profiles for relevant patients increased from 26% to 66% over a 12 month period. Page 7 In another hospital, dementia care mapping was used and showed significantly higher ‘well-being’ scores for those supported in a dementia activity room, compared with usual care. In one hospital area there was a reduction in complaints relating to dementia care from 10 to 1. One Trust surveyed families and 100% of carers felt their relatives were being treated with dignity and respect. In one Trust 63% of carers were offered a carers information pack as a result of the programme. Conclusions and next steps All nine Trusts felt that organisations should invest in development programmes such as this to support improvements in the experience of care for people with dementia and their families. Four key areas were recommended for future consideration: 1. Improving opportunities for networking between Trusts to spread good practice 2. Improving access to on-line resources to support learning 3. Ensuring content of development programmes is tailored to support individual learning needs 4. Developing regional development programmes Page 8 1. Introduction 1.1 Context Within acute hospitals, older people occupy some 60% of beds and of these, 40% may have dementia [1]. Patients with dementia in acute hospitals experience poorer outcomes for all types of admission, stay longer in hospital and are more likely to be discharged to a care homes rather than returning home [2, 3, 4]. In 2011, the first National Audit of Dementia [5] identified a mismatch between hospital policy and frontline practice and that the hospital workforce receives little dementia specific training. Whilst old age liaison psychiatry services can greatly assist in improving quality outcomes for people with dementia [6] there is also a need for a consistent response from acute hospital staff to develop a culture of care where these patients needs are met as part of routine practice. In 2013, the second report of the National Audit of Dementia [7] found that, while some improvements have been made in hospital care for patients with dementia, there was still a lack of training in two out of five hospitals, and called for further education programmes and for specialist dementia nurses to be employed in all hospitals. Since 2011 the RCN has been active in facilitating a national project supported by the Department of Health, to influence and guide the provision of dementia care in acute care settings. A survey of health care professionals [8] sought to identify examples of best practice that help to promote dignity, improve understanding and enhance the delivery of care. Findings from over 700 staff respondents indicated that a number of approaches are required to support improvements in care. However, most important was felt to be the involvement of family carers, and the training and development of staff. Staff respondents emphasised the importance of having support from the Trust board, backing from senior nurses, mental health liaison and dedicated dementia care posts to provide leadership. Barriers to delivering good quality care included pressure of existing workload and insufficient staffing, movement of patients between wards, inappropriate environment in terms of lighting and space, and a lack of funds to support and drive improvements. A subsequent survey of people with dementia and carers [9] was also carried out to identify the most important factors from a patient perspective of improving hospital care. A total of 1,484 responses were received with more than 90 per cent of respondents considered the following as very important: Page 9 education and training of staff involvement of family carers clear care plan, identifying needs availability of a specialist skilled assessment. 1.2 The RCN development programme It was within this context that the RCN Development Programme was conceived, funded and supported by the RCN Foundation. It builds on the work carried out during 2011/12 by the RCN on improving dementia care in general hospital settings [10], funded by the DH. http://www.rcn.org.uk/development/practice/dementia/rcn_dementia_project Under the leadership of Rachel Thompson the project aimed to improve the experience of care for people with dementia and their carers in hospital by developing nursing leadership in dementia care within NHS Trusts providing Acute Hospital Care. During December 2012 hospital sites from across the England and Wales were invited to apply for a place on the development programme. Applicants were asked to submit an initial action plan based on areas for improvement and were required to demonstrate: Support from their Trust Board including the Director of Nursing Willingness to commit to a series of development days Evidence of commitment to the principles of engagement/collaboration with patients and carers. Following a selection process in February 2013, places were offered to nine NHS Trusts who nominated three key clinical leads with responsibility for dementia care in their organisation. 1.2.1 Overview of programme The programme was made up of the following components: An opening event for candidates on 25th March 2013 to which each organisation was invited to bring 2-3 additional clinicians/leaders/stakeholders 2 development days (11 June and 3 December 2013) at RCN HQ to be attended by the 3 clinical leads from each organisation Page 10 A site visit in September/October 2013 whereby Trust Board members, patient/carer groups, local participants and staff teams were invited to meet the RCN facilitation team and carer representative A final conference event (20 May 2014) to showcase the outcomes of the service improvements 1.2.2 Key programme aims and objectives: To improve the experience of care for people with dementia and their families within hospital settings by: supporting participants to develop effective partnerships with patients and carers and other key professions and organisations involved in the delivery of care facilitating the learning and development of staff in delivering positive approaches to dementia care in the hospital setting supporting participants to develop practice and lead on quality improvements in the care delivered for people with dementia and their families facilitating the evaluation of outcomes of quality improvement initiatives which focus on patient/ carer experience 1.2.3 Intended learning outcomes: 1. Identify, critically assess and develop a range of best practice and interventions, that support good dementia care in hospital settings 2. Develop a strategic approach to partnership working that demonstrates the understanding of the role of carers, families and friends and principles of engagement 3. Identify and utilise knowledge and skills for effective influencing to lead and manage change to support and develop practice 4. Work in partnership with key stakeholders to develop, implement and evaluate local action plans to support quality improvement initiatives in dementia care 5. Implement and embed the principles of the new ‘Triangle of Care for dementia’ into practice to support partnership working Page 11 6. Evaluate and consider appropriate patient outcome measures to evaluate the quality of care experienced by people with dementia and their carers/families with particular regard to equality of access to general care services 7. Collate and analyse patient outcome measures to evaluate quality of care as experienced by people with dementia and their carers/families 8. Work to develop effective networks both internally and externally for the dissemination and sharing of good practice 1.3 Participating NHS Trusts The nine NHS Trusts and their hospital sites selected to take part in the programme were: Basildon & Thurrock University Hospitals NHS Trust (Basildon Hospital) Cambridge University Hospital NHS Foundation Trust (Addenbrookes Hospital) Nottingham University Hospital Trust (City Campus) Royal Devon & Exeter Foundation Trust (Wonford Hospital) Kings Lynn NHS Foundation Trust (The Queen Elizabeth Hospital) The Shrewsbury & Telford Hospitals NHS Trust (Princess Royal Hospital and Shrewsbury & Telford Hospital) Salford Royal NHS Foundation Trust Walsall Healthcare NHS Trust (Manor Hospital) Betsi Cadwaladr University Health Board (Ysbyty Glan Clwyd) Page 12 2. The Evaluation 2.1 The Evaluation Team This external evaluation of the of the RCN Foundation programme ‘Transforming dementia care in hospital’ was undertaken by the Association for Dementia Studies (ADS) at the University of Worcester. ADS is a specialist team that brings a broad range of relevant experience and knowledge to this evaluation including expertise in dementia care, clinical practice, academic leadership, patient and user engagement, qualitative and quantitative research methods, and dissemination to diverse audiences. The team presented a detailed breakdown of their proposed evaluation methods and were engaged by the RCN in October 2013 and completed in April 2014. Overall project management at ADS was provided by Professor Dawn Brooker, Director of the Association for Dementia Studies. An ADS/RCN Evaluation project team was established in October 2013 consisting of Dawn Brooker, Professor of Dementia Studies, Overall project management Mike Watts, Senior Administrator, Project administration Simon Evans, Principal Research Fellow, Evaluation Lead Christine Carter, Senior Lecturer, Site evaluator Mary Bruce, Senior Lecturer, Site evaluator Sarah Milosevic, Research Assistant, on-line survey, site evaluation and data analysis and management The evaluation also benefited from the Steering Group that was established by the RCN and chaired by Rachel Thompson. This group met using telephone conferencing, on a regular basis (usually monthly) throughout the project. ADS provided progress reports against key milestones to the steering group throughout the life of the project. The project was given approval by an ethics committee at the University of Worcester. 2.2 The Evaluation Design The final design was made in negotiation with the RCN Steering group. The initial general approach was to build an electronic survey around the key indicators. This was completed as an on-line survey by course participants. In addition, independent site visits were undertaken by senior lecturers with many years’ experience of working in dementia care in hospitals. This had the benefit of triangulating the self-assessment data with other data forms to provide a richer data set. Evaluation was based on Page 13 collation of staff, patient and carer outcomes from participating hospitals and changes in practice. This included analysis of evidence submitted by each participating hospital, perceived changes, and delivery of action plans. The following timeline details key events in the development programme and programme evaluation: 25th Mar – development programme opening event for candidates Mar 2013 11th Jun – programme development day Jun 2013 Site visits to Trusts by RCN facilitation team and Carer Representative Sep 2013 3rd Dec – programme development day Oct 2013 Dec 2013 18th Dec – launch of online survey 15th Jan – deadline for online survey Jan 2014 20th May – final conference event to showcase outcomes of service improvements 31st Jan – first evaluation site visit Feb 2014 7th, 13th and 28th Feb - evaluation site visits Mar 2014 7th, 14th, 27th and 28th Mar evaluation site visits Apr 2014 17th Apr – final evaluation site visit Publication of evaluation report May 2014 20th May – presentation of evaluation findings at conference Page 14 2.3 Online questionnaire An online questionnaire was administered to course participants, with one questionnaire completed per Trust. The questionnaire was designed to assess the impact of the development programme and gain feedback regarding the programme from participants. The following areas were explored in the questionnaire: The Trust’s motivation for applying for the development programme The extent to which participants felt the objectives and learning outcomes of the programme had been achieved The project team’s experiences of different elements of the programme, including the development days, site visits by the RCN and overall programme facilitation The extent to which participants felt the objectives set out in their own action plan had been achieved in their Trust, including factors which helped or hindered the achievement of these objectives The use of tools such as the Sit and See and the Triangle of Care assessment tool Additional outcomes or benefits of the development programme Suggestions as to how the development programme could be improved 2.3.1 Collation of outcomes for staff, patients and carers Course participants were asked to provide evidence of measured outcomes for staff, patients and carers. For example, if delivering training was in the action plan, participants could aim to demonstrate changes in knowledge and attitudes amongst staff. 2.3.2 SPACE principles The SPACE principles are a set of five principles for the care of people with dementia in hospital settings, developed by the RCN and a range of stakeholders in collaboration with people with dementia and carers [10]. A checklist for each principle provides a set of sub-statements which can be used to assess progress and identify areas for further development: 1. Skilled staff who are informed and have enough time to care Page 15 - 2. 3. 4. 5. Good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication - Training is available to all staff based on an analysis of training needs - Training includes the perspectives of people with dementia and carers - Identified clinical leads for dementia are available e.g. dementia specialists/nurses, mental health liaison, dementia champions - Careful consideration of staffing levels to ensure appropriate skill mix, ratio and numbers Partnership working with carers - Process in place for the recognition and assessment of carers needs - Involvement of families/friends in assessment, care planning and decision making, including discharge planning - Flexible visiting for carers - Flexible approaches to care which include and involve carers i.e. direct involvement where requested - Support is available for carers e.g. support groups, carer leads etc. Assessment and early identification of dementia - Assessment and early identification of dementia - Skilled knowledgeable practitioners available to support assessment e.g. dementia specialist, mental health liaison - Clear delirium protocols are in place - Clear dementia pathway is in place across services - Clinical reviews of antipsychotic medication Care plans which are person-centred and individualised - Routine gathering of personal life story information using an agreed template - Person with dementia and/or carers involved in care planning - Use of mental capacity assessments and advance care planning to inform care - Use of dementia appropriate tools e.g. assessment of nutrition, pain, function, risk etc. - Support and activity is available for rehabilitation and maintenance of function e.g. physiotherapy, occupational therapy Environments that are dementia friendly - Policies are in place to ensure minimal moves between wards - Appropriate lighting and floor covering is in place - Aids are available for orientation and visual stimulation e.g. clocks, signage, pictures etc. Page 16 - Adequate space and resources are available to support activity and stimulation Availability of activity coordinators and/or trained volunteers to support activity and pastoral care The programme facilitation team asked course participants to complete a scale based on the SPACE principles at the beginning and middle of the programme, in June and November 2013. This scale was also included in the online questionnaire (January 2014) in order to obtain a third measure for comparison. For each principle, participants rated the extent to which the five sub-statements were achieved in their Trust, using the following five-point scale: Level 1: I do not see these things happening Level 2: There is an awareness of this but little action Level 3: This happens some of the time but not always Level 4: This happens most of the time but not always Level 5: I see these things happening all the time 2.4 Site visits Site visits were carried out by a Senior Lecturer and Research Assistant from the University of Worcester, and an independent Carer Representative. The Carer Representative visiting each Trust had previously taken part in the site visit by the RCN to the same Trust as part of the programme. Site visits comprised an initial discussion with programme participants around a clinical based scenario of a patient with dementia and their carer, which enabled participants to share examples of work they had achieved from their action plan. Further bespoke questions were developed by the evaluation team based on the results of the questionnaire each Trust had completed. Following the discussion the evaluation team visited the ward or unit where changes had been implemented. The team were also able to meet and have discussions with carer representatives, volunteers and key staff members in some of the Trusts visited. The site visit concluded with a discussion focusing on the impact of the development programme on the Trust. A typical timetable for site visits was as follows: Page 17 11 – 12 Discussion with programme team based around clinical scenario, focusing on changes made as part of the Trust action plan 12 – 12.30 Lunch 12.30 – 1.30 Discussion with Carer Representatives 1.30 – 2.30 Visit to clinical area 2.30 – 3.30 Discussion with programme team focusing on the impact of the development programme 2.5 Programme participants There were 31 programme participants overall across the nine Trusts (see Table 1). Table 1: Role details of programme participants Project team Team 1 Role title Area of specialism Area of responsibility AD Quality & Nursing Matron Senior Sister Dementia Intensive Support Team Consultant Nurse Matron Quality Governance Older People Older People Dementia Whole hospital Older People’s wards Ward Whole hospital Dementia Care Care of the Elderly Ward Sister Ward Sister Senior Clinical Nurse Senior Sister Senior Sister Senior Sister Mental Health Liaison Practice Development Nurse Lead for Dementia Practice Development Matron Pain Nurse Specialist Care of the Elderly Stroke Medicine for the Elderly Medicine for the Elderly Medicine for the Elderly Medicine for the Elderly Mental Health Development Whole health board Care of the Elderly Wards in one DGH One ward One ward Department Ward Ward Ward Whole hospital Stroke Unit and Care of the Elderly Whole hospital Whole hospital Team 2 Team 3 Team 4 Team 5 CQUIN Older People and Dementia Pain Whole hospital Page 18 Ward Manager Senior Nurse Ward Matron Team 6 Team 7 Team 8 Team 9 Consultant Nurse for Older People Lead Nurse for Dementia/Delirium Dementia Specialist Nurse Matron Professor in Dignity in Care for Older People Associate Director for Patient Quality and Experience Dementia Project Lead Nurse Associate Director of Nursing Lead Nurse Older People and Vulnerable Adults Practice Development / Dementia Lead Interim Associate Director of Facilities Health Care of Older People Trauma & Orthopaedics Healthcare for Older People Healthcare for Older People Dementia Care / Older People Mental Health Ward Trauma & Orthopaedic wards Two wards Whole hospital Whole hospital Whole hospital Older People Dignity / Dementia Complex Ageing Whole hospital Quality and Patient Experience Corporate Dementia Corporate Nursing Whole hospital Nursing Whole hospital Practice Development Whole hospital Facilities Whole hospital The majority of programme participants were Senior Nurses, including Consultant Nurses, Matrons and Practice Development Nurses; project teams at five Trusts consisted solely of Senior Nurses. The involvement of senior nursing staff in the project team appeared to be essential in ensuring that changes were relevant, credible and visible. However the wider inclusion of senior management from outside the nursing directorate enabled changes to have broader influence and was helpful in terms of raising the profile of dementia care at a higher level. The achievement of the project appeared to be most successful where project teams had effective support from the Trust/senior management which was then filtered right through to dementia champions working directly within clinical settings. Page 19 The most common areas of specialism for course participants were ‘Older People’ (12 participants) and ‘Dementia’ (6 participants). On average participants reported that 10.6 hours per week were set aside for the development of dementia care in their role (range 0 – 37.5). However, 16 hours per week were on average spent (range 1.5 - 50) on the development of dementia care. On average, whole project teams had 38.8 hours per week set aside for the development of dementia care (range 0 – 112.5) and actually spent an average of 48.2 hours per week altogether on this area (range 4 – 120). 2.6 Motivations for applying for the programme All Trusts said that the following motivated them to apply for the dementia development programme: To increase knowledge and understanding in how to support quality improvements in dementia care To raise awareness and understanding of developments in dementia care within the organisation To develop confidence and competence of staff in leading and driving forward improvements in dementia care To develop practice in evaluating outcomes for people with dementia and their carers Seven Trusts (78%) said that they were motivated to apply for the programme to network/share ideas with others, and six (67%) to have the opportunity to work with the RCN. One Trust explained that they were motivated by the prospect of working with the RCN so that they could gain endorsement for the work they were already doing and support to further enhance this. Page 20 3. How course participants rated the programme 3.1 Development Days Overall participants rated the development days as being ‘very good’, with all development days rated as at least ‘fairly good’ by all participants (see Figure 1). The majority (56%) of programme participants reported that the development days fully contributed to the progression of their project, with only one Trust (11%) reporting that the development days did not contribute at all to project progression. In this case it was because it was felt that all project work was already being carried out prior to the programme. Figure 1: Overall ratings of the programme development days 90% 80% 70% 60% 50% Excellent Very good 40% Fairly good 30% 20% 10% 0% Day 1 (10 respondents) Day 2 (14 respondents) Day 3 (15 respondents) 3.1.1 Networking Networking and/or sharing ideas with other Trusts was consistently rated as being a key learning outcome on each development day, cited by 70% of participants on Day 1, 46% on Day 2 and 40% on Day 3. Page 21 3.1.2 Sit and See Tool Almost half (47%) of Day 3 participants rated the session on the Sit and See tool [11] as being a key learning outcome of the day, with 80% rating this session as ‘very’ or ‘fairly’ useful. However, during discussions it was raised that the Sit and See session was not helpful for some Trusts who were already aware of the tool. In addition, one Trust reported that the Sit and See session felt like a marketing opportunity for just one particular approach. 3.1.3 World Café Event The world café event on the third development day was particularly popular with programme participants, who commented that it was an excellent opportunity for them to network and share the work they had been doing with other Trusts. 3.2 Site visits The majority (56%) of participants reported that the site visits from the RCN fully contributed to the progression of their project, with only one Trust reporting that they did not contribute at all to project progression. Participants reported that the visits enabled them to evaluate and validate what they had achieved so far, and that they gained valuable feedback and advice which helped them to structure and focus future development. The site visits were generally thought to be a positive experience: ‘… the opportunity to sit back and reflect on all the work that has been done and get that feedback was really very good and boosted the morale’ One Trust described how involving the Trust board in the visit enabled them to gain valuable support for their work: ‘… it was a big statement to our board… the chief of staff, deputy director of nursing, etc. were there, hearing very good things, and that has cemented their support of what we’re doing’ However one Trust said that they would have found it more useful if they themselves had been able to visit another hospital site, and reported that the visit felt like the RCN was ‘checking up’ on their work. It was noted that few of the suggestions made by the RCN on the site visits had been taken up or planned for implementation by the Trusts by the time of the evaluation visits. Some of these suggestions may be acted upon over the longer term; however it may be useful to consider how these recommendations can be highlighted to Trusts more effectively. Page 22 3.3 Programme facilitation All Trusts reported that the facilitation of the development programme was ‘fairly’ or ‘fully’ flexible, supportive and enabling (see Figure 2). Figure 2: To what extent do you feel that the facilitation of the RCN development programme, including the site visit, was: Flexible Fully Supportive Fairly Not at all Enabling 0 1 2 3 4 5 6 7 8 9 Number of Trusts The support that programme participants received appears to have been a particular strength of the programme, with eight out of nine Trusts identifying that programme facilitation was fully supportive. This was backed up by the qualitative responses on the questionnaire, which particularly mentioned this aspect; for example: ‘Rachel has been a great support and inspiration’. It was identified that at times facilitation was perceived as too rigid in relation to networking opportunities although it was acknowledged that time constraints were an issue. Some participants felt that more participant autonomy in some sessions would have allowed them to network more effectively with other Trusts. Page 23 4. Direct Benefits identified from Programme participation 4.1 General Impact of participation in the programme It was generally reported that Trusts would have made the changes set out in their action plan if they had not been on the programme, but that they would have happened at a slower rate and may have been more problematic to implement. It was felt that the programme provided the focus and structure for Trusts to make changes, and supported actions through equipping participants with the strategies and confidence to change practice. In addition, it encouraged partnership working within organisations, provided networking opportunities, and helped to raise the profile of dementia care in Trusts. However, participants recognised other factors which had facilitated change aside from the programme, including support from senior staff within the Trust, and the implementation of dementia-related CQUIN targets. Externally, links with local groups and other hospitals, and the high national profile of dementia care (including the Dementia Action Alliance and National Dementia Strategy) were identified as helpful. In addition to the facilitation of change in Trusts, programme participants reported a number of ways in which the programme had a beneficial impact on themselves as individuals. For example, it boosted morale and confidence, gave participants a sense of achievement, and equipped them with the skills and strategies to implement further change in the future. 4.2 Tools for Change 4.2.1 Observational tools Five out of nine Trusts reported that they had used an observation tool to assess quality of care. In discussions on evaluation site visits, three Trusts mentioned using the Sit and See tool in particular, with one Trust using an in-house tool and another utilising Dementia Care Mapping. A further Trust reported that they planned to use the Sit and See tool to more formally evaluate the impact of the dementia training they had delivered. The Sit and See was viewed as being a useful tool which was ‘very powerful’ in enabling staff to question their practice, and in picking up very small details that often go unnoticed but can make a big difference to patient wellbeing. Trusts reported that they found the tool to be a way of highlighting positive work rather than just focusing on areas of bad practice. One Trust explained that using the Sit and See tool had enabled Page 24 the project team to give praise to staff who were delivering excellent care, which they felt was valuable as often nurses do not receive positive feedback. 4.2.2 Triangle of Care Four out of nine Trusts said that they had used the Triangle of Care assessment tool [12], and all who used it rated it as fairly (3 Trusts) or very (1 Trust) useful. One Trust explained that since the introduction of the Triangle of Care there had been more of a focus on ensuring staff identify and pay attention to the needs of carers. Another particularly valued being able to access the Triangle of Care document prior to its official launch, as this allowed the project team to quickly start addressing issues around carer engagement. 4.2.3 SPACE principles One Trust mentioned that the SPACE spider diagrams were very useful in assessing progress and identifying areas to focus on. The project team planned to continue to complete the spider diagrams every six months to keep focused on the changes they are aiming to implement. 4.3 Direct Benefits of Participating 4.3.1 Provided focus and structure for effective change The main benefit of the development programme reported by Trusts was that it provided them with a structure for change, and gave them focus and determination to achieve their objectives. Although work was being carried out around dementia care prior to the programme, it was reported that the programme was a ‘catalyst’, giving changes a new impetus and helping actions to be achieved more easily and quickly. Participants identified that the programme had an ‘invigorating effect’, inspiring them to consider new changes and helping them to keep motivated throughout the achievement of their project: ‘It’s kept up that enthusiasm for the year and a bit as well, which might have dwindled without a programme behind it’ Part of the success of the programme can be attributed to the fact that it encouraged Trusts to focus on one key project, which was effective as some participants reported that they had previously been carrying out small pieces of work in lots of different areas with no coherent structure: Page 25 ‘You could bet that if we were doing this as… individual projects on their own, they would have folded I think by now, because so much other, other work would have come in to take over that. And it’s because we’ve been part of this that it’s continued’ It may therefore be important to consider how to ensure the focus, commitment and enthusiasm for change is maintained following the end of the programme and the discrete project identified by each Trust. The process of setting out clear actions and milestones, and the knowledge that they would have to report back as part of the programme, gave participants the ‘energy’ and ‘momentum’ to push forward with changes. In particular, participants wanted to make sure that they had progress to share with other Trusts. The programme gave Trusts ‘a real sense of focus’, allowing them to think about dementia care in their organisation, and identify and focus on the areas in most need of improvement. ‘… it’s a framework that [has helped] me define what we needed to do, and given me direction as to where we needed to take the project…’ ‘It has been fantastic, because it made us sit down and think about what we wanted to do’ The structure provided by the programme was viewed as particularly valuable as this gave participants the confidence to implement new work through equipping them with strategies for change: ‘And the beauty of the course is… we’ve got ideas, but whereas before we’d be sitting thinking, “Oh that ain’t gonna work”… But now we’re thinking, “It is gonna work, these are the barriers, these are the people we need to get involved in it, this is when we’re gonna get it implemented by”, and I think… that structure has come… from this programme’ 4.3.2 Networking Programme participants felt that the opportunity to network with staff from other hospitals and find out about the work they were doing was very helpful. In some cases this motivated and reassured Trusts who had experienced a lot of challenges, as they found that other Trusts had experienced the same problems. Participants were able to share how they had overcome issues, which was beneficial to others on the programme. Networking also enabled participants to pick up new ideas which they felt they could implement in their own Trust: Page 26 ‘You hear things from other groups and you think well we could implement that, or that if we tweaked this with ours we could achieve that’ This helped participants to validate changes in their own Trust, as they were able to show senior managers that new initiatives had already been successfully implemented in other areas. Participants felt that sharing the changes they had implemented at the development days was highly motivating, as it enabled them to see that their work was innovative in some areas and also encouraged them to make further changes. Project teams reported that following the programme they feel able to contact other Trusts or staff at the RCN if they need help with a particular issue. The new relationship Trusts built with the RCN was valued, and some programme participants recognised that they are now more likely to access the expertise and resources around dementia care provided by the RCN, some of which they were not aware of prior to the programme. It was identified that obtaining information from other Trusts had previously been difficult, but that following the programme participants feel more able to contact one another and share ideas. 4.3.3 Facilitated partnership working within Trusts It was reported that participation in the programme brought Trust staff closer together as a team by allowing them time to work together and discuss plans for improvement. Having this mutual support and common goal was effective in facilitating change. ‘I think personally for me it’s that collaboration, working together as a close knit team. It’s been far easier to… get a sense of togetherness and cohesiveness… Before people had their own workstreams… I think everyone’s pulled together in the same way now’ As other staff within the Trust became interested in the work being carried out as part of the programme, programme participants were enabled to build networks within the Trust and engage more people in the changes. ‘I think what the programme’s given is you get a buy-in from other groups don’t you… the programme gives you a platform to buy into it. So porters and security and catering staff are interested in what’s going on’ Project teams explained that as colleagues started to see the benefits of the changes being rolled out for patients with dementia, they were keen to become involved. For example, programme teams reported developing links with specialist pain nurses, the nutrition team, the audiology department, porters, housekeepers, health care support workers, security staff and mental health teams. These additional staff members also Page 27 benefitted from the project team’s involvement in the programme: for example, programme participants reported that they were able to identify staff with an interest in dementia care and to cascade their learning throughout the Trust to colleagues. ‘[One of the support workers is] so enthusiastic about dementia care… which I wouldn’t have picked up if I wasn’t in this programme building up a network of champions. She would have been lost’ ‘It’s not necessarily [just] us who have learnt loads, but all the people around us’ One Trust identified that the programme motivated them to make greater contact with carers groups in the local area, which has made a big difference to the way the hospital is perceived by carers. Carers now know that the Trust are prepared to listen to and work together with them. 4.3.4 Helped to validate changes Programme participants reported that the programme gave status and ‘kudos’ to the changes they were implementing, as the fact that they were working with the RCN was seen as prestigious by colleagues and senior staff. The programme enabled project teams to gain support for changes, which helped them to overcome any barriers encountered and empowered them to challenge practice. Some participants reported that senior staff accepted changes more readily because the project teams had committed to achieving their action plan with the RCN, which gave the work credibility. In addition, one Trust reported that the programme had taught them to develop an evidence base for the changes they wanted to implement and had provided them with the tools to prove that changes they made had an impact on patients, carers and staff. This enabled them to validate their work and to use their knowledge to achieve further changes. 4.3.5 Boosted confidence and morale Successfully gaining a place on the programme boosted morale for some Trusts, who felt fortunate to be chosen to take part. Some participants explained that it was good to be involved in something positive at a time when there was a lot of negative publicity about the health service as a whole: ‘Just being picked by the RCN to be part of it was actually a very positive message for us’ Page 28 The realisation that other Trusts were experiencing the same problems gave programme participants confidence to tackle these issues and to implement changes. Project teams reported that they felt empowered to present their case for change to senior staff, and to challenge existing practice: ‘Our confidence has increased, nothing fazes us anymore!’ ‘The programme has supported us in having the strength… and the commitment to know that what you’re doing is for the greater good, and you just keep, keep going’ 4.3.6 Raised the profile of dementia care The programme gave participants the opportunity to raise the profile of dementia care within their Trusts. For example one project team explained that they were asked to provide updates on the programme to the Trust board, which allowed them to keep dementia care in the spotlight. Participants reported that as changes were implemented and senior Trust staff started to see the benefits, they began to publicise areas of good practice as good news stories. As previously mentioned, engaging staff throughout the Trust in the changes being made helped to raise dementia awareness across organisations. One project team described how this had resulted in a culture change in their Trust: ‘It’s when you get the daft phone calls… I had a phone call… “I’ve got to order some new drip stands. Can you tell me what’s dementia friendly?” And I thought, dementia friendly drip stands? (laughs)… So you know, rather than laughing and thinking what on earth are you on about, I actually phoned Stirling University… and they said, “Get something bright footed… that cannot be mistaken for anything else… So I went back to them… And now everybody says, “We’ve got the dementia friendly drip stands!”’ 4.3.7 Gave a sense of achievement Taking part in the programme appeared to be a very positive process for Trusts. It motivated programme participants through enabling them to look at what they had already achieved, and facilitated the implementation of further changes that made a clear difference to patients and staff. Some programme participants identified that they felt greater job satisfaction and pride following the changes that had been made as part of the programme. Page 29 4.3.8 Helped to develop carer engagement Trusts valued learning about carer engagement on the programme, as they recognised that this was an area where a big culture change was needed. One project team reported that they would not have engaged with carers to the extent they had if they had not been on the programme. They explained that local carers are now assured that the Trust are actively trying to engage with carers and have a positive plan to achieve this. It was recognised that increased partnership working with carers resulted in better care for patients with dementia, and fewer complaints from patients and relatives. 4.3.9 Recommendations to others The programme appears to have been beneficial to Trusts who started at a range of levels, as it allowed participants to look at what they had already achieved and identify how they could move forward with further changes. Programme participants valued the time the programme gave them to come together with colleagues to reflect on the work they had already achieved and discuss future plans, allowing them to ‘take stock and re focus’. All but one Trust said that they would recommend the development programme to colleagues, mainly as it provided focus for programme participants, and a structure for organisational improvement: ‘It makes you focus on your own organisation and where improvements can be made and makes you aware of good practice’ ‘Provides a framework for quality improvement in relation to dementia care’ ‘It has been a valuable exercise for the team members who have had the opportunity to think through a specific project and bring it to reality’ One Trust said they would not recommend the programme, as it did not provide enough time for networking. All Trusts agreed that organisations should invest in development programmes like this to support improvements in the experience of care for people with dementia and their families. Page 30 5. Lessons for future Development Programmes Four key areas for improvement were consistently identified through discussions with programme participants; these will be discussed in turn in this section. 5.1 Networking with other Trusts Networking was identified as a key benefit of the programme by participants; however there were a number of suggestions as to how this aspect of the programme could be improved. For example, few Trusts reported making lasting contacts with others as a result of attending the programme, and identified that this was mainly due to a lack of time available to network during the programme days. It was felt that the structure of the programme limited networking opportunities at times, particularly on the second development day when Trusts were asked to present their action plans. Some participants did not feel sufficient time was allocated for each presentation, which meant they had little idea of what other Trusts were doing and did not have the opportunity to present their own ideas. It was suggested that dedicating a whole day to the presentation of action plans and related discussions would have been helpful, particularly given that all Trusts planned to make changes in similar areas. It was also felt that holding a question and answer session following each presentation would be less confusing than participants writing down questions for each Trust. The ‘world café’ on the third development day was identified by Trusts as an excellent opportunity to network and share ideas, and it was suggested that more opportunities like this towards the beginning of the programme would have been beneficial. Some participants felt that the facilitation of the programme at times put limits on networking. For example, at the world café event participants were instructed to visit each stand for a set amount of time. It was suggested that it may have been useful for Trusts to have the autonomy to visit a limited number of stands they were interested in. At times some participants also felt that the strict timing of the presentation of action plans where some presenters were stopped mid-sentence was unhelpful. Having more freedom in the timetable of the development days for more natural networking could have been more effective than being directed to network. A number of programme participants said that it would have been very useful if they had been able to visit other Trusts as part of the programme to see examples of their work. This could also take the form of visiting centres of excellence in dementia care to Page 31 look at best practice. It was identified that this would need to be on an official programme day so that programme participants could justify time away from work. It was also suggested that linking up Trusts in pairs through a buddy system may have been beneficial. 5.2 Wiki site Accessing the Wiki site was identified as being problematic for a number of Trusts, which meant that they were unable to easily share their work with other programme participants or gain access to the resources on the site. As this would have been a valuable resource it would be useful to consider an alternative, more easily accessible platform for future programmes. 5.3 Tailoring the content of development days Some of the sessions on the development days were not useful to all Trusts. For example, the Sit and See session was particularly identified as not being beneficial for some Trusts who were already familiar with the tool. Programme participants suggested that it may have been helpful for the RCN to consult Trusts prior to the beginning of the programme to find out what they would most like to learn on the programme and whether there were any speakers they would particularly like to hear. It was also identified that the programme content could have been more responsive to the challenges participants reported on the first development day, as the issues raised were similar across all Trusts but were not specifically addressed later in the programme. 5.4 Location of development days Some participants reported that having to travel so far to attend the development days was tiring; however it was acknowledged that it would be difficult to identify a convenient location for everyone to attend. One suggestion was that the programme could be run regionally in the future: this would also facilitate the building of links between Trusts, as the fact that the Trusts in the initial programme were relatively far apart geographically made networking difficult. 5.5 Other suggestions It was identified that a mentor for each Trust to provide a regular point of contact and give bespoke support would have been beneficial for project teams. Having a mentor to visit at regular intervals would be helpful as this would provide independent input, and would mean any issues could be picked up and addressed early on. It was suggested that the mentor could be a member of RCN staff, or a previous participant of the programme. Page 32 A small number of Trusts felt that it would have been helpful to have clearer information from the RCN about the format of the programme and expectations for programme participants. Page 33 6. Achievement of programme objectives and learning outcomes 6.1 Programme Objectives All nine Trusts said that the objectives of the development programme were fully or partially achieved (see Figure 3): Figure 3: To what extent do you think each of the following objectives has been achieved as a result of the RCN development programme? Supporting you to develop effective partnerships with patients and carers and other key professions and organisations involved in the delivery of care Facilitating the learning and development of staff in delivering positive approaches to dementia care in the hospital setting Supporting you to develop practice and lead on quality improvements in the care delivered for people with dementia and their families Facilitating the evaluation of outcomes of quality improvement initiatives which focus on patient/carer experience 0 1 2 3 4 5 6 7 8 Number of Trusts Fully achieved Partially achieved Not at all achieved Participants commented that although in most cases the work they were doing around dementia care was already in progress prior to the RCN programme, the programme was a ‘catalyst’ or a ‘driving force’ in moving developments forward more quickly. It was also beneficial in equipping Trusts with a research based foundation to build upon, and with the tools to evaluate the work they were doing more effectively. Page 34 6.2 Learning Outcomes The majority of Trusts felt that they had greatly or partially improved in respect of all the learning outcomes of the programme (see Table 2). Most improved was Trust’s ability to develop effective networks internally and externally for the dissemination and sharing of good practice, with five Trusts reporting that they had greatly improved in this aspect. Least improved were Trusts’ abilities to evaluate, consider, collate and analyse appropriate patient outcome measures to evaluate the quality of care experienced by people with dementia and their carers/ families, with only one Trust reporting that they had fully achieved these objectives. Therefore, it may be useful for any future programme to include more content in this area. Table 2: As a team, to what extent do you feel you have improved in your ability to do the following as a result of the RCN development programme? Learning Outcome Identify, critically assess and develop a range of best practice and interventions which support good dementia care in hospital settings Develop a strategic approach to partnership working that demonstrates the understanding of the role of carers, families and friends and principles of engagement Identify and utilise knowledge and skills for effective influencing to lead and manage change to support and develop practice Work in partnership with key stakeholders to develop, implement and evaluate local action plans to support quality improvement initiatives in dementia care Implement and embed the principles of the new ‘Triangle of Care for dementia’ into practice to support partnership working Evaluate and consider appropriate patient outcome measures to evaluate the quality of care experienced by people with dementia and their carers/families with particular regard to equality of access to general care services Collate and analyse patient outcome measures to evaluate Trust response (no. of Trusts) Greatly Partially Not at all improved improved improved 3 6 0 3 6 0 4 4 1 3 6 0 4 4 1 1 8 0 1 7 1 Page 35 quality of care as experienced by people with dementia and their carers/families Work to develop effective networks both internally and externally for the dissemination and sharing of good practice 5 3 0 Page 36 7. Progress on SPACE Principles 7.1 SPACE principle scores Project teams from each Trust completed a scale based on the SPACE principles in June 2013, November 2013 and January 2014. This enabled the measurement of progress relating to each SPACE principle over this seven-month period. As can be seen from Figures 3-8, the average score for each overarching and individual SPACE principle was higher in November 2013 and January 2014 than the initial score in June 2013. Figure 4 shows the change in average score for each overarching SPACE principle, from June 2013 to January 2014. Figure 4: Average scores across each overarching SPACE principle Skilled staff who are informed and have enough time to care Partnership working with carers Jun-13 Assessment and early identification of dementia Nov-13 Care plans which are person centred and individualized Jan-14 Environments that are dementia friendly 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 Average score out of 5 Figures 4-8 show the change in average score for each individual SPACE principle, from June 2013 to January 2014. Page 37 Figure 5: Skilled staff who are informed and have enough time to care Good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication Training is available to all staff based on an analysis of training needs Training includes the perspectives of people with dementia and carers Jun-13 Nov-13 Identified clinical leads for dementia are available e.g. dementia specialists/nurses, mental health liaison, dementia champions Jan-14 Careful consideration of staffing levels to ensure appropriate skill mix, ratio and numbers 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 5 Average score out of 5 Figure 6: Partnership working with carers Process in place for the recognition and assessment of carers needs Involvement of families/friends in assessment, care planning and decision making, including discharge planning Jun-13 Flexible visiting for carers Nov-13 Flexible approaches to care which include and involve carers i.e. direct involvement where requested Jan-14 Support is available for carers e.g. support groups, carer leads etc. 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 Average score out of 5 Page 38 Figure 7: Assessment and early identification of dementia Assessment and early identification of dementia Skilled knowledgeable practitioners available to support assessment e.g. dementia specialist, mental health liaison Jun-13 Clear delirium protocols are in place Nov-13 Jan-14 Clear dementia pathway is in place across services Clinical reviews of antipsychotic medication 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 5 Average score out of 5 Figure 8: Care plans which are person centred and individualised Routine gathering of personal life story information using an agreed template Person with dementia and/or carers involved in care planning Use of mental capacity assessments and advance care planning to inform care Jun-13 Nov-13 Use of dementia appropriate tools e.g. assessment of nutrition, pain, function, risk etc. Jan-14 Support and activity is available for rehabilitation and maintenance of function e.g. physiotherapy, occupational therapy 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 Average score out of 5 Page 39 Figure 9: Environments that are dementia friendly Policies are in place to ensure minimal moves between wards Appropriate lighting and floor covering is in place Aids are available for orientation and visual stimulation e.g. clocks, signage, pictures etc. Jun-13 Nov-13 Adequate space and resources are available to support activity and stimulation Jan-14 Availability of activity coordinators and/or trained volunteers to support activity and pastoral care 0 0.5 1 1.5 2 2.5 3 3.5 4 Average score out of 5 7.2 Improvement in SPACE scores All Trusts participating in the programme showed an increase in their overall SPACE scores (as rated on a 5-point scale - see Section 2.3.2) between June 2013 and January 2014, with an average increase of 45%. Table 3 shows that the increase in scores for each of the five overarching SPACE principles during this period was statistically significant. Table 3: Percentage increase in score across all participating Trusts for each SPACE principle from June 2013 to January 2014, with statistical significance stated % increase in score Statistically significant?1 Skilled staff who are informed and have enough time to care 40% Yes Good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication 52% No Training is available to all staff based on an analysis of training needs 54% Yes SPACE principle 1 A Wilcoxon Signed-Ranks test was carried out to determine whether the changes in score for each SPACE principle were statistically significant at p > 0.05 Page 40 Training includes the perspectives of people with dementia and carers 16% No Identified clinical leads for dementia are available e.g. dementia specialists/nurses, mental health liaison, dementia champions 28% No Careful consideration of staffing levels to ensure appropriate skills mix, ratio and numbers 59% Yes Partnership working with carers 53% Yes Process in place for the recognition and assessment of carers needs 69% No Involvement of families/friends in assessment, care planning and decision making, including discharge planning 48% Yes Flexible visiting for carers 46% Yes Flexible approaches to care which include and involve carers i.e. direct involvement where requested 28% Yes Support is available for carers e.g. support groups, carer leads, etc. 84% Yes Assessment and early identification of dementia 32% Yes Assessment and early identification of dementia 24% Yes Skilled knowledgeable practitioners available to support assessment e.g. dementia specialist, mental health liaison 28% No Clear delirium protocols are in place 46% Yes Clear dementia pathway is in place across services 65% Yes Clinical reviews of antipsychotic medication 13% No Care plans which are person centred and individualised 51% Yes Routine gathering of personal life story information using an agreed template 50% Yes Person with dementia and/or carers involved in care planning 78% Yes Use of mental capacity assessments and advance care planning to inform care 70% Yes Use of dementia appropriate tools e.g. assessment of nutrition, pain, function, risk etc. 36% Yes Page 41 Support and activity is available for rehabilitation and maintenance of function e.g. physiotherapy, occupational therapy 32% Yes Environments that are dementia friendly 50% Yes Policies are in place to ensure minimal moves between wards 70% Yes Appropriate lighting and floor covering is in place 42% Yes Aids are available for orientation and visual stimulation e.g. clocks, signage, pictures etc. 33% Yes Adequate space and resources are available to support activity and stimulation 47% Yes Availability of activity coordinators and/or trained volunteers to support activity and pastoral care 65% Yes Although all scores increased over the seven-month period, percentage increase in score was variable, ranging from 13 - 84%. The most improved overarching areas were respectively ‘Partnership working with carers’ (53%), ‘Care plans which are person centred and individualised’ (51%) and ‘Environments that are dementia friendly’ (50%). The most improved individual areas are listed in Table 4, with examples of relevant work achieved by Trusts: Page 42 Table 4: Most improved individual areas from the SPACE principles SPACE principle (% increase in score) ‘Support is available for carers e.g. support groups, carer leads, etc.’ (84%) ‘Person with dementia and/or carers involved in care planning’ (78%) ‘Policies are in place to ensure minimal moves between wards’ (70%) Examples of work achieved in each area Identification of key staff as a point of contact for carers, who provide support, advice and signposting Leaflets, posters and information boards for carers publicising where they can get support Implementation of flexible visiting for carers Emphasis on carer engagement in care pathways and staff training Promotion of the use of the ‘This is Me’ document or similar to help plan patients’ care Increased involvement of carers in care planning, and acknowledgment that carers are the experts in their relative’s care Formal consideration of whether and how carers want to be involved in the care of their relative while they are in hospital Minimisation of patient moves: new policies of not moving patients with dementia unless there is a clinical need Raised awareness amongst staff of the impact of ward moves on patients with dementia, achieved through dementia training Implementation of identifiers of patients with dementia or a cognitive impairment, enabling staff to quickly identify which patients it would be inappropriate to move Empowerment of staff, including porters, to challenge inappropriate patient moves Collection of data relating to ward moves The overarching area showing least improvement was ‘Assessment and early identification of dementia’ (32%). However this may have been because this area was Page 43 given the highest score in self-assessments at the beginning of the programme so there was less potential for improvement. Furthermore it should be noted that improvement in this area as a whole was statistically significant, and that this area was also given the highest score at the latest measure in January 2014. Only six individual SPACE principles did not show a statistically significant improvement in score over the seven-month period, namely ‘Clinical reviews of antipsychotic medication’ (13%), ‘Training includes the perspectives of people with dementia and carers’ (16%), ‘Identified clinical leads for dementia are available e.g. dementia specialists/nurses, mental health liaison, dementia champions’ (28%) ‘Skilled knowledgeable practitioners available to support assessment e.g. dementia specialist, mental health liaison’ (28%) ‘Good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication’ (52%) ‘Process in place for the recognition and assessment of carers needs’ (69%) The lower rate of improvement in relation to some of these principles may reflect that programme participants had little control over these areas. For example, it is likely that clinical reviews of antipsychotic medication would be carried out by medical rather than nursing staff. Ensuring that knowledgeable practitioners and clinical leads are in post is also likely to be outside the remit of many programme participants. Therefore it may be useful to review the inclusion of principles such as these as part of the programme. In relation to including the perspectives of people with dementia and carers in training, discussions held with programme teams indicated little work had been done in this area. Difficulties were identified in relation to identifying suitable people to help deliver training, and in making time to include patient or carer stories in relatively brief training sessions. In any future programme it may be useful to specifically include a session focusing on this objective and how to overcome common barriers to its achievement. 7.3 Perceptions of SPACE scores One Trust reported that they felt they initially overestimated their actions in relation to all of the overarching SPACE principles. A further Trust reported that they did so in Page 44 relation to the principles ‘Skilled staff who are informed and have enough time to care’ and ‘Partnership working with carers’. The majority of Trusts (6) felt that the SPACE principle they had most improved on was ‘Skilled staff who are informed and have enough time to care’. This was not reflective of the self-assessed SPACE scores, which indicated that this principle was fourth most improved. However it may have been perceived by programme participants as the most improved area as training was identified as a key focus for improvement in the majority of Trusts and a lot of work had been carried out in this area, with new training programmes being implemented and hundreds of staff being trained from all areas of the hospital. Page 45 8. Progress on Trust Dementia Action Plans 8.1 Overview of achievements Overall, participating Trusts identified 211 objectives as part of their action plans. It was reported that 49% of objectives had been fully achieved on completion of the questionnaire, 36% had been partially achieved, and only 15% had not been achieved (see Figure 10). See Appendix 1 for a full list of all objectives rated as fully achieved and Appendix 2 for a list of supporting documents provided by Trusts which demonstrate outcomes for carers, patients and staff. Figure 10: Percentage of objectives set out Trust action plans that have been fully, partially or not at all achieved2 Fully achieved Partially achieved Not at all achieved 0% 10% 20% 30% 40% 50% 60% 8.2 Case Studies of Innovation The evaluation found that much positive and innovative work had been achieved in relation to the action plans set by each Trust, examples of which are presented in the following case studies: 2 12 objectives were not rated in the survey, so findings relate to 199 objectives. Page 46 Case study 1: Dementia friendly bays in A&E Four bays in A&E were designed specifically with patients with dementia in mind. The bays are spacious and relatively clutter-free, with appealing pictures of local scenes on the walls and big clocks with time and date information. A secure area had been created so that patients could walk around the area without being sent back into their own bay. It was observed that A&E did not have the ‘clinical’ feel expected, but was light, airy and calm. Anecdotal evidence suggests a reduction in incidents involving behaviour that challenges. A&E staff (including security staff) attended dementia training, and now increasingly see things from the patient’s perspective. Further improvements are planned in the department, including the installation of new signage, and making books and activities available. Case study 2: Carers’ feedback workshop A carers’ workshop was held so that Trust staff could get feedback on the needs of carers while their relative was in hospital, which was very enlightening. Carers who attended were given ‘five pounds’ to spend in Monopoly money and asked where they would put their money to change things. Some carers wanted to be more involved in their relative’s care while they are in hospital, and reported that they sometimes found it difficult to get information about their relative over the telephone. Other issues raised included the cost of parking and restricted visiting times. In response to this feedback staff now use a simple checklist to check which aspects of the patient’s care carers want to be involved in. Cards have been created for carers to carry which give them permission to visit their relative as required, and also give a 10% discount on food and drink at the hospital canteen. If carers give staff the registration details of their car, parking staff are informed that they are entitled to park for free. A password system has also been implemented, which enables staff to share more information with carers over the telephone. It is planned that the carers’ workshop will be repeated when the changes that have been made are embedded, to look at how further improvements can be made. Case study 3: Patient passport An existing patient passport has been adapted to make it more person-centred, and it is now used for patients with dementia. Carers can complete the passport on behalf of their relative, so that staff have relevant information to enable them to provide personalised care. As the passport has become embedded in practice some patients who are re-admitted to A&E may already have a passport, which is very useful. Page 47 Completed passports are scanned into the system in case patients do not bring their paper copy with them on admission. There has been a culture change around the use of patient passports, and staff now realise that making sure the passport is completed is not just extra work, but can actually help them do their job. Carers are also becoming more aware of the passport, and now remind staff to look at it. Funding has been obtained so that blank copies of the patient passport can be provided to local care homes, and passports have now started moving back and forth between the hospital and the care homes, which has been very helpful and reduced the number of phone calls needed. Case study 4: Dementia awareness training Dementia awareness training has been implemented at staff induction with the aim that at every point through the hospital staff will be aware of the needs of patients with dementia (including receptionists, porters, etc.). This training is extended to agency staff as part of their mandatory induction. 219 staff across four elderly care wards have attended more in-depth dementia training, which has covered communication with patients with dementia and carers, psychosocial interventions, person-centred care and behaviour that challenges. The project team have considered getting carers involved in the delivery of training in the future so that they can tell their story. In addition to formal training, mental health liaison workers pass on a lot of useful information to other staff. The training has contributed to a shift from the medical model to a more psychosocial model of care. It has made a big difference to how staff respond to the behaviour of patients with dementia, as it has increased understanding and awareness. For example, there is now a greater focus on occupying patients with activities to reduce behaviour that challenges, and staff are now seen to be walking around with patients with dementia who are wandering when previously they would have told them to sit back down. Case study 5: Activity Room An activity room has been created between two elderly care wards where activities are provided every day (morning and afternoon sessions) for patients with dementia. The room is run by an activity worker who previously worked as a health care support worker and has had dementia training. There was no funding for this role, so the ward released funding for one of its staff: this has proved to be a win-win situation as the activity room frees up the time of staff on the ward. Activities include painting, wordsearches, dominoes, watching films, hand massage and manicure. Patients can choose to eat their lunch in the activity room or go back to their bed if they prefer. Dementia Page 48 care mapping has been carried out in the activity room, and a considerable difference in wellbeing scores was observed between patients in this room and those on general wards. Incidence of falls on the two wards has reduced from 19 in the six month period before the activity room opened, to 9 in the six month period after. Case study 6: Reduction of ward moves There is an aim to minimise ward moves for patients with dementia and to ensure that if a patient needs to be transferred to another ward that this is done during the day. A formal list of patients recommended for no ward moves is generated on a Friday afternoon in preparation for the weekend, as it was recognised that out of hours was a key time when a patients were moved between wards. This list is sent to all the executive teams and heads of nursing, and if staff want to move a patient on the list this needs to be approved by the mental health liaison team. Ward moves are built into the Trust Key Performance Indicators, and if a patient on the list is moved it is raised as a clinical incident. This list is also given to the security manager so that security staff and porters are aware of it. Porters and security staff have attended dementia awareness sessions, and feedback from this has been very positive. The training has brought them closer together with medical staff, and they are pleased to be engaged and to understand more about dementia. They are now much more empowered to question staff about whether a patient should be moved, and it has been observed that they now engage with patients much more whereas previously they may have seen their role as just moving a patient from A to B. Implementation of the new list has reduced patient moves considerably. Case study 7: Piloting of a pain assessment tool for patients with dementia The team carried out a survey of adult nursing staff to explore what would help improve their assessment of pain in patients with dementia who have difficulty communicating. They conducted a literature review to identify potential pain assessment tools, and formed a multidisciplinary working group to decide which tool would be most suitable for use within the acute hospital environment. A number of pain assessment tools were evaluated, and the PAINAD (Pain Assessment in Advanced Dementia) tool is currently being piloted, with staff feedback obtained via evaluation surveys. New questions have been added to the ‘About Me’ document, which is for carers to complete on behalf of patients with dementia, asking carers to outline signs that their relative may be in pain and what may help to ease pain. Page 49 Case study 8: Carers’ passport A carers’ passport has been implemented which aims to value the contribution carers make in caring for a person with dementia and ensure that staff recognise that the carer can make a difference to the experience of the person while they are in hospital. The passport allows carers to visit their relative at any time, and is pre-signed by the Director of Nursing so that there is no longer any inconsistency whereby different nursing staff allow different visiting practices. This scheme is publicised by posters outside the ward area, and carers are encouraged to approach staff and ask for a passport. This facilitates a discussion between the carer and ward manager about how best to plan the care of the patient, which helps nursing staff to recognise that the carer is an expert in the care of their relative and prompts them to engage more with carers. This conversation also enables nurses to ask carers whether and how they want to be involved in supporting their relative’s care whilst they are in hospital, and this can then be planned to suit the carer. Carer feedback on the passport has been very positive, and they particularly value being able to stay with their relative in hospital whenever needed, and the opportunity to engage with nursing staff. Page 50 Case study 9: Bay nursing for patients with dementia with activities and dining table Bay nursing for patients with dementia has been implemented on two wards, with plans for wider roll-out. One nurse is responsible for each bay, which has enabled staff to get to know a smaller number of patients and their families well. There is a table in each bay which enables patients to eat together and to take part in activities such as bingo, scrabble or puzzles. It has been recognised that bay nursing has made a huge difference to patients and staff. For example, there has been a reduction in falls and in the number of patients needing 1:1 nursing, as there is a nurse present in the bay at all times. Staff satisfaction, morale and sickness levels have all improved, and there is a plan to measure improvements in length of patient stay. Although additional nurses needed to be recruited to implement bay nursing, this has been partially offset by a reduction in 1:1 nursing costs. 8.3 Factors affecting the achievement of objectives Figure 11 shows the factors rated as most important by programme participants to support, deliver and manage improvements in practice. Interestingly, ‘funds to support improvements’ was only rated as important by two Trusts: this may be because the majority of Trusts managed to make changes without securing additional funding, or because other factors were viewed as having a greater influence over changes. Page 51 Figure 11: What are the most important factors in your view to support, deliver and manage improvements in practice? Support from executive team Dedicated dementia specialist post/s Funds to support improvements Collaborative working with other specialities Dedicated wards for people with dementia Organisational stability Voice of patients/carers 0 1 2 3 4 5 6 7 8 9 Number of Trusts Other important factors identified by programme participants were ‘skills and competency of staff’, ‘dedicated time to achieve’ and ‘awareness and understanding at all level[s]’. Trusts were also asked to identify any factors which helped or hindered the achievement of the objectives set out in their action plans; common themes are summarised below. 8.3.1 Staff engagement By far the biggest influencing factor identified was staff engagement in the project. It was reported that where there was a high level of engagement, enthusiasm and commitment to the project from frontline staff at all levels, this facilitated the achievement of improvements in culture and practice: ‘The persistent hard work of the two support workers and the matron have made this happen’ ‘What has helped is a very proactive housekeeper in A&E who has championed the dedicated bays’ Trusts reported that turnover of staff and recruitment issues made it difficult to achieve some objectives due to time constraints, and could make changes less sustainable. Page 52 Changing the culture and ways of working was also a challenge: for example, in some Trusts protected mealtimes had previously been implemented, but staff were subsequently asked to be flexible around this to allow carers to support their relative to eat and drink. Educating the workforce was identified as being integral to the success of new initiatives, in order that staff understood the reasons behind changes. It was recognised across the majority of Trusts that project teams still had work to do to raise awareness of changes and ensure new ways of working were embedded into everyday practice, which may take a long time. Engagement of medical staff was cited as a particular challenge; notably the inclusion of this group in training. One project team explained that some doctors felt insulted by being asked to complete dementia e-learning and were reluctant to do so. Where the involvement of medics in training was reported, this tended to be in cases where separate, specialist training was provided. This training focused more on the treatment and management of the symptoms of dementia rather than communication with or support of patients. One Trust identified that in other areas medics had been engaged successfully after listening to patient and carer feedback, so planned to take this approach to engaging this group in dementia-related changes. Commitment to the programme from senior management was also identified as an important factor in enabling changes to be made; for example the commitment to release frontline staff for training, and support for changes to dementia care pathways. It was generally reported that having contact with a member of staff at board level was vital in supporting the programme in terms of increasing the influence and recognition of the work of the project team throughout the hospital. It also enabled project teams to gain the support of senior staff if they encountered any problems implementing changes as part of the programme. Some Trusts reported that through their project work senior managers involved in environmental or maintenance work had become interested in dementia care. In these cases this has resulted in patients with dementia being considered in the design of new areas, for example in terms of colours, signage and flooring. In some cases it was identified that being on the programme had itself helped raise the profile of dementia in the Trust: for example one Trust explained that they were asked to give regular programme updates to the board, which gave them the opportunity to keep raising the profile of dementia care and publicise examples of good practice. The programme was generally seen as worthwhile and prestigious by senior staff, which gave the project work credibility and support: ‘When we applied for [the programme], at a very senior level in this organisation they were delighted that we got a place... And they saw it as a Page 53 very important, high-level respectable endeavour that we were setting out on’ Presenting patient stories appeared to be a successful strategy for engaging senior management and board members in changes to practice around dementia care. Project teams reported that this raised the profile of dementia, and made staff think about what actually happens when a patient with dementia is admitted to the hospital. Although Trusts generally felt supported by senior management to undertake the programme some mentioned that they were given little protected time and no resources to work on the project work they had identified. 8.3.2 Funding Funding for the project was also identified as a key factor in supporting the achievement of objectives. In most cases where funding was mentioned, a lack of funding for training, resources or environmental improvements was reported. However in a minority of cases funding was cited as a facilitating factor and some Trusts mentioned that they had been successful in obtaining funding for discrete projects. Examples were funding for professional artists to provide activities, the provision of new day rooms and gardens, environmental improvements such as new clocks and signage, the purchase of activity packs and RemPods, and specialist dementia training. This funding was from a variety of sources, including government funding, the local Arts Council, and the League of Friends. 8.3.3 Availability of space and staff time A lack of space, for example for the creation of day rooms or activity rooms, was a hindering factor for some Trusts. ‘Competing demands on staff time’, both those participating in the programme and other staff, was another issue identified. In some cases it was mentioned that prioritising certain objectives in the action plan led to insufficient time being available to focus on others. 8.3.4 Difficulties with carer engagement Trusts commonly reported difficulties in finding carers to engage with, as many carers do not identify themselves as such. This resulted in low uptake of carer support in some areas. Some project teams had implemented initiatives to try and overcome this challenge, such as increasing publicity of the support available for carers through the use of posters, leaflets and information boards, and implementing formal mechanisms such as carers’ passports to assist in the identification of carers. However, it may be useful to discuss strategies to tackle this issue in any future programme. Page 54 9. Considerations for Future programmes The development programme was undoubtedly beneficial for the majority of Trusts who participated. In view of the feedback on the programme itself and the subsequent impact the following recommendations are made for the future development of the programme: 9.1 Programme facilitation 1. It may be useful to consider how suggestions made to Trusts following the RCN site visits could be embedded more into the programme, as few of these recommendations were acted upon by project teams at the time of the site evaluation visit. 2. Informal networking opportunities were identified as particularly powerful and thought needs to be given for how this could be facilitated. 3. Trusts valued hearing what colleagues were doing so time should be allocated for participants to present their action plans, with a question and answer session following each presentation, so that all programme participants have a good understanding of the work being carried out by other Trusts. 4. The ‘world café’ session should be included in a similar format in future programmes, as this was identified as an excellent opportunity for Trusts to network and share ideas. However it may be beneficial for programme participants to be able to move freely between stands, so that they can gain the information most relevant to their own project. 5. It would be useful to consider an alternative IT platform for the sharing of progress and resources, as accessing the Wiki site was problematic for many participants. 6. Holding the programme regionally in the future could be a possibility to consider: this would make travelling to the development days easier for programme participants and facilitate networking between Trusts. 7. It may be beneficial to implement a buddy system linking up Trusts in pairs, to facilitate greater networking during and after the programme. 8. Appointing a mentor for each Trust on the programme is a possibility to consider for the future. This would provide Trusts with bespoke support and a regular point of Page 55 contact. The mentor could be a member of RCN staff or possibly a previous programme participant. 9. Providing Trusts with clear, detailed information about the format of the development programme prior to the start of the programme would help ensure that participants’ expectations are met. 10. It would be useful to consider how the focus, commitment and enthusiasm for change demonstrated by Trusts while on the programme can be maintained following the end of the programme. 9.2 Programme content 11. More content could be included in the development days regarding the evaluation and analysis of patient outcome measures, as this was the least improved area in relation to the programme objectives. 12. Strategies to engage and identify with carers could be discussed explicitly on the programme, as many participants found this challenging. In particular, a session could be included focusing on the inclusion of the perspectives of people with dementia and carers in training and how to overcome barriers to this, as this was an area where Trusts found it difficult to progress. 13. It may be useful to review the inclusion of particular SPACE principles which programme participants are unlikely to have a significant influence over, including ‘Clinical reviews of antipsychotic medication’, ‘Identified clinical leads for dementia are available…’ and ‘Skilled knowledgeable practitioners available to support assessment…’ 14. The engagement of medical staff in changes could be discussed on the programme, as Trusts experienced particular difficulties in this area. 15. Visits between Trusts could be considered as a formal part of the programme, as it was suggested by a number of Trusts that it would have been very useful to see examples of their counterparts’ work in practice. Alternatively this could take the form of participants being able to visit areas of good practice in dementia care identified by the RCN. 16. It would be beneficial to consult programme participants prior to the beginning of the programme to find out what they would most like to learn on the programme and whether there are any speakers they would particularly like to hear. If possible, Page 56 content of subsequent development days could be responsive to the challenges participants report on the first day if any common themes emerge. Page 57 10. Maintaining Change In all cases, Trusts reported they felt that objectives they had achieved would continue to be achieved over the next 12 months. Many Trusts had made specific plans for future additional changes, which often included the roll out of changes made as part of the programme to a wider area within the hospital or Trust. It was identified by programme participants that changes would continue because they felt passionate about improving care for patients with dementia and were strongly committed to carry on this work. However, as project teams explained that participation in the programme gave them enthusiasm and drive which they might not otherwise have maintained over the period, it is important to consider how this will continue following the end of the programme. The programme itself appeared to be helpful in sustaining future change in two main ways: firstly by raising the importance and profile of dementia care within Trusts, and secondly in equipping participants with strategies for the future. Participants reported that the programme provided a starting point for change. They predicted that changes would continue as staff became aware of and enthused by work already carried out, which had raised expectations for the future. ‘I think what this has done has raised expectation amongst the whole of the health economy. So I don’t think it’s going to go away… the pressure to continue to improve patient experience of someone with dementia, I think the pressure’s always going to be there, and I think what we’ll have done is laid the foundation for that to go forward.’ The programme enabled participants to develop an evidence base for new initiatives, and provided a focused framework for change. Participants reported feeling empowered to challenge existing practice and implement change, and identified that they had gained a lasting confidence to move forward with developments. Aside from the programme the high profile of dementia nationally, and the inclusion of dementiarelated CQUIN targets by individual Trusts, were seen as key factors in driving change forward. Changes in staffing were seen as a potential barrier to the sustainability of the work achieved: for example, it was viewed as vital that key roles were given continued funding, and that staff leaving should be replaced with someone with equal enthusiasm and passion for dementia care. It was also acknowledged that the delivery of changes should not be solely dependent on the project team, but needed to be more widely adopted in the Trust to ensure sustainability. One programme participant explained that Page 58 as her role was not solely focused on dementia, she felt she may not be given time to work on changes following the end of the programme as it was seen as a standalone project by her managers. One Trust identified that it would be helpful if the programme could continue in some way after the official end in May 2014; for example if there was an IT facility which would enable Trusts on the programme to network with each other: ‘We kind of hope in some way, I know that the programme’s going to end, but in some way it carries on… All good things come to an end, and you kind of wish… it was carrying on a bit longer.’ Page 59 11. Summary and Conclusion The development programme was successful in the achievement of its specified objectives and learning outcomes, with all participating Trusts reporting that objectives were fully or partially achieved, and that they had improved in respect of all learning outcomes of the programme. Project teams showed an average increase of 45% in their overall SPACE scores between June 2013 and January 2014. The increase in scores on each of the five SPACE principles was statistically significant. Of the 211 action plan objectives identified by participating Trusts, 85% had been fully or partially achieved by January 2014. It was identified that much positive and innovative work had been achieved by Trusts during the programme. Project teams reported that although much of the work they were doing in relation to dementia care had started prior to the programme, the programme acted as a ‘catalyst’ in moving developments forward at a faster rate. The majority of programme participants reported that the development days and site visits from the RCN contributed to the progression of their project. It was felt that the programme provided the focus and structure for Trusts to make changes, and supported actions through equipping participants with the strategies and confidence to change practice. In addition, it encouraged partnership working within organisations, provided networking opportunities, and helped to raise the profile of dementia care in Trusts. In all cases project teams reported they felt that objectives achieved on the programme would continue to be achieved over the next 12 months, and many had made specific plans for the roll out of changes made as part of the programme to a wider area within the hospital or Trust. Recommendations for the future development of the programme include the preconsultation of participants to establish what they would most like to learn on the programme, an increase in opportunities for informal networking on development days, and the establishment of an alternative IT platform easily accessible to programme participants. The formal introduction of visits between Trusts and the implementation of a mentor or buddy system for participating Trusts are further suggestions for consideration. Page 60 12. References [1] National Audit Office (2007). Improving services and support for people with dementia. London: The Stationary Office. [2] Suarez, P. and Farrington-Douglas, J. (2010). Acute awareness: improving hospital care for people with dementia. London: The NHS Confederation. [3] Alzheimer’s Society (2009). Counting the cost: Caring for people with dementia on hospital wards. London: Alzheimer’s Society. [4] Banerjee, S. (2009). Report on the prescribing of anti-psychotic drugs to people with dementia: time for action. London: Department of Health. [5] Royal College of Psychiatrists’ Centre for Quality Improvement (2011). Report of the National Audit of Dementia Care in General Hospitals. London: Royal College of Psychiatrists. [6] Parsonage, M. and Fossey, M. (2011). Economic evaluation of a liaison psychiatry service. London: Centre for Mental Health. [7] Royal College of Psychiatrists (2013). National Audit of Dementia care in general hospitals 2012-13: Second round audit report and update. Editors: Young J, Hood C, Gandesha A and Souza R. London: HQIP. [8] Thompson, R. (2011) Dignity in Dementia; Transforming General Hospital Care. Outcomes from Survey of Practitioners & Report of the Findings and Analysis from Employment Research Ltd: London: Royal College of Nursing. [9] Thompson, R. (2011) Dignity in Dementia; Transforming General Hospital Care. Summary of Findings from Carer and Patient Survey & Report of the Findings and Analysis from Employment Research Ltd. London: Royal College of Nursing. [10] Thompson, R. and Heath, H. (2013). Dementia; Commitment to the Care of People with Dementia in Hospital Settings. London: Royal College of Nursing. [11] Phair (2014). Sit & See [online]. Available at: http://sitandsee.co.uk [Accessed 12 May 2014] [12] Carers Trust/ RCN (2013). The Triangle of Care – Carers included: A guide to best practice for dementia care. London: Carers Trust. Available at Page 61 http://www.rcn.org.uk/development/practice/dementia/triangle_of_care [Accessed 12 May 2014] Page 62 Appendix 1: Objectives fully achieved by participating Trusts Skilled staff who are informed and have enough time to care Promote RCN programme to Trust staff, create discrete section on Hub Develop e-learning package for basic and enhanced awareness Agree a training matrix for all Trust staff Make contact with Dementia Champions in other Health Boards or Trusts Question 50+ staff on what a Dementia Champion means to them Ask the Dementia Champions how they see the role and what they want from it Meet current champions to assess their own knowledge and skills to fulfil the role Identify areas where there are unmet training or education needs Work with Consultant Nurse and others to introduce training opportunities for champions Evaluate the Dementia Champion role on Care of the Elderly wards Recruit two Dementia Support Workers, provide training and induction and introduce to Care of the Elderly wards Engage in supervision and reflection on interventions to identify skills and knowledge required to provide the intervention in an effective manner Develop a network of Dementia Champions on two wards Ensure Dementia Champions have attended Dementia Champion training sessions Produce a Top Tips for Specialing guide Produce a How to Special guide Produce specialing kits with resources to help provide meaningful activities Dementia Champions to receive additional dementia training Staff to contribute to the 5 Ds dementia training module Benchmark staffing numbers against the RCN framework Review roster templates to ensure effective rostering Review training currently being delivered Develop and deliver a training plan that links to national and Trust dementia strategy Deliver further training sessions on the CQUIN process including any changes made after review Deliver Dementia Champion training Identify key groups of staff requiring training, i.e. porters and ward receptionists Identify gaps in knowledge and skills through Dementia Champions network Engage support of Dementia Champions and researchers from local University to inform training programme Outline training programme for delivery Identify resources for training delivery (rooms/trainers) Include training programme as part of Trust dementia education strategy Page 63 Identify booking system for training Circulate training dates to relevant staff groups Maintain record of staff trained using OLM (Oracle Learning Management) Plan and devise a programme that provides a range of training and education to MDT (multidisciplinary team) Liaise with colleagues in Higher Education Use ‘Away Day’ concept to enable all staff to attend dementia training Produce VERA posters Produce VERA lanyard cards Provide VERA framework training to all team members on two wards VERA to be taught at corporate induction Involve dementia steering group (regarding staff training) Develop a dementia network, through association with the RCN development programme Promote aims of the dementia collaborative, to ensure participants have identified tests of change prior to learning event Partnership working with carers Implement the carers satisfaction survey Develop a carers information pack Alzheimer’s Society to be invited to Dementia Strategy Group Encourage flexible visiting on the Older People’s wards that meets the needs of the patient and their carers Develop a communication pack for carers to be given on admission Develop a menu-style card allowing carers to select from a range of options those things that they feel will improve communication in their case and allow them to feel supported Work in partnership with the local carers group to develop a plan for the commencement of a carers café within the organisation Ensure there is access to information for contacting the HELP phone where necessary Provide a presence at local dementia events Assessment and early identification of dementia Maintain performance with assessment, investigation and onward referral initiative Ensure dementia screening question is asked on admission Review the current assessment process for people aged 75 years+ admitted as an emergency Promote use of 6-CIT cognitive screen for all eligible patients Carry out an audit of internal measures to identify people with cognitive impairment at ward level Page 64 Ensure that where a patient is considered to have a dementia, this concern is shared with the GP to ensure a referral to the memory assessment team is made Care plans which are person centred and individualised Ensure that patients requiring support with meals and fluid intake are assessed and have a personalised care plan developed in their electronic patient record Ensure that support with nutrition and hydration is reported at handover and safety huddles Record level of support on the nutrition board in the ward kitchen Accurately record food and fluid intake in the patient evaluation Have clear medical and nursing management plans in place Ask patients about their management plans on senior nurse clinical walk rounds that occur twice a month Identify patients’ preferred form of address at admission Agree the dementia care pathway with wide range of stakeholders Obtain information demonstrating good practice developed in other areas Liaise with services previously involved in supporting the patient at home Scope current pain tools in use Engage key stakeholders in identifying chosen pain tool to pilot Pilot chosen pain tool Audit current level of completion of ‘About Me’ booklet Cascade audit findings (of completion of ‘About Me’ booklet) to clinical leads, Matrons, Ward Sisters/Charge Nurses, Practice Development matrons and Dementia Champions Re-audit completion of ‘About Me’ booklet Address deficits in completion (of ‘About Me’ booklet) through training, communication strategy and support of Dementia Champions network Raise profile of the Dementia Strategy requirement for improved dementia care in General Hospitals throughout the organisation Review the current CQUIN process and pathway Involve the dementia steering group (regarding the care of people with dementia in A+E) Share good practice across the community Establish regular contact with Trust Executives/Board Members to raise the profile of dementia and secure support to develop dementia care Ensure that the Concern Log is updated by Matrons/Lead nurses who feed back to individual areas if a concern has been raised Make Dementia Support Workers responsible for ensuring the ‘This is me’ document is made available to people with dementia who are admitted, and handed over to nursing staff once completed For Dementia Support Workers to lead on the implementation of documentation and use its completion as a method of building a relationship with those admitted and their families Page 65 Environments that are dementia friendly Order and supply phase one equipment and signage, to include clocks, signage and toilet seats Identify an area for the activities room Incorporate appropriate intervention including memory work and music therapy in order to provide dignified and mentally stimulating care provision Create a relatives / quiet room Undertake research into garden design / projects already undertaken Develop dedicated bays within A+E for patients with dementia, e.g. using pictures/photos, orientation equipment, hospital passports and possibly distraction toolkits Develop understanding and share knowledge of national policy and initiatives that will support a dementia friendly approach to care delivery, including changes to the environment and staff awareness of the needs of people living with dementia Provide single sex accommodation Liaise with outside agencies to develop a robust system for the management and delivery of therapies in the activities room Meet with the Trust’s art therapy service leader to discuss best practice for the implementation of this service Progress the application to the DOH (Department of Health) for funding to change the environment on one ward Use TOPAS service to control moves into DME SCNs to gate keep moves out of DME Involve dementia steering group (regarding environmental changes) Page 66 Appendix 2: List of supporting documents submitted by participating Trusts The following documents were submitted as supporting evidence of outcomes for patients, carers and staff: Outcomes for patients Document name Outline of outcomes Patient experience questionnaire results (Quarter 3, 2013) More patients than previously believed that they had been involved with decisions about their care and treatment: 100% of respondents said that they were always involved as much as they wanted to be in these decisions Audit of ‘About Me’ completion in May 2012 and May 2013 In May 2012 91% of inpatient areas included in the audit had a stock of the ‘About Me’ document and could locate where it was stored. This improved to 100% for the May 2013 audit. In May 2012 21% of staff questioned were unaware of the ‘About Me’ document; 6% were unaware in May 2013. Of the patients on each ward identified as requiring an ‘About Me’ document, 26% had an ‘About Me’ completed in May 2012 and 66% in May 2013. Dementia care mapping showed a considerable difference in terms of wellbeing scores in comparison to general wards and a specialist mental health dementia unit. On a wellbeing scale from -5 (significant ill-being) to +5 (significant wellbeing) the following average scores were found: - Specialist mental health dementia ward = 2.09 - Ward 1 = 0.76 - Ward 2 = 0.45 - Dementia activity room = 3.36 In terms of time spent in state of ill or well-being, 100% of the time in the dementia activity room was spent in a state of wellbeing; 94% with scores of 3 or higher. 88% of the time spent on ward 1 and 73% of time spent on ward 2 was scored at +1, with 12% and 27% of time respectively spent in a state of ill-being (-1). In the six months before the role of dementia support worker was introduced, 10 complaints were received relating to dementia care. In the six months after the role was introduced 1 complaint was received. Dementia Care Mapping results for dementia activity room Page 67 The average fall rate fell from 19 per month in the six months before the role of dementia support worker was introduced to 9 per month in the six months after. Outcomes for carers Document name Outline of outcomes Carer experience questionnaire results (Quarter 3, 2013) Responses suggested improvement in carers’ feelings about whether their relative was treated with respect and dignity, with 100% reported that this always happened. An increased proportion of carers (62.5%) reported being offered an information pack. Outcomes for staff Document name Outline of outcomes Dementia training satisfaction questionnaire results Non-clinical dementia training evaluation Of 12 respondents, 83% found the training helpful, and 83% said that they thought their practice had changed as a result of attending the training Comments included: - ‘[I have a] better understanding of dementia as a whole’ - ‘With a better understanding of dementia, I feel more confident to communicate with patients’ - ‘I will look for reasons to explain a particular behaviour’ - ‘I will look to approach a patient in a manner that won’t frighten them’ - ‘I have an increased awareness of patients’ perceptions’ 78 evaluations were completed across 5 separate training sessions for nonclinical staff Prior to the session, 8% of staff reported that they knew ‘enough’ or ‘a lot’ about dementia. Following the session this had increased to 99%. Prior to the session, 12% of staff reported that they knew ‘enough’ or ‘a lot’ about the difficulties someone with dementia may have in communicating. Following the session this had increased to 99%. Prior to the session, 12% of staff reported that they knew ‘enough’ or ‘a lot’ about what a patient may be trying to communicate through their behaviour. Following the session this had increased to 96%. Prior to the session, 22% of staff reported that they knew ‘enough’ or ‘a lot’ Page 68 Mental health and dementia awareness training evaluation Assessing dementia skills and time to care on two inpatient wards Evaluation of a training programme for supporting people with dementia in general hospitals about person-centred care. Following the session this had increased to 97%. Prior to the session, 14% of staff reported that they knew ‘enough’ or ‘a lot’ about what can affect eating and drinking in a person with dementia and what they could do to help. Following the session this had increased to 97%. Prior to the session, 13% of staff reported that they knew ‘enough’ or ‘a lot’ about how the hospital environment impacts on a person with dementia. Following the session this had increased to 99%. Respondents identified a number of things they would do differently in their role as a results of the training, including: - Spend more time communicating with patients with dementia - Make sure the ‘About Me’ document is used - Make sure other staff understand about patients’ nutritional needs Comments about the delivery of the training were very positive 190 staff trained. The vast majority of staff trained reported that they were ‘extremely’ or ‘very’ likely to use the training in their job Staff identified a number of specific actions that they planned to take into their work setting as a result of the training: - ‘Take more time to listen to patients who are having difficulty expressing themselves’ - ‘I plan to encourage the patients’ relatives to become more involved in the patient’s care’ - ‘I will use the Abbey pain assessment tool to know when patient is in pain’ - ‘Use Abbey pain scale, ABC chart and 6-CIT’ - ‘Educate ward doctors about specific areas of dementia’ 39% of staff on the two wards had received face-to-face training in dementia care; 31% had completed e-learning 63% of staff said that they were ‘very confident’ or ‘confident’ in their skills for caring for patients with dementia 607 staff completed the training programme Respondents completed the CODE (confidence in dementia) scale pre- and post-training. Prior to the training, 11% were rated as ‘very confident’, which rose to 57% post-training. The change in score was statistically significant (p < .001). Scores on the KIDE (knowledge in dementia) scale indicated a significant increase in knowledge following the training, from a median score of 12 to a median score of 14. Page 69 Respondents completed a controllability beliefs scale to measure their beliefs about the controllability of behaviour that challenges. There was a significant decrease in scores following the training, indicating that staff held a more person-centred perspective on challenging behaviour after the session. Page 70