Developing a multi-agency local autism team implementation pack

Type and Title of Submission


Title:

Autism management in children and young people - recognising and overcoming barriers to accessing care

Description:

When concerns in suspected autism are 'sub-threshold' children fall between services and are left unsupported. We have established a multi-agency autism forum including therapists, child and mental health services (CAMHS) psychologists and psychiatrists, paediatricians, and education, to improve referral and support the pathway.

Does the submission relate to the general implementation of all NICE guidance?

No

Does the submission relate to the implementation of a specific piece of NICE guidance?

Yes

Full title of NICE guidance:

CG170 - Autism - management of autism in children and young people

Is the submission industry-sponsored in any way?

No

Shared learning database

Description of submission


Aims and objectives

Our main aim was to streamline the referral and support process, for children and young people with autism, through effective multi-agency work.

Children and young people with autism can be looked at in a number of ways:

  • Those in whom there are associated physical or medical concerns for which paediatric services are most appropriate.
  • Those in whom child and adolescent all mental health services are most appropriate.
  • Those in whom both services are needed.
  • Those who appear to fall between the service gap.

 

The last 2 groups are particularly in need of multi-agency liaison, including school services.

Those in whom concerns are not recognised or fall below criteria are at risk of receiving inadequate or inappropriate management. Often support occurs before diagnosis and may be based on assumptions such as emotional and behavioural disorder without deeper analysis of underlying factors.

One of our aims was to discuss referrals that do not obviously meet criteria for assessment, the referral pathway or other outputs such as the GP information sheet, and pass this information to commissioners. The idea behind this was to indicate areas that non-health services could support including education - for the purpose of joint comissioning as well as voluntary sector service input.

Context

Historically, in our area, most children and young people undergoing an autism assessment would have an assessment using the Autism Diagnostic Observation Schedule (ADOS) Autism Diagnostic Interview-Revised (ADI-R) / Developmental, Dimensional and Diagnostic Interview (3di), a review with a speech and language therapist, and school observation with or without a cognitive assessment. The final diagnostic assessment would occur with parents, at either nursery or school to incorporate the education perspective at the same time.
Although thorough, this process was burdensome for staff and families with considerable waiting times.
Recently, CAMHS input into autism reduced due to autism trained staff leaving or retiring and management chages. At the same time there has been an increase in demand for autism evaluation which reflects the national picture.
We have a joint CAMHS psychology and paediatric clinic, twice a month, during which we review those children and young people with medical/physical needs in addition to possible autism. One of these clinics is supported by an officer from our local Hampshire Autistic Society to provide information and support.
Using a combined assessment through multi-agency working gave an opportunity to hear the impact the child's condition was having on him or her. The school special educational needs co-ordinator would take on the key worker role with an open appointment to be reviewed if needed and would signpost teaching staff to strategies based on assessment profile.
Having information from a child's school or nursery could be used to reduce the wait and number of assessments needed for an autism diagnosis. We used the signs and symptoms checklist from NICE Clinical Guideline 128, Autism diagnosis in children and young people, to structure this.
Depending on the quality of information available from this assessment, a working diagnosis may be given, signposting to management strategies. This may be corroborated by information to enable a formal diagnosis, thus improving efficiency and effectiveness. This means that families can access support sooner - even at the working diagnosis stage.

Methods

In 2012 we increased our numbers of autism trained staff from one to 6. These were 4 paediatricians and 2 speech and language therapists.
Speech and language assessments were used to reduce the waiting time and need for more expensive consultant input. We also moved to a tiered approach to diagnosis. Depending on the quality of information a working diagnosis may be given, signposting to management strategies. This may be corroborated by further information to enable a formal diagnosis, thus improving efficiency and effectiveness.
A tier 1 approach may involve a working diagnosis at the initial appointment, which is later confirmed at a second appointment once further information gathered.
A tier 3 assessment, which is what we used to do for nearly all children, would involve a detailed process using the Autism Diagnostic Observation Schedule (ADOS) Autism Diagnostic Interview-Revised (ADI-R) / Developmental, Dimensional and Diagnostic Interview (3di), a review with a speech and language therapist, and school observation with or without a cognitive assessment. The final diagnostic assessment would occur with parents, at either nursery or school to incorporate the education perspective at the same time.
A tier 2 assessment would lie somewhere in between.
Due to service changes a number of autism referrals, with or without additional mental health concerns, were being diverted to paediatrics. Through the multi-agency forum we designed a letter for general practitioners to clarify the referral pathway and to signpost other services that may be able to offer support for the child.
The multi-agency teams meets every 6 to 8 weeks for 2 hours, excluding travel time. We have devised a referral pathway to clarify how information and referrals may flow between CAMHS paediatric therapies and education services.
Currently, the clinic letter to parents and medical notes clarify that consent has been sought to discuss the child at this forum. Consent is explicitly confirmed for information sharing and this consent is copied to the child's education services.
We are also devising a letter for parents to explain what a working diagnosis means, because some parents may find it frustrating to receive this information, pending further evaluation to formalise the diagnosis.

Results and evaluation

In my clinic, over a 4-5 month period, we had 106 cases for discussion of children and young people who were either in need of assessment or post diagnostic support. Getting the notes, creating a table, updating this table after every clinic, and getting the notes for the forum meeting took a significant amount of administrative time.
Following our initiative, consultant time has been reduced through the use of assessments via information from speech and language therapy and education.
Although we don't have exact figures, it is likely that costs have been saved due to earlier support being received based on a working diagnosis. Costs have also been saved through fewer health assessments and appropriate utilisation of education information.
Our expenditure in setting up this system has been in training more staff in autism.

Key learning points

  • Formalise the approach to multi-agency information gathering. Use tools/checklists from autism diagnosis guidelines at pre-school, primary school, and secondary school age.
  • Agree a multi-agency referral and information pathway.
  • Stratify the diagnostic process and use additional information assessments/resources where there is diagnostic doubt.
  • Identify the relevant workforce and their training needs.
  • Support joint working, for example, CAMHS psychology and paediatric clinic, to review those with both medical/physical needs in the context of or in addition to possible autism.
  • Engage with third sector organisations such as local autistic societies to provide information and support.
  • Work with education to provide support and information at pre-diagnosis, during diagnosis and at post diagnosis. The role of education services is not explicitly part of NICE health guidance. The school special educational needs co-ordinator or learning support assistant may often be best placed to take on the role of keyworker.
  • Identify any administrative support required.
  • Link with commissioners and managers and inform them of the number of referrals that do not 'meet criteria' for assessment, and indicate areas that non-health services could support for the purpose of joint comissioning.
    Particular challenges:
    There was much resistance to changing the assessment process and has been met with disagreement along the way. We found it helpful to refer to national standards i.e. the NICE guidelines and the multi-agency aim of improving outomes for children and creating efficiencies for all our services.
    Compromise was important as was acceptance that certain professionals didn't want or weren't able to join such fora.

View the supporting material

Contact Details

Name: Gabriel Whitlingum
Job Title: Consultant Paediatrician
Organisation: Hampshire Hospitals NHS Foundation Trust
Address: Child Health, Florence Portal House, Royal Hampshire County Hospital
Town: Winchester
County: Hampshire
Postcode: SO22 5DG
Phone: 01962 889018
Email: gabriel.whitlingum@hhft.nhs.uk

 

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This page was last updated: 16 July 2013


This page was last updated: 21 January 2014