Download Continuing health care needs

Children with Complex Needs
Beth McGeehan
Nurse Co-ordinator for Complex
Disabilities
Continuing
Health Care Needs
The Children's Continuing Care Nursing
Forum was formed in 2007 to develop best
practice and disseminate the evidence base
of what works best for
children and young people with complex
health care needs
Focusing on Inclusion
Access to inclusive services is firmly
placed within the context of recent
legislation and policy initiatives.
• Disability Discrimination Act 2001
• Education (Additional Support for
Learning) Scotland Act 2004
• Disability Equality Act 2006
Community Inclusion
• Disabled children and young people should be able to participate
in all aspects of community life
• Schools are not only part of the community – they are
communities themselves
• Children requiring intimate and personal care will vary in age,
background and ethnicity
• It may be necessary for a range of staff to carry out intimate
care/invasive procedures in a variety of settings
Children's Rights-Strategic
Application
• The convention provides children with 3 types of
rights
• Provision-of services which aid their health,
development and welfare
• Protection- the right to be protected from injury,
harm and exploitation
• Participation – the right to have a say in decisions
which affect them.
Empowerment
The concept of empowerment is
intimately linked to the principle of
rights and responsibilities for
individuals.
Me Too !
Mencap 2001
• Let me have fun with other children
• Let me learn to negotiate, take risks
and make compromises
• Enjoy physical activity, sports and
games
Values Underpinning Service
Provision
•
Access and empowerment
Clear standard of service provision for disabled children and their
families from children's services.
•
Responsive services and timely support
Health, social services and education will provide a coordinated, timely,
integrated service provision to disabled children and their families.
•
Improving quality and capacity
In partnership with key agencies continue to increase the provision and
quality of key services for disabled children and their families,
including short breaks and childcare provision.
The Key Message
•
Needs of children must be seen within an empowered family context
•
Assessments for children’s continuing care must capture and consider
the needs of the whole family. The child and family centred
assessment process must be at the very heart of a children’s
continuing care assessment process. All other aspects of the
assessment process must be seen in the context of this assessment.
•
Children’s continuing care assessments will have a very different
focus to adult continuing care due to the principles of children’s
practice which are wide and varied.
•
Two key principles are paramount in children’s continuing care: -
•
•
Parents are the experts and primary carers.
Home is the centre of caring.
GIRFEC
I Got Life!
Putting individuals and families in control
to self manage complex and continuing
healthcare needs
“Improving care for children and young people
with a long term condition is one of the biggest
challenges facing health and social care
organisations and demands wholesale change in
the way they think, train and deliver/design
services. The role of self care is crucial in people
maintaining good health and taking care of their
condition. Supporting self care provides benefits
all round.”
Supporting Self Care
• Historically nursing practice has not
focussed on developing self care
• Focus on control and cure – medical model
of disability
• Truly supporting and empowering Children
& Young People, requires all nurses to
practice differently – social model of
disability
Delivering Care, Enabling Health
(2006)
Considers nurses contribution to health care policy
3 crucial areas:
1. Culture
2. Capacity
3. Capability
Culture
• Working as part of multi-agency
/multi-disciplinary teams
• Respecting peoples rights and
diversity
• Education and research base to
support practice
Capability
• Nurses rising to the health challenges
• Supporting self-care, patient
empowerment
• Managing long-term conditions
• Reduction of health inequalities
Capacity
• Workforce planning
• Nursing roles to meet current and future needs
of the population –children with complex health
care needs
• Flying start NHS – individuals first experience
and influence
• Clinical supervision – flexible
Barriers to accessing
services
• Despite these improvements, parents
identified problems in accessing universal
services, hindering inclusion of their
disabled child in society and placing
unnecessary burdens on already stretched
specialist services.
• A lack of skills and training make situations
more difficult and upsetting for disabled
children and their families.
The Workforce – Current Situation
Workforce issues need to be seen in the context of an
increased emphasis on mainstreaming provision of
services for disabled children.
Disabled children and young people and their families can
expect to come into contact with the full range of the
children’s workforce, depending on the complexity of
their needs.
Existing services/nursing responses
Community Paediatric
Children’s Nurses
Yorkhill specialist
nurses & inpatient
services
Community Learning
Disability Nurse
Children
And
Families
General Hospital
Nurses A/A NHS
Rainbow House
Paediatric nurses
PACT Team
Health visitors, district nurses. Healthcare
assistants
School
Nurses/special needs
Continence nurse
advisors
The Importance of the
Workforce
• Good quality staff can transform a child and
families experience of services. For many
people, an outstanding member of staff can
make an enormous impact on their lives by
providing support, information, empathy and
expertise.
Good Practice
Staff and carers are placed in a position of
great trust and responsibility. They are
required to:• Attend to the safety and comfort of the
child/young person
• Ensure he/she is treated with respect and
dignity
Health Care Plans
(Administration of Medicines 2001)
• Each child with additional needs should
have a health care plan
• It should include clear instructions on the
specific procedure
• Information for dealing with an emergency
situation
• Should be drawn up in conjunction with the
parent by the health care professional
Health Care Plan
• Plan should be approved by a staff grade
paediatrician or nurse from the children’s
community nursing service or school health
service
• It should be reviewed annually
• Should identify all training required
• Responsible agency for delivering training
• Identify named staff trained
• Date of review/training should be identified
Improving Service Quality
and Capacity
• Services recognise, recruit and
develop the right people.
• Development of Training and
Teaching Frameworks
Fulfilling the Potential of
Every Disabled Child.
The Managed Clinical Network for Children
with Exceptional Health Care Needs is an
opportunity to transform and improve
services, outcomes and life chances for
some of the most disadvantaged children
within Scotland