Transcript Development of the CEN National Network

Development of the CEN National
Network
Dr. Patricia D.Jackson
Dr. Marit Boot
April 2010
National Context
•
•
•
•
•
•
•
•
•
For Scotland’s Children
Building a Health Service Fit for the Future
Same as You
Better Health Better Care
Delivering a Healthy Future: An Action
Framework for Children and young People’s
Health in Scotland
Revised ASL legislation
Curriculum for Excellence
National Delivery Plan for Children and Young
People’s Specialist Services in Scotland
GIRFEC
GIRFEC Core Components
• Shared understanding among agencies, leading to
improved service
• Central importance of children, young people and
their families in the determination of service
provision. (Person centred care)
• Co-ordinated and uniform approach to assessment
for, and provision of service.
• Streamlined planning,assessment, and decision
making. ‘Right time Right place’ provision of care
• Maximising use of appropriately skilled workforce
• Ensuring a confident and competent workforce
• Capacity to share demographic,assessment and
planning information electronically within and
across agency boundaries.
Roots of the NMCN development
• Scottish Complex Needs Group
• Support from Voluntary sector
organisations for children with complex
needs.
• Proposal to Children and Young
People’s Strategy Group ( CYPSG )
• Inclusion into the National Development
Plan
How are we commissioned
What Resources do we have?
•
•
•
•
Lead agency National Services Division
Dr Marit Boot Network Manager( March2009)
Dr Patricia Jackson Lead Clinician(March 2009)
Sarah Legget Administrative Assistant(Feb 2010)
(all part-time)
• Support of the existing Scottish Complex Needs
Group
• Members of the Network,particularly those on
working groups
Defining the Group
Group defined by their
complexity of healthcare, rather
than their diagnostic label
Names, definitions and criteria
• Children with complex needs
• Children and young people with Multiple and
Complex Disabilities
• Children with complex and continuing health needs
• Children with special health care needs (CSHCN)
• Technology dependent children
Definition
(from Scottish complex needs group)
Complex needs require multi-professional interventions and
support, such that no one agency or discipline has a
monopoly.
Children have severe or profound impairment in at least:
3 of the following
areas.







motor
speech and language
vision
hearing
cognitive ability
behaviour
additional chronic
health needs
PLUS






Need for at least 2 additional
resources
therapy services
additional nursing care needs
additional educational
resources
additional social care
resources
mental health services
Needs are sustained: more than 6 months and ongoing
Decision Support Tool Categories
•
•
•
•
•
•
•
•
•
•
(From the English Framework)
Challenging Behaviour
Communication
Mobility
Nutrition, Food,Drink
Continence and Elimination
Skin and Tissue Viability
Breathing
Drug Therapies and Medicines
Psychological and Emotional
Seizures
Scottish Context CEN assessment
Support Needs System (SNS)
Impairment categories
•
•
•
•
•
•
Learning and mental functions
Communication
Motor skills
Self Care
Hearing
Vision
plus Additional Supports
Assessment criteria
Scottish CNG:
2 or more
profound/severe
impairments + 2 or
more types of
resources
English NSF:
1 or more
priority/severe
impairments or 3 or
more highs
7200
2 profound impairments
2 or more severe
impairments
320
1 priority/severe
impairment
4 or more severe
impairments +
enteral/parenteral
feeding
2 or more severe
impairments +
ventilation/CPAP
Exceptional healthcare needs NMCN CEN:
4 or more severe impairments + enteral/parenteral feeding OR
2 or more severe impairments and ventilation/CPAP
Assessment criteria
Scottish CNG:
2 or more
profound/severe
impairments + 2
or more types of
resources
English NSF: 1
or more
priority/severe
impairments or
3 or more highs
2 profound
impairments
Aim: Over a period
of 5 years have an
effect on all
services involved
in the care of
complex needs
children in
Scotland
2 or more severe
impairments
1 severe impairment
4 or more severe
impairments +
enteral/parenteral
feeding
2 or more severe
impairments +
ventilation/CPAP
Exceptional healthcare needs NMCN CEN:
4 or more severe impairments + enteral/parenteral feeding OR
2 or more severe impairments and ventilation/CPAP
49 children in Lothian who meet the
CEN assessment criteria
10% is ventilator dependent (5/49)
10% require continuous positive airway pressure overnight (CPAP) (5/49)
88% require enteral feeding (43/49)
86% severe learning and mental function impairments (42/49)
84% severe communication impairments (41/49)
92% severe motor skills impairments (45/49)
100% severe self care impairments (49/49)
6% severe hearing impairments (3/49)
45% severe vision impairments (22/49)
49 children in Lothian who meet the
CEN assessment criteria
• CEN assessment criteria based on the complexity of the
services and technology involved rather than the diagnostic label
• CEN present a range of conditions and diagnoses
• Cerebral Palsy (35%) and Duchenne Muscular Dystrophy
(10%) were recorded with the highest frequency as part of the
diagnosis
Estimated 320 children in Scotland who meet the CEN
assessment criteria
Estimated numbers of CEN based on Lothian
numbers and population numbers (0-19 year) of NHS
boards:
Argyll & Clyde (25)
Ayrshire &Arran (23)
Borders (7)
Dumfries & Galloway (9)
Fife (23)
Forth Valley (19)
Grampian (33)
Greater Glasgow (53)
Highland (13)
Lanarkshire (37)
Lothian (49)
Orkney (1)
Shetland (2)
Tayside (24)
Western Isles (2)
service users
CEN Meeting 17 June
voluntary sector
nurses
paediatric consultants
therapists
managed clinical networks
regional planning groups
CHP
education/NES
councils
Steering groupEducation and
Scottish Government
trainingDataAudit andNSD
researchService users Pathways
of
psychology
care
social work
research
management
Develop care co-ordination, keyworker system
Training for parents and professionals
Development of care standards, equity
Early recognition of CEN
Improved communication parents/professionals
Document support needed for families to keep CEN at home
Improve communication between services
Transition into adult services
Information about services and contacts
Health passport/stick with summary of care
NMC N C E N c ontac ts in eac h NHS board area
(510 c ontac ts in A pril 2010)
L othian
G reater C lyde & G las gow
National
Tays ide
F ife
L anarks hire
G rampian
Highland
A yrs hire & A rran
F orth V alley
B orders
Dumfries & G alloway
W es tern Is les
E ngland
O rkney
S hetland
Getting Involved
• Steering Group
•
•
•
•
•
Service User Group
Pathways Group
Data Collection Group
Education Group
Audit and Research Group
Service users
Pathways of care
Education and
training
Steering group
Audit and research
Data
The CEN NMCN is well placed to do the following:
• Identify and map cen children across Scotland
• Develop measurable quality standards for care(with
NHSQIS)
• Recommend practical pathways for admission , discharge,
use of OOH services etc
• Share procedural protocols eg; tracheostomy
care,gastrostomy care, pain management tools
• Link to existing specialist groups and networks whose
work overlaps eg; Palliative care group, Muscle network
• Engage with colleagues providing care in all tiers of
Health to identify training and support needs to facilitate
care as close to home as possible (with NES )
Cont’d
• Explore use of joint/shared care clinics to facilitate sharing
of knowledge/education to local health care team
• Ensure continuing planned development and training of
specialist workforce to support local care. (Skills will need
to be shared Scotland wide.)
• Establish best practice model for the management of this
group of children and young people in education and social
settings. (includes management of health care procedures
training for non health staff)
• Explore uniform joint funding process with LA colleagues
• Develop audit / research base
• Encourage and share innovative models of care( including
greater use of telemedicine)
So what’s happened so far?
• Launch of the network in June 2009 with a
stakeholder meeting.
• Development of the CEN website to facilitate
communication
• Engagement with parents and carers.
• Development of links with statutory and voluntary
sector staff.
• Prioritisation of work plan targets
• Provision of information for Regional Planning
Groups Year 3 bids to Scottish Government
• Development of research/audit tool for pattern of
admissions
• CEN Education Day on Tube Feeding Feb 2010
• Development of educational resources
NUMBER OF ADMISSIONS FOR LONG-TERM MEDICAL INTERVENTIONS OVER TWO Y
16
14
NUMBER OF CEN
12
CPAP
10
VENTILATION
8
ENTERAL FEEDING
6
ENTERAL FEEDING +
VENTILATION
4
2
0
NUMBER OF ADMISSIONS TO HOSPITAL OVER TWO YEARS
LENGTH OF EACH ADMISSION OVER TWO YEARS
200
180
NUMBER OF ADMISSIONS
160
140
120
100
80
60
40
20
0
LENGTH OF EACH ADMISSION (DAYS)
Conclusion
• CEN attend frequently but only just over half
are admitted to hospital for a night.
• With different approaches to care and support
from health professionals in the community a
number of CEN children may be managed at
home and the number of hospital attendances
reduced.
Next steps for NMCN CEN
• Data collection, mapping of those children who meet the
CEN criteria?
• Identifying and disseminating good practice in working
with CEN
•Raise awareness of the issues related to the care of CEN
• Research on number and reasons for hospital
admissions of CEN in all areas of Scotland
• Training and education related to CEN (enteral feeding,
communication between parents/carers and healthcare
professionals)
Next steps for NMCN CEN
• Joint work with Palliative Care Group on the
development of the Emergency care/ End of life plans
• Launch of the CEN Care Pathway
29th Sept 2010 at Teachers Building Glasgow
• Work with Scottish Government and Health Boards to
ensure consistency of approach to Care Co-ordination
for CEN children within the implementation of GIRFEC
nationally.
• Look at best practice in OOH care and Emergency
hospital admission.
Please contact the NMCN for
Children with Exceptional
complex healthcare Needs
@
CEN
www.cen.scot.nhs.uk
Issues
• National data collection permissions
• Integration of care co-ordination within
GIRFEC model
• Are we matching the direction of travel at
strategy/policy level ?