1123 UK childhood autism diagnostic services survey 2020: evidence for challenges and innovations

Parr, Jeremy; Wigham, Sarah; Farr, William; Reddy, Venkat; Male, Ian

doi:10.1136/archdischild-2021-rcpch.414

Cited by 3 publications

(9 citation statements)

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“…Set in the UK National Health Service, this is the first study to gather data across multiple services on the actual journeys of a large number of children on an autism diagnosis pathway. Overall, 70% of the children received a diagnosis of autism with or without comorbidity, which is in line with the findings from our separate survey across the United Kingdom ( 8 ). The study identified long waiting times to completion of diagnosis, of a year or longer, in most centres.…”

Section: Discussionsupporting

confidence: 88%

“…Recent increases in waiting times for diagnosis have led to parental dissatisfaction ( 3 – 5 ), prompting the NHS England Long Term Plan ( 6 ) to seek solutions, including innovative models of service delivery to help address waiting times. Although various challenges have contributed to long waiting times, including workforce availability, increased case complexity and a funding model that is not responsiveness to demand ( 7 ), the greatest difficulties have related to increased demand for diagnostic assessment, which has doubled in the UK from 2015 to 19 ( 8 ). This is in line with international prevalence studies ( 9 ), with recent studies suggesting prevalence in children may be as high as 1 in 50 ( 10 , 11 ) or even 1 in 30 ( 12 , 13 ).…”

Section: Introductionmentioning

confidence: 99%

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An observational study of individual child journeys through autism diagnostic pathways, and associated costs, in the UK National Health Service

Male

Farr

Bremner

et al. 2023

Front. Rehabil. Sci.

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BackgroundDemand for diagnostic assessment in children with possible autism has recently increased significantly. Services are under pressure to deliver timely and high-quality diagnosis, following National Institute and Care Excellence multidisciplinary assessment guidelines. This UK National Health Service study aimed to answer: how many hours of health professional time are required to deliver autism diagnostic assessment, and how much does this cost?.MethodCase notes of 20 children (1–16 yrs.) from 27 NHS trusts, assessed through an autism diagnostic pathway in the previous year, were examined retrospectively. Data included: hours of professional time, diagnostic outcome. Assessment costs calculated using standardised NHS tariffs.Results488 children (aged 21–195 months, mean 82.9 months, SD 39.36) from 22 Child Development Services (CDS), four Child and Adolescent Mental Health Services (CAMHS) and one tertiary centre; 87% were either under 5 (36%) or 5 to 11 years (51%). Children seen by CDS were younger than CAMHS (mean (SD) 6.10 (2.72) vs. 10.39 (2.97) years, p < 0.001). Mean days to diagnosis were 375 (SD 235), with large variation (range 41–1553 days). Mean hours of professional time per child was 11.50 (SD 7.03) and varied substantially between services and individuals. Mean cost of assessment was £846.00 (SD 536.31). 339 (70.0%) children received autism diagnosis with or without comorbidity; 54 (11%) received no neurodevelopmental diagnosis; 91 (19%) received alternative neurodevelopmental diagnoses. Children with one or more coexisting conditions took longer to diagnose, and assessment was more costly, on average 117 days longer, costing £180 more than a child with no neurodevelopmental diagnosis. Age did not predict days to diagnosis or assessment costs.ConclusionTypical assessment took 11 h of professional time and over 12-months to complete, costing GB£850 per child. Variation between centres and children reflect differences in practice and complexity of diagnostic presentation. These results give information to those delivering/planning autism assessments using multi-disciplinary team approach, in publicly funded health systems. Planning of future diagnostic services needs to consider growing demand, the need for streamlining, enabling context appropriate services, and child/family complexity.

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Section: Discussionsupporting

confidence: 88%

Section: Introductionmentioning

confidence: 99%

An observational study of individual child journeys through autism diagnostic pathways, and associated costs, in the UK National Health Service

Male

Farr

Bremner

et al. 2023

Front. Rehabil. Sci.

Self Cite

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“…Furthermore, practice guidelines7 recognise the importance of integrated paediatric and CAMHS expertise in ASD diagnostic assessment. In the absence of such integration, CYP assessed for ASD in CAMHS may miss out on important medical and genetic investigations, while comorbid mental health conditions may not be identified in those seen by paediatricians 8…”

Section: Introductionmentioning

confidence: 99%

“…A Royal College of Paediatrics and Child Health report indicated a significant reduction in contacts between paediatricians and CAMHS in the UK from 42% to 26.8% between 2011 and 2013 21. In relation to ASD diagnostic assessment, a recent survey identified very few integrated paediatric and CAMHS services in the UK 8…”

Section: Introductionmentioning

confidence: 99%

“…The suggestion of persistence of poorly integrated paediatric and CAMHS services in the UK8 11 indicates a need to examine the views of front-line clinicians on the extent of the problem and the barriers. Furthermore, it is important to ascertain if recent UK government policies have had any impact on front-line clinicians’ experience of integration between paediatric and CAMHS services.…”

Section: Introductionmentioning

confidence: 99%

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Community paediatricians’ experience of joint working with child and adolescent mental health services: findings from a British national survey

Ani

Ayyash

Ogundele

2022

bmjpo

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ObjectivesChildren and young people (CYP) presenting to paediatric or child and adolescent mental health services (CAMHS) often have needs spanning medical and psychiatric diagnoses. However, joint working between paediatrics and CAMHS remains limited. We surveyed community paediatricians in the UK to inform better strategies to improve joint working with CAMHS.MethodsWe conducted an online survey of community paediatricians through the British Association for Community Child Health (BACCH) on how much joint working they experienced with CAMHS, any hindrances to more collaborative working, and the impact on service users and service provision. This paper is based on thematic analysis of 327 free-text comments by paediatricians.ResultsA total of 245 community paediatricians responded to the survey (22% of BACCH members). However, some responses were made on behalf of teams rather than for individual paediatricians. The following were the key themes identified: a strong support for joint working between community paediatrics and CAMHS; an acknowledgement that current levels of joint working were limited; the main barriers to joint working were splintered commissioning and service structures (eg, where integrated care systems fund different providers to meet overlapping children’s health needs); and the most commonly reported negative impact of non-joint working was severely limited access to CAMHS for CYP judged by paediatricians to require mental health support, particularly those with autism spectrum disorder.ConclusionThere is very limited joint working between community paediatrics and CAMHS in the UK, which is associated with many adverse impacts on service users and providers. A prointegration strategy that includes joint commissioning of adequately funded paediatric and CAMHS services that are colocated and within the same health management organisations is crucial to improving joint working between paediatrics and CAMHS.

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Comparing eating and mealtime experiences in families of children with autism, attention deficit hyperactivity disorder and dual diagnosis

Matthews,

Pigden-Bennett,

Tavassoli

et al. 2024

Autism

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Shared family meals are associated with family functioning and thought to protect against disordered eating in families with neurotypical children. Limited research, however, has examined the mealtime structure or experience in families with children with autism (Autism spectrum condition) and/or attention deficit hyperactivity disorder, despite eating behaviour differences in these populations. This study sought to compare children’s eating behaviours and caregivers’ mealtime experiences between families with neurotypical children and those with Autism spectrum condition, attention deficit hyperactivity disorder and dual diagnosis (Autism spectrum condition + attention deficit hyperactivity disorder). Think-Aloud methods established validity for the Children’s Eating Behaviour Questionnaire, Meals in our Household and Perceived Stress Scale measures ( N = 9), prior to administering these to caregivers of children aged 3–15 ( N = 351). Neurodevelopmental condition groups (Autism spectrum condition, n = 80; Attention deficit hyperactivity disorder, n = 88; Autism spectrum condition + attention deficit hyperactivity disorder, n = 65) reported higher food fussiness, emotional undereating, problematic child mealtime behaviours, dietary concerns, caregiver and spousal stress, and less conventionally structured mealtimes than neurotypical families ( n = 118). Attention deficit hyperactivity disorder and Autism spectrum condition + attention deficit hyperactivity disorder groups reported higher food responsiveness, problematic behaviour and caregiver stress than the Autism spectrum condition group. Conversely, Autism spectrum condition and Autism spectrum condition + attention deficit hyperactivity disorder groups reported lower food enjoyment and mealtime structure than the attention deficit hyperactivity disorder group. Distinct eating and mealtime patterns in neurodevelopmental condition families may adversely impact family functioning, emphasising the need for bio-psychosocial approaches and transdiagnostic mealtime support. Lay abstract Children with neurodevelopmental conditions like autism and attention deficit hyperactivity disorder may experience eating difficulties and related health issues later in life. Sharing family meals can help prevent these issues developing, but most studies have looked at families with neurotypical children. Our goal was to learn more about how families of children with autism, attention deficit hyperactivity disorder and both conditions (autism + attention deficit hyperactivity disorder) experience mealtimes. We developed an online survey asking caregivers about their child’s eating, mealtime experience and if they experienced stress. We tested it with nine caregivers and made improvements based on their feedback before recruiting 351 caregivers to complete the main survey. We found that families of children with neurodevelopmental conditions experienced greater food fussiness, emotional undereating, ‘problematic’ child mealtime behaviours, dietary concerns, higher stress for caregivers and spouses and less frequent conventionally structured mealtimes compared to those without these conditions. Families of children with attention deficit hyperactivity disorder and autism + attention deficit hyperactivity disorder reported greater appetite, ‘problematic’ mealtime behaviours and increased stress for caregivers and spouses compared to families of children with autism. Meanwhile, families of children with autism and autism + attention deficit hyperactivity disorder reported less enjoyment of food and less structured mealtimes compared to those with attention deficit hyperactivity disorder. Our findings highlight that families of children with neurodevelopmental conditions, particularly those with autism + attention deficit hyperactivity disorder, have different mealtime experiences and eating behaviours compared to those with neurotypical children. These families may benefit from support at mealtimes. Learning why people do or do not participate in shared family meals will be crucial to developing improved mealtime support in the future.

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1123 UK childhood autism diagnostic services survey 2020: evidence for challenges and innovations

Cited by 3 publications

References 0 publications

An observational study of individual child journeys through autism diagnostic pathways, and associated costs, in the UK National Health Service

An observational study of individual child journeys through autism diagnostic pathways, and associated costs, in the UK National Health Service

Community paediatricians’ experience of joint working with child and adolescent mental health services: findings from a British national survey

Comparing eating and mealtime experiences in families of children with autism, attention deficit hyperactivity disorder and dual diagnosis

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