Part 3. Improving patient care using linked data

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.

Figure 15: Number of referrals to outpatient specialist mental health services and referral rejection rates for children and young people aged 2–17 years in Grampian, 2015–2020

Source: NDL Grampian analysis of CAMHS data.

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.

Figure 16: Map showing local areas in Liverpool and Wirral with areas shaded according to rates of planned mental health contacts and emergency hospital admissions for children and young people up to the age of 25 years

Source: NDL Liverpool and Wirral analysis of CAMHS and SUS data.

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.

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