This post is intended to summarise the discussion at the PMHA workshop, held on the 3rd September at the BACCH ASM. We hope that it will promote discussion and the sharing of resources and ideas.
Increasingly, community paediatric services are presented with children in whom neurodevelopmental problems, usually presenting as SEN, have come to light in the primary school period. Given that there are 1.5million children in England with SEN, and a shrinking pool of NHS resources, there are challenging questions around which children need assessment by a paediatrician, and what form this assessment should take.
Whom should we assess?
The question of what the nature and purpose of paediatric assessment might be was addressed. Some assessments are ‘hearts and toenails’ physical examinations to support educational assessment processes. Other children will need a holistic developmental assessment to discern the presence of undiagnosed neurodevelopmental conditions. It was agreed that this was an important function of paediatric services, particularly given the poor outcomes suffered by children in whom diagnosis is delayed.
So it was agreed that some kind of triage mechanism is necessary to select out those likely to have a diagnosable condition. Various options were put forward:
a) in some districts school nurses have strong involvement in schools and can pass on likely cases to paediatrics. However in other districts the capacity of the school nursing service is insufficient for this.
b) SENCOs (special educational needs co-ordinators) are a useful group, but require careful cultivation and some guidance in selecting those children likely to benefit from paediatric assessment (i.e, not just those who are felt to need a statement!)
c) the Glasgow approach was outlined, by which children with problems in more than one domain are referred for multi disciplinary assessment.
The situation where parents were concerned but schools were not was discussed. Some felt that if school were not concerned then symptoms are unlikely to be established as pervasive, and so diagnosis is unlikely, but others argued that parent anxiety can sometimes only be allayed by assessment. There is uncertainty, however, regarding how effective and long term such reassurance is likely to be. Overall this question may be resolved by what up capacity is available locally. Again, close liaison with and knowledge of local schools is vital.
The question of what happens when things go wrong was raised. For instance, an initially quiet child who does not disrupt class might not be referred by school, but then suffer later complications as a result of their undiagnosed condition. This might be addressed through better training for SENCOs. More seriously, a young person might present to a youth offending team with quite significant learning disability- thus is a failure of care and it was suggested that services should be held to account for this.
Exclusion is a red flag for potential problems, and at one stage it was intended in the SEN reforms that exclusion would automatically trigger a multi-agency assessment. This had however been dropped from legislation. Local arrangements for instance with PRUs may be possible, however.
Maintaining a quality assessment
Once the child arrives in clinic, assessment needs to be
Factors that may interfere with this include cognitive bias (e.g. confirmation bias, in group bias), which doctors are as susceptible to as anyone else.
Also, the secondary gains anticipated by both families and schools can exert a powerful pressure to diagnose. Some schools wrongly state that support for Sen is dependant on diagnosis, while in other cases benefits are felt to require diagnosis in order to be claimed. All of these pressures can impair the objectivity of assessment.
Quite apart from this pressure to diagnose, there is an additional pressure to be categorical, and forsake our nuanced accounts of the child in their biopsychosocial context for simple statements of ‘what is wrong with this child’. This tension will always exist, but the latter reductionist approach was rejected by many as being simplistic, unfair to the child, and potentially absolving families and schools of any responsibility to adapt the environment to the child’s needs.
Recent NICE guidance in autism and ADHD has emphasised the need for holistic assessment, and it was emphasised that the assessment should start off as holistic, incorporating information from schools and other professionals, and with a history of current functioning that covers all aspects. However some services have very short appointments which make such an approach problematic.
Time, and resources, are always short, and so time in clinic needs to be used efficiently. Forms for parents to fill in regarding social history were discussed (see Lambeth proforma). There was discussion of the feasibility of direct assessment of cognitive abilities. School attainment levels may be available, but these do not necessarily correlate with developmental age, to which interpretation of behavior needs to be pegged.
Dr Davie presented the Lambeth assessment, a collection of brief exercises designed to obtain an estimate of age-equivalent performance, rather than something as formal as an IQ. The importance of working memory as a predictor of academic progress was emphasised. Some find this helpful, but others worried about time pressures, or the danger of giving too much weight to these informal exercises. Alternatives such as the Schonell graded reading scale were discussed. The usefulness of asking parents where they would place the child’s developmental skills was emphasised.
We only had time to briefly discuss issues around making further assessment for specific conditions.
For ASD, there was consensus that formal observational tools such as should be used selectively, and that the same applied to formal history tools such as ADI. Some rigorous observation by an appropriately trained professional is, however, essential, as is a structured and comprehensive history.
Questionnaire use is dominated by Conner’s, but others such as Achenbach and SNAP were praised. Caution was emphasised in using simpler forms where marking ‘definitely’ for all questions will suggest the diagnosis.
The rule of continuous performance tests such as the QB is unclear- they are expensive and their validity in supporting diagnosis is not established.
School information is essential. Clinicians require an ADHD questionnaire and often a supporting report.
The issue of how to approach the child with ADHD symptoms who is experiencing ongoing psychosocial adversity was addressed. Sine felt that this makes no stiffened to diagnostic considerations, but would inform management, while others felt that diagnosis is not possible without stability and safety. Dr Webb’s article was cited as a useful contribution to the debate.
We had intended to address the following questions regarding dcd.
Is dcd a paediatric or OT diagnosis
Is sub typing dcd helpful?
What can we do to help sensory issues with limited OT availability?
Both workshop groups joined in heartily, and the following themes emerged
- Local networks and relationships are vital to accurate triage and constructive joint working.
- Assessment by paediatrics is complex and challenging, but often attempted in fairly brief appointments, not always with sufficient supporting information.
- Diagnostic practice varies, but there is consensus regarding the need for flexibility and triangulation with other professional views.
We hope this post will stimulate debate, and hopefully prompt some to share their ideas and documents.
Please do comment, especially if you disagree!
Special thanks to our note-takers!