Cerebral Palsy Clinical Network

The purpose of the Cerebral Palsy Clinical Network is to establish a national multi-disciplinary network that will support clinicians working across community, primary, secondary and tertiary services to deliver high quality, cost effective and integrated Cerebral Palsy (CP) programmes of care for children, youth and their whanau.

CP is the most common cause of physical disability in childhood, affecting upwards of 1 in 500 children born in New Zealand each year. Caring for a child with CP is often complex, involving many clinicians and multiple services.

The CP Clinical Network is a quality improvement programme, with the aim of providing clinical leadership in the development and maintenance of a nation-wide clinical service for children and youth who seek services and support for CP care. This network will be linked with the new Child Development and Disability Clinical Network. An important feature of the CP Clinical Network will be ongoing input from, and involvement of, both individuals with CP and families of a child with CP, through representation in each work stream and through linkages with the Cerebral Palsy Society Inc. NZ

Key personnel:

Prof Sue Stott (Interim Chair), Auckland DHB
Dr Malcolm Battin, Neonatologist, Auckland DHB
Dr Jimmy Chong, Paediatric Rehabilitation Specialist, Starship
Dr Angelica Allermo Fletcher, Neonatologist, Capital Coast DHB
Dr Meghan Sandle, Developmental Paediatrician, Te Whatu Ora Hutt Valley
Sally Kidd, Paediatric Physiotherapist, Capital Coast DHB
Gaela Kilgour, Physical Educator & Paediatric Physiotherapist, Timaru
Dr Anna Mackey, Research Officer, NZ Cerebral Palsy Register, Paediatric Orthopaedics, Starship
Marcus Powell, Ministry of Education, Rotorua
Mindy Silva, Paediatric Physiotherapist, Nelson
Dr Sneha Sadani, Consultant Paediatrician, Waikato DHB
Meg Smith, Co-Chair, Consumer Rep (CP Society NZ), Auckland
Alexandra Sorhage, Research Officer, NZ Cerebral Palsy Register, Paediatric Orthopaedics, Starship
Cynthia Ward, CEO, Nurse Specialist, True Colours Children’s Health Trust, Hamilton
Amy Hogan, Consumer Rep (CP Society NZ) Auckland

A number of work streams have been established following the first meeting of the CP Clinical Network in November 2019. The first four are underway now with a timeline of June 2020. The next four are in the pipeline for the subsequent year.

1. Develop and promote best practice recommendations and resources for paediatric health care professionals, which support timely diagnosis and early intervention for CP, with an initial focus on 0-2 years. Clinical Leads: Dr Angelica Allermo Fletcher, Dr Sneha Sadani
   See https://starship.org.nz/guidelines/early-diagnosis-of-cerebral-palsy-cp-intervention-and-surveillance/. In addition an early therapy intervention checklist, references and additional information for therapists have been developed to support early diagnosis and intervention.

2. Ensure that the voices of children and young people CP and their families/whānau are heard and responded to in health-related activities. Clinical Lead: Meg Smith
   See more about this work on the attached link, in which the Cerebral Palsy Society Inc. has captured the insights of children living with CP by creating a video telling some of their individual experiences of living in the community, their dreams and aspirations.
   https://cerebralpalsy.org.nz/the-voices-of-our-children-highlight-their-truth/

3. Design and develop improved transition of young people with CP from paediatrics into adult health services. Clinical Lead: Kate Hall

4. Support the development of a sustainable pathway for the NZ Cerebral Palsy Register so that data from the Register can feed into other work streams. Clinical Leads: Dr Malcolm Battin, Prof Susan Stott

5. Provide support of the provision of care for diagnosis and understanding of key aspects of specific treatments e.g. SDR & Intensives amongst all DHBs and Ministries. Clinical Lead: Gaela Kilgour. See an overview of the pathways currently accessed by New Zealand whānau considering SDR surgery.

6. Establish a plan to enhance opportunities to provide education and networking across the sector (including primary healthcare) to provide the dissemination of national and international research and concepts. Clinical Leads: Clinical Reference Group (CRG)

7. Promote active participation in all aspects of life for people with CP. Clinical Leads: CRG

8. Develop a 5 year Strategic Plan for Cerebral Palsy Health Services. Clinical Leads: CRG
   

International guidelines and resources for transition

The New Zealand Cerebral Palsy Clinical Network is working towards developing a nationwide transition service for young people with cerebral palsy that works in the New Zealand context.

Read an overview of current international guidelines relevant to transition in cerebral palsy and commentary about their relevance in New Zealand. While generally written for the use of health providers and service planners, they all have useful information for young people and caregivers seeking to understand and advocate for transition.