improving children and their families experience of the cancer care pathway
DESCRIPTION
Presentation by Zoe Berger, Joint Chair of the London Cancer Patient Experience Sub Group, at the Teenager and Young Adults Study Day, held on 25 July 2013.TRANSCRIPT
![Page 1: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/1.jpg)
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
![Page 2: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/2.jpg)
Overview
• Members of the sub-group
• Aims of the patient experience subgroup
• Developments so far
• Next steps
• Questions
![Page 3: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/3.jpg)
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
![Page 4: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/4.jpg)
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
![Page 5: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/5.jpg)
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
![Page 6: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/6.jpg)
Developments so far: information survey
![Page 7: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/7.jpg)
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?
![Page 8: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/8.jpg)
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
![Page 9: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/9.jpg)
![Page 10: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/10.jpg)
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
![Page 11: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/11.jpg)
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
![Page 12: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/12.jpg)
Developments so far: Parent’s council
![Page 13: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/13.jpg)
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!
![Page 14: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/14.jpg)
Developments so far: audit of experience
![Page 15: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/15.jpg)
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
![Page 16: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/16.jpg)
Developments so far: Holistic Needs Assessment
![Page 17: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/17.jpg)
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
![Page 18: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/18.jpg)
![Page 19: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/19.jpg)
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)
![Page 20: Improving children and their families experience of the cancer care pathway](https://reader034.vdocument.in/reader034/viewer/2022051818/54b3a0324a795969528b45c4/html5/thumbnails/20.jpg)
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?