CYPHSG Update: Children and Young People with Disabilities August 2014 Life limiting conditions Advisory group FASD

Life Limiting Conditions (CHAS) Aims (as per tender) 1. The actual number of children and young people with life-limiting or life-threatening conditions in Scotland 2. The number of children and young people with palliative care needs, as well as their ages, any underlying conditions, care needs and geographic locations and ethnicity 3. The stage of the condition (stable/unstable/deteriorating/dying) of each of these children and young people with palliative care needs

Research Questions 1 What is the prevalence of children with LLC in Scotland? 2 Is there any variation in prevalence of LLC by age, ethnic group, socioeconomic status or geographical location? 3 What proportion of this children are stable/unstable/deteriorating or dying? 4 What are the care and support needs of children and their families with LLCs?

Response Raise awareness – paper circulated across Child Health Commissioners group, Ministerial Advisory Group for Children and Young People with Disabilities and Children and Young People’s Health Support Group. Additional information shared on request. Comments collated and shared with CHAS to be discussed at the next meeting. Please see attached papers for detail. Future Actions: Agreed to raise question at CYPHSG, CHC and Ministerial Advisory Group for Children and Young People with Disabilities. MSN for Children and Young People with Cancer funding the work (not specifically stated in the papers) need to clarify what their expectations are?

Disabled Children and Young People Advisory group (Disability Champions) (Scottish Government Policy). Listening event with relevant stakeholders to consider the implications of GIRFEC within the new Act, with a specific focus on the developing secondary legislation and statutory guidance has been held. Paper will be circulated when available; writer will extract relevant health issues. Group to receive early drafts of guidance etc for us to disability proof them

Draft Priorities for NHS: Awareness raising and education for parents particularly in respect of GIRFEC and roles of professionals. 71% of parents not  aware of Named Person (Participation Project) Planning processes for the transitions of named person i.e. from HV to Education Distinction between complaints process and resolving/mediation Guidance and training for professional on information sharing -Timescales -Sharing information with parents and children -What if child disputes it -What about children and parents right to privacy -What is proportionate -What about interventions to parents in adult services which impact on child’s wellbeing

FASD (Foetal Alcohol Spectrum Disorder) Steering Group Next Steps Continue to implement changes and any comments/suggestions to the draft. Recognition that this Pathway is about how we identify the children affected by FASD and utilise the existing resources and means of support to support these children more effectively. Final draft should be made available by August 2014 . Roll out and implementation is to be considered at the next meeting. Recruiting for a secondee to replace Maggie Watts as National FASD Co-ordinator. FASD Co-ordinator to be invited to attend future meeting of CYPHSG

FASD 4th draft of the pathway which is intended to be a multi-disciplinary tool, which should be utilised as a general guide and support for professionals to follow with concerns of FASD. It’s a guide built around GIRFEC for professionals to utilise who have any concerns regarding FASD no matter who the professional is who raises the concern.   No stand-alone FASD clinic exists although there are significant numbers of professionals trained, as teams, in most of the NHS Boards.  The Group established an all-round consensus that two things should run in parallel: 1) Reviews, checks and questions should be carried out throughout pregnancy of alcohol history as is the current system, but   2) Only children who display developmental signs with a maternal alcohol history will enter the pathway or those born with FAS.  NHS Forth Valley will be applying a small test in change by asking about alcohol at 28 weeks gestation when the mother has had time to build up a relationship with her midwife.  Long Term Aims of the Pathway: 2 basic elements – 1. No children should be exposed to alcohol 2. Those children that are exposed to alcohol should be identified and supported