ePalliative Care Summary
(ePCS) in Children and Young
People
CATSCAN 16th December 2009
Dr Peter Kiehlmann
GP, Aberdeen & National Clinical Lead
Palliative Care eHealth
peter.kiehlmann@scotland.gsi.gov.uk
http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWell
http://www.ecs.scot.nhs.uk/epcs.html
The maze of trees
Children & Young People
in Living and Dying Well
“ to ensure a comprehensive approach to
palliative care based on clinical need
and not diagnosis, age, post code,
creed or ethnicity”
Ann
– 43 years
– Diagnosed Breast cancer Dec
– Intensive investigations
– Planned surgery
– Cancelled
– Rapid deterioration – liver, brain spread
– Died after weekend 999 admission Feb
… family comments
• “I feel that even when my mother was
diagnosed with cancer that I was left to
deal with it without professional help…”
• “…although I argued and screamed at the
hospital doctors they would not listen until
it was too late….”
Improving experience?
• No key GP- changes in practice
• Communication & coordination in secondary care
• Failure to recognise divide between
expectations and reality
• Impact of investigations
• Symptom control
• Significant Event Analysis
• Bereavement support
ePCS - What is it?
An electronic Palliative Care Summary
• An extension to Emergency Care Summary (ECS) &
• Gold Standards Framework Scotland (GSFS)
• For use both In Hours & OOH
• ePCS replaces current faxed communications
• Allows GPs & Nurses to record in one place
Diagnosis, Rx, Pt Understanding & Wishes,
Anticipatory Care Plans, review dates, lists for
meetings
3 Steps in Gold Standards
Framework
3. Plan
2. Assess
1. Identify
+
m
m
o
c
e
t
ca
i
un
GSF is about…
• Enabling generalists
- improving the confidence of generic staff
• Care for all
- with any end stage condition, all care settings
• Patient led
-focused on needs of patients, families & carers
• Pre-planning care in the final year or so of life,
proactive rather than reactive care
• Care closer to home
- decreasing hospital admissions and deaths
• Organisational system change
- the right care at the right time for the right patient
GSFS - Key Tasks - 7 Cs
•
•
C1
Cancer Register & Team Meetings, Pt info, Treatment cards, PHR
• C2
•
Communication
Co-ordinator
Key Person, Checklist
C3
Control of Symptoms
•
Assessment, body chart, SPC etc
•
C4
Continuity Out of Hours
Faxed Form
•
•
•
•
•
C5
Continued Learning
Learning about conditions on patients seen
C6
Carer Support
Practical, emotional, bereavement, National Carer’s Strategy
C7 Care in dying phase
ECS
•
•
•
•
New GP Contract
GP not responsible 24/7
Risks to safe, effective care
Patient info from GP computers
-> ECS store twice daily
• Medication & Allergies
• 97% of GP Practices
• >5 million patients
Explicit Consent to view
• ‘Read only’ available to…
• NHS24, A&E, AMAU, SAS
ePCS Overview
GP /DN
consultation ePCS
OOH
clinician
NHS
24
ePCS display
A&E
update
ECS
Store
Practice
Server
Ambulance
1. During consultation
Practice Admin.
Staff
Audit
2. Due to prescription
trail 3. Team meeting or
other contact
TBD…
ePCS Dataset
–
–
–
–
–
Consent - Palliative care data transfer
Carer details and key professionals
Diagnosis – as agreed by patient by pt & GP
Current Rx –Rpt, 30/7 Acute, Allergies;
Patient wishes
• Preferred Place of Care [PPoC] )
• DNA CPR decision
) Anticipatory
– Patient’s & Carer’s understanding of ) Care
diagnosis/prognosis
) Plan
– Just in Case – Rx & equipment
)
– Advice for OOH care
)
• GP Mobile no., death expected? Cert. etc )
When will it be available?
• Pilots completed Aug 09
– EMIS, Vision – Grampian, Gpass – A&A, Lothian
• Issues addressed included
– acceptability & ease of use,
– improving the consultation & communication,
– anticipatory care planning,
• NHS Lothian Rollout Sep 09
• Evaluation, national rollout 2010
• Link with Board Leads for timings
– Palliative Care, eHealth,OOH
Using ePCS in practice –
a continuing process
• Does this person have Palliative Care Needs?
– Choice / Clinical / Surprise Q from Prognostic Indicator Guidance
•
•
•
•
•
•
•
Add to Pall Care Register,
Once Consents to send ePCS ->OOH,
agree Medical History, set review date
Once consented any new info goes automatically
Not expected to complete in one go!
Complete pt wishes and Understanding, DNA CPR, record
“Just in case” Rx and Equipment as appropriate
Regular review at PHCT
Keep updating!
No. pts in need of supportive/ palliative
care at any point in time, per average GP
Function
High
Function
High
Death
Low
Organ failure
Months or years
Death
Low
Weeks, months, years
Cancer
Function
High
Practice might have 18 patients /full time GP on the supportive and palliative care register
Death
Low
Many years
Dementia, frailty and decline
ePalliative Care Summary –
using for Children/Young People
Could Paediatricians…
• Identify children & young people who may benefit
from being on GP Palliative Care Register?
• Inform GPs of these children and families?
• Amend Clinic/Discharge Letters using ePalliative
Care Summary dataset?
• Involve GP teams in ongoing care more?
• Could GP team…
• Be more involved in going care?
• Better link with Hospital
teams esp. around transitions?
• Consider adding to ePCS earlier?
The “surprise” question
• “Would you be surprised if your patient was
dead in 12 months?”
• if this is applied to CYP/young adults, many with
true palliative needs will be missed….so:
• Within the age group 0-24.9 yrs…
• “Would you be surprised if your patient was
dead in 5 years?”
• This will need specialists to help advise…and a
culture change with communication
ePCS – Benefits
• Natural progression from GSFS & ECS
• Fits into day to day work of GPs & DNs
• Aims to identify patients “upstream”
ie last 6-12 months, not just last days/weeks
• Encourages Anticipatory Care Planning
• Prompts to remind to ask about “difficult” issues
– “Just in Case”, DNA CPR, PPoC
• Shares critical info. on vulnerable
patients at important times.
• OOH & Secondary Care say
it transforms care
• Patients & carers reassured
• Safer, better experience
Questions?
•
How best to roll out in your Board?
– Lothian Pall Care/Oncology Discharge letters
– Benefits to Sec Care EPS /ePCS
•
•
Meetings planned with key stakeholders
– eHealth
– Primary Care
– Palliative Care
– OOH
Living and Dying Well delivery 2010
–
–
–
–
–
–
Assessment Tools
Anticipatory Care Plans
Palliative Care DES ongoing
Communication Training
National Resuscitation Policy – DNA CPR
“Public awareness Death, Dying & Bereavement”
ePCS Overview
GP /DN
consultation ePCS
OOH
clinician
NHS
24
ePCS display
A&E
update
ECS
Store
Practice
Server
Ambulance
1. During consultation
Practice Admin.
Staff
Audit
2. Due to prescription
trail 3. Team meeting or
other contact
TBD…