1. Palliative care – the patients’ story
Palliative care team
Central area -BCUHB
J Pottle/A Coathup/D Waters

2. Patient Story Project WHAT is project? Brief background
HOW team completed the project
RESULTS of project
CHANGES to service
WHAT we have learnt from project?

3. Patient story project
Project to gain direct feedback from patients/ carers on the QUALITY of the palliative care service
SIMPLE :-Invite patients/ carers to tell THEIR STORY through a semistructured interview
Learning and actively listening to patients’ or carers’ stories of their healthcare journey
‘I want Great Care’Questionnaire / letters-compliments/ complaints

4. Patient story framework
BCUHB set up framework –
Specific format to register work, sample and explanatory letters, consent forms, provides guidance thr’ process.
PPI Manager (BCUHB)

5. Why is listening to patient /carers important?
Dignifed Care? The experience of older people in hospital in Wales
‘Older People’s Commissioner for Wales 2011
Ombudsman report- Care and Compassion
'Guidance on the use of Patient Stories‘ Lives Campaign .De Jong, J & Clarke. L., 2009.
'What is a good death? Stories from Palliative Care' Journal of Palliative Care 25:1; 61-67
Snowden, D., Story telling: an old skill in a new context. Business Information Review 16(1), 30-37
'Developing organisational narratives to support the process of change' Public Service Management Wales

6. Experience is not the same as satisfaction
Measuring SATISFACTION tends to involve assessment of our expectation against reality, this incorporates a fair bit of resignation that what we receive is the way it has always been
Measuring EXPERIENCE looks at how it feels to use a service, and is based on emotion. Emotional experience is a key driver for overall patient satisfaction

7. Experience vs. Satisfaction
Overall I must say everything was OK, I have no complaints with anything.

8. Project – not research Ethical approval – registered with BCUHB
Cannot analyse information to same depth as research project, but starting point

9. INTERVIEWS &TRANSCRIBE
Process
TEAM
SELECTION /SEND INFO
INTERVIEWS &TRANSCRIBE
IDENTIFY THEMES
CHANGES

10. Central palliative care service
13 patients/carers were invited to tell their story
Exclusion criteria
Selection -Nominated by team members
6 out of 13 patients / carers agreed to tell their story- mainly carers in our experience
Themes – grouped across more than one transcript and categorised

11. Interviews
Semi – structured – advised to let patient tell their story in their own way
2 members of team in interviews - rotated task
Need to allow adequate time
Difficult to keep to specific area
Stop interview if distressed
Can suggest further discussion of specific points if issues raised
Feedback was that carers were pleased to share their experience

12. What worked well?

13. Well done! Speed of response
Feeling of being supported , above and beyond routine
Attitude from HCPs –
“not frightened to pick up the phone”
“ never made to feel a nuisance”

14. Well done!
Regular monitoring and reviewing – creating a feeling of safety “ so glad someone was anticipating our needs””so supportive”
Advanced level of knowledge on difficult subjects
Practical and emotional support
Supportive care , not just crisis management
High praise for all immediate palliative care team and extended services eg D.N.s /hospices

15. What didn’t work...?

16. Challenges!
Specific to team
Financial support”need to keep on working so that money can be saved for when patient is dying”
Lots of professionals involved- uncertainty of who is in the team
Interaction with service –-prefer to speak directly to someone

17. Failure to discuss or acknowledge that death was likely to happen in next few days

18. numerous inappropriate terms “Luvvie “ “pops “ “casual chirping”
Applicable to Health service:
Breaking of bad news ( by external Professionals ) given “ like someone in outer space”
Lack of flexibility from external services to team eg GP’s receptionist / pharmacy not responding quickly/transport arrangements
“had to call in favours” – “what about those that don’t know the system?”
Professionals approach –”casually cruel”, not spending time with patient/ carers( in hospital )
numerous inappropriate terms “Luvvie “ “pops “ “casual chirping”

19. Applicable to health service
External Professionals :- breaking of bad news-”like someone in outer space”
Lack of flexibility from external services
Professional approach: ”casually cruel”,”luvie” ”pops”

20. What have we learnt ?

21. Changes we can make Answer machine – Team leaflet
Communication Team work:-
Answer machine – Team leaflet
Admin. v duty system - Teams to monitor change of working practice support
Purchase of bereavement cards

22. Education Ephasises the importance of: Breaking of bad news
Professional approach
Emphasises need to be aware of external factors eg GSF links / links with pharmacy. GP receptionists /police/
To have discussion on how/when to raise difficult topic of someone is dying

23. What has our team learnt from completing PT stories ?
Awareness of this method as only one way of gaining feedback
Can be very subjective, but allows direct feedback
Balance of allowing story to be told but keeping subject relevant
More achievable than research project
Can involve all team and encourages team work
Forum for discussion
Provides opprortunity for pts/ carers to give feedback on service when often don’t want to complain

25. FUTURE DIRECTION :- To repeat stories next year (involving students)
Random selection of patients as screening of referrals didn’t help
To use the interviews to explore some topics in more depth eg recognition of death

26. Future plans
To monitor changes – pointless doing this if cannot make changes –threatening for Managers of services !
To invite different team members to participate:- great way of active team project – more likely to support changes!
Sharing of good practice-St David’s Hospice to use the same format

27. Finally...
Remember – It is important to have feedback but must keep responses balanced so that changes do improve service for patients and carers