Imagine you are the parent of a four-year-old who:
- has very little speech
- refuses most of the food you offer
- often doesn’t fall asleep until the early hours, then wakes during the night
- insists on wearing a nappy to open his bowels
- isn’t attending nursery because he screamed and hit his head on the floor every time you tried to leave him
- is clearly clever in some ways but can’t seem to apply that intelligence to the things you want him to learn.
Imagine you and your partner recently separated (you couldn’t agree on how to manage your son’s behaviour), your neighbours complain about the noise, and your family won’t watch him as he’s too hard to cope with. You can’t work.
Imagine you have already been waiting six months to see a specialist and will have to wait at least another six… during which crucial developmental windows are closing.
This is a reality that is currently borne by too many parents in Scotland.
What are families waiting for, and who does it?
They are waiting to have a sufficiently expert assessment to determine their neurodevelopmental profile, the factors contributing to it, the consequences of it and what needs to be done to help. In preschool children, most of this specialist work is done by Child Development Teams. The doctors in these teams are paediatricians, not psychiatrists.
These teams monitor and promote the development of children with disabilities such as cerebral palsy, spina bifida, Down’s syndrome and visual impairment.
They assess, diagnose and promote the development of children with atypical neurodevelopment such as autism, learning disability, foetal alcohol spectrum effects and the neurodevelopmental consequences of having been born very prematurely.
Why are waits so long?
In Scotland we have acted on understanding the Heckman equation and invested in universal services in the early years (more health visitors, more routine health visitor contacts, more early nursery places), but failed to properly plan for the impact of that investment on specialist services.
Investment in universal services has resulted in much earlier identification of atypical patterns of development which merit specialist assessment to determine their significance, hence an increase in referrals to Child Development Teams. Staff in universal services struggle to effectively direct the support they provide until specialist assessment has taken place.
An acceleration in the awareness of autism in our society has resulted in families seeking specialist assessment at an earlier age, having recognised that atypical features in their child’s development may suggest the possibility of an autism spectrum condition.
As with all NHS services not receiving specific investment, Child Development Teams have had to make “efficiency savings”, reducing their capacity just as demand was increasing. In some Health Board areas, the number of paediatricians working in child development was cut precisely as referrals rose.
What happens without investment in specialist child development teams?
Waits for assessment and review remain unacceptably long, and are increasing. Most teams have already implemented innovations in service delivery, including nurses taking on roles previously undertaken by paediatricians and great team-working between professionals with complementary backgrounds.
Excellent work has been done with carer support services and with the third sector, but Child Development Teams were not keeping up with demand before the pandemic, and that struggle has now been compounded by a year of service disruptions. The numbers waiting are harrowing to anyone who understands the implications (both short- and long-term) for individual children, their families, their communities and our wider society.
Having hundreds of preschool children across Scotland waiting over a year for sufficiently specialist developmental assessment contravenes both the UN Convention on the Rights of the Child (now to be incorporated into Scots law) and the UN convention on the Rights of Persons with Disabilities. Young children are suffering, because their additional needs are not being understood and not being appropriately met. Delays in regular review assessments for children with disability also represent a failure to uphold their rights.
What would investment achieve?
With some investment in paediatrician posts and substantial investment in posts and training pathways for paediatric nurses in Child Development Teams, waiting times could be reduced.
By identifying a child’s atypical developmental profile early, their family and staff in universal services (including education) can make the sort of adjustments needed for that child to thrive developmentally rather than just get by, to increase their capacity for participation and for independence, and reduce the chances of them needing eg specialist mental health support in the future. The potential for negative impacts on their siblings and classmates is also reduced.
Illustrations of potential consequences of timely versus delayed assessment
|Examples of interventions
|Timely assessment and intervention?
|Sleep and behaviour management targeted to diagnosis/developmental profile
|Parents stay together and stay in employment
|Dad moves out
Mum loses job
|Condition-specific training, support and networking for parents via Carers support
|Improved parental wellbeing
|Parent starts on longterm antidepressant treatment
|Intervention work with family and nursery staff specific to child’s profile
|Sufficient progress to follow mainstream educational pathway
|Intervention less effective as developmental windows missed - higher level of ongoing support needed throughout education
|Nutritional deficiencies (resulting from restricted diet) identified and treated
|Prompt treatment prevents complications
Iron deficiency can contribute to developmental impairment
Vitamin D deficiency in early childhood affects bone growth
Impacts on brain and bone development not so readily reversible if detected late
|Appropriate benefits awarded
|Family have enough money for necessities
|Debts accrued, increasing strain on family
|Child protection proceedings identify and address family’s needs for additional support
|Support appropriately targeted based on the understanding of the child’s complex developmental profile and the factors contributing
|Child suffers significant harm: category may be neglect, emotional or physical abuse
|Genetic counselling if genetic cause found
|Before making further reproductive decisions, family understand chances of similar profiles in future children
|Further sibling(s) conceived or born before parents can receive counselling
|If fetal alcohol spectrum effects, counselling/support, help with alcohol dependence, contraception
|Family supported to reduce chances of fetal alcohol effects in further pregnancies
|Further sibling(s) affected
The incumbent Scottish Government’s Children and Young People Mental Health Taskforce 2019 publication identified a recognised level of inconsistency in Specialist CAMHS and Neurodevelopmental service specifications across Scotland, and recommended that the supply of well-trained staff ibe expanded - recognising that this included paediatricians and paediatric nurses in the community.
Since then, there has been an ongoing neurodevelopmental workstream from that taskforce. However, it has been adversely affected by the pandemic and to date no progress reports are in the public domain. The much anticipated national investment in staffing for specialist Child Development Teams for the early years simply has not happened.
The Government elected on 6 May must prioritise investment in Child Development Teams. Until children with disabilities in Scotland and their families get the specialist support they need, Scotland will not be the best place in the world for them to grow up.
The Royal College of Paediatrics and Child Health is calling on the incoming Scottish Government to take actions across four main areas: mental health, healthy weight, child health inequalities and poverty, and universal services.