Stakeholder Day
17th June 2009
Why is it a good time to be
developing this Network?
National Context
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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 leading to improved service
• Central importance of children, young people and
their families in the determination of service
provision
• Co-ordinated and uniform approach to assessment
for and provision of service
• Streamlined planning and 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.
What’s gone before?
Scottish Complex Needs Group
• Started just over 5years ago
• Health professionals from nursing and medical
backgrounds working with children with severe
complex needs. More recently parent group
representatives.
• Forum for information sharing and to problem
solve, so that we didn’t all ’reinvent the wheel’
• Meets 2-3 times a year
• Restricted because it wasn’t funded, and unable to
expand to everyone who needed to be involved
What have we done so far?
• Discussed common protocols for training for
carers and parents for particular tasks eg
tracheostomy care , gastrostomy care
• Looked at best practice in relation to care
planning, pathways for entry and discharge from
hospital, end of life planning, transition to adult
services
• Debated how to best support domiciliary care in
the community
• Shared successes and failures!
• Agreed the need for and put forward a proposal
for an NMCN for children with Complex
Healthcare Needs
Definition
Who is the Network for?
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.
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motor
speech and language
vision
hearing
cognitive ability
behaviour
additional chronic
health needs
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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
Because of recent changes to the
SNS we are currently looking at,
additionally, using a modified
Decision Support Tool developed
from the Dept of Health in
England’s consultation document
Children and Young People with
Continuing Care Needs
Decision Support Tool Categories
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Challenging Behaviour
Communication
Mobility
Nutrition, Food,Drink
Continence and Elimination
Skin and Tissue Viability
Breathing
Drug Therapies and Medicines
Psychological and Emotional
Seizures
Five levels of Need Scored
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Priority
Severe
High
Medium
Low
Continuing Care Criteria reached
with
• 3 Highs
Or
• 1 Priority
Or
• 1 Severe
Who do we Mean?
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Case Scenario
Boy with inherited neurodegenerative disorder.
1 unaffected sibling
Gastrostomy fed
Asthmatic
Severe spasticity and nocturnal spasms.(Has
Baclofen pump for symptom control)
Overnight CPAP
Palliative care team and Pain team link
Tissue viability nurse
Changing equipment needs
Due to transfer to adult services
Number of Children with Complex Needs
in Scotland
Number with Exceptional Health Care
Needs
• an estimated 7,200 children in Scotland meet the
definition of children with complex needs
( Currently 3321 of these children are registered on
the Support Needs System SNS. Other data
systems exist in some Health Boards )
• Core of approx 800children with ’exceptional’
health care needs
( This is the group for whom we have been asked
initially to develop the NMCN )
Children and young people will
be defined by the complexity of
their care rather than by
diagnostic labels
This will mean a need to have close
links with other specialist
care/clinical networks
What may be needed?
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Ventilation planning
Therapy provision
Equipment provision
Housing / Heating
Primary health care
Acute care provision
Educational provision
Leisure activity
Family breaks
Parental and Sibling
support
• Specialist Respiratory
support team
• SALT, OT, Physio, Dietitian
• L.A. and/or Housing
association
• Joint equipment store
(hopefully)
• Primary care / CHP
colleagues
• Tertiary and District General
hospital support
• L.A. Education Dept support
• Social Work and Voluntary
agency support
Results from the National Delivery
Plan Consultation
What do Parents and Carers Want?
Integrated and Coordinated services
• Children with complex needs are first and foremost
children and should be supported to use general and
local services wherever possible
• Child and families to be fully involved in planning and
influencing the provision of care
• Care to be coordinated across health, local authority
and voluntary sector providers by key worker
• Agencies to share appropriate information (with
consent) in order to ensure greater coordination of
care and improved quality of services
Decision Making
• Timely decisions to be made about the funding of packages of
care and the provision of equipment
• “Decision making around funding was perceived to be a
difficult area as was obtaining clarity about budgets across
all agencies concerned. There was a lack of control and
flexibility around the sums of money provided. The
funding available was unpredictable and it was not always
clear where the source of funding was, or indeed where the
actual sources of funding should be.
(Perth Consensus conference Jan 04)
A Joint Health and Local Authority Funding mechanism in each
board is essential to addressing these issues
Offer choice
• Boards should be able to offer services and/or direct payments
to families in line with the current legislation within local
authority services
Aims of the NMCN
• Ensure complete identification, and up to date data
collection for this group of children and young people
• Agree measurable quality standards for care (NHSQIS)
• Agree a methodology for a standard approach to
assessment and decision making, which links to GIRFEC
process
• Establish consistent practice for management of admission
and discharge processes and use of ‘out of hours’ services
• Identify education and support needs for locality health
services to manage children closer to home (NES)
• Explore use of joint/shared care clinics to facilitate
education and sharing of knowledge to support delivery of
more care in local settings via primary health care team
Aims for MCN
(cont’d)
• Consider potential of telemedicine for this group of
children
• Develop integrated pathways and protocols for treatment
of specific types and groups of conditions in conjunction
with other specialist groups eg. the Muscle Network,
Palliative Care Services
• Establish best practice for the management of this patient
group within education and social settings, to include
management of health/care procedures and training
programs required for staff. Standardised approach.
• Consider joint funding process with LA colleagues
• Support/Initiate appropriate audit and research
Who needs to be involved with the
Network?
• Basically everyone at all levels of health care
who have an interest in provision of care to
this group of children and young people,
especially those who can be trained and
supported to ensure that care is provided as
close to home as is possible
• Regional Decision making groups with
budgetary responsibility
• Parents and Children
• Local Authority Representatives
• Voluntary Organisations
So How Can You Help?
Hoping you’ll all feel
motivated to:
Share your ideas of what you
feel is needed for this
defined group of children.
Identify what you feel the
NMCN could do for you
and how best to
communicate information
Suggest how best to achieve
representation of your
views on the Steering
Group., and Working
Groups.