Children’s neurodevelopmental services were identified as a programme area of the 1000 Lives Improvement programme, the national quality improvement service for NHS Wales delivered by Public Health Wales. The aim of the 1000 Lives Improvement programme is to support the NHS to improve healthcare outcomes for patients and deliver the highest quality and safest healthcare for the people of Wales.
An all-Wales Neurodevelopmental (ND) pathway for assessment and diagnosis
An all-Wales ND pathway for assessment and diagnosis has been created with the ND national steering group, families, statutory and third sector organisations. The standards focus on:
- reducing the time from referral to diagnostic assessment,
- a child centred assessment,
- timely and multi-disciplinary discussion of those involved in the assessment,
- improved communication and
- feedback of the outcome, with follow up with the family – and where appropriate the child – to support delivery of the action plan.
- Standard 1: There is a single point of access for diagnostic assessment of all neurodevelopmental disorders.
- Standard 2: The decision as to whether to accept a referral or not is made on the quality of information provided (as outlined in National Institute for Care and Health Excellence (NICE) guidelines). Where there is adequate information to support concern, access should not be subject to permitted referrers, the use of screening questionnaires or other specifications.
- Standard 3: When referrals are not accepted, the referrer is provided with rationale for this, alongside advice on how to improve the referral
- Standard 4: Assessments are planned in a child centred way ensuring sufficient information to create a profile of the child’s need is gathered (as outlined in NICE guidelines), whilst ensuring a prudent, flexible approach to the use of resources.
- Standard 5: There is a timely multi-disciplinary discussion with all those involved in the assessment process which leads to a decision about the outcome of the assessment, a profile of the child’s strengths and difficulties and agreement on future. The implementation of this process can be locally determined.
- Standard 6: A professional who has been involved in the assessment process will communicate the outcome of the assessment with the family (and where appropriate the child). This is followed up in writing, and where consent is given, should be shared with other professionals who support the child. For children who have received a diagnosis, advice about how best to meet the child’s needs.
- Standard 7: After assessment, next steps should be discussed with the family and as appropriate, child.
- Standard 8: Interventions advised and offered by neurodevelopmental services should be based upon the best possible evidence.
Agreed outcome measures
Outcome measures for the neurodevelopmental service have been developed and agreed, facilitated by the 1000 Lives Improvement Team, focussing on:
- compliance with the standards
- child or young person’s and families’ experience of assessment and diagnosis.
ND Community of Practice
There is also a Community of Practice, organised by the 1000 Lives Improvement Team, which provides clinicians with access to up to date research and information.