Service design for children and young people with common mental health problems: literature review, service mapping and collective case study

Service model, intervention or feature?

In determining whether a document described, or provided evidence for, a particular service model, we met several challenges during screening. One significant challenge, mentioned above, concerned discriminating between interventions and services/service models. The English IAPT40 initiative illustrates how interventions and service models might overlap. In its original iteration, IAPT was predicated on cognitive–behavioural therapy (CBT) (an intervention), but IAPT is more than an intervention: it has specific operating procedures covering staff training, levels of intervention (stepped-care), outcome measures and quality assurance and thus we would categorise IAPT as a service model. However, many of the documents we examined were not as straightforward as the IAPT example and, while the criteria outlined in Box 1 helped, reviewers had to make independent judgements as to whether a service model or an intervention was being described, with disagreements being resolved by discussion or referral to a third reviewer. The second significant challenge with some service descriptions was whether what was being described in the document was, indeed, a service model or something more akin to a characteristic or feature of the service. Some examples we had to work through which ended up as ‘features’ of a model were telepsychiatry, open access, case management, integrated care and consultation-liaison. As with the service model/intervention dilemma we encountered, judgements within the research team mostly resolved any model/feature dilemmas that arose. The features we ultimately identified (see Chapter 4) were thus determined through extensive discussion among the research team with additional SAG feedback.

In hindsight, the challenges we encountered here are unsurprising. Most service models we identified had several interacting components, required those delivering or receiving the services to change their behaviour and were often designed to elicit a range of outcomes – traits that are typical of complex interventions. 41,42

UK services

Regarding the UK services described, most emanated from England with a sizeable minority (14%) having a presence across the whole UK. Relatively few services were unique to Scotland, Wales or Northern Ireland (Figure 9).

FIGURE 9.

Service descriptions by UK constituent nation.

B1 collaborative care

There is uncertainty over what collaborative care is. The Centre for Mental Health63 sees collaborative care as systematic, multidisciplinary, team-based care involving a case manager, co-produced care plans and patient management protocols. In our typology, we see collaborative care as the co-location of specialist CAMHS staff within primary care in order to effect closer and more collaborative working. Consistent with the Centre for Mental Health’s perspective, our heatmap analyses did however identify interagency working (feature X5) as strongly associated with collaborative care and case management (X19) as moderately associated.

Unlike most models, a theoretical basis – usually CBT – was often specified for B1 models. This is relatively unsurprising given collaborative care mainly focuses on mood disorders (anxiety and depression) for which CBT is seen as an effective treatment. 64

In the 34 collaborative care service descriptions, US services dominated. Examples include Child and Adolescent Psychiatry for Primary Care (CAP PC) (Kaye 2017), Reaching Out to Adolescents in Distress (ROAD) (Richardson 2014, Wright 2016) and Youth Partners in Care (Asarnow 2005, Asarnow 2009, Rapp 2017). A few services were identified in other countries including Primary Care CAMH Outreach Clinic (Day 2006, UK), Shifted Outpatient Clinics (Bower 2003, UK) and the Hamilton Family Health Team Mental Health Program (Kates 2011, Canada). Across the world, many services were explicitly referred to as Collaborative Care (Clarke 2005, Coffey 2017, Myers 2010, Richardson 2009, Silverstein 2015, all USA; Nadeau 2017, Canada; Sharifi 2019, Iran) or a derivative such as Colocated Collaborative Care (Keller 2013, USA; Moore 2018, USA) or Integrated Collaborative Care (Henderson 2017, Canada; Moore 2018, USA).

B2 school-embedded mental health service

These services differ from schools outreach (C3) in that the school employs mental health staff directly or they are embedded into the school for a significant amount of time. Staff may work solely for a particular school, or they may work across several. While the staff involved might provide liaison services (to teachers and parents, for example), they generally offer more than outreach.

Unsurprisingly, interagency working (feature X5) was strongly associated with school-embedded mental health services in our heatmap analyses.

The 27 service descriptions for B2 were largely US services and included Recovery High Schools (Finch 2014, Finch 2018), School-based Health Centres (Colon 2005, Larson 2016, Liu 2010, Mitchell 2007) and School Health Clinic (Armbruster 2002). A few services were also identified other countries: CAMHS Counsellor in Schools (McKenzie 2011, UK), Doc On Campus (DOC) (Doley 2008, Australia) and the Canadian School-based Pathway to Care (Kutcher 2013b, Wei 2011).

B3 psychiatry-derived community hubs

These services have their roots in the work of Australian psychiatrist Patrick McGorry. 65,66 Although McGorry’s work originally focused on centres for early intervention in psychosis, they have subsequently grown, alongside a ‘transdiagnostic’ perspective, to cover young people experiencing any mental health issue. Psychiatry-derived community hubs are one-stop (integrated) primary care centres for those aged 12–25 years needing help with anything troubling them: mental, physical or sexual health issues; alcohol and drugs; or work and study support. They have a specific focus on early intervention. Indeed, in our heatmap analyses, early intervention (feature X12) was moderately associated with B3 services as was transitions (X1) and interagency working (X5). There was a strong association with open access (X20).

Of the 28 B3 service descriptions, almost all concerned McGorry’s Headspace Centres in Australia (e.g. Abidi 2017, Howe 2014, Malla 2016, McGorry 2018, Rickwood 2019) or an Irish offshoot, Jigsaw Centres (e.g. Abidi 2017, Malla 2016, O’Keeffe 2015, Peiper 2017).

C1 primary care mental health service

These services are delivered in primary care settings (e.g. GP clinics), but, unlike B1 services, they are not delivered by staff from specialist CAMHS nor are the staff necessarily co-located. No specific features were associated with C1 services in our heatmap analyses.

Of the nine C1 service descriptions, most focused on stepped-care models in primary care. In the UK, for example, there is Stepped Care Model for Depression [National Institute for Health and Care Excellence (NICE) 2019] and England’s adult IAPT programme applied to those aged 14–19 years, 1419 IAPT Pilot (Humphrey 2016). In Australia, there is Stepped Care for Anxious Youth (Chatterton 2019, Rapee 2017) and the Child Mental Health Service within Australia’s Access to Allied Psychological Services (ATAPS) programme (Bassilios 2016a, Bassilios 2016b, Bassilios 2017). There was also an Australian service predicated on the Transdiagnostic Staging Model (Cross 2017). In stepped-care models, those receiving treatment usually start with a low-level (often CBT-based) treatment and either exit the service if treatment is successful or step-up to a higher-level treatment if it is not. In staging models, however, treatment stratification is based on disease severity rather than treatment response.

Like B1, C1 was a model group for which a theoretical basis – almost always CBT – was often specified. Again, this is unsurprising given most stepped-care treatments are based on CBT principles.

C2 digital services

These are services where the ‘community’ is the internet. Unlike services which offer telephone or video alternatives to face-to-face contact, C2 services operate solely as digital or remote services and they normally operate as open access or self-referral services.

Six C2 service descriptions were identified: four described Kooth in the UK (Frith 2017, Houses of Parliament POST 2017, Hanley 2019, Prescott 2017), one described eheadspace in Australia (Cotton 2019) and one ProHEAD online in Germany (Kaess 2019).

Predictably, digital/remote (feature X7) was strongly associated with C2 services in our heatmap analyses, as were information and advice (X15) and open access (X20). Self-management (X9) and early intervention (X12) were also moderately associated with C2 services.

The small number of C2 services identified in the review is surprising given advances in technology and the ‘digital immersion’ of CYP in recent years. Although the COVID-19 pandemic provided an external stimulus for the expansion of C2 services,67 our search would not have picked up reports of these services since it was conducted before the height of the pandemic. It is not unreasonable to assume, however, literature on C2 services will increase over the next few years.

C3 NGO-derived community hubs

Group C3 is analogous to B3 (psychiatry-derived community hubs) though C3 services have a clear non-medical/non-psychiatry ethos and are usually provided by a NGO like a charity or social enterprise. On top of providing services directly to CYP, these organisations often offer outreach (D) services.

All 10 C3 service descriptions were from the UK, except for the US Family Empowerment Program (Cleek 2012). Most UK services identified were Youth Information, Advice and Counselling Services (YIACS) (Houses of Parliament POST 2017, NIHR ARC NWC n.d., Nolan n.d., Rayment 2014). YIACS offer a one-stop, integrated health and well-being approach for CYP aged 13–25 years. Other UK C3 services identified include The Junction (Walker 2010) and The Wish Centre (Durcan 2018).

Like B3 services, C3 services cover mental, physical and sexual health, substance misuse and work/study support; in addition, YIACS deal with safeguarding, homelessness, money and benefits, and they often provide peer support opportunities. In our heatmap analyses, shared decision-making (feature X10) and open access (X20) were strongly associated with C3 services. Interestingly, and unlike B3 services, transitions (X1) were not explicitly associated with C3 services.

D1 outreach to home

These services include assertive outreach, mobile crisis teams and home treatment. While these services are usually provided for more serious mental health problems such as psychosis (outside our remit), some D1 services are available for CYP at the more complex end of the CMHPs spectrum. Unsurprisingly, for at-home, often crisis-based, services our heatmap analyses found (moderate) associations between D1 services and both family work (feature X3) and crisis care (X16).

The 35 D1 service descriptions mainly emanated from the USA with 1 UK and 1 Canadian service. D1 services had various names though most included words expressing an urgency of some sort for example, ‘intensive’, ‘crisis’ and ‘emergency’. US examples include Ventura County Children’s Crisis Continuum (Sowar 2018), Intensive Home-based Services (Daleiden 2010) and KidCare Emergency Mobile Psychiatric Service (Guerra 2006). The UK service was Lothian CAMHS Intensive Treatment Service (Duffy 2014) and the Canadian one, Family Preservation (Wilmshurst 2002).

D2 schools outreach

D2 services involve mental health experts going into schools to work directly with CYP/families, train and support school staff, and/or carry out preventative and low-level intervention work. Schools outreach differs from school-embedded (B2) services in that the mental health staff are ‘visitors’ rather than permanent members of staff. Unsurprisingly, our heatmap analyses identified interagency working (X5) and consultation-liaison (X17) as features strongly associated with D2 services.

A significant proportion of the 23 D2 service descriptions were UK services and included School nurse drop-in clinics (Clarke 2003), Mental Health Services and Schools Link Pilots (Day 2017, Houses of Parliament POST 2007), Mental Health Link Worker (Hunter 2009) and, most recently, Mental Health Support Teams in Schools (BPS 2019). Several US services were also identified including Early Childhood Consultation Partnership (ECCP) (Gilliam 2006, Gilliam 2007), C3: Classroom-Community Consultation (Lee 2017) and Links to Learning (L2L) (Atkins 2015). Services identified in other countries included Fil Harmonie (Oppetit 2018, France) and Response, Early Assessment and Intervention in Community Mental Health (REACH) (Cai 2016, Lim 2017, Singapore).

D3 community outreach and liaison

In D3 services, mental health experts consult-liaise in the wider community – schools and colleges, youth centres, primary care centres and religious buildings, for example. Staff in D3 services have a wider remit than those working solely in outreach to home (D1) or schools outreach (D2); some D3 services also overlap with those in paediatric liaison (D4). As with schools outreach, it was unsurprising to find D3 services strongly associated with interagency working (feature X5) and consultation-liaison (X17).

Around half of the 39 D3 service descriptions described UK services. Many of these focused on the Primary Mental Health Worker (PMHW) (e.g. Callaghan 2003a, Callaghan 2003b, Callaghan 2004, Conlon 2009, MacDonald 2004, Walker 2005), a key role requirement of the original 1995 ‘four-tier’ framework. 13 Other UK services included Newham Child and Family Consultation Service (Aggett 2006) and Primary Mental Health Team (Gale 2003, England; Whitworth 2004, Wales). Some UK services were targeted at specific populations, for example, Direct Access Mental Health Service for Looked-after Young People (Arcelus 1999). Several service descriptions considered state-wide US initiatives, for example Massachusetts Child Psychiatry Access Project (MCPAP) (e.g. Aupont 2013, Coffey 2017, Sarvet 2011, Straus 2014) and Washington’s Partnership Access Line (e.g. Barclay 2016, Gabel 2012).

D4 paediatric liaison

These are hospital-based services aimed at improving care through the integration of physical and mental health care. Consultation-liaison underpins these services with mental health staff supporting paediatric (children’s physical health) services. Paediatric liaison’s core business covers two main areas: psychiatric emergencies and supporting the mental health of CYP with (usually long-term) physical health conditions. Services delivered in a community rather than hospital setting are better classified as D1, D2 or D3. Unremarkably, our heatmap analyses found D4 services to be strongly associated with interagency working (feature X5), triage (X13) and consultation-liaison (X17) and moderately associated with crisis care (X16).

The 16 D4 service descriptions came from many countries and many explicitly referred to ‘liaison’ in their name, for example, Paediatric Liaison Psychiatry (McNicholas 2018, Ireland), Paediatric Liaison Child and Adolescent Mental Health Services (PL-CAMHS) (Garralda 2016, UK), Paediatric Liaison (Woodgate 2006, UK), Liaison Psychiatry Service (Lenoir 2009, France) and Child and Adolescent Psychiatry Consultation-Liaison Service (Sheridan 2017, USA). D4 services with more esoteric names included Onsite Child Guidance Model (Mahajan 2007, USA), Emergency Room Follow-up Team (ERFUT) (Greenfield 1995, Canada) and Kids’Link Hotline (Roman 2018, USA).

E1 wraparound approaches

Wraparound is a collaborative, team-based approach to service and support planning for CYP with complex needs and their families. This includes, but is not restricted to, CYP with mental health problems. Much of the wraparound literature, however, focuses on youth offending. The core components of formal wraparound, agreed by consensus in 1998, underpin what the National Wraparound Initiative70 calls ‘high-quality wraparound’. High-quality wraparound requires youth participation, collaborative working, community- and strength-based approaches, cultural competence, ‘natural supports’ (relatives, friends, neighbours, etc.) and flexibility. Regardless of whether a service met the criteria for high-quality wraparound or not, we coded into E1 any service making explicit reference to support being ‘wrapped around’ the CYP/family.

Wraparound and systems of care (G1; see later) are closely related, in that the principles of systems of care are implemented through wraparound. 71 Case management (feature X19) was associated (moderately) with E1 services in our heatmap analyses. Additionally, and unsurprisingly, E1 services were moderately associated with family work (X3) and strongly associated with interagency working (X5).

Of the 15 service descriptions categorised as wraparound, almost all were from the USA and most explicitly named the service Wraparound (e.g. Barrow 2017, Bonham 2010, Durbin 2012, Karpman 2013, Painter 2012), though a few used more esoteric names such as Full Service Partnership (Chambers 2008, Cordell 2017a, Cordell 2017b) or In2School (McKay-Brown 2019). In2School, an Australian service, was unusual because a school, rather than a health, social care or youth justice agency, co-ordinated wraparound.

E2 multisystemic therapy

Multisystemic therapy is a ‘family-ecological’, community-based model targeting young people aged 11–17 years at risk of placement in care or custody. Its principal proponent is psychologist Scott W Henggeler. 72 It is most often used in youth offending though some MST services exist for CYP experiencing CMHPs. While most E2 services are USA-based, there is a UK and Ireland MST network. 73

Despite being a ‘therapy’, MST does fulfil the criteria for a service model. It has a rigid set of nine principles covering assessment, strength-based approaches, multiple systems collaboration and continuous evaluation. 72 Multisystemic therapy can be seen as an individual level analogue to system level wraparound. 74 Again, heatmap analyses provided unremarkable findings: E2 services were associated strongly with family work (feature X3) and moderately associated with interagency work (X5).

All 10 service descriptions incorporated MST into their names, most simply calling the service MST (e.g. Barrow 2017, Löfholm 2009, Sheidow 2013, Shepperd 2009, Wells 2010), though a few added a qualifier, for example, MST-Psychiatric (McDougall 2014) and Adapted MST (Rowland 2005). Almost all E2 service descriptions were from the USA, though Swedish (Löfholm 2009, Sundell 2008) and UK (McDougall 2008, McDougall 2014, Wells 2010) services were also described.

F1 organisation-level demand management

In F1 models, an entire service is subject to new ways of working to manage demand, flow and/or capacity.

Five of the six F1 service descriptions were from the UK, with the other from Australia. Of the six F1 service descriptions, four focused on Choice and Partnership Approach (Fuggle 2016, Robotham 2009/Robotham 2010, Wilson 2015 in the UK; Naughton 2015 in Australia). Devised by UK psychiatrists Anne York and Steve Kingsbury, the ‘choice’ element in CAPA refers to giving CYP/families a choice: in appointments, treatment options or whether or not they engage further, for example. 75 The ‘partnership’ element is what CAPA calls the treatments/interventions available, ostensibly because CAPA claims to be predicated on shared decision-making. 75 Our heatmap analyses, however, did not identify shared decision-making – nor any other features for that matter – as being associated with F1 services.

F2 patient-level demand management

In F2 services, attempts are made to manage demand by training staff in brief assessment and intervention approaches. A limited number of appointments (often between one and three) are made available for both assessment and any subsequent work the CYP/family are expected to engage in. Our heatmap analyses found family work (feature X3) was moderately associated with F2 services which suggests many of these services expect family, rather than just CYP, involvement.

F2 services were identified in the UK, Ireland, Canada and Australia but not in the USA. Of the 10 F2 service descriptions, only a few mentioned brevity in their names, for example Brief Consultation and Advice (Heywood 2003, UK; McGarry 2008, Ireland), Brief Intervention Service (Gallagher 2015, UK; Wagner 2017, Australia) and Opt-in Appointment and Brief Therapy (Stallard 1998, UK). Other services had names masking the service’s underlying focus, for example, Janeway Family Centre Change Clinic (Hair 2013, Canada), See To Assess, Review, Treat, Evaluate, Review (STARTER) (York 2004, UK) and Young People’s Consultation Service (Young 2012, UK).

G1 systems of care

Systems of care is a US approach to the delivery of children’s mental health services, first conceptualised in the mid-1980s and later refined and implemented in the mid-1990s with the release of federal funds. It is a philosophy of how care should be delivered76 with 13 guiding principles focusing on availability and access, strengths-based individualised services, wraparound (see above), evidence-informed practice, partnerships with CYP/families, integrated services, care (case) management, transitions support and continuous accountability and quality improvement mechanisms. One of the first systems of care was the Fort Bragg initiative. 77–79

Stroul et al. 80 define a ‘system of care’ as:

A spectrum of effective, community-based services and supports for children and youth with or at risk for mental health … that is organized into a co-ordinated network, builds meaningful partnerships with families and youth, and addresses their cultural and linguistic needs, in order to help them to function better at home, in school, in the community, and throughout life.

p. 6

Given this definition is unremarkable that our heatmap analyses found strong associations between systems of care and interagency work (feature X5) though no associations were found with other features (including family work, shared decision-making and case management).

As a USA-specific approach, all 20 G1 service descriptions were from the USA. Many services were explicitly named as a system of care either alone (e.g. Barrow 2017, Bartlett 2006, Biebel 2007, Evans 2006, Miller 2012, SAMHSA 2016, Stroul 2010) or with a qualifier such as Early Childhood Systems of Care (Champine 2018), Systems of Care in Schools (Powers 2011) and California Children’s System of Care (Zanglis 2002). Others such as Family Mosaic Project (Measelle 1998) and Urban Trails (Desmond 2011) were more obscure, referring only to a system of care in the service description.

G2 tiers approaches

These are frameworks for organising services according to a hierarchy based on, for example, clinician-assessed need or case complexity. These frameworks also require some degree of collaboration – or even integration – between service providers. Despite this, integrated care (feature X14) was not associated with G2 services in our heatmap analyses, though interagency working (X5) was moderately associated.

Of the 11 G2 service descriptions, 6 referred to UK tiers frameworks (G2a) and 5 to tiers approaches in other countries (G2b). Four UK G2a descriptions (Atkinson 2015, Houses of Parliament 2017, JCPfMH 2013, Wolpert 2016) referred to the 1995 four-tier framework of English CAMHS;13 the other two (HSCBNI 2018; NICCY 2018) referred to Northern Ireland’s Integrated Care Pathway,81 which also uses tiers.

The English four-tier framework has significant overlap with specialist CAMHS (A) and, to some extent, community-embedded specialist CAMHS services (B) in that, for many years, it has been the organising framework for those services in England. Of the four tiers, Tier 1 (universal) was excluded from the study since its focus is mental health literacy and CYP’s general emotional well-being. Tier 4 refers to very specialised services (usually inpatient) for those with more serious mental health problems like psychosis and eating disorders and so was also excluded. Thus, Tier 2 and Tier 3 services were most relevant to us. These services offer assessment and treatment for those with mild-to-moderate mental health problems, though service entry thresholds have increased in recent years because of rising demands for services. 82 Tier 2 services usually consist of outpatient or community-based appointments with a single professional; Tier 3 services involve multidisciplinary team contact and may also include day patient (A2) services. Tier 2 services were originally expected to employ ‘PMHWs’ to perform extensive outreach and liaison. While we categorised service descriptions focusing on PMHWs as community outreach and liaison (D3) services, most can also be categorised as G2 services.

Tiers approaches in countries other than the UK (G2b) include Multi-tier Systems of Support (MTSS) (Bruns 2016, Lyon 2016; both USA), Life-course Model of Care (Evans 2014, USA) and Multi-layered Care System (Jordans 2010, several low-income countries).

G3 (i)THRIVE

THRIVE is a set of principles for creating coherent and resource-efficient communities of mental health devised by the Anna Freud Centre and the Tavistock in London. 19,83 The psychologist Miranda Wolpert has been key to its development. iTHRIVE is the name for the roll-out (implementation) of THRIVE.

Since only three service descriptions covering THRIVE (Houses of Parliament POST 2017, Wolpert 2016, Wolpert 2019) were identified, we have disregarded the heatmap analyses for THRIVE.

THRIVE is not incompatible with CYP-IAPT (see G4 below) or CAPA (F1 above) and has been mooted as an alternative to the four-tier (G2a) approach discussed above. 19 Its principal focus is the needs of CYP rather than the structures or interventions supposedly meeting those needs. THRIVE identifies five categories of need: ‘THRIVING’ is a general community need, resolved through preventative and mental health promotion work (thus irrelevant to this study); ‘Getting Advice’ is a need resolved through signposting, self-management and one-off contact; ‘Getting Help’ is a need resolved by the provision of evidence-informed and outcome-focused interventions; ‘Getting Risk Support’ is a need resolved through risk management and crisis response; and ‘Getting More Help’ is a need resolved through extensive treatment.

G4 UK psychological therapies frameworks

Two UK psychological therapies frameworks were described in 11 service descriptions. Ten focused on England’s CYP-IAPT (e.g. Edbrooke-Childs 2015, Fonagy 2017, Kingsbury 2014, Ludlow 2020) and one on Matrics Plant in Wales (Improvement Cymru 2020).

Children and young people-improving access to psychological therapy aims to improve the availability of, and access to, evidence-based psychological therapies such as CBT, parenting and interpersonal therapy. However, unlike adult IAPT (see C1 above), CYP-IAPT is not a stepped-care approach. Training existing specialist CAMHS (group A) staff in these evidence-based psychological therapies is a key aspect of CYP-IAPT. In addition to training and outcome measurement, shared decision-making is also a feature. Given the key roles parenting programmes and shared decision-making play in CYP-IAPT, it was unremarkable to find G4 services moderately associated with family work (feature X3) and shared decision-making (X10) in our heatmap analyses.

Matrics Plant (literally ‘Children’s Matrix’) is an all-Wales framework for the development, planning and delivery of ‘psychologically minded’ services to CYP/families which has similarities to (and notable differences from) both adult IAPT and CYP-IAPT in England.

G5 availability, responsiveness and continuity

Availability, responsiveness and continuity is a focused organisational intervention designed to help community-based mental health services improve their social context and thus address barriers impeding service and treatment outcomes. It draws influence from several organisational psychology theories, notably general systems theory and diffusion of innovation theory. Its principal proponent is social worker Charles Glisson. 84 Availability, responsiveness and continuity has three core assumptions: (1) the implementation of ‘technology’ (in its truest sense, meaning the application of theories or ideas) is a social as well as technical process; (2) mental health services exist in a social context encompassing the service, service provider, service organisation and wider community; and (3) service effectiveness is a function of the ‘fit’ between social context and technology. Change agents (drawn from social work, counselling, clinical and occupational psychology) are trained to work at community, organisational and individual levels to bridge these social and technological gaps. At community level, change agents work with stakeholder groups; at organisational level, they facilitate the delivery of mental health services; at an individual level, they work with relevant community opinion leaders such as judges, mayors and religious leaders.

We identified four ARC service descriptions, all from Glisson’s team in the USA (Glisson 2002, Glisson 2012, Glisson 2013, Glisson 2016). Given the small number of service descriptions, we have disregarded the heatmap analyses for ARC.

G6 formal partnerships

There were three disparate service descriptions – all local and all from England – we were unable to categorise elsewhere, but which nevertheless appeared to be examples of formal (legal) partnerships between various organisations. These were Community Children’s Health Partnership (Hewitt 2011), REACH-IN (Ivings 2018) and Solar (Vusio 2020).

The Community Children’s Health Partnership, located in Bristol, is a formal partnership between an NHS Trust and a children’s charity providing a full range of children’s mental health services. REACH-IN, a collaboration between statutory and non-statutory services, is Greater Manchester’s integrated crisis care pathway for CYP aged up to 18 years. It is underpinned by (i)THRIVE (see G3 above). Only outreach (D) services of REACH-IN were within the study’s scope. Solar is a community mental health partnership for CYP aged 0–19 years in the Solihull area of Birmingham. It is a partnership between an NHS trust, a children’s charity and an autism charity with single governance arrangements including single patient records and single care plans. Solar also uses CAPA (see F1 above).

Since we identified only three service descriptions for G6, we have disregarded its heatmap analyses.

G7 Evergreen Canada

Another service description which we were unable to categorise elsewhere was Evergreen, a Canadian national framework for youth mental health care led by psychiatrist Stan Kutcher. 85 It is a framework for Canadian local and federal governments to consider when developing policies, plans and services in CYP’s mental health. It is premised on six values: human rights; dignity, respect and diversity; best available evidence; choice; collaboration; and access to information and services. Two Evergreen service descriptions were identified (Kutcher 2013a, Mulvale 2015).

Most other group G frameworks are either prescriptive or require some degree of framework fidelity; Evergreen, however, is explicitly non-prescriptive. This could explain why, unlike the other frameworks, we did not find any documents outlining how Evergreen had been implemented.

The survey

The primary tool for capturing data on the range of services operating across England and Wales was an online survey via SelectSurvey (v.4; ClassApps, Apollo Beach FL). Our SAG assisted in survey development and piloting and in devising accompanying ‘frequently asked questions’ (FAQs).

The survey was distributed during May and June 2019 and remained open until the end of January 2020. Research team members and the SAG identified both potential respondents and networks that might facilitate access to the survey. E-mails with a survey weblink were sent to relevant e-mail distribution lists, organisations and individuals across the statutory and non-statutory sectors, including all English and Welsh NHS CAMHS. The survey was also publicised through the study’s website87 and Twitter feed (@BlueprintMH). Hard-copy English and Welsh versions of the survey were available for completion by e-mail or post if respondents preferred, or where e-mail addresses were unavailable or no longer in use. See additional files www.fundingawards.nihr.ac.uk/award/17/09/08 (accessed 26 March 2024), for the survey, covering letter and FAQs.

Desk-based searching

Searches of online service directories (e.g. those on the Anna Freud Centre88 and Youth Access89 websites) and general Google searches were employed to supplement the survey information. We used the same principles as for the literature reviews, using combinations of the population (‘P’) and intervention (‘I’) search terms (see Appendix 2). Because Google is not generally geared towards complex searches, these combinations were simpler than they were for the literature reviews.

In addition, all English ‘local transformation plans’ for CYP’s mental health available online were checked for relevant information. The literature search also identified some relevant English and Welsh services which were included in the map if still operational.

Inclusion and exclusion criteria

For consistency, we used the same inclusion and exclusion criteria as for the scoping review (see Appendix 1) with two additions: the service had to operate in England or Wales (or, for digital services, be accessible by CYP living in these areas) and be operational during the 9-month data collection period, May 2019 to January 2020.

Search results

The survey and desk-based searches identified 212 separate services, of which 154 met the inclusion criteria (Figure 17). One hundred and twenty-three different service providers provided these 154 services.

FIGURE 17.

Flow diagram for included services.

Missing data

Since there was a significant number of missing data in the final Excel spreadsheet, particularly from the desk-based searches, many mapping findings relate only to a proportion of the 154 included services. Where this is the case, the number of services providing data is specified.

A few variables (e.g. service funder and service interaction) were not analysed because the data collected were limited or difficult to code into discrete categories. Because economic data might be confidential or commercially sensitive, the economic data questions were optional; consequently, few services chose to provide these data.

Country

Of the 154 services, 114 (74.0%) operated in England, 30 (19.5%) in Wales and 10 (6.5%) across several, or all 4, of the UK’s constituent nations. Predictably, given the populations of England and Wales in mid-2020 were, respectively, 56.6 and 3.2 million,90 more services were identified in England than Wales. However, proportionally more services against population size were found in Wales (around nine per million) compared to England (around two per million), possibly because Wales (like Scotland and Northern Ireland) spends more per person on health than England. 91

Urban versus rural

Of services providing data, most operated within urban areas (city/metropolitan areas or towns), with fewer operating in rural areas and fewer still operating online (Figure 18). Through additional free-text responses, six services defined themselves by geography or setting rather than population density stating, for example, they provided services across a number of schools or they operated at county- or country-wide level. Although services were identified in all English and Welsh NHS health regions, most mapped sites were in the main metropolitan areas of England and Wales.

FIGURE 18.

Proportion of services operating in urban vs. rural locations.

Sector and setting

Service provision was distributed almost equally across the statutory and third sectors (Figure 19). Services provided by the statutory sector, either as a single agency (NHS or local authority) or collaboratively, accounted for 45% of services, while the third sector accounted for 44%. A small proportion of services were provided by the private sector and a similarly small proportion provided collaboratively across all sectors (statutory, private, third). The ‘other’ provider was a university licensing a service to schools.

FIGURE 19.

Proportion of services offered by sector.

The most common settings for services were non-health community settings (Figure 20), which included schools as well as settings such as youth or community centres. Fewer services were located within health settings with only a minority operating in hospitals. Around a quarter of services reported delivering services in the CYP’s home or online.

FIGURE 20.

Proportion of services operating in specific settings.

Cross-tabulating service settings with sector (see Table 4, reading by row), we found, unsurprisingly, that most hospital and health-based community services were delivered by NHS providers and that services in non-health settings were mostly delivered by the third sector. The third sector was also the largest provider of online services. The NHS and the third sector were both significant providers of home-based services.

Support offered versus features

As outlined in Chapter 3, we coded services in the literature reviews against a list of service features as well as against the service models in our typology. Since most support functions listed in Figure 21 ultimately turned out to be features, responses to survey questions about these functions were used to code the post hoc ‘features’ variables. Analyses of these variables appear later in this chapter.

Mental health conditions

Services offered support for a range of CMHPs (Figure 22). More than 90% of services offered support for general anxiety issues and depression and almost 90% offered support for self-harm. These findings are unsurprising given anxiety, depression and self-harm are some of the UK’s most prevalent disorders (see Chapter 1). Less than 50% offered support for adjustment disorder and prodromal psychosis. A significant number of services reported (in additional free-text responses) offering services for a range of mental health difficulties rather than specific conditions, for example, ‘we see anyone for anything’, ‘no diagnoses specified’ and ‘a range of mental health difficulties’. Other free-text responses identified support for sleep problems, stress, isolation, attachment concerns, bullying and exam pressure.

FIGURE 22.

Conditions supported by services.

Some services also reported specifically targeting groups of CYP at greater risk of developing mental health problems, including looked-after children and care leavers, unaccompanied asylum-seeking children, LGBTQ+ youth, young carers and ‘NEETs’ (those aged 15–29 years not in education, employment or training).

Age groups

Services tended to focus mainly on secondary school children, with more than 90% offering support to those aged 12–16 years and/or 17–18 years (Figure 23). Around three-quarters of services offered support to those aged 5–11 years and over 60% offered support to young adults (those over 18 years), perhaps reflecting concerns around transitions between child and adult mental health services. Less than half offered services to the under-fives.

FIGURE 23.

Age groups services support.

Cross-tabulating age groups with service sector (see Table 5, reading by row), the third sector provided more post-16 services but fewer services for under-fives than the NHS.

Type of contact

Almost all services (96 of 97 services providing data) offered face-to-face support, and over 50% (46 of 85 services) offered remote support either online, by telephone or through some other means such as an app or e-mail. Importantly, the mapping data were collected before the COVID-19 pandemic; had it been collected later, the proportion of services offering remote support would likely have been higher.

Most services providing data offered individual one-to-one support (Figure 24), with around two-thirds offering group support and around 60% mixed individual/group support. Around 45% of services offered telephone support and around 30% online support. A smaller proportion offered ‘proxy’ support, that is, consultation with someone acting on the CYP’s behalf.

FIGURE 24.

Type of contact provided by services.

Service target

Predictably, all services offered support to CYP (Figure 25), with around 70% offering support to parents and 35% to siblings. Almost a third reported they would also support peers, for example by allowing friends to attend with the CYP.

FIGURE 25.

Target of services.

Service availability and contact time

Services reported they operated mostly during the working week (Monday–Friday), either during standard office hours (‘nine-to-five’) or through extended hours such as into the evening (Figure 26). Relatively few services operated at weekends.

FIGURE 26.

Service availability.

Of services providing data, around 60% (47 of 82 services) provided time-limited support compared to around 40% (35 of 82 services) providing unlimited access. Those providing time-limited support usually offered a maximum of six to eight sessions, although in some services it was based purely on the CYP’s level of need.

Most services (around 57%) saw CYP on a weekly basis (Figure 27). Few services offered daily or twice-weekly contact. A significant number of services (around a quarter) provided additional free-text responses stating contact was variable depending on individual needs or the treatment modality.

FIGURE 27.

Contact time.

Service staffing

Only 68 services provided staffing profile data (Figure 28). The data, however, illustrate a wide variety of professional and lay staff working in services across England and Wales. Unremarkably, the most frequently reported staff members were mental health professionals such as psychologists, counsellors, mental health nurses and psychiatrists. Around a quarter of services (16 out of 68) added free-text responses to the ‘other staff’ category; other staff identified included emotional well-being practitioners, administrative staff, dieticians, paediatricians, behaviour support staff and student professionals on placement.

FIGURE 28.

Number of services employing specific staff types. AHP, allied health professional; PWP, psychological well-being practitioner.

B1 collaborative care

Ten of the 11 collaborative care studies were conducted in the USA, with 1 UK study (Day 2006). Ten studies were controlled trials with six being RCTs, mostly of reasonably good quality according to our MMAT appraisals. Seven studies were reported in the last 10 years. Most B1 studies focused on depression (Asarnow 2005, Asarnow 2009, Clarke 2005, Richardson 2019, Richardson 2014, Shippee 2018) or ADHD (Kolko 2012, Kolko 2014, Power 2014, Silverstein 2015, Zima 2010). The roles mental health professionals take in collaborative care varies with some jointly delivering care to CYP and families (Clarke 2005), some providing care in liaison with primary care colleagues (Day 2006, Shippee 2018) but most providing support and co-ordination (in the form of case management) to primary care colleagues (Asarnow 2005/Asarnow 2009, Kolko 2012, Richardson 2009, Richardson 2014, Silverstein 2015).

Most B1 studies suggest that, compared to usual care, collaborative care is effective in improving depressive symptoms or behaviour in ADHD. Nonetheless, Clarke 2015 found collaborative care was not much more effective than well-delivered provision of selective serotonin reuptake inhibitor (SSRI) antidepressants by primary care practitioners. Power 2014 found that collaborative care offered no benefits over the addition of brief education and support to usual ADHD care and, as reported earlier, Zima 2010 found outcomes generally did not vary between children receiving ADHD care in specialist outpatient clinics and those receiving (collaborative) care in primary care settings.

B2 school-embedded mental health services

For school-embedded mental health services, two of the four included studies were UK studies (McKenzie 2011, Scotland; Wolpert 2013, England) and two from the USA (Beehler 2012, Finch 2018). Only one RCT, part of a mixed-methods study (Wolpert 2013), was included; one study (Finch 2018) was a non-randomised controlled study and the remaining two (Beehler 2012, McKenzie 2011) were uncontrolled studies. All four studies were conducted within the last 10 years. Although the services considered were all school-embedded, they are somewhat dissimilar. Cultural Adjustment and Trauma Services (CATS) (Beehler 2012) is a US school-based model focusing on immigrant children exposed to trauma. Recovery high schools (Finch 2018) are US specialist schools targeting young people misusing substances. The McKenzie 2011 study describes embedding a specialist CAMHS counsellor into schools in Scotland, and the English Targeted Mental Health in Schools (TaMHS) initiative (Wolpert 2013) facilitated schools to deliver mental health services however they wanted.

Despite their dissimilarities, all four studies hinted at improvements in emotional and behavioural outcomes. Beehler 2012 reported that CATS was effective, especially when its various service components (e.g. relationship building, outreach and case management) are used in combination. Finch 2018 reported that, compared to ‘usual’ schools, recovery high schools improved overall abstinence, lowered marijuana use and improved absenteeism. McKenzie 2011 reported positive changes in student functioning, problems and well-being following the introduction of a specialist CAMHS counsellor. In the Wolpert 2013 mixed-methods study, both the RCT and longitudinal components indicated TaMHS provision benefitted children in primary schools but not necessarily those in secondary schools.

B3 psychiatry-derived community hubs

Given there were 28 scoping review documents describing B3 models, it was surprising only two B3 effectiveness studies met the integrative review criteria. Both are relatively recent: Rickwood 2015a explored Headspace Centres in Australia, while O’Keefe 2015 explored an Irish analogue, Jigsaw Centres. Both studies hinted at improvements in both psychological distress and psychosocial functioning. Both, however, were uncontrolled studies. Importantly, Rickwood 2015a noted not all young people benefit from Headspace Centres; around a fifth ended up worse after using them.

B1 collaborative care

For collaborative care, most of the acceptability studies (11) were, again, conducted in the USA, with two UK studies (Bower 2003, Day 2006), one Australian study (Bor 2013) and one Canadian study (Nadeau 2017). Most were < 10 years old. Given the number of controlled studies providing B1 effectiveness data, it is unsurprising to find quantitative satisfaction measures providing much of the acceptability data. Generally, satisfaction data from the controlled and descriptive B1 studies suggest parents (Adams 2016, Bor 2013, Day 2016, Kolko 2012, Kolko 2014, Power 2014) and staff (Adams 2016, Bor 2013, Fallucco 2017, Kaye 2017) are satisfied with collaborative care services. Only two studies (Asarnow 2005/Asarnow 2009, Richardson 2014) – both RCTs – obtained satisfaction ratings from CYP. Both reported an intervention effect on satisfaction at 6-month follow-up but not at later points.

There were some common themes within the B1 acceptability studies, notably – but not exclusively – in the four studies with major qualitative components (Kolko 2012, Nadeau 2017, Richardson 2009, Rodriguez 2019). Issues around access and waiting times were reported, including the value parents (Day 2006), CYP (Richardson 2009) and primary care clinicians (Bower 2003, Fallucco 2017, Rodriguez 2019) placed on the swift access to mental health specialists that collaborative care seemed to bring about. Kolko 2012 emphasised the importance of on-site (co-located) mental health support. Four studies (Adams 2016, Bower 2003, Faullco 2016, Rodriguez 2019) reported on incidental opportunities for the education, training and professional development of non-mental health primary care staff. Several studies emphasised specific qualities of services and/or the staff delivering services, including care continuity (Day 2006, Nadeau 2017), welcoming and easily accessible environments (Richardson 2009, Nadeau 2017), and person-centred approaches underpinned by shared decision-making (Nadeau 2017, Richardson 2019, Rodriguez 2019).

B2 school-embedded mental health services

Of the four B2 acceptability studies, two were UK studies (McKenzie 2011, Scotland; Wolpert 2013, England) and two were US studies (Nabors 1999, Powers 2013). Nabors 1999 is over 20 years old. Acceptability data for two studies (McKenzie 2011, Nabors 1999) were derived from descriptive quantitative studies; the other two (Powers 2013, Wolpert 2013) from substantive qualitative designs. Data were obtained from CYP in three studies (McKenzie 2011, Nabors 1999, Wolpert 2013) and from staff in three studies (McKenzie 2011, Powers 2013, Wolpert 2013).

As with the B2 effectiveness studies, B2 services in the acceptability studies are somewhat dissimilar. Services in two of the studies (McKenzie 2011, Wolpert 2013) have already been described as these studies also provided effectiveness data. The other two studies describe similar approaches: in Nabors 1999, mental health professionals (psychologists) delivered services in a school-based health centre and in Powers 2013, mental health professionals are embedded in schools to both deliver clinical care and work with school staff.

Informants were generally positive about the B2 services. However, access and waiting times were again an issue. Nabors 1999 reported students wanted rapid access to the embedded mental health professional and session lengths and frequencies that suited them. Powers 2013 argues locating mental health professionals in schools enabled vulnerable students to access care they might not have otherwise accessed. Good relationships with mental health professionals were important to both CYP (Nabors 1999) and staff (Powers 2013). Nabors 1999 and Wolpert 2013 additionally emphasised the importance of mental health professionals supporting the development of CYP’s coping and self-management skills.

D1 outreach to home

These are services delivered in the CYP’s own home or alternative to home. While crisis care approaches fit here, only studies with populations falling within our definition of CMHPs were included. A recent, complementary NIHR study (led by research team member Evans) considers crisis care in CYP in more detail. 94

Three of the four D1 studies (Duffy 2014, Evans 1997/Evans 2003, Wilmshurst 2002) focus on home-based crisis care; the other (Tischler 2002) focuses on an outreach service for homeless families. Two are UK studies (Duffy 2014, Tischler 2002) and two from North America (Evans 1997/Evans 2003, USA; Wilmshurst 2002, Canada). Two are RCTs (Evans 1997/2003, Wilmshurst 2002), one is a controlled study within a mixed-methods design (Tischler 2002) and one is an uncontrolled study (Duffy 2014). All except Duffy 2014 are more than 15 years old.

The D1 effectiveness studies hint that home-based outreach may be effective for CYP experiencing various CMHPs, though our MMAT appraisals suggest not especially robust studies. In a RCT, Evans 1997/Evans 2003 compared three different approaches to home outreach finding all three equally successful in preventing hospitalisations and keeping young people in the community. In another RCT, Wilmshurst 2002 compared a family preservation programme having intensive home support workers available 24/7 with a 5-day residential programme. At 1-year follow-up, significantly higher percentages of family preservation children showed reductions in ADHD, anxiety and depression symptoms, whereas a significant proportion of residential children showed clinical deterioration.

Of the UK studies, Tischler 2002 compared homeless families in England receiving a specialised outreach service with a control group of homeless families not receiving the service. Tischler 2002 found that while parental well-being decreased in both groups, outreach children had a significantly higher reduction in Strengths and Difficulties Questionnaire (SDQ) scores than control group children. In an uncontrolled Scottish study, Duffy 2014 reported on the effectiveness of the Lothian CAMHS intensive treatment service, finding positive changes on a range of child-focused outcomes including functioning, symptomatology, self-concept and quality of life.

D2 schools outreach

Schools outreach differs from school-embedded services (B2) in that mental health staff are ‘visitors’ rather than permanent staff members. Four of the five included D2 studies were US studies (Atkins 2006, Atkins 2015, Gilliam 2016, Holmes 2015), with the other from Singapore (Cai 2016/Lim 2017). Apart from Atkins 2006, most studies are relatively recent. Three studies were RCTs (Atkins 2006, Atkins 2015, Gilliam 2016); the other two (Cai 2016/Lim 2017, Holmes 2015) were uncontrolled descriptive studies.

Most studies focused on behavioural disorders like ADHD, oppositional defiant disorder (ODD) and conduct disorder. Most targeted primary school children, with two (Gilliam 2016, Holmes 2015) focusing on early childhood. All involved mental health professionals working with teachers and other education staff. In addition, Atkins 2006 and Atkins 2015 involved parent advocates and ‘key opinion leader’ teachers – teachers other staff used informally for advice about students.

Generally, included D2 studies suggest schools outreach approaches are effective, especially for externalising behaviour. However, according to our MMAT appraisals, most had significant quality limitations.

D3 community outreach and liaison

In these models, mental health experts consult/liaise with non-mental health specialists in the wider community, for example, those working in schools and colleges, primary care, youth services and religious organisations. Staff in D3 services tend to have a wider remit than the other forms of outreach.

Two D3 effectiveness studies were included (Callaghan 2004, Window 2004/Vostanis 2006), both English and both exploring the ‘PMHW’ role. Primary mental health workers were designated workers acting as a bridge between non-mental health specialists and formal CAMHS. Both studies hinted PMHWs might be effective, though both are over 15 years old. Callaghan 2004 focused on looked-after CYP in an uncontrolled study, finding at 5-month follow-up significant improvements in adult-rated child emotional problems and child-rated peer relationship problems. Window 2004/Vostanis 2006 compared PMHWs in two ‘family support’ services against usual services. Referral to one family support service was open, while referral to the other was facilitated via social services. The study found both family support models provided earlier responses and both resulted in reductions in HoNOSCA and SDQ scores. Of the two models, the open referral model was more accessible; the social services facilitated model, however, was associated with significantly more positive child behaviour and family life outcomes.

D4 paediatric liaison

D4 services are hospital-based services – such as A&E liaison and joint clinics – that aim to improve care through the integration of physical and mental health care. Two D4 effectiveness studies were included, both North American.

A relatively recent, uncontrolled retrospective study (Holder 2017; USA) found using mental health social workers alongside paediatric emergency physicians significantly reduced length of emergency department stay. In a much older ‘natural’ experiment (Parker 2003; Canada), a psychiatrist introduced urgent phone consultations with non-mental health staff or emergency appointments with CYP and families in a ‘rapid response’ model. The psychiatrist’s availability varied over time; consequently, so did the service. Admissions from the emergency department to adolescent inpatients dropped when the rapid response service was available and rose when it was suspended.

Both D4 studies suggest having mental health experts working with emergency departments can reduce the length of emergency department stay and the likelihood of inpatient admission.

D1 outreach to home

The single included study (Tischler 2002), concerning an outreach service for homeless families, has already been described above. Informants (staff and parents) had generally favourable opinions about the service, especially regarding its accessibility.

D2 schools outreach

Three of the six included D2 acceptability studies were conducted in England (Gowers 2003, Hunter 2009, Rothi 2006) with one each being conducted, respectively, in Australia (Corboy 2007), the USA (Lee 2017) and Singapore (Lim 2017). Most of these studies are more than 10 years old. Most D2 acceptability data came from staff informants and most described services whereby mental health professionals provided in-school consultation to CYP and/or their families and liaison to other professionals. The exception was Rothi 2006 who described a liaison-only service in which teachers were trained by mental health professionals to deliver basic mental health consultations.

While staff seemed largely satisfied with D2 services (Corboy 2014, Hunter 2009, Lim 2017), getting access to their mental health counterparts was sometimes a source of dissatisfaction (Gowers 2004, Rothi 2009), though having a link person with whom to liaise could resolve this (Gowers 2004, Hunter 2009). Liaison, whether formal or informal, was especially valued by staff (Gowers 2004, Hunter 2009) and often helped school staff’s professional development (Lee 2017); Rothi 2006 noted, however, that teachers felt their expertise with CYP was often undervalued by mental health liaison staff.

D3 community outreach and liaison

Of the six included D3 acceptability studies, four (Bower 2003, Callaghan 2003a, Callaghan 2003b/Callaghan 2004, McDonald 2004) are from England. Of these, three (Callaghan 2003a, Callaghan 2003b/Callaghan 2004, McDonald 2004) concern the PMHW discussed above; the fourth (Bower 2003) was discussed earlier as it also considered collaborative care (B1). The remaining two studies (Sarvet 2010b, Sheldrick 2012) focused on the Massachusetts Child Psychiatry Access Project, a liaison service to paediatricians, family practice physicians and nurse practitioners in community settings. All D3 acceptability studies had professionals as informants; only Callaghan 2003b/Callaghan 2004 included caregivers and CYP as additional informants. Acceptability data were obtained from surveys in four studies (Bower 2003, Callaghan 2003a, Sarvet 2010b, Sheldrick 2012) and qualitative methods in the remaining two (McDonald 2004, Callaghan 2003b/Callaghan 2004).

The D3 acceptability data identified access and waiting times as an issue, either as a source of dissatisfaction (Bower 2003, Callaghan 2003b/Callaghan 2004) or as a valued service aspect in that users tended to be satisfied when they could obtain access (Callaghan 2003a, Sarvet 2010b, Sheldrick 2012). In addition, organisational barriers such as unclear role expectations (McDonald 2004), lack of user involvement (Callaghan 2003b/Callaghan 2004) and lack of information (Bower 2003) were seen as threats to the successful implementation of these consultation-liaison services.

D4 paediatric liaison

Two studies provided D4 acceptability data, both from Canada and both quantitative descriptive designs. Lee 2014 described an alternative to the use of on-call psychiatry in emergency departments by employing a social worker directly in the emergency department. The rapid response study described above (Parker 2003) also provided effectiveness data. Given the limited D4 acceptability data, no clear themes emerged though Lee 2014 noted that parental satisfaction was associated with waiting time and appointment length as well as the degree to which parents felt listened to by consultants and Parker 2003 reported staff were positive about the rapid response model which implies quick access to mental health expertise may be important in improving services.

G1 systems of care

Systems of care is an approach to the delivery of children’s mental health services based on 13 guiding principles. While wraparound (E1) is a means through which systems of care operates, wraparound services can exist independently of a system of care.

One of the first systems of care was the Fort Bragg initiative (Lambert 1996). Lambert 1996 compared a children’s mental health service for military families operating under a system of care (Fort Bragg) with services for military families (at Forts Stewart and Campbell) operating without any formal framework, finding neither approach provided superior results. The two more recent systems of care studies (Champine 2008, Manteuffel 2002) both report significant improvements in CYP’s general behaviour and functioning, from intake to follow-up, but since both are uncontrolled studies, the effect cannot be confidently attributed to systems of care.

G5 availability, responsiveness and continuity

Availability, responsiveness and continuity is a framework in which change agents are trained to work at community, organisational and individual levels in order to bridge gaps between social context and technology. All three ARC studies are reasonably robust RCTs (see our MMAT appraisals) and all are < 10 years old. Findings from these RCTs consistently support the notion that organisational factors can not only improve youth mental health and functioning outcomes (Glisson 2013, Glisson 2016) but also organisational outcomes like staff morale and job satisfaction (Glisson 2012).

Case study sites

A sampling frame of current services across England and Wales was derived from the service map outlined in Chapter 5. From this sampling frame, we purposively sampled 38 services (26 in England; 12 in Wales) to ensure variability in characteristics such as sector (NHS, non-statutory), locality/setting (urban, rural; home, clinic, school), target age group, mode of delivery (face-to-face, online, telephone) as well as ensuring we captured the spread of models in version 2 of our typology (see Chapter 3). For maximum variation, we also included innovative services (e.g. digital services), services targeting specific specialist groups (e.g. looked-after children), as well as services using models specified in the commissioning brief (CAPA, CYP-IAPT and THRIVE). From this purposive sample of 38 services and in consultation with our SAG, we identified and invited 19 potential sites to participate in the study. Seventeen sites responded within the recruitment time frame, of which three were outside the scope of the study aims. Of the 14 remaining, 9 (5 in England; 3 in Wales; 1 UK-wide) agreed to take part. Online meetings were subsequently held with these sites to negotiate access.

Participants

At each case study site, we aimed to recruit a purposive sample reflecting the characteristics of that specific service. We wanted to include younger and older children, parents/carers, CYP and parents who had declined or disengaged from services, staff that reflected the service’s skill mix and those commissioning services. At each site, we aimed to recruit six to eight CYP, two to three parents/carers and two to three staff members or commissioners. The sample inclusion/exclusion criteria are presented in Box 2.

At each site, a key contact was identified who could approach potential research participants and provide them with information about the study, which was supplied via letter, e-mail or, in the case of CYP and parents, directly when attending the service. For CYP under 16 years, information about the study (including a CYP information leaflet) was first sent or given to parents; only with parental permission were CYP contacted to discuss participation in the study. At some sites, we placed advertisements on the service’s website to alert potential participants to the study.

A range of information sheets for different participant groups were developed with our SAG and some additional young people and parents. All written recruitment materials were available in both English and Welsh. To increase the accessibility of information and allow potential participants to ‘see’ the researchers and young co-researchers prior to taking part (since COVID-19 restrictions prevented the research team physically visiting sites), we created, with the young co-researchers, a video to supplement the written information sheets. This video was hosted on the study website along with the relevant participant information sheets. Site key contacts were asked to direct potential participants to this website.

After receiving information about the study, potential participants were asked to contact the research team directly to indicate their interest in taking part. The research team then further discussed the study with them and, if they wished to take part, arranged a convenient interview time. Attempts were made to recruit CYP who had declined or disengaged from services, but this was unsuccessful.

Being referred

Children and young people and parents accessed services via self-referral, professional referral or a mixture of the two. At Site 2, CYP were selected and offered the service based on a screening test (CES-D) result. The three sites not offering self-referral were all NHS services.

For services requiring a professional referral (usually from a GP or school), CYP and parents described the need to present a case that would trigger a referral to CAMHS rather than be normalised or disbelieved:

I phoned up my GP, I said my daughter is attempting to kill herself and wants to kill herself and my GP turned around to me and said children that age don’t kill themselves … [he] said you need to be stronger and you need to have stronger parenting skills.

P05-35

Parents described how it was important to use the ‘right’ language to get a successful referral and explained how they needed to be advocates for their child. As one mother recalled:

You have to really push hard to be able to get the support you actually really need. I’m quite pushy as a person so I do get there eventually … I said she will be a statistic if you don’t help now.

P06-47

Two mothers described being ‘coached’ in how to present their case:

He [nurse] was, like, coaching us what to say. He goes, unless you say this, they are not going to do this for you … say this, this will be the outcome. And that’s why we’ve had the success with getting [daughter] into CAMHS.

P06-47

They were adamant that … her current level of anxiety was not suitable for their service … the school nurse then did say, well, they’ll only really take the referral if they think they’re actually taking it because there’s an issue with her weight not because of the anxiety.

P05-39

At five sites, CYP could self-refer via an online form or by telephone. CYP valued self-referral because they did not have to discuss their feelings with their GP or school to access support and so there was less risk of them being ‘judged’. It also avoided the need for a professional referral which could involve disclosing their difficulties to their parents or discussing them in their presence. While the NHS sites recognised the value of self-referral in improving access, they were concerned that it might also increase demand for their services. Site 5 provides an example:

Are young people taken seriously when they go to try and get a referral? … to have a professional referral, they have to tell school or they have to tell a GP … the referral process I think is definitely a barrier for some. And for families as well … when people go to the GP … and then you get this referral, when you read it back to mum and she’s saying, ‘I didn’t ask for that’.

SP05-10

Do we go to a self-referral system? But then that’s taking people away from actually delivering therapy to young people. So, that means our waiting list is going to go up. So, what do you prioritise, really? It’s difficult, isn’t it? A difficult decision.

SP05-07

Another site had implemented procedures to prevent their service being ‘inundated’ via the online self-referral system:

A young person or a parent has to ring head office … we just check the age of the young person and whether they live in [local area] and then they’re given a password. We can’t not password our online referral form because young people just having a bad day [would] just fill it in and actually never come for counselling, so it kind of prevents us from being overwhelmed … So they’re given a password to access the online referral form and then they have until Sunday evening after … to fill in that online referral form and, if they haven’t filled it in by then, they’d have to ring again to get a new password … We couldn’t just have an open referral form because we’d just be inundated …

SP03-18

Self-referral was predicated on CYP and parents being aware of the service and this referral route. As one young person noted, greater publicity directed at CYP was important because of their perceived reluctance to seek support from GPs:

More publicity about the service because, yeah, I’m pretty sure the only way I found out was through the doctors, and I know there’s a lot of people that don’t like going to the doctors about mental health … So, I don’t know, if it was published in more places or more detail about it, I think that would be better.

CYP09-48

Some sites described how they promoted their service directly to CYP via schools (e.g. in assemblies) and social media. Promoting services via schools was seen as having a greater reach than social media which relied on CYP and families following the relevant channels:

I suppose we try and do as much as we can on social media but … we only have about three or four hundred followers on Instagram … so a lot of [school] students won’t be seeing that, or aren’t following us, so don’t see what we’ve got.

SP01-01

I first found about [Site 4] in college where someone from [Site 4] came and they were talking about how [Site 4] … helped young people and I was feeling very like stressed in terms of college.

CYP04-44

A Site 2 teacher highlighted the importance of providers ‘selling’ services to CYP during school assemblies:

They were very good at delivering their assemblies, the content was really pitch perfect and, you know, I remember the assemblies that ran, you could hear a pin drop around the room. They [students] were listening, they really enjoyed it and that was a really, really positive experience … from the get go it was sold to them because of the way the workers delivered that, that was really positive … they hear the worker and they want to be part of that.

SP02-23

Working with other organisations to raise awareness of a service was also important since CYP could be signposted to the service by colleges, schools, GPs and specialist CAMHS. To support this, one site employed specific engagement leads who planned promotional activities with other services. At Site 1 and Site 7, the presence of an integrated, multiagency referral panel across a geographical district raised awareness of the services available for CYP and helped reduce inappropriate referrals:

Having the [Wellbeing] Panel has meant that we’re actually aware of a lot of the services that we wouldn’t … they’re all on the Panel, we kind of know what they’re doing … it’s good to be able to keep up-to-date of what they’re able to offer … we have noticed since the Wellbeing Panel’s been in place that … we were getting more appropriate referrals.

SP07-31

Sites 2 and 5 described how they had changed the name of their service to better reflect the service provided. For one site, this had involved changing their name from ‘CAMHS’ to a name reflecting a more multidisciplinary approach and one with fewer negative connotations.

Being assessed

Services assessed referrals against eligibility criteria based largely on the nature of the CYP’s mental health problems and, for most services, the locality in which the CYP lived. Sometimes it was unclear whether CYP aged 16 years and above were eligible for the service.

Service providers highlighted the difficulties posed by poor-quality referrals that lacked information, demonstrated poor understanding of the service’s remit or did not have the CYP’s agreement. Poor-quality referrals could lead to delays in accessing appropriate support or the CYP being assessed as not meeting eligibility criteria:

Some of the quality of referrals that we’re getting from the professionals haven’t been particularly great … from some GPs, we’ll just get the real bare bones and it’s hard to identify what the mental health issue is from the information they’ve given us … But actually when you speak to the parents and you get that little bit more information, you see there is [something] but from the information the professionals have given us there’s no evidence of anything going on really.

SP05-15

One parent described how she was unaware of which service the GP was referring her child to and was confused to find they had been referred to several services including CAMHS:

The doctor referred her, but I didn’t know who she was being referred to. She just said she would refer her for counselling and support, so it was very confusing because I had no idea where she was being referred to … I started getting various letters from different services. It was really confusing … they didn’t tell me that she’d been referred to CAMHS; I didn’t know what CAMHS was.

P07-34

Self-referral and involving families during the assessment process facilitated service entry by enhancing the quality of information available to providers. This information enabled providers to understand the contextual issues surrounding the CYP’s problems when assessing service eligibility:

We like self-referrals because there’s more information and it’s bulky, there’s a bigger narrative around what might be going on. And if I’m truthful, I find the referrals that sometimes come from professionals, there’s not the information that we need.

SP09-21

We actually call them, we call the parent, the young person … with this additional information from the young person’s voice or the parent’s voice, they are suitable for our service.

SP05-10

At multiservice sites, service providers described how having a single point of access (SPoA), where referrals were assessed by a multidisciplinary/multiagency team, helped ensure CYP received the most appropriate service for their needs and in a timelier way. A SPoA also reduced duplication and referral rejection:

I think that [the Wellbeing Panel] works really well in getting families the right support in the first instance rather than them traditionally going to the GP, being referred somewhere, being rejected, go back to the GP, being referred again.

SP01-02

This approach to interagency working and shared professional expertise was also important in managing the flow of referrals into CAMHS by identifying those CYP who might not meet the CAMHS threshold and thus needed support from elsewhere:

It might not be that a young person coming through [the Panel] has moderate to severe mental health problems, which is normally what CAMHS would look at, but they would receive a service, whether it’s a community service, whether it’s a primary mental health team, whether it’s one of the charity organisations. So children are assessed and are given the right service for the mental health need that they present with.

SP07-22

If we are running effectively then we ought to be taking the pressure off CAMHS by seeing those young people who are not serious enough to get referred to CAMHS, but actually if you leave them for another year without support then they will be serious enough to get to CAMHS.

SP01-02

However, for CYP and parents, the processes they encountered and navigated via a SPoA could feel complex and confusing if it resulted in multiple assessments and waiting lists. One young person described how destabilising and depersonalising it was being moved between the third sector and CAMHS parts of a joint service as their level of risk was assessed:

I applied to [service name] and then I got an e-mail saying that I had been put on CAMHS … and then I got moved back to [service name] which was annoying … they told me that because I hadn’t self-harmed in three weeks … I wasn’t doing it enough to access CAMHS … obviously if you’re trying to not do that, that’s the last thing you want to hear … you kind of need a bit of stability and not being moved between the services … you kind of just feel like a number, just being like moved around.

CYP09-45

Participants sometimes experienced a lack of information about the service prior to commencing the therapy or programme provide by the service which may be another barrier to accessing and engaging with services. CYP described not knowing what to expect from sessions or not understanding the nature of the service.

Waiting for support

Sites varied in how timely they were in responding to CYP’s needs. At some sites, an assessment led to immediate or rapid access to therapy and support, mainly because of the assessed level of risk or because it was an intrinsic characteristic of the service:

It [an online service] helps because if you have a meeting with the community mental health team at some point later in the week or month or whatever it is but you’re not having a bad day [then] … it’s just not useful. The point of talking to someone is when you’re struggling in the moment, and I think you can get the best help [then] … And that’s what’s so good about these online services is that if I’m struggling now, I can literally just get on now and talk to someone.

CYP04-56

For many, however, an assessment led to a waiting list for support. As noted earlier, some CYP (e.g. those on ADHD pathways) could be on several waiting lists if they were assessed as needing several services or therapies. Waiting lists were seen as problematic by CYP, parents and service providers for the delays they imposed on receiving support. Children and young people described how they felt their mental health had worsened while waiting to be assessed and then waiting to be allocated a therapist. For one young person, the wait led to feelings her mental health difficulties were not valid:

I saw about three different GPs before they actually referred me as urgent. Like, it was urgent but they kept saying oh, well, the waiting list is pretty long so you might be there for a while. So then when I did get on the waiting list I had to wait for an initial assessment and then I had to wait again, months, for an actual worker to be allocated to me, even though it was urgent … that’s really bad because I was waiting months and months on the wrong medication before I could get help … It kind of made me feel invalid …

CYP06-040

The time between seeking and receiving help was also difficult for parents to contend with. Parents described how communication could be poor while on a waiting list which led to uncertainty over when their child would finally access support, a situation that could lead to parents ‘chasing’ and ‘pushing’ for appointments:

I got really concerned about it, and so I contacted CAMHS. I tried calling, I tried e-mailing, but I wasn’t getting anywhere. Nobody was calling me back … there was such a gap between the initial assessment and getting that follow up, and I did chase it … we didn’t see anyone till the middle of April, and that was because I pushed and pushed.

P07-34

One service provider recognised that for parents on a waiting list, services could be seen as not acknowledging their child’s difficulties:

If you’re a parent who’s gone to the GP because you’ve found out your [child] is self-harming, and you’ve got to sit there and wait for a month before anyone even acknowledges, it’s not that we don’t acknowledge it, but it can be really distressing [for them].

SP01-03

Site 3 had introduced a system of contacting CYP on their waiting list to reassure them they had not been forgotten though there was uncertainty about the frequency of contact:

We’d send them a text after four weeks to say, oh, you’re still on our list. But then we got feedback from some of our young people on our advisory group to say that they didn’t feel cared for because it was such a long time since. So we started to send them a text after every two weeks.

SP03-17

Notably, most sites appeared to have a role in managing demand for specialist CAMHS. For some services, the focus was on preventing referral to CAMHS in the first place (e.g. those unlikely to meet entry thresholds); for others, it related to managing and supporting CYP on CAMHS waiting lists or preventing hospital admission. Some service providers noted, however, higher CAMHS access thresholds had resulted in their services increasingly supporting CYP with greater needs.

Availability of support

Children and young people and parents valued services that were available evenings and weekends. Indeed, many felt services should be accessible 24/7. The ability to make direct contact with practitioners when needed rather than waiting for the next scheduled appointment was also important:

They give you a number and you can just ring them whenever you need them and there’ll always be someone there to speak to you.

CYP06-036

I literally had [practitioner] on speed dial at certain times and she’d call me back. Because I just needed that lifeline.

P08-44

The service location’s convenience could also influence access and perceived service availability. Services not requiring travel due to being delivered at home or in schools or which were provided digitally were seen by CYP and parents as more physically accessible. Indeed, during the data collection period, online services expanded significantly at most sites because of the pandemic (except for Site 6 and for Site 4 which was already a wholly digital service). Adding digital provision appeared to promote access to support by removing travel time and costs and boosting appointment time flexibility. However, there were also drawbacks. Home, digital and school-based services could present privacy and confidentiality issues for CYP (see also Privacy and confidentiality) and accessing digital services had financial implications in terms of the costs of equipment (e.g. mobile phones) and internet access. Digital provision could also challenge engagement as some CYP found it difficult to express their feelings via video or in writing. Moreover, text-based counselling could be problematic for CYP with learning disabilities, literacy difficulties or where English was not their first language. Because video appointments can create additional communication barriers for CYP on neurodevelopmental pathways, some parents felt it inappropriate to use video appointments to assess or provide therapy for these CYP.

Exiting services and continuity of support

Sites varied in relation to whether support was offered for a fixed period or for a more individually determined period according to the CYP’s needs. Once support had ended, most services provided families with information about additional local and national support services. Some sites allowed self-referral back into the service rather than expecting families to restart the referral process from the beginning. One parent described how the service had kept the ‘door open’ and another described self-rereferral as ‘a safety net’:

We went back via that route because that door was already open to us. So, you know, at that point, I was like, look, you know, we are struggling … they are like actively keeping the door open to their service for me.

P08-41

That reassurance again that they were there, we could always go back to them if we were really struggling … For me, it was that bit of a safety net, that comfort that, yes, we’re not struggling with this on our own, they are there.

P06-32

Receiving follow-up contact from services after exiting a service was valued by CYP and parents. One CYP felt reassured the service was planning to ‘check-in’ with her 3 months after discharge to see if she wished to resume therapy; another stated follow-up contact would have made her feel cared for and valued:

In about three months’ time … they’re going to do like a check-in meeting. Me and the therapist that I had are going to be like, hey, how are you doing? Do you want to go back to therapy now or are you feeling a lot better or worse? … It doesn’t feel like they’re just sending me off on an adventure … it feels like they’re actually there, in case I need it.

CYP09-53

She [CYP02-52] said that after the last session, she had been sent a certificate and a stress ball but that there was no further follow-up or contact [with the service]. What she would have really liked … is for the practitioner to follow-up with her after a short period, to check in and see how she was doing … she said if the programme incorporated a follow-up element, it would ‘make me feel I’m important in their eyes and that they care about me’.

CYP02-52; researcher notes

Another CYP would have liked to have remained in contact with the service after being formally discharged rather than being handed over ‘like a basketball’ to another service:

It would be nice if [service] would directly call me, maybe at, like, two weeks later and then a month later, or, you know, come back to the house and see me again. Because it’s almost like they’ve just dropped me off and handed me over to somewhere else now; it’s like I’m a basketball being thrown around. And, like, maybe I’ll stay at one basketball post for longer than the other, but, you know, still slowly deflating.

CYP06-29

Some CYP moved from the service to their local specialist CAMHS due to worsening mental health. However, this service transfer could lead to duplication and delays in receiving appropriate support:

I waited about 11 months [for CAMHS] … it was a very long time. Considering that, I mean, I was quite ill then … I had a choice appointment, and the lady in that basically said to me like, yeah, like … we’ll get you in the system and we’ll get you on some medication. I then waited another, like, six months and had my first appointment through. And they were like oh, we can offer you eight weeks of CBT. And no mention of medication. And I was like well, I’ve just done like 18 months of that already.

CYP03-12

In Site 6, aftercare was planned via a post-discharge support pathway. However, difficulties could still be experienced in transferring CYP to specialist CAMHS, especially in terms of waiting lists and meeting eligibility criteria. Non-NHS sites continued to support young people after they reached 18 years, whereas there was a perceived service gap for those aged 16 and 17 years in some NHS services. Most NHS sites stopped supporting young people once they reached 18 years and some would not accept new referrals from those aged 16 years and above:

The 16- to 18-year-olds, that’s a challenge in some [areas] … where they don’t have a fully comprehensive CAMHS … so we’ve identified that this young person’s got a mental health need but … they might not typically meet the criteria for an adult service and there’s no CAMHS … in that 16 to 18 gap.

SP06-19

Interestingly at Site 9, a multiagency site, services provided by the third-sector partner continued to support young people up to 25 years, while NHS services stopped at 18 years. Extending services beyond 18 years can still create difficulties, however, if the eligibility criteria differ between child and adult mental health services.

Personalisation of support

Participants highlighted the importance of services which offered personalised support or person-centred engagement and which were not constrained by organisational processes, time or risk management concerns. Participants stressed the importance of services being tailored to individual needs and preferences:

Everybody’s experience differs … I wouldn’t want what some of my friends would want and I think that’s the main thing … the type of therapy that I did that, like, helped me probably the most out of everything that I’ve done, that’s got me to the point where I could say that I’m much better, I was talking to my friend about it, she said I couldn’t think of anything worse than doing that … an ideal mental health service would be that everybody recognised that everybody is different, so not everybody’s going to respond from the same things.

CYP03-12

The sites approached personalisation of services in different ways. Some service providers described adopting a person-centred, solution-focused approach to support based on the CYP’s current needs or personal interests:

The fact that we tailor the therapy we give to each child as well. So it’s not like they’re coming to the service and then they get, right, this is week one, we’re going to do this and that’s that. If we started the therapy sessions and we can tell that something is really bothering that child that week, then our plans kind of go out the window and we focus on the child and what they need that week …

SP05-15

Site 2, a school-based service, used scenarios during group exercises that were tailored to the local geographical area or socioeconomic context:

When you’re in a grammar school, you’ll use a different example than you would use necessarily in a school where the education side is not as important … One of the examples … is around ‘you failed on a test’ and in one of our schools they’d be, like, ‘I don’t care’, that’s not an issue for them.

SP02-01

Across third-sector sites, in particular, there was a focus on providing session content that was CYP-centred, that is, age-appropriate, enjoyable and accessible. CYP described how they became more engaged when sessions were fun and when they adopted an informal, creative or interactive approach. For example, one young person – a self-described ‘not a talker’ – enjoyed the opportunity to write blog content, stories and poetry, describing the impact of this as ‘calming and comforting’ (CYP04-34). In addition to being fun, sessions needed to focus on strengths rather than deficits:

What you’re learning was helpful, but then at the same time it was fun. It wasn’t boring, it wasn’t like a class or something … I had [practitioners] who were both like just really fun and really nice and the way they spoke and stuff like that, they were welcoming and nice … And it was the way that they started the sessions as well … everyone would say something that they’d done that week that they were proud of or they’d enjoyed that week, so we all realised that we had something to be grateful for and something to look forward to.

CYP02-26

Not operating under a ‘medical model’ or diagnosis-led approach gave some non-statutory providers the freedom and ability to be more CYP-centred:

We’re not a medical model really … it’s more relaxed and less formal. It’s kind of, how are things going? What do you want to talk about today? Any ‘wow’ moments? I like talking to the kids about any wow moments and any less wow moments. I think it’s the lack of formality that helps and going with their [CYP] agenda.

SP09-21

We’re not a diagnostically led service … there’s no, sort of, protocols and pathways based on that so you’re, kind of, just interacting as a human. And, I think, seeing you as a whole and working with you in your situation I think, for some people, has been really helpful.

SP04-31

Using co-production and feedback from CYP accessing the services to design CYP-centred session content was well established at some sites. Services providing a non-judgemental space for parents and carers, where they did not feel blamed for their child’s difficulties and where the approach was parent-centred rather than deficit-focused seemed to promote meaningful service engagement:

It’s really great for parents not to have another setting in which the child has to comply or behave … it can be very shaming for parents who have children with challenging behaviours to come to many settings that feel very public. And I think something that is a positive experience for parents is that kind of safe experience that they [get here].

SP09-46

However, for some parents of CYP on neurodevelopmental pathways, services were often perceived as overly structured with a ‘tick-box’, deficit-focused approach which could be distressing for both parent and child:

It’s really hard when your child is sat next to you, to talk about their problems. It’s a bit brutal for the child … they never ask about his good points, or what we love about him. [Son asked] ‘why am I different mum?’, it’s rough on the kids … you feel quite bad when you come out of these meetings … I like to call the service the ‘shit parenting course’ … I understand they have a job to do but sometimes it is just like bullet points.

P05-16

Some sites – Site 6 in particular – adopted a holistic, ecological approach to support, working with the wider family as well as the CYP. Service providers thought this important in ensuring services could understand the wider context of family life and tailor support accordingly:

Because it might not be just one person working on a case, we can, sort of, all do different things. So, we have that bit of a luxury where we can, sort of, plough a bit more of our time in … You know, you can really, sort of, get to know these young people and their families, as well … [they] trust us because, you know, we’re always just on the end of the phone; if they want us to come out, we’ll come out.

SP06-17

Parents welcomed holistic family support and felt it promoted their child’s engagement with the service:

Whilst they were there for [child], they were there for us … And I know fundamentally, it was around [daughter] and what she needed, but actually that support was there for us … really friendly, really approachable … [daughter] doesn’t really say anything to anyone, but she was talking to them … [daughter] took to [practitioner] straightaway and would chat with her. And I don’t see that very often.

P06-32

The ability of Site 6 (an NHS service) to provide a personalised approach may relate to the intensive and short-term nature of the support provided and that the setting was the family home. There were, however, concerns from staff about the impact increased workloads might have on this valuable aspect of service delivery:

At times quality may have been compromised slightly just because workload did increase. So rather than seeing maybe one or two people a day and being able to spend three days with them and doing all that liaison work, it might be that you had to see two or three people each day, so you just did not have time to do all of that liaison work in detail as you would have done previously … you just don’t feel like you’ve done as good a job, if that makes any sense.

SP06-09

Choice and involvement in decision-making

Children and young people and parents valued services which involved them in decision-making and which offered them choice: choice in how to access services (including self-referral), in the mode of delivery and service setting, choice of practitioner and in the type of support/therapy provided. Some service providers saw involvement in decision-making as an ongoing process:

It’s about, you know, asking what they want as they go along … You know, the young person says, ‘I’ve changed my mind, I don’t want to try and get this’, then we’ll say ‘okay, what is it you want to do?’ … a central part is that their voice is really important.

SP01-04

Some sites were able to offer CYP a choice of delivery mode (e.g. online vs. in-person, group vs. individual) and some provided options for the location of in-person delivery. However, other services were unable to offer CYP a choice because their programmes were designed to be delivered in a specific way, for example, peer support through group approaches. Group approaches were also deemed necessary to manage service demand or reduce treatment waiting times. Lack of choice was not always problematic, however:

Generally the response was I don’t want to do group work but I’ll do it. And then, by the end of the group, they’ve gone I don’t want to leave, I really enjoyed it … So, it was both good for the young people and it was also good for the service … previously of those eight people, maybe four or five of them would have ended up on a one-to-one waiting list, now they’ve done the group maybe only two or three will.

SP05-07

While some CYP valued the opportunity of accessing a supportive peer group where shared experiences could be discussed, there were caveats to this approach. Not all CYP felt confident about discussing their feelings in a group setting. For instance, there were issues about confidentiality in school settings:

I’d say the best thing is that it’s, like, the groups weren’t in, like, your classes, so it wasn’t, like, people you were used to talking to and I think that made it a bit better, because you could be more open about things, because you wouldn’t be worried that, like, you’d be talking to your friends about it, and things, because they were just other people in the year who you hadn’t really spoken to. But you get to know them more at the same time and you can become, like, friends with them, without having that fear that they might, like, talk to other people about what you’ve said.

CYP02-54

Site 4 (a wholly digital service) was predicated on having a self-directed process in which CYP made their own decisions about what elements of support they wanted to access, for example, engage in live chat with a practitioner versus access website resources only. Having this choice was valued by CYP:

The nice thing is it is a not a counselling service unless you want it to be. It can be as formal or as informal as you want it to be … it is nice that you don’t have to talk, that is optional.

CYP04-43

Children and young people could also select a preferred practitioner at Site 4, based on information provided on their website:

A good option is where it says ‘meet the team’ and you can see who each person is, they usually have a background of themselves and what they do … I can see who they are … Sometimes you can even ask for a preference to speak to someone …

CYP04-56

At some sites, the potential for choice was more limited, as therapeutic interventions were based on practitioner assessment of clinical need, demand management or diagnosis-led pathways. One service provider talked about CYP’s ‘best interests’, though not necessarily from the CYP’s perspective:

We are focused on what’s right for that young person, whether they agree or not sometimes. Most of the time they do, but whether they agree or not, we will tell them that this is in your best interests, this is why we’re doing this … I do think it’s important that we have that best interest right at the forefront of everything we do.

SP05-07

Another service provider acknowledged that the presumption of choice based on, for example, information provided on a service’s website might be misleading for CYP and families as practitioners had to balance CYP/family preferences with their own clinical assessments of ‘best interests’:

I think the other challenge is clearly defining each service offer, while saying these are our service offers but you might not necessarily get to where you want to go, which is a tricky thing in terms of triage and assessment and what comes out of that assessment. Should they really go to canine therapy, should they really go to CBT? … that is a continuous challenge to weigh up … the choice of the child or the young person with what is clinically best for them in terms of treatment.

SP09-14

Practitioner qualities

Across all sites it was staff attributes – notably, staff expertise, personal qualities and interpersonal skills – that appeared to influence which services were perceived as acceptable and effective by CYP and parents.

Children and young people and parents valued being supported by staff perceived to be experienced and knowledgeable, including in some cases by virtue of the staff member’s lived experience of mental health difficulties. Lived experience alone, however, was insufficient. CYP and parents wanted staff recognised as skilled or specialists in mental health, staff who were well trained or ‘accredited’ in some way:

It was also the fact that it wasn’t just any old person. It was someone that knew what they were doing and had dealt with this type of thing before and had, like, ideas of how to fix that already … That [it was] backed up in more than just feelings.

CYP01-28

This was particularly so for parents accessing support for CYP on neurodevelopmental pathways and for digital service providers who wanted to demonstrate ‘authenticity’ to remote service users. Particularly within NHS services, being seen by an accredited, trained mental health professional (rather than a support worker) indicated that the severity of their mental health difficulties had been recognised:

I’ve not really met any bad mental health nurses. I’ve met bad support workers … they’ve just not had any training, I think, with mental health issues. They get surprised by everything they see … and they don’t really know what to do. And they have to get the nurses to take over most of the time. Because when I was at [Site 5], I never had a support worker, it was always a nurse … Yeah, it was crucial that it was a nurse.

CYP05-08

Service providers highlighted the importance of interagency, multidisciplinary teams in providing the range of expertise necessary to effectively support and signpost CYP and families:

I think the fact that we are one service and we’re not split into the different teams does work very, very well. So, you can move almost internally within the service, you’re not having to be referred onto other people. You can go into Crisis, and that’s not a different team, and young people are not having to be referred back …

SP05-07

In addition to expertise, the personal qualities and interpersonal skills of practitioners were important. Staff considered to be non-judgemental, genuine and empathic were able to build trust with CYP which, in turn, helped to normalise and de-stigmatise their experiences. These skills, along with a passion for their role, appeared to support engagement with services and the development of positive therapeutic relationships:

It was almost like talking to a friend … she made me feel as though she’d known me for a very long time, and I felt like she really understood, like, the things that I was like battling with … Sometimes, with some of the people that I’ve seen for my mental health, it … literally just feels like I’m sat talking to this person and they’re literally sat listening to me because that’s what they’re paid to do. And I didn’t get that feeling at all with her. It felt like she wanted to be there and help me … It felt like, you know, she actually like cared about me.

CYP03-12

She’s amazing, [practitioner]. She’s so passionate … and I think that’s the thing, you know? I don’t know if everybody that works for [Site 8] is as passionate … I don’t know whether that’s their own life experiences but yeah, they really, really care, they don’t just go through the motions of the job and that really hits home, so it does pull you, it really does pull you in.

P08-44

Children and young people valued practitioners who remembered details of their lives and used this to engage and build trust with them in subsequent sessions. Older children valued services which were able to communicate in an age-appropriate way and which recognised their developing independence and maturity:

I’ve been in and out of counselling and stuff since I was little … with [counsellor], I didn’t really want the sessions to actually end because it was very helpful for me … the best I had throughout life really … it’s the way she would speak to me, she wouldn’t talk down to me, because that’s something that happens quite a lot … It’s a little bit condescending or, I don’t know, or they go like the other way, it’s too pampered and I’m like babied too much whereas [counsellor] would do it like perfectly when she’d speak to me like an adult but wouldn’t make me feel like I have loads of responsibilities …

CYP09-48

Positive relationships

Positive relationships between professionals and CYP and their parents appeared to be underpinned by good communication and ‘relational’ continuity of care (i.e. seeing the same practitioner). Communication and regular contact with CYP and parents, both prior to service access and between sessions, were important in developing therapeutic relationships, building trust and maintaining engagement. CYP valued seeing the same practitioner each time (or having a named worker) as this provided consistency and so facilitated the development of trusting, positive therapeutic relationships. In some services, however, the consistency of a named worker needed to be balanced against the convenience of drop-in support:

I think it [having a named worker] is good, like you have someone who understands you. But it depends because … they have a special time when they can be available and you might not be able to be available then because you might be going out … whilst the other one [live chat drop-in support] it’s like you can easily come on whenever you want to.

CYP04-44

Some services placed a particular emphasis on the continuity of the therapeutic relationship. In Site 2 (a school-based service), continuity of staff from the programme was seen to promote positive relationships and good communication with the school (both staff and students), which in turn facilitated the programme’s delivery and the mobilisation of support resources:

The [service] staff who do the assembly [to introduce the programme] are the ones who are going to be there on the day, so they’ll say, hi I’m [name], it’ll be us you’re coming to see … any anxiety they [students] might have about coming to a group, we kind of break down those barriers …

SP02-01

Some services promoted continuity by giving CYP the option of working with the same practitioner when reaccessing a service, although this could lead to a wait for appointments. Where relational continuity was disrupted by maternity leave, staff sickness or practitioners leaving the service, continuity could be facilitated by staff sharing information and offering gradual transitions to any new practitioners:

My key workers came to see me, and it was like this is who you’re going to have when you come out [of inpatient care], they’re going to come and see you, we’re going to make sure that we have a good relationship before you come out … [later] it changed because, well she had a baby, so she left … I got passed on, but we built up to it, so it was a steady process … I met my new therapist a few weeks before she left, and she came in and sat with us.

CYP05-08

However, such continuity could be undermined by poor interagency communication and a lack of shared systems resulting in CYP having to repeatedly share information, often when transitioning to adult services:

It’s a nightmare. The thought of that [transition] is just terrifying because I’ve obviously built a good relationship with my current worker so then for them to say right let’s start again … I’m hoping that the child services and the adult services work together more so I don’t have to keep repeating stuff over and over again … like, just give them my file, let them read it for five minutes and then … It would save so much time and resources and everything …

CYP06-40

Positive relationships between staff within service provider teams were also important. Service providers described how teamwork was an important support mechanism in coping with emotionally charged work:

It’s important that we feel cohesive and have that support from each other. It’s not really work you can do in isolation. We often pair up, which is probably a difference between us and other services.

SP08-29

Good teamwork appeared to be important for staff coping with increasing service demands and workload. Service providers associated service effectiveness with having manageable caseloads and appropriate administrative support. Liaison work facilitated through good interagency relationships, whether formal or informal, appeared to be another factor associated with service acceptability and effectiveness:

[Site 1] have a good relationship with like high schools and stuff like that … so I did get her [practitioner from Site 1] to message the head of inclusion … So I even went in for a chat with her [head of inclusion] … and she was like … what can we do as a school to help you? And I just said, you know, tell the teachers to chill out a bit. Like to do with schoolwork and like maybe a bit more accepting … she kind of resolved them for me, if you get what I mean.

CYP01-15

Privacy and confidentiality

How privacy and confidentiality were managed was an important factor in service engagement. Three areas seemed to impact on service acceptability and effectiveness: safeguarding and managing risk; tensions and challenges arising within families; and service settings.

Regarding safeguarding and managing risk, CYP were sometimes unclear about limits to confidentiality which challenged their engagement with services and their trust in practitioners:

Them telling my parents about [safeguarding matter]. Because I was 16, they were like we need to tell them ’cause you’re not an adult. Yeah, that was a really hard thing to go through. My first CAMHS nurse sat my parents down and literally told them everything, and I was like are you for real? … she was like, right, I need to talk to your parents, so they’re coming in. She went out of the room and rang them, and I didn’t know. She was like, oh, I’ll be back in a minute … And then she brought them in, and told them everything that I had told her … I didn’t tell her everything … I just told her a smaller thing, to see if I could trust her … I didn’t really trust her again.

CYP05-08

Thus, a failure to fully inform and involve CYP in decisions affecting them and a failure to manage risks around confidentiality and the disclosure of information could undermine trust in services:

When I was at college, I was seeing a counsellor and I had told them some information about stuff that was going on at home … It was nothing to do with safeguarding, it was generally nothing that would have been worrying, and obviously I was told that was confidential. But then that got passed on to my head at the college and then that somehow got back to my mum, which obviously caused issues at home. So from that, I lost all trust in counselling and I refused to see the counsellor at college … So yeah, stuff like that, trust, my trust is very easy to go, especially with adults, so I’ve had a history of bad experiences with adults and teachers and people who betray my trust.

CYP09-48

Regarding tensions and challenges within families, some CYP felt empowered and ‘in control’ when they accessed services without parental involvement:

It was completely up to me and there was no, like, parental involvement [at Site 3, a third sector organisation] … I decided I didn’t want my parents involved with it. I wanted it to be something that I did by myself. And so she was like, yeah, that’s fine … It was nice to be in control when everything else that I’d done was sort of dictated to me …

CYP03-12

However, respecting CYP’s right to confidentiality and privacy could also present challenges for parents who sometimes felt excluded when they just wanted to support their child as best they could:

Sometimes I feel like they don’t tell us everything … I think whatever conversation they had they should tell us as a parent for us to know how to deal with [daughter]. Because sometimes, like [daughter] sometimes, say, she’s not open … I think if they give us a summary about the conversation or something like that I think it will help … she [daughter] might say one thing which might help us to change or to do something differently.

P06-33

One parent, in recognising the competing priorities of a CYP’s right to confidentiality and a parent’s desire to help, suggested services could engage with CYP and parents through ‘bookending’, that is, facilitating CYP and parents to discuss access to future support both prior to, and at the end of, (individual) support:

It is just that if I’d had had perhaps more feedback, I know they’re confidential sessions … I completely understand that, but maybe if I’d had a kind of the session’s bookend: ‘We’ve spoken with [son]. We can’t talk about what we spoke about. However, we feel that maybe he may benefit from moving on to this or moving on to that.’ Yeah, I think the only thing I would suggest would be about bookending the start and the end of the session …

P01-21

Regarding service settings, while particular service settings or locations might facilitate service access, some could also present privacy and confidentiality challenges if other people could be aware of the CYP accessing mental health services or if the setting did not afford sufficient privacy.

Locating a mental health service within a school could positively influence a school’s culture, through increasing mental health awareness within the school, increasing the frequency of conversations about mental health and through challenging stigma:

The good thing about doing it [mental health work] with the year group is that if you work with a third of the year, the culture of the year changes … feedback has been great and we’ve had some of ours [students] who have gone on to be wellbeing officers for the school … others who have, yeah, kind of, ran the mental health days as part of mental health awareness week … it’s opened conversations and, if anything, our aim as well, we take away the stigma of mental health in a school … Being able to say, actually, I don’t feel this way and it being okay, that changes the culture of a school.

SP02-01

However, services located in schools and colleges could challenge confidentiality. Names could be read out in class, for example, revealing mental health difficulties to peers and potentially increasing stigma:

They read it out, in the lesson, who was in what group. I didn’t really mind, but I know other people were a bit annoyed that they read it out. Because if you get put in there [the programme] they were a bit like ‘you’re dead sad’ …

CYP02-26

I remember being knocked by, like, sort of being singled out … the teacher would come and collect me, and there’d be like a laugh or something like that.

CYP02-06

Indeed, service providers acknowledged potential peer group stigma may prevent some CYP accessing services:

There probably is a bit of a stigma in the schools as well where young people don’t want to admit that they are going to a mental health support session and they have got to do that [for] six weeks or whatever. So, you will probably get some who will just disregard that and say, ‘I don’t want to do it’ or ‘I’ll give it a go, but I’m not coming back’ … because they are a bit worried about what other people think of them.

SP02-06

I do think sometimes they are a bit embarrassed and that’s why I don’t burst into a tutor group and say, you, you, you, you have been selected [for the programme] … It’s why I pull them out of the classroom and try to do it sensitively …

SP02-55

While accessing services within schools could appeal to CYP who did not want their parents involved, there were nonetheless concerns that information would be shared with teaching staff:

A lot of young people were saying to us that they were not quite as honest on [the screening questionnaire] as what they wanted to be because they were worried about who in school was going to see that questionnaire … Schools work differently … so in some schools, our teams were going in and doing the questionnaires and in others, the teachers were doing them. And we always gave them a big brown envelope for the kids just to put them all in and seal it … children were telling us that they knew that teachers were looking at them and they have a real issue around sharing of information with teachers; they don’t feel like their information is safe.

SP02-03

At Site 5, a young person described not being given any choice about being seen by her CAMHS worker in college despite privacy concerns:

When they [CAMHS worker] first started coming into college, I was a bit like I don’t really want it to be at college … I think they wanted to see me in an educational background, how I was, because my mood sort of like went up when I was at college … It’s a big thing when you’re like 16 and they see an NHS worker walk into a room with you, and all your friends are like, what is she doing? … and even when she took her lanyard off, they get visitor badges and everyone’s like who are you seeing on a weekly basis? And I’m like … I don’t want to say, because it’s a bit personal …

CYP05-08

Home visits or accessing services digitally from home sometimes impacted on CYP’s privacy given parents and siblings could be present or in the vicinity:

To have it over video chat is not brilliant. Because I live in a house, my mum works in a school, so like breaks like Easter and things like that, you know, she’s home. And to have the privacy is actually really hard like because a lot of my issues are around her. So I can’t sort of be, you know, honest if you like … I have my sessions then in my bedroom rather than downstairs but, you know … my brother’s next door and he can hear me.

CYP03-14

For one young person, this was their ‘worst nightmare’:

It felt quite uncomfortable, them coming to my house … I didn’t like that at all … That was like my worst nightmare because I feel like I can’t open up … like I can’t really express how I’m feeling.

CYP06-40

Site 4, a wholly digital service, was predicated on being anonymous and offering confidential access:

Everything about [Site 4] is completely anonymous. We are quite unique in that aspect of having no identifiable markers at all when a young person signs up … The feedback we’ve had from young people is they found that quite safe, so they can kind of let go of some things and not have to worry about consequences … The anonymity, I think, speaks for itself; it’s such an empowering tool that young people can use, where they can just come, and they can feel heard and seen and valued and not have to worry about the consequence of what they say in that moment, which is just something that they might not experience in any other place in their life at this moment …

SP04-42

I do think there’s something about, what’s the word? Like, I guess, decrease in shame and, kind of, stigma … you don’t have to go and sit in a waiting room, you’re not at CAMHS or you’re not going to that one room in the school that everybody knows is where you go to see the counsellor, psychologist, therapist …

SP04-31

This was important for some CYP because without the assurance of anonymity they did not feel able to talk openly when accessing the service:

It’s because it’s an online platform, so no one knows that you’re going on it, so your parents don’t need to know … It’s like it’s confidential and the person you’re talking to, a named worker, so it’s like it’s a bit different to school in terms of safeguarding – they [school] tell everything … like once I was on about self-harm and stuff and … I said that to my teacher and she goes ‘I’m going to have to report this to safeguarding’ … but on [Site 4] it’s like none of that, so like they were able to give me techniques like why don’t you just like use ice or something but in school it’s ‘we’ll phone your mum and dad’ …

CYP04-44

However, there was scepticism about claims made by sites regarding anonymity:

If something like was to happen and they needed your details, they would then ask for them but instead of like getting rid of them after that incident, they then keep them [on file] … so like now when they ask me, I’m like ‘I’m not giving it to you’ and they’re like ‘well, we already have it’.

CYP04-49

Children and young people could feel a lack of control and ownership over content they shared online which raised digital privacy concerns for some:

I can’t control a lot of things on here, like I can’t delete an entry or I can’t delete a goal. I can’t delete messages … sometimes it feels like they’re controlling a lot of it. I think it would have been better if we could have equal control over this whole site or personal accounts. You can’t even delete your account apparently … you have to message the team and talk to them, and then they have to refer this to some IT staff and the IT people delete it … I just really don’t like that because what if you don’t want to use it and it’s just still there?

CYP04-56

Practitioner learning

A culture in which learning was fundamental to the organisation was valued by service providers and seen as vital in providing effective support for CYP and families since it increased practitioner competence and openness to new ways of working:

Constant learning, innovation and improvement mentality at service level … There’s quite regular continuous professional development (CPD) as well … I like the fact that we have regular training as well and there are always opportunities to do things, to learn more. I’m on a course tomorrow …

SP03-19

One service described how they learnt from one another using formal mechanisms like clinical supervision to develop their practice, as well as more informal mechanisms like team meetings:

We have clinical supervision once a month, which we’re really pushed on, and rightly so, but we also have, once a month we’ll have a group case formulation, where somebody will bring a complex case. But you’re not expected to know everything’, cause it is complicated, and there can be a lot of stuff going on. So, the fact that there’s a culture of being able to say, you know what, I don’t know what to do here, is really positive.

SP05-07

Reflexive practice contributed to a culture of ongoing learning with staff sharing expertise and skills and learning from one another while being supported by their peers. This helped to improve team cohesion and staff retention:

We have a team reflective session with one of the psychotherapists which I think is really helpful … there’s quite a good sense of team camaraderie … the idea of it is to have an opportunity just to reflect and say, ‘God, it’s really hard’.

SP03-37

At one site, practitioners were encouraged to test out new approaches to improving service delivery:

The team are really passionate about pushing boundaries … so if anybody has a new idea or has a thought of something that can work better or that we’re not providing and lacking in … they’re encouraged to put that into place and give it a try. And I think that is really good from the top-down, so [manager] and everybody below really supports that. Plus if you have an idea that you think would be beneficial, that they are more than happy to support you in any training that you need … to be an independent practitioner and know exactly that you’re going to get the support to kind of push those boundaries is amazing.

SP05-15

Such teams appeared to be resourceful and flexible, adapting the way they delivered services to meet the needs of CYP and parents, while being supported by colleagues and managers. Site 5’s focus on innovation was felt to have enhanced their reputation which also facilitated staff recruitment:

We never have problems recruiting to our service … They want to come and have the experience. And I think it’s because of reputation …

SP05-04

In services where a more formulaic approach to mental health work was used, practitioners engaged in ongoing training, reflection and peer review to ensure fidelity to the therapy model (which was seen as ensuring effectiveness) and to improve their knowledge and skills:

The staff are required … to record three sessions, which goes back to people who are higher up, who’ve been signed off to check, and then they listen through them and mark them. There’s two elements, so it’ll be like kind of, the fidelity of it and sticking to the content and then also just generally how the session goes …

SP02-01

Service providers described using feedback from CYP – through a young person’s advisory group or the routine use of service satisfaction questionnaires, for example – to improve their own practice and inform service development or redesign.

Acquiring self-care skills and self-awareness

A common feature across all sites that CYP, parents and professionals associated with service acceptability and effectiveness was that CYP learnt new skills, while also acquiring knowledge and expertise around mental health and mental health issues in general. These skills and knowledge enabled CYP to cope better with their own mental health difficulties. CYP consequently developed self-awareness which helped prepare them for self-management of their mental health issues. One CYP explained:

I just think I know more about myself than I did before. I know how to calm myself down; I know how to process things and now I can do that without even thinking about it. And I’m just a lot more open now than I ever have been, about my past, and my mental health and stuff.

CYP05-08

Skills, strategies and techniques learnt typically centred on emotional regulation or the management of anxiety through relaxation or breathing techniques, ‘self-soothing boxes’ or challenging unhelpful ways of thinking. Some had names like ‘CBT toolkit’ or ‘surfing the wave’ (a mindfulness technique to manage self-harm urges). CYP associated acquiring these skills, strategies and techniques with improvements in their mental health:

I can remember last year, I was feeling like really stressed and stuff, and then afterwards I went on [Site 4] and then there was a lady called [practitioner name] and then she like taught me this technique and I always use it now, like whenever I’m stressed. Like breathe in, like calm and then breathe out, stop, and it just helped me, that really helped me, and I always use that technique.

CYP04-44

I think, they call it ‘where’s the evidence?’ So … if you ever have that feeling of your friends no longer want to be friends with you or something along those lines, it was ‘where’s the evidence to back that up?’ So when you come up with that in your mind, but then you can’t actually justify it, it’s able to reduce that anxiety or reduce that panic because until you speak to them [your friends], or until you actually do find the evidence, that’s just a negative thought …

CYP02-11

And a service provider reported:

I had a little girl who said, ‘my counsellor listened to me and taught me how to surf the edge [of a wave] when I wanted to self-harm’ … she didn’t stop self-harming, but she managed it. So we talked about this wave of feeling an emotion that triggered the self-harm and whether she could surf that wave for a little while. And the time that she could surf it increased and she developed more strategies, and so her self-harm was reduced significantly.

SP09-21

Participants said it was important these skills, strategies and techniques were taught at the right level and so CYP could successfully develop their own coping techniques and achieve a level of independence. This helped CYP identify their own trigger points, recognise how to access appropriate resources when they felt in crisis and understand their own emotional states. For some CYP, having the opportunity to talk about their feelings was a learning activity in itself:

When I was accessing [Site 9] for the first time, I really, really couldn’t talk about anything, and I think, just generally practising talking about what’s going on, it helped me … I’m a much more open person now, I’m very open, and I think practising opening up and being able to put your emotions into words, that practice was really good, ’cause I can now do that with my friends.

CYP09-45

I think [Site 4 has] helped me to talk instead of internalising things … I guess it helps. I don’t speak to Samaritans as much anymore because I’ve got [Site 4].

CYP04-056

Participants described how the use of tools and techniques could result in longer-term benefits for CYP in that they developed coping skills that helped prevent deteriorations in their mental health:

And then there was a mood diary … And me and my other mate from the session have carried that on where you say what you did in the day and then you rate your day and triggers and stuff like that, we learnt all that as well. So, say me and my mum have an argument in the day then that’s going to trigger a bad day, so then I can think about what I can do to stop an argument or prevent one.

CYP02-26

It was a lot of learning how to deal with anxiety, or how to deal with mental health when it does arise … if you do ever start to experience it again, then you’ve always got those techniques that you’ve learned in the past that you can use again, and you can use them over and over again to help you.

CYP02-11

Parents learning new skills

Some services offered parents opportunities to learn skills to support their children. These included skills to help their child with anxiety, low mood and anger, either through peer-supported approaches or through more formalised (face to face or online) teaching:

We’re running some parent support face-to-face groups as well, which are really popular … It’s multi-functional, so, you know, we’re looking at some key things like anxiety, how to help your child with anxiety … some very basic techniques and stuff, low mood, anger, emotional intelligence … looking at recognising a child’s emotions, and how to listen … it’s semi-structured … part psycho-ed [psychoeducation], but part just sharing and support.

SP03-17

A lot of parents do appreciate the fact that we also train the parents if they need it … so the training courses we have on our website we make freely available to all the parents … if the child is a lot younger, we’ll teach the parents all the skills so that they can then support the child …

SP05-15

Another parent described how they had successfully implemented a strategy they had learnt to improve communication with their child:

We recognised that obviously she needs to manage her emotions, but also she didn’t communicate with us effectively how she was feeling. So, we looked at communication strategies so she could really try and tell us how she’s feeling about having to tell us so much. So, we used the traffic light system … although, when I tried it with [child’s name] later, she was a little bit like [pulls face], do we have to? Yes, we do, come on, let’s get it done … Whilst she weren’t back to being the [child’s name] we knew, we noticed a change in her which was massive for us … she’s spending more time with us downstairs.

P06-32

Site 8 provided a service supporting the carers of looked-after children. Carers received specific training on trauma-informed care, which increased their understanding and awareness of the issues facing looked-after children, and helped them acquire skills in how to engage with CYP in trauma-informed way:

It had a really nice flow to it. Obviously, been very well thought out, but it was a mix of kind of the psychology … a mix of kind of stress response systems, and, you know, this is how a brain works, without getting too kind of neurological. A mix of really good case studies. Kind of one of the core elements was pace as a sort of therapeutic style, playfulness, acceptance, curiosity and empathy … I think it was great that they were a week apart because … I would kind of go to the first session, learn about 15 things, and immediately be thinking, oh that could help …

P08-41

Meta-model

Next, from the matrices, we devised a preliminary model of high-quality services for CYP experiencing CMHPs that attempted to integrate all of the factors associated with access to, navigating, and receiving help from, such services. We used the principle of ‘scientific parsimony’100 to produce this preliminary model, that is, we aimed for an explanatory model of service provision that was comprehensive yet understandable. Importantly, this explanatory model is different to the models categorised into our typology and discussed in Chapter 4. Technically, it is a ‘meta-model’ or ‘model of models’; pragmatically, however, we shall continue to refer to it as a ‘model’.

The preliminary (meta-)model was presented for feedback at a meeting (March 2022) that included research team members and the young co-researchers and at the final SAG meeting (April 2022). Research team and SAG members unable to attend the respective meetings were e-mailed details of the preliminary model and invited to provide feedback through e-mail or a videoconference call. Common Room also facilitated an additional group of young people with lived experience to provide feedback on the model. In all, we obtained feedback on the preliminary model from CYP, a parent, commissioners and academics, researchers and clinicians in psychiatry, general practice, nursing and social work. Both the statutory and non-statutory sector sectors were represented in our feedback. Following this feedback, core research team members Evans, Fraser, Kirk and Pryjmachuk met several times to revise the preliminary model into the final model presented at the end of this chapter.