Getting it right for every child

1. Getting it right for every child Children with Exceptional Healthcare Needs 29.09.10

2. Getting it right for every child • Getting it right for every child is the national approach to improving outcomes for children and young people in Scotland, whatever their needs/risks • Based on research and evidence of best practice and proven benefits • It requires agencies to adapt and streamline their practices and systems around the National Practice Model.

3. Improved Outcomes For All Children And Young People Building on good practice * It’s everyone’s job to make sure I’m alright * For Scotland’s Children * The ethos of the Children’s Hearings System • Education: • Curriculum for Excellence • Support for Learning • Universal • Health: • Better Health Better Care • Equally Well • Universal • Special Priorities: • Early Years Framework • Achieving our Potential • Strategic GIRFEC APPROACH: Core Components * Shared Principles and Values * Practice Model Culture Systems Practice Children, Young People, Families - Needs/Risksand any other relevant issues GIRFEC Positioning Specific policies

4. Early Years Framework Equally Well Achieving our Potential Support for Learning More Choices More Chances Youth justice LAC Better Health Better Care Hall 4 Towards a Mentally Flourishing Scotland Curriculum for Excellence Road to Recovery Policy Framework HOW WHAT GIRFEC = TRANSFORMATIONAL CHANGE

5. Development to implementation • Children's Summit -The Pledge • Guide to Implementing Getting it right • CEL 29 2010: Met NHS Chiefs • National engagement - aligning GIRFEC with Early Years and other Social frameworks • Child Protection Consultation • Future Scrutiny • Benefits

6. More details? Marj.stewart@scotland.gsi.gov.uk 0131 244 0277 www.scotland.gov.uk/gettingitright

7. Getting it Right for Children with Exceptional Healthcare Needs The Highland practitioners view Presented by Fiona Shevill (Social Worker Complex Needs)

8. Practitioners Consulted • Children and Families • Community Children’s Nurses/Specialist Nursing Staff. • Community Paediatricians • Health Visitors • Paediatric Physiotherapists, OT, SALT • SW staff in Community Disability Team and Respite unit in Inverness. • Colleagues in CHAS • Colleagues in Education Services

9. GIRFEC Principles • MA working is not new especially in relation to this group of children. • Key Working/Care Coordination already well established in several areas pre GIRFEC. • Integrated practice well embedded in many settings using the ‘Team around the Child’ approach. • Important to remember we already have the skills/practice base to bring to the GIRFEC model!

10. Positive Outcomes following Implementation • Single assessment framework across agencies. • One MA Child’s Plan with all identified partners around the table and contributing to the plan. • Child and families views central to the plan. • Interactive electronic Child’s Plan being piloted with Child friendly format for children to input their views directly via pc.

11. Clearly defined professional roles via named person and Lead Professional role. • Shared language across agencies and different professional disciplines. Reduction in agency specific terminology. • Clear action plan with defined timescales for review. • Strengthened MA working through compilation and review of the plan. • Appreciation of different skills within the MA team.

12. Feedback from Families • Everyone involved in their child’s care, working and communicating as a team. • Key information about their child now in one document/no longer multiple assessments with the need to repeat their story over and over. Difficulty however in making sense of plans when too long. • Action plan feels realistic with clear outcomes, responsibilities and timescales. • Meetings more efficient where assessment and plan is updated in advance by Lead Professional in collaboration with family.

13. Challenges of GIRFEC for Children with Complex Health Needs • Children with Complex needs do not follow a predictable developmental path. In practice the GIRFEC model appears to fit better for those children who do. • Pressures outweigh strengths which can compound an already daunting situation for families. • Important for strengths not to feel tokenistic…we should not be making children fit the plan.

14. Integrating all of the complex assessment information on a child can be difficult. • Plans quickly become too cumbersome to be useful. • Impossible to review all of the above in one MA meeting. • Issues as other processes running in parallel, e.g. IEP/CSP meetings/specialist medical reviews.

15. Ensuring the value of chronologies is not overlooked as not an integral part of the Child’s Plan. • Recognising the specialist expertise of the lead agency, most often ‘health’, whilst ensuring a holistic approach to assessment of the child and their family. • Lead Professional role can seem overwhelming in light of the large professional team around these children, and the responsibility for coordinating input to and updating the Child’s Plan.

16. Inter-agency Challenges • Different pace of implementation of e-GIRFEC tools. • Incompatibility of e-systems meaning assessment information and Child’s Plan’s not easily shared. • Debate about which agency should take on LP role, where all three agencies inputting to a child’s care. • Maintaining good communication at a time of rapidly changing circumstances or sudden deterioration in a child’s health.

17. Meeting the Challenges • Adapting the My World Triangle to address the very specific and specialist needs of this group of children. i.e. • Complex health needs/palliative care/end of life planning. • Quality of life issues/helping children communicate their wishes • Support during hospital admissions • Domiciliary nursing • Respite/daycare • Support to siblings • Access to equipment/mobility issues/M&H • Access to education • Adapted Housing • Income maximisation • Bereavement support

18. My World Triangle

19. Certain protocols and guidance held as separate specialist assessments, referenced within the MA plan. • Regular core groups to address particular areas for discussion/review e.g. respite care. Responding flexibly to families when requesting smaller/less formal reviews. • Sensitive approach to end of life planning which must be done separately with relevant professionals/family, and should inform the Child’s Plan, but not be recorded in any detail within the plan. • Identification of the Lead Agency to identify LP role. • Key person within each agency to collate relevant information and pass to LP to integrate within Child’s Plan. • In the most complex cases, consideration to be given to the LP responsibilities being shared. • Ongoing MA training crucial to moving forward together and commitment to the integrated approach.

20. Case Example. Baby A. • Born at 39 weeks immediately transferred to Aberdeen children’s hospital for surgery to small bowel. • Cystic Fibrosis diagnosed at 2 weeks. • Noted by CF physio to have significant head lag, floppy when prone. Duchene Muscular Dystrophy diagnosed at 5 mths. • Possible third diagnosis ? Underlying neurological condition/CP.

21. Prognosis given two chronic conditions, very poor, although hard to accurately predict as extremely rare. • Underweight, necessitating gastrostomy/NG feeding. • MH difficulties ; both parents. • Placed on CP register due to acrimonious parental relationship/physical neglect. • LP role moved from health to SW then back to health when CP concerns reduced/de-registered. • Absolute need for LP responsibilities to be shared in cases like these.

22. Case Example Maternal Gran Half Brother Specialist CF Nurse GP/ HV Com Nursery Nurse CF Physio Paternal Gran Mum 3 Aunts CF Medical Team Specialist Dietician Dad Baby A Boy 1 ½ Years Consultant Hosp Paed 3 Half Siblings Police Neuromuscular Medical Team Consultant Com Paed Woman’s Aid Housing Social Work Services Paed Physio CAB Specialist Neurologist Adapting Housing App HP Procedure Respite Crossroads CP Procedures Specialist SW Assess FSW Transport

23. Useful resources • Act Family Companion/care pathway for children with life limiting and life threatening conditions. • SWIA/CHAS End of Life Planning, practice guide. For publication end Oct 2010 and launch at national conference Friday 10th Dec 2010.

24. Thanks for Listening Fiona Shevill Fiona.shevill@highland.gsx.gov.uk 01463 701376