The East of England ABC End of Life Education Programme in Care Homes

1. The East of England ABC End of Life Education Programme in Care Homes Sarah Russell Mount Vernon Cancer Network ABC Project Lead On behalf of the team Seconded from The Hospice of St Francis, Berkhamsted sarah.russell@stfrancis.org.uk 25th September 2012 sarah.russell@stfrancis.org.uk

2. The ABC End of Life Education Programme in Care Homes: • What is the programme? • How does it link into other education out there? sarah.russell@stfrancis.org.uk

3. sarah.russell@stfrancis.org.uk

4. What is it? • A 2 year, NHS East of England funded and specifically designed care home end of life education programme • Delivered and evaluated (using the same tools) across the whole of the East of England: 2011 -2012 • Anglia, Essex, Beds, Herts and Luton • Uses End of Life Facilitator Educators (EFE’s) providing a blended learning package in the care home setting • 4 WTE in Hertfordshire • 1 WTE Bedfordshire, 1 WTE Luton • They are also simultaneously delivering a community and hospital end of life education programme sarah.russell@stfrancis.org.uk

5. The process • 6 core end of life modules plus follow up workshop • Learners and Managers evaluation and action plan • Identification of 3 care home champion roles • End of Life,Learning, Quality • Care home end of life standards • Pre and post • Audit of care home resident notes • Benchmark of end of life polices and procedures • Learners confidence in end of life care • Managers and Learners evaluation of the programme • Analysis of hospital non elective admission data • Transferable national accreditation and certificates sarah.russell@stfrancis.org.uk

6. The Modules: Overarching principles Assessment and care planning Comfort and well being Communication skills Advance care planning End of life tools Follow up workshop Due this year: Caring in the last days.................... sarah.russell@stfrancis.org.uk

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8. Overview of structure sarah.russell@stfrancis.org.uk

9. NHS East of England Care Home Education Programme in Mount Vernon Cancer Network sarah.russell@stfrancis.org.uk

10. In our area also includes: • Champion follow up workshops • Care Home Standards • Advance Care Plan Check List • Ongoing support • Linking into other education sarah.russell@stfrancis.org.uk

11. NHS East of England Care Home Education Programme in Mount Vernon Cancer Network ‘Has completely changed staff attitudes toward death, and end of life care. The importance of treating our residents as individuals and putting their needs and wishes in front of all others’ Care Home Manager ‘Preferred Priorities for Care document has acted as a catalyst for initiating and embracing conversations that no-one wants to start.’ Care Home Learner ‘All care staff need to be equipped to deal with all of the situations in the programme. It was more than an education programme, it results in a change in thinking, attitude and priorities’ ‘End of life care has improved dramatically in the home. We now have more and more ‘good’ deaths’ ‘Following the E-learning we now realise how important care of the residents’ family is. We have cleared a room which relatives can receive support and privacy in. Feed back from relatives from this have been very positive.’ Care Home Learner ‘Valuable course and I want all my staff to complete this in the future. I would definitely recommend care home staff to attend this programme’ ‘Fabulous initiative and I know the homes have welcomed the input – Thank you’ sarah.russell@stfrancis.org.uk

12. End of Life Scrutiny May 2012 Recommendations for Health & Community Services • Health & Community Services accreditation criteria of care and nursing homes recognises end of life training and provides financial assistance in partnership with health colleagues to enable continuation of the training programme • The training, whether based in a care home setting or through educators leading sessions for health centre staff, enables staff involved in end of life to develop the confidence to raise sensitive issues and initiate difficult conversations. sarah.russell@stfrancis.org.uk

13. The East of England End of Life Education Programme is proving to be effective • Member visits to care and residential homes highlighted to members the good practice in the county. • It is clear that end of life training increases staff confidence and the ability to support people to die in their preferred setting. • The result is fewer transfers (to hospital, hospice etc) and this included a care home for clients with profound dementia. • Members heard that not all care home had received end of life training, therefore there was inconsistent practice across the county. • The group would like all homes providing care on behalf of Hertfordshire County Council (HCC) to undertake both the end of life training and to adopt the strategy. • Accreditation should be a factor in selecting the provider. sarah.russell@stfrancis.org.uk

14. IPU: Keech Hospice DN: HCHS Educ: Hospice of St Francis DN: Bedford Educ: Peace Hospice CNS/Educ: Isabel Hospice Peace Hospice, Hospice of St Francis, NHS EOE sarah.russell@stfrancis.org.uk

15. How does it link into other education? End of Life and Cancer Education Steering Group West Herts East and North Herts Beds and Luton The Cancer Centre Watford General Hospital Macmillan Team The Peace Hospice The Hospice of St Francis Iain Rennie Grove House Community Macmillan Nurses Community Nurses University Isabel Hospice Garden House Hospice Community Macmillan Nurses Hospital Macmillan Nurses Community Nurses University Keech Hospice Community Palliative Care Team Hospital Palliative Care Team Community Nurses University Oncology Team Palliative Care Team University sarah.russell@stfrancis.org.uk

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17. Why do the ABC programme? • It makes a difference to care and to you • It increases individuals dying in their care home • It is accessible and flexible • It comes with a mentor – and they are stars! • It comes with an ongoing relationship • It provides a nationally recognised course sarah.russell@stfrancis.org.uk

18. After Coffee: Interactive session • Look at the programme • Look at the resources • Discuss and reflect together sarah.russell@stfrancis.org.uk

19. Care home champion experiences • What is the experience in Hertfordshire • Lessons learnt sarah.russell@stfrancis.org.uk

20. Mapping the programme to Skills for Care End of Life Qualifications sarah.russell@stfrancis.org.uk

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22. End of Life qualifications mapping templateEOL 201 sarah.russell@stfrancis.org.uk

23. Sustaining the programme through the Training the Trainer pilot sarah.russell@stfrancis.org.uk

24. End of Life Champion Purpose: to maintain the passion and focus on end of life care in your setting through the encouragement and support of your staff as well as working with the manager to ensure relevant policies, documentation and procedures are in place. Learning Champion Purpose: To facilitate new and current staff in end of life learning either though participation in the End of Life education programme delivered by yourself or by your educator mentor. Encourage and source opportunities of extra learning available locally. Quality Champion Purpose: To enable the accurate measuring and reporting of good end of life care through regular audit , surveys and systematic reporting. This enables you to be able to demonstrate for inspections (e.g. Care Quality Commission, Commissioners), residents and clients about the quality of the care you provide. It also enables you as a care home to be able to share good practice or learn different ways of doing things sarah.russell@stfrancis.org.uk

25. Sustaining the programme through the Training the Trainer pilot 18 homes • 6 in Herts • 6 in Essex • 6 in Anglia Oct 2012 – March 2013 Aim is to enable the learning champions to deliver the training in their own settings sarah.russell@stfrancis.org.uk

26. Formal Evaluation: University of Hertfordshire Independent evaluation from a credible academic and knowledgeable source • What evidence is there that TtT increases residents’ (and where appropriate family members) care home and NHS staff, engagement with advance care planning and ongoing conversations about end of life care? • What impact does the TtT have on care home staff’s confidence, reported knowledge, symptom assessment and management and involvement with NHS services when providing end of life care? • What are the costs? • What were the barriers and facilitators to the implementation of the programme? sarah.russell@stfrancis.org.uk

27. Mixed Method • Observation • Questionnaires • Audio Diaries • Interviews plus 3 focus groups • After death analysis and review of care and resources used sarah.russell@stfrancis.org.uk

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29. ‘The Hert of CareEnd of Life in Care Homes in Hertfordshire’25th September 2012 Summary • 0915 Coffee and registration • 0930 Welcome, housekeeping, CQ, outline of the day, introductions • 0940 Defining End of life care: Who, what, why when? • Sarah Russell (ABC Project lead) • 0950 Commissioning end of life care: Challenges and Opportunities: • Gordon Pownall (Commissioning Lead for End of Life and Palliative Care: Hertfordshire) • 1005 Dying in a multimedia world: How does society construct death and dying? • Dr Ros Taylor(Clinical Trustee, Help the Hospices, Hospice Director: Hospice of St Francis, Berkhamsted, DL Hertfordshire) • 1035 The ABC End of Life Education Programme in Care Homes: • What is the programme? • How does it link into other education out there?Sarah Russell • 1100 Coffee break • 1115 Interactive session with education mentors and care home champions EFE’s • 1150 Care home champion experiences • What is the experience in Hertfordshire? • Lessons learnt Care home champion and education mentor • 1215 Mapping the programme to Skills for Care End of Life Qualifications: • Kathryn Chamberlain (Skills for Care Area Officer Eastern) and Sarah Russell • 1230 Sustaining the programme through the Training the Trainer pilot • Sarah Russell • 1245 Closing thoughts and evaluation forms • 1300 Close sarah.russell@stfrancis.org.uk

30. Closing Thoughts: • What do you know now which you did not know before? • What are you going to do next? • Confidence questionnaire • Evaluation form sarah.russell@stfrancis.org.uk

31. ‘The Hert of CareEnd of Life in Care Homes in Hertfordshire’25th September 2012 The journey to where?I don't know where life will take me. I don't know how the river bends or where the rapids may be. Radiotherapy completed my treatment, but my journey isn't finished. My cancer seems to be gone, but who can be sure? There are no certainties, and from time to time a new pain has panicked myself and my loved ones. My body may be healed now but adjusting to the changes in my life and the recovery of my emotions, my soul, and my spirit takes longer sarah.russell@stfrancis.org.uk