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

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