• Across the UK, the number of children and young people experiencing mental health problems is growing. Mental health services are expanding, but not fast enough to meet rising needs, leaving many children and young people with limited or no support. Too little is known about who receives support and who might be missing out.
• National prevalence data suggest large variations in need by sex, age, and socioeconomic deprivation. But data on who is using services are only publicly available for NHS specialist mental health care and are not detailed enough to capture variation by these characteristics.
• This briefing presents analysis from the Networked Data Lab (NDL) about children and young people’s mental health. Led by the Health Foundation, the NDL is a collaborative network of local analytical teams across England, Scotland and Wales. These teams analysed local, linked data sources to explore trends in mental health presentations across primary, specialist and acute services.
• Analysis by local teams highlights three areas for further investigation, nationally and by locality: the rapid growth of prescribing and use of general practice, the mental health of young women, and marked socioeconomic inequalities.
• Prescribing and use of general practice: Local NDL teams found the use of GPs and medication for mental health problems is growing in their areas. In North West London, the monthly number of those aged 0–25 years with a mental-health related prescription or GP event (diagnosis, observation or referral) grew threefold between 2015 and 2021. In Grampian (Scotland), the proportion of those aged 0–24 years with mental health-related prescriptions increased from 4.7% in 2012 to 6.4% in 2019.
• Adolescent girls and young women: Around 25% of older adolescent girls and young women aged 17–22 years have a probable mental health disorder, a higher share than for any other group of children and young people. In Grampian, young women aged 19–24 years had the highest levels of antidepressant prescribing (17.9% in 2019). Adolescent girls aged 15–17 years had the greatest number of contacts with specialist mental health services in Leeds, as well as in Liverpool and Wirral, and were the group who most frequently presented with mental health crises to acute services in Wales.
• Socioeconomic inequalities: There is a stark contrast between areas of differing socioeconomic deprivation. In the 20% most deprived areas, compared to the 20% least deprived, crisis referrals were 60% higher among children and young people in touch with services in Leeds; there were twice as many prescriptions and 1.7 times as many referrals in Grampian; and there were close to twice as many crisis presentations to acute services in Wales.
• To inform national policy decisions and local service planning and delivery, the quality of data collection, analysis and the linkage of datasets across services and sectors need to be improved. More regular collection of robust and granular prevalence data would better support services to expand in line with need and target support. There must also be improvements in data quality for specialist services, closing of data gaps along the emergency crisis care pathway, and better linkage of data to understand experiences across care pathways. In England, the development of integrated care system (ICS) intelligence platforms – with fully linked, longitudinal datasets across primary, secondary, mental health, social and community care – will be a major step forward. Such platforms will allow ICSs to undertake similar analyses and learn from others.
• To understand whether children and young people can access support outside the NHS, particularly if turned away from specialist services, it is vital that data are collected on support services in schools and services funded by local government or the voluntary sector, and that these are linked to NHS data.
• Governments in all three countries have begun to recognise the scale of the challenge facing children and young people’s mental health. High-quality data and analysis will play a crucial role in targeting preventative interventions, planning services and improving children and young people’s mental health.

The rising prevalence of mental health problems among children and young people over the past 20 years has become a growing concern in the UK., Governments in England, Scotland and Wales have published strategies to improve support and services in the NHS, schools and colleges, and the wider community.,, Mental health services across the UK were struggling to meet demand even before the COVID-19 pandemic.,, But since then, national lockdowns, disruptions to schooling and social life, and an increasing number of families in financial distress have exacerbated mental health struggles among children and young people.

The scale of this issue presents huge challenges for mental health services. For example, in 2021 1 in 6 young people aged 6–16 years in England had a probable mental health disorder – equivalent to 1.3 million individuals who might benefit from support. It seems unlikely that existing plans to increase the availability of services across the UK will be sufficient to provide support for all young people who need it.

Unmet mental health needs cause avoidable distress and disrupt a child or young person’s development at a crucial time in their lives. The case for early intervention is powerful, not only to prevent conditions from worsening but to improve the outcomes for people who develop enduring mental ill health.

The rising level of mental ill health among children and young people is also a threat to the future health and prosperity of society. Half of all lifetime cases of mental health disorders begin by age 15, and three-quarters of lifetime mental illness is experienced by the mid-20s., People with mental disorders have a reduced life expectancy of between 7 and 25 years, mostly because of physical health problems associated with mental ill health. A recent study estimates mental ill health costs the UK £118bn a year (5% of GDP in 2019), including the costs of treatment and lost earnings for people with mental illness and their informal carers. Addressing this requires funding and cross-government action, but it also requires reliable data and insight to enable services to plan for rising need.

About this briefing

In this briefing, we present analysis from the Networked Data Lab (NDL). Led by the Health Foundation, the NDL is a collaborative network of analytical teams from across the UK (see section About the Networked Data Lab). Using local expertise and unique linked datasets, our aim is to produce new insights into major challenges in health and care.

In Part 1, we provide some background on the trends in mental health disorders among children and young people and existing pressures on services, as well as an overview of the main policies in place in England, Scotland and Wales to improve children and young people’s mental health. In Part 2, we present findings from NDL partners: we examine trends and patterns of service use, including the use of general practice, specialist mental health care and acute services, along with differences by demographic and socioeconomic characteristics. In Part 3, we show how local NDL teams used linked data to improve services in their area. We assess the NDL findings in the context of existing evidence and in the final section offer insights for national and local policymakers.

Local analysis of linked data can provide a much more complete picture of who is using a range of services for mental health problems, and also enabled NDL partners to inform service improvement in their local area. This section presents examples of local impacts the NDL partners’ analysis had on service planning, identification of potential unmet need and the quality of mental health data.

Detecting emerging inequalities in accessing specialist treatment in Grampian

The NDL team in Grampian wanted to better understand trends in referrals to CAMHS outpatient specialists and the likelihood of referrals for treatment being accepted by the provider. Their analysis shows that the overall number of referrals made for children and young people aged 2–17 years in the NHS Grampian Health Board increased between 2015 and 2021. The resulting pressures on service capacity led to a rise in the proportion of referrals that were rejected, from 18% in 2015 to close to 24% in 2020.

The analysis also showed a shift in who was being treated over this period. While adolescent girls accounted for most of the increase in referrals over time, there was a steady decline in referrals for boys between 2018 and 2020 (Figure 15, top). Over the same period, rejection rates for younger children increased, while the likelihood of older children and adolescents being accepted for treatment remained broadly the same (Figure 15, bottom). Since boys make up the majority of young children referred for treatment, boys were more likely to be rejected than girls: 40% of referrals for boys were rejected in 2021, compared with 25% of referrals rejected for girls.

Consulting with the CAMHS clinical team, Grampian learned that it had increased its focus on supporting the growing needs of children and young people with complex anxiety or depression, which are more common in older children and adolescents. In response to these findings, the CAMHS team recognised that support for younger children with conditions such as conduct disorders, ADHD and hyperactivity disorders, or neurodevelopmental needs required investment. Local CAMHS services are now in the process of hiring two consultant psychiatrists. In addition, Grampian Health Intelligence, who are responsible for supporting service planning, performance and improvement at area level, have established a multi-agency team focusing on support for vulnerable children.

This project shows how linked data, combined with local expertise on service delivery, can help target improvements to reduce unmet need. While the Children’s Commissioner for England found that overall rejection rates have been decreasing, they also highlighted enormous geographical variation, with rejection rates varying between 8% and 41% between local areas. The findings also emphasise the need for regular and granular data on who is being accepted for treatment to better understand unwanted variation. Data of this kind are currently only publicly available for Scotland.

Identifying pockets of unmet need in Liverpool and Wirral

The NDL team in Liverpool and Wirral explored area-level associations between use of routine mental health services and the frequency of emergency hospital admissions related to mental health (self-harm, alcohol or substance abuse, and eating disorders). Mental-health related emergency admissions are often the result of a crisis, frequently involving serious self-harm or suicide attempts.

The team computed rates of planned contacts with NHS services in the community and of mental health-related hospital admissions for children and young people up to the age of 25 years, in relation to the number of young people living in each area. In this way, they were able to identify areas with potential unmet mental health need: neighbourhoods with relatively low levels of planned contacts but higher levels of emergency admissions (light red shaded areas in Figure 16). This may be due to more severe need, or poor access to or uptake of treatment. The team is developing further analysis to better understand underlying reasons and identify cohorts at risk.

Data insights such as these, which require granular data across services, can help local service planners focus their efforts on areas most in need, aiming to provide early support to children and young people with mental health problems before they reach crisis point. In Wirral, these findings are now informing the commissioning of the local emotional health and wellbeing offer, which will provide a single point of access to support.

Improving data quality and completeness in Leeds

Working with a local extract of the MHSDS, the NDL team in Leeds discovered that several poorly populated data items related to protected characteristics. Improving the data quality of these characteristics in mental health datasets has also been identified as a priority by NHS Digital.

To understand the underlying reasons and develop strategies to improve the quality of these data at a local level, the team engaged directly with a mental health provider offering therapy and wellbeing services to young people in Leeds. This provider had previously rolled out an electronic patient record system, trained staff and built reusable templates for data entry. While this had led to improvements, some data quality issues remained, particularly around the recording of diagnoses and wider social circumstances of young patients. Engagement with the provider uncovered complex root causes explaining why these may be under-recorded:

• Practitioners may be reluctant to record mental health diagnoses for children and young people due to concerns about associated stigma.
• There is a lack of a standardised approach for recording self-identified gender, especially in cases where it does not match GP records.
• Parental responsibilities or young carer status may go unreported if young patients are reluctant to declare their status to teachers or the council, out of fear it may disrupt their schooling or family life.
• Information on whether children are looked after or have a protection plan is not always recorded at referral unless directly relevant to their care.
• Much of this information is recorded in patient records in free text, which does not form part of national data collections. Although it is possible to make changes to the local electronic patient record system to collect some of this information in a more structured way, the associated financial cost means only limited changes can be made in practice.

Consequently, young people with complex needs are seen by multiple services that may or may not share all relevant information with each other. It also limits the ability of local analysts to provide meaningful new insights to local decision makers, commissioners and service providers. Existing working relationships and trust have enabled the NDL team in Leeds to work with providers to develop strategies to improve data that can be adopted by other providers in their local area. This will initially focus on a subset of highly relevant variables needed to answer the most urgent questions.

These analyses from teams across England, Wales and Scotland show it is possible to use local, linked data sources to gain a much more complete picture of who is using services for mental health problems. In North West London, the analysis showed a steep increase in the use of general practice and specialist mental health services. The NDL team in Grampian found increases in the percentage of children and young people receiving prescriptions for mental health problems. They also showed how the patterns of prescribing vary between girls and boys in different age groups (from being dominated by medications for ADHD for boys in the younger age groups to predominantly antidepressants for young adults, particularly young women aged 19–25). Adolescent girls and young women were also found to have the greatest number of contacts with specialist mental health services in Leeds as well as in Liverpool and Wirral, and were the group who most frequently required acute crisis care in Wales.

A persistent theme is the greater likelihood of children and young people from more deprived areas being in contact with primary, specialist mental health or crisis NHS services than those from less deprived areas. Some of these differences are stark. Crisis referrals in Leeds were 60% higher among CAMHS users in the most deprived areas than in the least deprived. Meanwhile there was twice the rate of prescriptions in Grampian and close to twice the rate of crisis events in Wales between the most and least deprived areas.

Limitations

The analyses have limitations. Firstly, the extent to which they can be generalised beyond local areas will vary. Other research suggests that some of the trends we observed are likely to exist in other areas as well, especially the rise in mental illness among adolescent girls and overall rising demand for support. But without comparable national-level data, caution must be exercised in drawing out implications for policy and practice.

A second limitation relates to the data sources, which were primarily routinely collected administrative data from NHS services. No data were available on services accessed outside the NHS that often represent a significant part of mental health support, including in schools, or services funded by local government or the voluntary sector. Data are also lacking on the use of privately funded mental health services, which anecdotal evidence suggests has risen as NHS services have struggled.

This is linked to the third limitation: the fact that these data only capture those who sought and successfully gained access to services. While some of the patterns we found suggest potentially high and rising levels of unmet need, for example falling contacts when young people transition from children to adult services, the data did not allow us to directly quantify unmet need.

Finally, most of the data used are routinely collected administrative data. These data often lack detailed clinical information, do not offer insights into how the severity and acuity of cases has changed (except for crises) and cannot shed light on the outcomes or experiences of care.

Implications for policy and practice

Our results suggest more resources need to be targeted at prevention among those most at risk of developing mental ill health.

Accepting the limitation about generalisability already set out, there were some similarities in the results across all five teams that raise questions for the future development of children and young people’s mental health policy. The high burden of mental ill health being experienced by adolescent girls and young women is a cause for concern, as is the much higher toll that mental illness is taking on those from more deprived areas. While governments from all three nations have committed to expand preventative services, particularly outside the NHS, these results suggest resources need to be more deliberately targeted at those most at risk of future problems.

Linked data sources and data sharing across sector and organisational boundaries are vital to improve services.

Any major shifts in policy should, however, be based on the best available data, including insights about those children and young people who are not getting access to services. At a national level, to take England as an example, there are still major data gaps. The Chief Medical Officer for England, the Children and Young People’s Mental Health and Wellbeing Taskforce and the Health and Social Care Committee have all flagged gaps in nationally available data on children and young people’s mental health, on service provision, and on experiences and outcomes.,, Nevertheless, in the absence of more complete national data, the experience of producing these local analyses from the NDL across the UK, suggests progress is possible using local, linked datasets.

For example, the research in Wales demonstrates how much more can be understood about the scale, location and consequences of mental health crises being experienced by young people than would have been possible by looking at hospital or emergency services data separately. The insights from Wales on higher rates of crisis incidents in more deprived areas mirrors the work done in Liverpool and Wirral, where a comparison of access to specialist mental health services alongside emergency admissions suggests that in some deprived areas, services may not be reaching some children and young people.

In England, the planning and delivery of services are shifting to new integrated care systems (ICSs), which are closer to the integrated models that already exist in Scotland and Wales. The local analyses shown in this briefing illustrate the potential for data-driven population health management that will be at the core of ICSs. It also illustrates the potential uses. In Grampian, for example, the NDL team linked the data on prescribing and access to CAMHS. The team found that while prescribing and referrals went up, acceptances to CAMHS treatment remained the same, resulting in a bottleneck that may have been creating unmet need among younger children, now being addressed by CAMHS.

More national action is needed to improve the data quality for NHS mental health services and data coverage for mental health support provided outside the NHS.

Local data analysis has considerable potential, but national action is still needed to make it feasible. This includes improving the data quality and completeness for NHS mental health services. Several NDL teams reported that CAMHS data quality was poor, with duplicated or incomplete data and a lack of clinical information (eg related to the presenting complaint). Data were also poor for adult services. This prevents national policymakers and local areas from obtaining reliable measures on some of the most critical and challenging pathways, including transition from CAMHS to AMHS. Age thresholds also vary by region but there is no reliable data-driven evidence on the success of local systems at managing transitions and how they have done it. Detail on other key personal and demographic information also needs to be much more complete, including ethnicity and sexual orientation.

There is also a significant blind spot about support outside NHS specialist mental health services. While specialist mental health services are under pressure, it is vital that those planning and designing services understand what happens to the children and young people turned away from specialist services. This includes whether they are able to access alternative services or other forms of support outside the NHS, or whether they deteriorate to the point of needing more intensive care.

If the findings from North West London are typical of other regions, then general practice is providing an increasingly large share of mental health services, particularly to young people, and will need increased support to do so. GPs report a number of barriers in supporting children and young people with mental health problems, including lack of time, knowledge, access to mental health providers, and resources. Other research suggests that GPs can find it challenging because of a lack of emphasis on mental health in their medical training, lack of clinical experience around young people who present with complex difficulties, or in managing transition to adult mental health services, as well as a lack of tools and resources.,,

A 2021 survey by YoungMinds of young people aged 16–25 in the UK found that although the majority had a positive experience of receiving support from their GP, 2 out of 3 would prefer to be able to access mental health support without going to see their GP. General practice is only one strand of tier 1 mental health services. Other forms of non-NHS community and school-based mental health services are being developed in all three countries, but data are either not available or not linked up with other datasets. National support is required to explore how a more complete dataset for children and young people’s mental health services can be created in all three countries – reliable enough to inform national oversight of who is using which services, and available for analysis at a local level.

More regular collection and publication of robust prevalence data, including for Scotland and Wales, would allow services to be expanded in line with need and realistic targets to be set.

As well as more frequent prevalence surveys, national bodies should also explore the feasibility of collecting more detailed data on groups likely to be at highest risk of mental illness, or most disadvantaged from accessing services. The NDL analysis found clear variation in use of services by socioeconomic group, but without corresponding estimates of need it is not possible to say whether services are being accessed equitably, relative to underlying need.

An investigation of local inequalities in access for children and young people in the West Midlands drew on qualitative evidence, suggesting that children from more deprived areas were less likely to have parental support in navigating services and faced additional barriers including the cost of transport to appointments. Evidence of equitable access to services might, therefore, need to see an even steeper gradient in the patterns of service use.

Conclusion

The scale of the challenge facing children and young people’s mental health services has been recognised by governments in all three countries. Policies are in place to expand services and support in the NHS, schools and the community, but services are not being expanded fast enough to meet the rising levels of need among children and young people. The analysis presented in this briefing illustrates how crucial high-quality data and analytics will be to understand where services need to expand in order to meet needs and reduce inequalities. This will be essential to targeting preventative interventions, planning services and improving children and young people’s mental health.

We are grateful to members of the public who took the time to review this briefing and helped to improve this work: Bārbala Ostrovska, Rain Ashley Preece, Arif Hoque and Rachael Campey. Thanks go to the public advisers who supported NDL partners with communication and engagement with the public: Aberdeen Centre for Health Data Science (ACHDS) PPIE Group, Saiqa Ahmed, Rachael Campey, Digital Services for Patients (Welsh partner), Leeds CCG Children and Young People Mental Health Task and Finish Group, Helen McGlinchey, Patricia McKinney, Hina Qureshi, Patients and Public Assurance Group (Welsh partner), Swansea University Population Data Science Consumer Panel. We would like to thank Sean Agass, Chris Carr, Andy Bell (Centre for Mental Health) and Jennifer Dixon for their contributions and comments on earlier drafts of the briefing, as well as Jay Hughes for reviewing our analysis code. This work uses data provided by patients and collected by the NHS as part of its care and support.

When referencing this publication please use the following URL: https://doi.org/10.37829/HF-2022-NDL1

William P Ball, University of Aberdeen

Helen Rowlands, University of Aberdeen

Corri Black, University of Aberdeen, NHS Grampian

Shantini Paranjothy, University of Aberdeen, NHS Grampian

Katie Wilde, University of Aberdeen

Katherine O’Sullivan, University of Aberdeen

Joanne Lumsden, University of Aberdeen

Magdalena Rzewuska, University of Aberdeen

Sharon Gordon, University of Aberdeen

David Ritchie, NHS Grampian

Elaine Thompson, NHS Grampian

Adelene Rasalam, NHS Grampian.

Alex Bottle, Imperial College London

Matthew Chisambi, Imperial College Health Partners

Roberto Fernandez Crespo, Imperial College London Institute of Global Health Innovation

Evgeny Galimov, Imperial College Health Partners

Sarah Houston, Imperial College Health Partners

Natalie Hudson, Imperial College Health Partners

Jacqueline Legge, North West London Health and Care Partnership

Melanie Leis, Imperial College London Institute of Global Health Innovation

Clare McCrudden, Imperial College London Institute of Global Health Innovation

Gulam Muktadir, Imperial College Health Partners

Sadie Myhill, Imperial College Health Partners

Sandeep Prashar, Imperial College Health Partners

Sara Sekelj, Imperial College Health Partners

Emma Sharpe-Jones, Imperial College Health Partners

Tomasz Szymanski, Imperial College Health Partners

Lewis Thomas, Imperial College Health Partners.

Ben Barr, University of Liverpool

Tim Caine, NHS Liverpool CCG

Pete Dixon, University of Liverpool

Matt Gilmore, NHS Wirral CCG

Annmarie Jacques, NHS Liverpool CCG

Karen Jones, NHS Liverpool CCG

Lee Kirkham, NHS Wirral CCG

Beverley Murray, Wirral Metropolitan Borough Council

Jamie O’Brien, University of Liverpool

Dimitris Tsintzos, NHS Wirral CCG.

Helen Butters, NHS Leeds CCG

Alex Brownrigg, NHS Leeds CCG

Souheila Fox, NHS Leeds CCG

Alison Phiri, NHS Leeds CCG

Frank Wood, Leeds City Council.

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