Date post: | 12-Jan-2015 |
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Health & Medicine |
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Improving children and their families experience of the cancer care pathway
North Thames Children’s Cancer Network Coordinating Group
Shared Care Study Day: 25th July 2013
Dr Zoe Berger, Clinical Psychologist
Joint Chair of the Patient Experience Sub Group
Overview
• Members of the sub-group
• Aims of the patient experience subgroup
• Developments so far
• Next steps
• Questions
Membership
• Julie Bayliss (Lead Cancer Nurse; Joint Lead)
• Dr Zoe Berger (Clinical Psychologist; Joint Lead)
• Wendy King (Nurse Consultant, Whittington Health)
• Alison Finch (Matron CYP cancer services, UCLH)
• Leah Moffat (CLIC Sargent Social Worker, GOSH)
• Dr Sara Stoneham (Consultant Oncologist, UCLH)
• Dr Michael Groszmann (Consultant Psychiatrist, UCLH)
• Member of the Parent Council
Patient Experience Sub Group: rationale
• Cancer patients in London report a poorer
experience of care then those elsewhere
• Patient information is variable across the
system
• Focus on feedback from parents and carers
rather than children
Patient Experience Sub Group: aims
• Improve patient information and experience
• Unify and update children’s information
• Conduct a system-wide patient experience survey to inform service developments
• Develop a tool to access the views/ voices of children
• Develop a robust and useful Holistic Needs Assessment
• Set up a parent’s council to act as consultants to the work
Developments so far: information survey
Information Survey: summary
24 responses
• Whittington • Chelsea & Westminster • GOSH
Didn’t hear from BCFH, Basildon, NWL, Watford
Consultant/Nurse; 1 psych; 1 dietician
0
1
2
3
4
5
6
Where do you currently work?
Information Survey: summary
• 85% give hard copies
• 63% print information off the web
• Macmillan or CCLG
• 68% have their own information
0%
20%
40%
60%
80%
100%
Ca
nce
rd
iag
no
sis
Die
tary
ad
vic
e
Fin
an
cia
l su
pp
ort
/ B
en
efits
Me
dic
atio
n
Pe
ts
Sch
oo
l /
wo
rk /
un
ive
rsity
Sib
ling
s /
Gra
nd
pa
ren
ts
Sid
e e
ffe
cts
/sym
pto
mm
an
ag
em
en
t
What topics do you usually require written information on?
• 80% routinely give out information
• 20% wait for the family to ask
• Over 50% give CCLG booklets
• All topics
Information: gaps
• Information in different languages
• Books for siblings and different age ranges
• Returning to school and end of treatment
• PCT info that’s been given out e.g. dietary
recommendations
• Information about the teams, pathway, units
• Single point of access – patients/units
Information: next steps
• Re-survey to capture other professionals
• Standardise information being handed out
• Address the gaps
• Produce a directory of information
• ? When information is given out
• Who is responsible for giving it out/checking information needs
Developments so far: Parent’s council
The Parent Council • Good response to advert
• Parents with wide ranging experience of services and wealth of expertise
• Self select group
• Chairs: Claire Gallon and Hershel Grunfeld
• Attend CCNCG Board Meetings
• Reviewing documents
• Recruiting to the group – look out for their flyer!
Developments so far: audit of experience
Parent experience questionnaire
• Review of questionnaires used nationally
• Development of a tailor made questionnaire
• Planned to roll out September 2013:
• across the patient pathway
• across PTC and POSCUs
• in clinics, via internet, by post
Developments so far: Holistic Needs Assessment
Holistic Needs Assessment • Systematically identifying the needs of children and young people
• Seeing children as individuals separate from their cancer diagnosis
• Considers all aspects of the young person and their family:
• Health/Social/educational/practical
• Psychological/Spiritual
• Ensures signposting in a timely way
• Semi structured interview and distress thermometer
• Pilot on T11 North (10 families) - Positive feedback
Work Plan • Patient information
• Unified information – new info to fill gaps & rebranding
• Development of database for central access & audit
• Repeat information survey with AHPs
• Compile responses from the Parent experience audit
• Develop a tool to hear the voices of children (March 2014)
• Develop structures that support HNA and pilot within an MDT (June 2014)
Your views
• Are these the right objectives?
• What have we missed?
• What feedback do you get from children and
parents that you would like us to be
addressing?