Getting it Right for Every Child with Complex and Exceptional Healthcare Needs

Dawn Moss (Lead Clinician, CEN NMCN)

NMCN CEN background and contextPrevious work by Scottish Complex Needs Group andDr Patricia Jackson (CEN Lead Clinician 2009-2011)

Policy documentsFor Scotland’s Children (2001)

Building a Health Service Fit for the Future (2005)Delivering a Healthy Future (2007)

Better Health Better Care National Delivery Plan (2009)Getting it right for every child (GIRFEC, 2008)

Getting it Right for Every Child core message:

“Everyone has a responsibility to do the right thing for each child and we must all work towards a unified approach, with less bureaucracy and more freedom to get on and respond to children.

This will mean earlier help and the child getting the right help at the right time packaged for their particular needs.”

Aims of the NMCN CEN

www.cen.scot.nhs.uk

• Ensure a comprehensive mapping of children within Scotland and share data to support an evidence based approach to service redesign• Involve children, young people and families in discussions about service improvements• Be a focal point for health professionals, social work and education staff working with children with complex needs to share good practice• Identify workforce needs - training and capacity

Working with stakeholders across boundaries

• By March 2012 over 1200 people involved (48 parents)• In 2009 network contacts were mainly community paediatricians and children’s community nurses • In 2011/2012 strong increase in network contacts in acute, NHS24, SAS• Around 500 unique visitors to the CEN website each month

NMCN CEN Groups

Steering group

Education and

training

Data and Audit

Service users

Pathway of care

Please contact us if you are interested in joining a working group: www.cen.scot.nhs.uk

Children with Exceptional Healthcare Needs

www.cen.scot.nhs.uk

Group defined by the complexity of their healthcare, rather than their diagnostic label

• Hospital admission audit performed by CEN and ISD on high number of repeated unplanned hospital admissions

Data collection and Audit

• Feb 2012: over 80% of the estimated 393 children in Scotland who meet the CEN assessment criteria were recorded on SNS or local databases

Pathway of care for Children with Exceptional Healthcare Needs

• 160 good practice documents and guidelines on 16 topics

• Viewed/downloaded by more than 300 people each month

• Retrospective audit

A Parent’s View

Skills – working across boundariesSkills – working across boundaries

Skills - core components of Skills - core components of Getting it right for every childGetting it right for every child

• Co-operation, joint working and Co-operation, joint working and communication communication

• A A Lead ProfessionalLead Professional to co-ordinate to co-ordinate• Maximising the skilled workforce within Maximising the skilled workforce within

universal services universal services • Skills of advocacy, negotiation, leadership,Skills of advocacy, negotiation, leadership,• The capacity to share demographic, The capacity to share demographic,

assessment, and planning information assessment, and planning information

Training and Education NMCN CEN

www.cen.scot.nhs.uk

Service users suggestions for improvement and identified workforce training needs resulted in two DVDs; patient leaflet; 15 communication workshops for over 300 professionals

How Do You Want Me To Talk To You

• Recognising the challenges in communicating with children with exceptional healthcare needs

• Train the Trainers• Jan – Mar 2012 10 Local workshops

across Scotland• Over 300 professionals have completed

training• April/May – 3 additional dates

Aims of the Workshop

• Increase awareness of participants own feelings in relation to working with children and young people who are non-verbal

• Reflect on those feelings and their implications for practice

• Increase confidence of participants to engage with children and young people with exceptional healthcare needs and their families

• Resources available from www.cen.scot.nhs.uk

Next educational projectNext educational projectEarly Support and Early ExpectationsEarly Support and Early Expectations

• ‘‘Words matter’ – listening to parents Words matter’ – listening to parents experiencesexperiences

• Managing expectations, transition from hospital Managing expectations, transition from hospital to community – working across boundariesto community – working across boundaries

• Child getting the right help at the right time Child getting the right help at the right time packaged for their particular needs (GIRFEC)packaged for their particular needs (GIRFEC)

CEN conference – EdinburghCEN conference – EdinburghThursday 27 September 2012Thursday 27 September 2012

‘‘Early Support for Families and Children with Early Support for Families and Children with Exceptional Healthcare Needs’Exceptional Healthcare Needs’

Thank you!Thank you!

www.cen.scot.nhs.uk