1. Children with Complex Needs
Beth McGeehan
Nurse Co-ordinator for Complex Disabilities

2. 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

3. 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

4. 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

5. 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.

6. Empowerment
The concept of empowerment is intimately linked to the principle of rights and responsibilities for individuals.

7. 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

8. 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.

9. 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.

10. GIRFEC

11. 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.”

12. 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

13. Delivering Care, Enabling Health (2006)
Considers nurses contribution to health care policy
3 crucial areas:
Culture
Capacity
Capability

14. Culture Working as part of multi-agency /multi-disciplinary teams
Respecting peoples rights and diversity
Education and research base to support practice

15. Capability Nurses rising to the health challenges
Supporting self-care, patient empowerment
Managing long-term conditions
Reduction of health inequalities

16. 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

17. 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.

18. 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.

19. 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
School Nurses/special needs
Rainbow House
Paediatric nurses
PACT Team
Continence nurse advisors
Health visitors, district nurses. Healthcare assistants

20. 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.

21. 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

22. 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

23. 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

24. Improving Service Quality and Capacity
Services recognise, recruit and develop the right people.
Development of Training and Teaching Frameworks

25. 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