Implementing NICE guidance

Transcription

1 Implementing NICE guidance Penny Williams Speech and Language Therapist NICE clinical guideline 128 September 2011

2 What this presentation covers Background Development Scope of the Guideline Key Recommendations Costs and savings Implementation Support NICE Pathway and NHS Evidence

3 Background: NICE Guidance Is designed to promote good health, prevent ill health, reduce inequalities and improve the outcome and process of care for all Is produced by the people affected by its work, including health and social care professionals, patients and the public Is based on the best evidence Is transparent in its development, consistent, reliable and based on a rigorous development process recommends good value for money weighing up the costs and benefits and efficient use of resources

4 Reasons for This Guideline Variation in availability of diagnostic services Delays in diagnosis affects access to services Inequalities of diagnoses in e.g. Individual with intellectual disability High functioning CYP Girls Dual language learners Looked after children Coordination between health and other services is a key element to improving care.

5 Context National Context Prevalence DSM and ICD diagnostic systems A spectrum, and co-existing conditions Terminology

6 The autism spectrum: Behavioural symptoms from early childhood of impairments in social interaction and social communication affecting reciprocal relationships combined with restricted repetitive interests and behaviours, often with sensory sensitivities and stereotyped mannerisms. The manifestations change over time and context and are often associated with other neurodevelopmental and mental/behaviour problems and medical symptoms and conditions. Evidence of a neurobiological basis, heterogeneous in manifestation and causation

7 Development: what did parents want? (NAS parent survey) 1. A clear pathway pre and post diagnosis 2. Decreased waiting time 3. Improved access to specialists 4. Increased awareness of co-existing mental/physical health problems and the uniqueness of each child s presentation 5. Improve coordinated approach to diagnosis by different professionals 6. Make diagnosis more collaborative with parents and improve support during and after diagnosis

8 What did Community Paeds want? 1. Do not produce an unworkable guideline or suggest a diagnostic process that increases waiting times 2. Clarify terminology to produce some consistency across professionals noting that strict diagnosis using criteria is a where do you draw the line problem which may not reflect a child s needs. 3. Guidance for difficult differential diagnoses e.g. attachment disorders and quasi-autism. 4. Clarify any biomedical investigations needed

9 Aims of the Guideline To make a difference to the current recognition and diagnosis of autism and ASDs. To make practical recommendations, using an evidence based approach, for front line staff for recognition and referral and diagnostic assessment. To support coordinated service delivery for children and families

10 Key Questions 1. What signs and symptoms should prompt recognition of ASD and referral for diagnosis? 2. What is core to ASD diagnosis? What tools should be used if any? 3. What biomedical investigations should be recommended as part of ASD diagnosis 4. What coexisting conditions should be systematically assessed? 5. What information/support should the child/yp/parents be given during and following diagnosis

11 NICE GDG Decisions Autism used as an umbrella term, synonymous with all diagnosed autism spectrum disorders. Use ICD10 and DSM IV but have regard for future changes Conceptualise diagnostic assessment as a process that: Considers differential diagnosis and co-existing conditions Enables the development of a profile of the CYP A plan of need is developed accounting for family and educational context

12 Scope of the Guideline The guideline covers: Children and young people from birth up to their 19 th birthday. Local strategy and pathway for recognition, referral and diagnosis of autism. Signs and symptoms of possible autism. Components of diagnostic assessment and the health professionals who should be involved with this. Information and support needs. This guideline does not cover management of autism.

13 Key Recommendations In every area: an Autism strategy group; multi agency, multi-professional including commissioners, managers and clinicians from health, education and social care, parents/users and the voluntary sector Responsible for : Appointing a Lead professional Improving early recognition of ASD through multiagency training Developing Diagnostic Pathway Supporting smooth transition to adult services for YP in the pathway Audit and Data collection

14 An ASD Team May consist of few or many members who may be part of other teams but have: ASD specific skills and competencies in diagnostic assessment for all ages and all levels of intellectual ability Core team membership for each ASD diagnostic assessment: Doctor (paediatrician or child & adolescent psychiatrist), SLT, Psychologist (EP or Clin) Additional desirable team members: OT, EP or Clin psych (whichever not above), paed or psychiatrist (whichever not above) Others depending on local circumstances e.g. teacher, specialist nurse, social worker

15 Recognition and referral Awareness raising through multiagency training Tables of signs & symptoms for various ages A clear local referral pathway and single point of referral for ASD diagnosis age up to 19 Screening questionnaires can be used but no evidence to recommend routine universal use School information to be sought in all with parental permission-no specific tool recommended Refer children under 3 to autism team if there is regression in language or social skills

16 Parent/Carer Support A Case coordinator to be appointed from within the team to be point of contact for each CYP and family and signpost support during process of assessment, coordinate information gathering and subsequent care plan

17 Elements to be included in every ASD diagnostic assessment: A detailed enquiry about parent or carer concerns and if appropriate the child or young person s concerns a medical history including prenatal, perinatal and family history past and current health conditions the child's or young person's experiences of home life, education and social care a developmental history focussing on developmental and behavioural features consistent with ICD-10 or DSM-IV criteria (consider using an ASD-specific tool to gather this information) continued

18 assess the CYP social and communicative skills and behaviours through interaction with and observation, focussing on features consistent with ICD-10 or DSM- IV criteria (consider using an ASD-specific diagnostic tool to gather this information). A physical examination consideration of differential diagnosis A systematic assessment of co-existing conditions Cont.

19 A profile of the individual s strengths, skills, impairments and needs that can be used to create a needs-based management plan taking into account family and educational context. Communicate assessment findings with parent/carer and where appropriate, the child or young person

20 The Profile: strengths, skills, impairments and needs : intellectual ability and learning style academic skills speech, language and communication fine and gross motor skills adaptive behaviour (including self-help skills) mental and emotional health (including self esteem) continued

21 physical health and nutrition sensory hypo and hyper sensitivities behaviour likely to affect day to day functioning and social participation socialisation skills. In both the FAMILY and EDUCATIONAL CONTEXT

22 Following assessment Immediate feed-back A written report Follow up appt within 6 weeks to discuss conclusions and implications. Disseminate/share findings with all relevant services, with permission, which may include a school visit Signpost support services for family both statutory and voluntary

23 Following the Assessment: In all cases use the profile to consider individual needs Diagnosis not Autism: Consider onwards referrals to appropriate services Diagnosis uncertain consider review after additional observations and/or intervention consider referral to another service including tertiary service

24 Costs Potential areas for additional costs locally are: recruitment and training of new autism team members, or training for existing roles. an increase in the overall volume of referrals to the autism team due to improved recognition additional costs to communicate the results of autism assessments, for example school visits by autism team

25 Savings Potential areas for savings locally are: efficiency savings due to better multi-agency working.

26 Support for implementation Leadership at national regional and local (area) levels A local strategy group including users Commissioners contracting for pathways, Clinicians/managers working together from health/social care and education Implementation Tools:

27 NICE Pathway The NICE autism in children and young people Pathway covers: recognising possible autism referral assessment diagnosis

28 NHS Evidence To be added- the latest NHS evidence image Visit NHS Evidence for the best available evidence on all aspects of autism