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

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?

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

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

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 - 2011 'Guidance on the use of Patient Stories‘. 1000 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., 1999. 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

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

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

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

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

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

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

What worked well?

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”

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

What didn’t work...?

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

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

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”

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”

What have we learnt ?

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

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

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

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

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

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