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

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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?