Dawn Moss (Lead Clinician, CEN NMCN) Getting it Right for Every Child with Complex and Exceptional Healthcare Needs Dawn Moss (Lead Clinician, CEN NMCN)

NMCN CEN background and context Previous work by Scottish Complex Needs Group and Dr Patricia Jackson (CEN Lead Clinician 2009-2011) Policy documents For 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 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 www.cen.scot.nhs.uk

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

Education and training 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 Group defined by the complexity of their healthcare, rather than their diagnostic label www.cen.scot.nhs.uk

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

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 boundaries Marit has highlighted the key work and achievements of the network since we started and my part of the presentation will consider the title of this session and question if networks are the answer to the community child health skills shortage. I want to start with Getting it Right with Every Child which you’ll be aware of. It threads through all existing policy, practice, strategy and legislation affecting children, young people and families. The approach and National Practice Model have been designed to address any issue affecting a child and young person.

Skills - core components of Getting it right for every child Co-operation, joint working and communication A Lead Professional to co-ordinate Maximising the skilled workforce within universal services Skills of advocacy, negotiation, leadership, The capacity to share demographic, assessment, and planning information When you look at the core components of Getting it Right for Every Child the qualities and skills of the workforce are already embedded across the different disciplines working within child health and the community. Getting it right for every child aims to establish a common language and shared way of identifying concerns and needs of children and young people that operates across all agencies. The idea is for the child to get the right help at the right time packaged for their particular needs. I think some of you would agree that we still have some way to go before achieving this. Community child health professionals and parents too have the challenge in translating the different language used across the agencies and disciplines. I think for our colleagues working in hospitals the language of GIRFEC isn’t yet familiar – ask staff about care co-ordination and a key worker and some will know what you’re talking about but if you spoke about the lead professional and named person would they know that these are the key people that they need to be sharing information with? I’m not sure and think there is a lot of work still to do.

Training and Education NMCN CEN Service users suggestions for improvement and identified workforce training needs resulted in two DVDs; patient leaflet; 15 communication workshops for over 300 professionals www.cen.scot.nhs.uk

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 project Early Support and Early Expectations ‘Words matter’ – listening to parents experiences Managing expectations, transition from hospital to community – working across boundaries Child getting the right help at the right time packaged for their particular needs (GIRFEC) Before I finish I wanted to tell you about our next educational project that will focus on early support and early expectations for parents of children with complex and exceptional healthcare needs. Parents in our Service Users Working Group told us they found the first year after their child was born or diagnosed with complex needs the hardest time of their life and they felt a sense of grief, loneliness and fighting a battle. They told us how important it was for them to celebrate the birth of their child and to receive acknowledgement of the joy of having a baby. Parents had different experiences of being told about the complex needs of their child. A number of parents were given the right information at the right time. However, many parents talked about: - Too much information or incorrect information given at the wrong time - Some parents were told that their child’s condition was incompatible with life and they told us how they felt about this - They also told us about professionals making well meant remarks about the amount of support that would be available, which resulted in raising unrealistic expectations. This had a negative impact, particularly about future discussions around home care packages. If you’re told not to worry and that someone will be available 24-hours per day to care for your child at home, if this isn’t provided why should you believe anything else you’re told by professionals. - Negative remarks having a lasting impact on coping and future expectations. Parents emphasised the importance of honest information available at the right time and the importance of parent-to-parent support. We’ll launch the new resource in September and that leaves me just one more slide to say thank you…

CEN conference – Edinburgh Thursday 27 September 2012 ‘Early Support for Families and Children with Exceptional Healthcare Needs’ Thank you! And invite you to attend the CEN conference in Edinburgh on 27th September. Thank you. www.cen.scot.nhs.uk