Enhancing Child and Adolescent Mental Health Service Referrals 2

BACKGROUND Children and young people's mental health is a national priority for the Department of Health and Social Care \[1\] and all major national funders. This research addresses critical problems in the referral processes to Child and Adolescent Mental Health Services (CAMHS) that the project team identified during the project team's qualitative research program during the project team's NIHR HS\&DR-funded EN-CAMHS 1 project.

1. CAMHS cannot cope with the growing numbers of referrals. Nearly 500,000 children and young people (CYP) were referred to CAMHS in 2021/2022 \[2\], and this number has risen steadily since 1999 \[3,4\]. CAMHS providers are overwhelmed by the number of referrals \[5,6\]. 2. Rising demand is coupled with high levels of rejection. Almost a quarter of the referrals made into CAMHS are unsuccessful because they are deemed inappropriate or do not reach the threshold for treatment \[2\]. This results in longer delays for children who need the specialist care, which is exacerbating mental health difficulties \[7\]. 3. The experience of the referral process is poor \[8,9\]. The high rate of inappropriate referrals causes unnecessary distress to children, their families and to referrers, who can wait many weeks if not months for a decision \[10\]. The family upset is compounded by a lack of communication throughout the long process \[11\]. When a referral is rejected, it typically goes to the 'back of the queue', resulting in further delays for children and families. 4. The quality of CAMHS referrals is poor and CAMHS is often seen as the gold standard by families or the only alternative by referrers struggling to know what else is available in primary care \[7,10\]. 5. Clear information about what CAMHS can and cannot provide is not readily available and suitable alternative sources of mental health support are often not explained to children and their families at the point of referral rejection \[12,13\]. 6. Non-CAMHS support is poorly understood \[14\] and not widely valued as a helpful source of support. People who could be helped better by non-CAMHS support are not signposted elsewhere early enough in the process, except in a minority of places. 7. Rejected referrals incur a significant cost for CAMHS who must triage often incomplete and/or inaccurate, referral documentation. Receiving a rejection is also frustrating and costly to referrers (GPs, school staff) who spend valuable time preparing referral documentation \[15,16\].

The NIHR funded EN-CAMHS project ("EN-CAMHS 1", NIHR131379) consulted with 110 CAMHS stakeholders (CYP, parents/carers, GPs, mental health school staff and CAMHS professionals) \[17\]. EN-CAMHS 1 confirmed and extended previous research: stakeholders reported widespread confusion about the kinds of support CAMHS can and cannot provide. Referrers reported poor support during the referral process, lack of transparency about the process and a lack of knowledge and low confidence in other sources of support. Services reported poor quality of referrals such that many were 'rejected'. Families described using 'workarounds' to get to CAMHS (e.g. going to A\&E). This is concerning not least because it highlights families' difficulties, but also because it disrupts the goals of referral and triage: i.e. to provide timely, appropriate care and to prioritise those in most need. The project team identified overwhelming problems with the current referral processes resulting in high levels of unnecessary additional cost to services; and widespread despair for referrers and for children and families.

RATIONALE Direct changes to CAMHS resourcing and staffing are the domain of DHSC and not something the project team can change. However, by improving referrals, the work can relieve additional pressure on services, make the process work better and create greater satisfaction for users. The project team can also increase understanding of what CAMHS is and does; and create confidence in CAMHS alternatives. The research has demonstrated an urgent health and care need to provide a straightforward referral process to ensure that children most in need are prioritised for treatment, and that all children are signposted to appropriate help in a timely manner. Such a process needs to be scalable, low cost, widely accessible and sustainable over time.

110 CAMHS stakeholders in EN-CAMHS 1 \[18\] repeatedly expressed a clear preference for a digital solution that could simplify and improve the CAMHS referral process. Stakeholders unanimously advised that the project team should create a national, standardised referral process which could also be tailored to local CAMHS' configurations. To date, there has been no national collaboration to improve the referral process; rather, piecemeal attempts across CAMHS providers have adopted different approaches. The project team's audit of such approaches unfortunately suggests referrals do not meet the requirements of CAMHS stakeholders identified in EN-CAMHS 1. For example, none has been rigorously co-developed with stakeholders; none provides a mechanism for people to track 'where they are' in the referral journey once a referral is submitted. From a technical perspective, the digital tools currently developed are not interoperable with core NHS infrastructure (e.g. NHS app; NHS website). There is patchy sharing of digital referrals in geographically-aligned providers, but it is fragmented and again lacks most of the recommendations the project team brings from EN-CAMHS 1 stakeholders for what the digital referral should 'look like'.

EN-CAMHS 1 stakeholders recommended the project team implement a digital solution to address the current problems of poor communication, missing information, poor data quality and lack of guidance for families about what to expect of the referral journey. The design and development of the digital tool will specifically address the accessibility needs of referrers. The project team intend to explore issues of digital accessibility in the consultations (WP1) and in the co-design workshops with participants. The project team shall also consider the three key elements of digital exclusion: lack of digital access; lack of digital skills; lack of confidence to use digital. The project team will explore these challenges in the co-design workshops, with stakeholders in consultation and with advisory groups. The digital tool will supplement rather than supplant traditional modes of referral; traditional (e.g. paper based) modes of referral will remain. However, the project team anticipates that the project team's digital tool will enable more people to make more successful referrals than before.

The project team shall also generate new knowledge about the patterns of referrals into CAMHS, by automating data collection through the digital tools and thereby enabling services and NHS England to understand referral and treatment data in greater detail than ever before. The project team see enormous potential in this project and its learnings/outputs for cross-pollination to other services experiencing similar problems.

1. Referrals overwhelming CAMHS The project team cannot increase CAMHS staff levels or change what it can provide.

The project team can make the referral process work better and with greater satisfaction for referrers and for those being referred.

The project team can increase confidence in CAMHS alternatives and increase follow-through into CAMHS alternatives.

The project team can help CAMHS prioritise the needs of those it is designed to help. 2. Quality of referrals is poor The project team can provide clear, accessible guidelines to make appropriate referrals.

The project team can validate input on the referral form and ensure all required information is completed pre-submission.

The project team can raise awareness about what a good referral is. The project team can educate people about common referral mistakes. 3. Poor experience of referral The project team can explain the referral process clearly. The project team can outline key steps in the referral journey and inform people about the expected waiting times for the local CAMHS triage process.

The project team can update referrers and CYP/families as their referral moves through the system.

The project team can signpost to local and national resources that may help during the waiting period. 4. Costs for CAMHS The project team can reduce CAMHS clinical time wasted by automating the checking of referral documents before they are submitted.

The project team can reduce costs for individual and families by streamlining this process.

The project team can improve referral success by ensuring alternative non-CAMHS support is signposted appropriately and explained. 5. Poor information The project team can provide straightforward accessible information translated into multiple languages.

The project team can signpost to phoneline support for those who are not comfortable with technology. 6. Lack of confidence in non-CAMHS The project team can make non-CAMHS support more understandable and transparent to people using services by linking to real-life case studies / CYP stories and working with CAMHS stakeholders.

The project team can help build trust between referrers and services. 7. Timeliness of Assessment by CAMHS The project team can divert CYP to alternative services which may free CAMHS to see those who need CAMHS most, sooner.

The project team can reduce the workload of CAMHS staff in triaging inappropriate referrals.

The project team can free up CAMHS clinical time for more complex appropriate referrals.

The project team can make referrals faster and more reliable. The project team can make referrals 'recyclable' so re-referrals do not 'fall out' of the system and need to 'start from scratch'/'go back to the back of the queue.'

EVIDENCE The number of children and young people (CYP) waiting longer than 12-weeks for mental health treatment in England is at a five-year high \[19\]. The challenge for CAMHS improvement is complex, but a review of the current literature has identified how the referral process represents an important aspect of this leading to children waiting until they are very unwell to access care \[10,19\]; possibly needing more prolonged and intensive treatment as a result and leading to lack of trust in services \[20,21\]. Simple, practical problems already identified in the literature include lack of transparency in the referral process; incomplete information in referral forms; poor communication with referrers/families throughout the process; lack of information about where else to seek help and who can refer into CAMHS \[e.g. 22-25\]. The NIHR HS\&DR-funded EN-CAMHS 1 extended this understanding of the challenges for referrals into CAMHS.

Existing evidence suggests potential solutions include: a 'single point of access' (SPoA) within CAMHS \[e.g. 26-28\] referrer-friendly guidelines with training to support referrers \[14\]; increasing, and ring-fencing funding available to CAMHS \[6\]; clarity about CYP mental health support available for referrers that is separate from CAMHS and which may be more readily and repeatedly available in the community \[9,27\]; and a call for policymakers to improve collaboration between professionals involved in supporting CYP mental health \[11\]. However, an audit of CAMHS referral processes found that only 11 providers (out of 78) have online, interactive referral forms, many of which have poor user interfaces and are difficult to navigate. Most have no online referral mechanism and provide lengthy documents that need to be downloaded, printed and/or emailed individually to each different provider. Referrers told the project team these forms were often hard to find, confusing and difficult to complete. Easy-win opportunities to provide online referral forms that automatically validate information and support