Scoping Exercise of Education and Training in End of Life Care

1. Scoping Exercise of Education and Training in End of Life Care Joy Duxbury Terri O'Brien Helen Ellis Sue Yates Kay Sheik David Pulsford Mary Matthiesen

2. Overview of presentation • Aims of the carers and patient focus groups • End of Life Care Pathway • Recruitment process • Carers focus groups demographics and discussion topics • Carers’ groups: emergent themes • Patient focus group sample and emergent themes • Conclusions: Implications of the findings

3. Aims • To find out family carers and patients experiences of end of life care •  To identify their views on education and training provision for Health and Social care staff in End of life care • To identify any gaps and make recommendations for education and training requirements

4. Focus Group Recruitment Process • General press release – October 2010 • Press release Cumbria - January 2011 • Invited presentations • End of life care leads • Hospice contacts

5. Patient/family carer recruitment leaflet

6. Carer focus group demographics Table 1

7. Carers focus groups demographics Table 2

8. Topics covered in the carers and patient focus groups • Overall experience of care • Communication skills • Assessment of the persons needs and preferences. • Assessment of the family carers needs • Advance care planning and preferred priorities of care • Care in the last few days of life • Areas for improved training and education

9. Carers groups – emergent themes • Communication difficulties • Lack of clarity about assessment • Coordination of care • Information • Staff attitudes and values • Environment • Symptom control • Training and education

10. Communication Importance of feeling listened too • You were very careful that you picked the right moment and the right member of staff to approach with any concerns to feel that you would be listened to. CarerG3 Written communication between staff • ‘They didn’t know she had dementia, they didn’t have the notes, they didn’t know she was on the end of life plan. CarerG1

11. Information 1 • Difficulty knowing what help is available, no central point of information • I’ve found it’s hard to find out what is actually available ..., there’s no one body to go to, everybody directs you to a different place, you spend an awful lot of time and energy trying to just find out what is out there, ... and you’re very emotionally upset and you’ve got [their illness] to cope with, and then finances all start going pear shaped …. CarerG4.

12. Information 2 • If you could have a booklet or a leaflet that brought all these things together, like wheelchairs’ CarerG1 • I wish I’d known a little bit more about the Alzheimer’s, ... to have been able to help him more and understand better. CarerG3 • Where to get information, where to get help... my local hospice was brilliant CarerG2

13. Training End of life care plan wishes ignored She ended up in hospital because the worker phoned an ambulance. CarerG1. Assessment: Initial carer’s assessment, but no follow up review • When we first got carers in the social worker was very good and she said what you can have etc., but they don’t come back and revise it . CarerG4. • Problems with the assessment process There needs to be clarity on the expectation of what the assessment’s about, how we can help you, do you feel you’re getting the full support, that type of specific focus. CarerG4.

14. Coordination of care • The district nurse listened but they couldn’t always put it in place...There wasn’t oxygen [at home] so he ended up in hospital. CarerG1 Different staff every time, don’t know the patient very well. • The day to day carers come from the same agency but they’re not always the same people. They’ll have had a briefing ... but some of them don’t know him. CarerLG4

15. Staff attitudes and values 1 Lack of holistic care • Stop being like a baker in a cake shop because they don’t see the cakes anymore... the health professional needs to see the patient, the person. It’s just personalisation isn’t it? CarerG1

16. Staff attitudes and values 2 Doing a task but not engaging with the patient. • People should realise that it’s not just washing their feet and combing their hair, it’s the social interaction not just care of a person’s body. CarerG2 • [The nurse] was doing their nails, and all the time she was either watching the television or talking to another carer and not talking to the person who’s nails she was doing. CarerG3

17. Staff attitudes and values 3 Going the extra mile • She will do something which is probably outside her remit, for instance, when the light bulb went she went upstairs and found something suitable, a lamp, and put it in his room, and let us know, ... which I don’t think the others [carers] would have done.Carer4. • [A male carer] who used to go and buy razor blades out of his own money.. ...to shave the fellas, if there was none. Carer3

18. Patients focus group demographics Table 1

19. Patient focus group themes: Communication

20. Coordination of care

21. Training

22. Conclusions • Experiences of mixed care by focus group participants • More work on training and education particularly for generalist staff • More focus on ‘joined up working’ within, and between, organisations • Continue to monitor practice to evaluate how far policy is being implemented