1. Joy Duxbury Terri O'Brien Helen Ellis Sue Yates Kay Sheik David Pulsford Mary Matthiesen 1

2.  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 2

3.  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 3

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

5. Patient/family carer recruitment leaflet 5

6. Number of carers focus groups held Number of carers People cared forRange of illness of people cared for 415 Mother - 2 Husband - 4 Partner - 1 Father - 2 Father-in-law -1 Daughter - 1 Son - 1 Husband and daughter -1 Mother and father - 2 Dementia - 3 Cancer - 4 COPD -1 Heart failure - 1 MS and diabetes - 1 Brain tumour - 1 Genetic disorder -2 Dementia and Strokes - 1 Stroke - 1 6

7. Age range of carers Carers’ ethnicity Carers’ sex Past or present carers Geographic area where those cared for received care 20 -29 x 1 40- 49 x 5 50- 59 x 4 60 -69 x 3 70 -79 x 1 80 -89 x 1 All white English 14 female 1 male 10 past carers 5 current carers Cumbria - 4 Lancashire - 7 Wirral -1 Lancashire & Manchester - 1 Cumbria, Manchester & Oxford - 1 Leeds - 1 7

8.  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 8

9.  Communication difficulties  Lack of clarity about assessment  Coordination of care  Information  Staff attitudes and values  Environment  Symptom control  Training and education 9

10. 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 10

11.  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. 11

12.  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 12

13. 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. 13

14.  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 14

15. 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 15

16. 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 16

17. 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 17

18. Number of patient focus groups held Number of patients Age range sexType of Illness Northwest Home address 14Between 45 -70 1 male 3 female All in advanced stage of cancer All live in Lancashire 18

19. Core themeSub themeKey quotation CommunicationUse of terminology Lack of communication/ information at diagnosis GPs and consultant communication- need more training ‘End of life ‘ too final and ‘shocking’ to some. Difficult to talk about and come to terms with’ ‘Don’t think about EOL, just get on with it’ ‘Left floundering’ at diagnosis’ ‘Poor bedside manner’ ‘Got more human as time has gone on’ ‘You’ve got to ask the right questions, otherwise there’s no answer ‘ ‘He (consultant) wouldn’t tell me the stage of my cancer...said I didn’t need to know’ 19

20. Core themeSub themeKey quotation Coordination of careProblems with Social Services and coordination across different areas Would like to have one key person to coordinate care Out of hours service patchy but reassurance badly needed sometimes during the night ‘Everything is in isolation. It all needs joining up’ ‘You need to know what to ask for’ ‘ You have to explain everything again to each different person’ 20

21. Core themeSub themeKey quotation TrainingHelp with benefit forms is lacking – Age UK / Citizens Advice helpful Preferred Priorities of Care document GPs communication training. Need to listen ‘There’s no other support, nothing about benefits and the forms are frightening’ ‘Only heard about it through another patient’ ‘No-one asked me what I wanted’ ‘Never enough information’ 21

22.  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 22