Journal of Health http://hsr.sagepub.com/ Services Research & Policy
The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services Ruth Belling, Susan McLaren, Moli Paul, Tamsin Ford, Tami Kramer, Tim Weaver, Kimberly Hovish, Zoebia Islam, Sarah White and Swaran P Singh J Health Serv Res Policy published online 3 April 2014 DOI: 10.1177/1355819614527439 The online version of this article can be found at: http://hsr.sagepub.com/content/early/2014/04/02/1355819614527439 A more recent version of this article was published on - Jun 19, 2014
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J Health Serv Res Policy OnlineFirst, published on April 3, 2014 as doi:10.1177/1355819614527439
Original Research
The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services
Journal of Health Services Research & Policy 0(0) 1–8 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1355819614527439 jhsrp.rsmjournals.com
Ruth Belling1, Susan McLaren2, Moli Paul3, Tamsin Ford4, Tami Kramer5, Tim Weaver6, Kimberly Hovish7, Zoebia Islam8, Sarah White9 and Swaran P Singh10
Abstract Objectives: To investigate the organisational factors that impede or facilitate transition of young people from child and adolescent (CAMHS) to adult mental health services (AMHS). Methods: Thirty-four semi-structured interviews were conducted with health and social care professionals working in child and adult services in four English NHS Mental Health Trusts and voluntary organisations. Data were analysed thematically using a structured framework. Results: Findings revealed a lack of clarity on service availability and the operation of different eligibility criteria between child and adult mental health services, with variable service provision for young people with attention deficit hyperactivity disorder, autism spectrum disorders and learning disabilities. High workloads and staff shortages were perceived to influence service thresholds and eligibility criteria. Conclusions: A mutual lack of understanding of services and structures together with restrictive eligibility criteria exacerbated by perceived lack of resources can impact negatively on the transition between CAMHS and AMHS, disrupting continuity of care for young people. Keywords resources, transition from child/adolescent to adult mental health services 1
Research and Evaluation Consultant, Evaluation Works, Bedford, UK Emeritus Professor, Faculty of Health and Social Care, London South Bank University, London, UK 3 Principal Teaching Fellow, Division of Mental Health and Well Being, Warwick Medical School, University of Warwick, UK 4 Professor of Child and Adolescent Psychiatry, University of Exeter Medical School, University of Exeter, UK 5 Senior Clinical Research Fellow/Consultant in Child and Adolescent Psychiatry, Faculty of Medicine, Imperial College London, UK 6 Senior Lecturer in Mental Health Services Research, Faculty of Medicine, Imperial College London, UK 7 Research Officer, Department of Childhood, Families and Health, Institute of Education, University of London, UK 8 Senior Research Fellow/Lecturer, LOROS Hospice Care for Leicester, Leicestershire and Rutland and Birmingham and Solihull Mental Health Foundation Trust, UK 9 Biostatistician, Section of Mental Health, Division of Population Health Sciences and Education, St. George’s, University of London, UK 10 Professor/Head of Division of Mental Health and Well Being, Warwick Medical School, University of Warwick, UK 2
Background Studies investigating the transition between child and adult mental health services (AMHS) have raised concerns over the strong likelihood of young people falling between services and ‘dropping out’ of care during this critical time.1 Transition management that promotes continuity of care is crucial, since disruption can adversely affect vulnerable young people’s health, well-being and life chances.2–4 Improvements in transitional care have been hindered by few intervention studies looking at clinical and service outcomes,5 and by lack of focus on young people’s health care needs.3 Variable provision of transition support services, lack of clarity in access procedures, separate access policies and different funding streams have impeded transition between child and AMHS in the US.6 Similar concerns in the United Kingdom (UK)7 were articulated a decade later in the National Child and
Corresponding author: Susan McLaren, Faculty of Health and Social Care, London South Bank University, London SE10AA, UK. Email: [email protected]
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Adolescent Mental Health Services (CAMHS) Review.8 At the interface between CAMHS and AMHS challenges exist that can constitute barriers to transition and continuity of care. Historically distinct development of services for children and for adults has resulted in different ideologies, therapeutic and diagnostic focus; lack of transition protocols and procedures; failures in collaborative, interagency working; different working cultures and lack of staff support for training in young people’s health amongst adult service providers.9–12 In the UK, multi-agency mental health care is delivered by statutory providers (mainly the National Health Service (NHS), some local authority-funded education and social care provision) and a range of voluntary organisations. Based in the community, CAMHS provides both psychiatric and psycho-social care, working through statutory and voluntary providers. CAMHS provide care up to ages ranging between 16 and 18 years; some for over 16 s if in fulltime education. In contrast, most AMHS provide services for young people aged 18 years and older.13 Health and social care are integrated within most AMHS, aiming to provide continuity of care. AMHS encompass acute in patient services, and both generic and specialist Community Mental Health Teams (CMHTs). Generic CMHTs deliver a range of interventions to adults, whilst specialist teams meet needs for assertive outreach, crisis resolution/home treatment and early intervention, the last focused on individuals aged 14–35 years with first presentation of psychosis. In the UK, the National CAMHS Review identified unacceptable variations in regional and local provision for young people with mental health problems.8 Particular concerns related to services for young people with attention deficit hyperactivity disorder (ADHD) and autism spectrum disorders (ASD),14 for whom transition is complex and problematic. Young people with learning disabilities who require on-going support and psychiatric intervention may not meet the eligibility criteria for either the adult learning disability service or AMHS; multi-agency transition services are at an early stage of development and variably implemented.15 Despite policy guidance emphasising access to ageappropriate services in the UK,13,16 age related eligibility criteria have been problematic, marked by a lack of consensus on where CAMHS end and AMHS begin, and variable, often arbitrary use of age thresholds to demarcate services.9,10 Demarcation creates inflexibility,17 in that it fails to consider the developmental needs3 of young people whose lives do not follow a ‘conventional pattern’. Transition is widely accepted as critical to care continuity, yet few studies have identified which
organisational structures, resources and processes facilitate or impede successful transition between CAMHS and AMHS. Such evidence is needed to develop and evaluate specific service models which promote successful transition and to plan future service development. This study’s aim was to investigate the organisational factors that facilitate or impede the effective transition of young people from CAMHS to AMHS from the perspective of health professionals and representatives of related voluntary organisations.
Methods This paper reports findings from a qualitative study carried out between 2007 and 2009, as part of a larger multi-method investigation: ‘Transition from Child and Adolescent Mental Health Services to Adult Mental Health Services’ (TRACK).18 Components included an investigation of transition protocols, a retrospective case note survey evaluating transition and transfer processes and an exploration of users’, carers’ and professionals’ views of transition processes.19–23 Continuity of care was defined using a multi-axial definition24 comprising relational, personal, therapeutic, informational, flexible, cross-boundary/team, long term and longitudinal dimensions. Transition refers to transition of care from one health service provider (CAMHS) to another (AMHS). The term ‘threshold’ denotes a border that has to be crossed to achieve transition between services, variably influenced by upper or lower age limits, diagnosis, recent history of in-patient admission and a number of organisational factors.
Sample Thirty-four health and social care professionals were recruited from four NHS Mental Health Trusts in Greater London and the Midlands, including representatives of four local voluntary sector organisations with vital roles in multi-agency working with statutory services, providing counselling and other support for young people and parents. A purposively selected sample of equal numbers of professional staff representing AMHS and CAMHS from the two regions was intended. The final sample (Table 1) comprised 20 health and social care professionals from the London region, 10 from the Midlands and 4 voluntary organisation representatives (two per region). To assist recruitment, researchers made presentations to staff in participant organisations. Written information was supplied to all eligible to participate, requesting they contact RB by email if they wished to participate. RB finalised recruitment in accordance with the purposive sampling framework and ethical
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Table 1. Characteristics: interview participants. NHS sectors Professional Groups
CAMHS
AMHS
CAMHS & AMHS
Nurses Psychiatrists Psychologists Social workers Managers Other Total (n)
5 4 2 3 2 – 16
3 2 – 4 2 – 11
– – – – 3 – 3
arrangements for informed consent. Recruitment challenges resulted in under-representation from Midlands Trusts, where organisational restructuring was in progress.
Semi-structured interviews Pilot fieldwork and a literature review were used to develop a semi-structured interview schedule. Telephone interviews of 40–60 min duration organised for participants’ convenience were audio-recorded and transcriptions checked by RB against recordings prior to analysis. A structured thematic approach25 was used by RB systematically to code, classify and organise interview content into key themes (using QSR Nu*Dist v.6.0). These, with issues already within the interview topic guide, formed the basis of a framework for coding and grouping sub-themes into core, higher order themes based on similarity of content. This approach was independently reviewed by SM to clarify emerging sub-themes and remove overlap from the thematic framework. Preliminary findings were critically reviewed by the wider research team, reducing the number of core themes within the dataset to four. Illustrative quotes are provided to aid transparency of categorisation and theme representation. To protect anonymity, respondents are identified solely by professional and CAMHS or AMHS affiliations. Trusts are not identified due to small numbers within some professional groups. The study received ethical approval from Wandsworth Local Research Ethics Committee.
Results Two core themes are presented: eligibility issues and resources. Four sub-themes within the eligibility theme were identified (Box 1) and three resource subthemes (Box 2). Further themes concerning organisational culture and working practices are published separately.23
Voluntary sector
Total (n)
4 4
8 6 2 7 7 4 34
Core theme: Eligibility issues Lack of clarity on service availability and eligibility criteria. CAMHS and AMHS professionals desired greater clarity, information and understanding of each other’s service structures, roles and responsibilities to facilitate transition, including service availability and eligibility for referral. AMHS staff perceived the scope of CAMHS as more complex. Informational clarity was thought necessary to enable staff and young people to identify respective service contacts. Different thresholds between CAMHS and AMHS. CAMHS and AMHS staff perceived that CAMHS tended to work with a different client group in terms of the nature of a young person’s problems. CAMHS were perceived as operating thresholds for acceptance over a wider range of distress and dysfunction, encompassing low mood, relationship difficulties and self-harming. In contrast, AMHS were seen as operating ‘higher’ thresholds relating to diagnoses of serious mental illness (e.g. psychosis), forensic histories and clients requiring in-patient admissions. One CAMHS social worker expressed concerns over AMHS provision for young people during periods of relative stability following treatment. Adult services not accepting patients until 17th or 18th birthday. CAMHS staff perceived AMHS as often rigid regarding age criteria when transferring young people. Short-term priorities and caseload concerns appeared to override transition policies which, usually recommended a six-month handover period. A CAMHS nurse reported improvements in one AMHS, but only after reminders about an existing transition protocol, suggesting AMHS staff were either unaware of, or ignored, written guidance, raising questions about approaches to develop and implement protocols and their perceived practicality.
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Box 1. Eligibility issues core theme: illustrative quotes to ensure correspondence with the narrative text. Sub-theme: lack of clarity on service availability/eligibility criteria ‘Clarity over what’s expected of adult services would be helpful. There is a great deal of ignorance on the part of CAMHS as to what adult services do or might do, particularly for some of the more difficult cases, for example ADHD or ASD.’ (Psychiatrist, AMHS) ‘It does seem a bit vague to me what’s available.’ (Nurse, CAMHS) ‘. . . clarity over transfer . . . would help the service that is given to the young people because they are confused. They don’t know who they should be making contact with.’ (Social Worker, CAMHS) ‘I think it is quite hard sometimes for our workers to know who does what because there are Children in Need teams, there are Child Protection teams in the local authority, there’s Looked After Children teams, there’s a CAMHS team . . .’ (Nurse, AMHS) Sub-theme: different thresholds between CAMHS/AMHS ‘It feels sometimes the adult mental health service has a very medical, biological model so of course there is going to be a discrepancy between young people who are perhaps 16, self harming, have low mood, relationship difficulties, poor self esteem, who don’t have problem solving skills, that . . . aren’t going to meet the threshold for adult services.’ (Nurse, CAMHS) ‘Their [AMHS] work is with people who are less able to engage, needing inpatient admission, have possible forensic histories, severe social histories rather than people who are well settled and treatment compliant.’ (Social Worker, CAMHS) Sub-theme: adult services not accepting patients until 17th/18th birthday ‘Their criteria is 18 and they’ll go from 18. It’s just a very rigid interpretation because it protects them. I’ve had experiences with the adult teams where I’ve phoned up a month before somebody’s 18th and they won’t even set a CPA date...’ (Nurse, CAMHS) ‘I think it would probably be fair to say that the perception from CAMHS would be that you had to wait up until the 18th birthday . . . I think for us the bits that are quite difficult is that CAMHS want us to be involved earlier and I have to say we would bat it off a bit . . . we know we need to take them on but they are safe.’ (Nurse, AMHS) ‘This distinction between being in CAMHS or adult services or old age services, I don’t know that that’s helpful. We don’t see it as being flexible. We see people being bounced from one bit to another, with everyone trying to claim it’s someone else’s responsibility.’ (Voluntary Sector) ‘There is a transition protocol which is out of date and is being reviewed, so that might have been part of it. Sometimes you can’t even get past the CMHT secretary if the young person isn’t 18. So we had to remind them that there was a protocol and it was as relevant to them to abide by as us, but some people didn’t see it.’ (Nurse, AMHS) Sub-theme: variability in service cut-off ages ‘I think we sometimes continue working over the age of 18 . . . where there is a specific piece of work to be finished or for the cases of people who are in long-term psychotherapy . . . In an ideal world, the transition should not be made at 18, they should at least be 21 or 25.’ (Psychiatrist, CAMHS) ‘There’s [named voluntary organisation] . . . they will take our clients up to 23 I think, because they accept that they’re vulnerable and therefore the normal age cut-off doesn’t apply.’ (Psychologist, AMHS) ‘I think we’re to some degree governed by children’s legislation . . . beyond that we need to draw a line between child and adult services and it may be an arbitrary line, but 18 is as good a line as any. It’s a blunt instrument and it’s not needs led, but that’s where we are.’ (Trust Manager, CAMHS & AMHS)
Variability in service cut-off ages. Many staff referred to the variability in service age limits affecting decisions on where to transfer young people, resulting in a need to work across service boundaries where shared care was required. In some cases, CAMHS continued working with a young person beyond their upper age limit when deemed necessary. In contrast, the voluntary sector, routinely worked across much broader age ranges. Both services recognised that finding an appropriate age range was difficult, since current age limits were often arbitrary or defined partly by legislation. Professionals also acknowledged differences between legal designations of adulthood and service user maturity, which impacted on young people’s ability to discuss their needs and engage proactively with AMHS. Proactive engagement was a particular concern for young people with learning disabilities.
Core theme: Resources Adult service workloads. AMHS staff perceived high caseloads, due to inadequate staffing as a major transition barrier: causes were not identified, but smaller caseloads were suggested as a remedy. Early intervention teams reported smaller caseloads than general CMHTs, although these also struggled to cope with CAMHS demand due to lack of staff, which were reported to be substantially below national guidelines in some Trusts. Lengthy waiting lists for CAMHS referrals and, in an attempt to accelerate the transition process, instigation of simultaneous referral to both early intervention services and CMHTs resulted. Efforts to cope with staff shortages led to a rigid interpretation of eligibility criteria, raising concerns over shifting pressures to other parts of the service.
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Box 2. Resources core theme illustrative quotes. Sub-theme: adult service workloads ‘If we had smaller case loads I do think that would help.’ (Nurse, AMHS) ‘I don’t know what the CMHT case loads are now but I think they’re around 20/25 and ours are 15 maximum.’ (Psychologist, AMHS) ‘We are about a third the size we should be for the population we cover . . . Consequently we have quite an extensive waiting list which isn’t ideal for an early intervention service.’ (Social Worker, AMHS) ‘That lack of people then results in a threshold being placed at a higher level, or being less able to engage with work within adult services for young people with a relatively low level of need . . . preventing them from needing further help down the line at points of crisis through self-harm, substance misuse . . .’ (Psychologist, CAMHS) Sub-theme: adult services not meeting needs beyond severe and enduring mental illness ‘. . . the criteria are really so tight that it only meets the needs of a very small group of chronic and enduring illness.’ (Psychiatrist, CAMHS) ‘. . . if somebody didn’t meet the criteria of either of those services . . . the only thing that we really have to offer is to go back to the GP.’ (Nurse, CAMHS) ‘. . . 15, 16, 17 year olds, with some kind of early onset psychosis, who seem to be falling through the net. Because CAMHS tend not to work with people who are psychotic...’ (Voluntary Sector) Sub-theme: learning difficulties/ADHD/autism spectrum disorders ‘We have . . . between 350 and 400 cases of ADHD and with that population 50% of them will have had ADHD after the age of 16 . . . it would be good if there was a service to be provided.’ (Psychiatrist, CAMHS) ‘We’re currently developing services with children with learning disability which is something that wasn’t provided as well as we could have . . . we currently don’t have the specialist skills in our adult service to treat people with those needs.’ (Trust Manager, CAMHS & AMHS) ‘The [named] Autism Support Service has an outreach worker who goes into schools and helps the class teachers. ADHD needs something like that.’ (Voluntary Sector)
In addition to longer-term resource implications, young people who failed to transfer smoothly from CAMHS were considered more likely to re-engage with adult services on an unplanned basis in future crises. Adult services not meeting needs beyond severe and enduring mental illness. Participants highlighted a range of resource gaps, with AMHS providing a narrower service range than CAMHS, resulting in concerns that, except for diagnoses of severe and enduring mental illness (e.g. psychosis), individuals’ needs were not being met. Increasing demand for services arising from emotional difficulties and emerging personality disorders did not always fit with criteria for AMHS referral. Where transfer to AMHS was not possible or appropriate, case management strategies included leaving young people with CAMHS for as long as possible. Alternatives were return the young person to the care of a general practitioner (GP) (who might not prescribe treatments), or in some Trusts, signposting to voluntary sector counselling services, where these existed and were appropriate. However, a voluntary service participant raised concerns that young people with early onset psychosis were still ‘slipping through the net’ because some CAMHS tended not to make this diagnosis. Learning disability/ADHD/ASD. The most frequently mentioned resource gap was a lack of AMHS provision for
young people with developmental disorders, particularly ADHD and ASD. Clinicians and representatives of voluntary organisations saw this as a growing area of demand, which some estimated at approximately half those on case books after 16 years of age. This service gap was perceived to harm transition, resulting in some young people travelling significant distances to access voluntary sector support groups. Some Trusts had identified this gap and were discussing how best to deliver services, possibly within primary care. Others were developing services for young people and adults with ADHD and learning disability, noting that AMHS professionals needed to develop skills and confidence in managing this group. Some voluntary organisations were a potential source of expertise in managing such disorders and a support for desperate parents. A need was emphasized for outreach services to provide support in schools for young people with ADHD, echoed in one Trust where statutory service staff reported the loss of funding for a transition/outreach worker post focused on ADHD and learning difficulties.
Discussion This exploration of organisational factors influencing the process of transition for young people moving between CAMHS and AMHS revealed that differing eligibility criteria, underpinned by a perceived lack of
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resources, impacted negatively on transition and continuity of care. Few factors, with the exception of school outreach/transition workers for ASD/ADHD, were identified as having a positive impact on transition, despite specifically asking interview participants to ‘‘identify factors which assist transition.’’ Furthermore, no participants identified the development or use of integrated care pathways which could assist transition between services. Limitations of this study include under-representation both of Trusts from the Midlands region and of psychologists. Organisational and service restructuring in the Midlands Trusts, resulting in service disruption may explain the lower level of recruitment. Findings reflect perceptions, experiences and working practices of health professionals and representatives of voluntary organisations; the experiences of service users, carers and other factors influencing transition are reported elsewhere.19–21 Professionals in both services lacked clarity, information and understanding about each other’s service structures, availability and eligibility criteria, reinforcing concerns about the complexity of the CAMHS– AMHS interface, requiring professionals co-ordinating transition to navigate multiple tiers and service levels.9 Other TRACK findings suggest this is part of a wider problem, relating to differences in organisational cultures, communication and working practices.23 For example, no comprehensive map of CAMHS services was available in London19 at the time of data collection. This lack of mutual understanding of services, structures and availability of information raises questions about their impact on communication, and informational and cross-boundary continuity of care. There were differing thresholds relating to age and medical diagnosis between CAMHS and AMHS, which could hinder the transition process by creating barriers to flexible, long term and cross-boundary continuity of care. Concerns about transferring young people in a stable state to AMHS suggest that for some these barriers may be compounded. Overall, perceptions of staff and voluntary sector workers were that AMHS were not meeting the needs of young people beyond those with chronic, serious and enduring conditions. Others with neurodevelopmental or complex and often multiple problems, including self-harming, depression, ADHD, ASD and learning disability who could not be transferred, resulted either in their retention by CAMHS until early adulthood, return to the care of their GP or reliance on voluntary sector support, which were not always considered appropriate or adequate alternatives. This reinforces wider TRACK findings that a history of severe mental illness and taking medication were significant predictors of transition19 and omission of information in transition protocols
on procedures to achieve continuity of care for young people not accepted by AMHS.19 Perceived staff shortages and high CMHT workloads reported in AMHS explained some of the barriers to transition. Negative effects of staff shortages in AMHS on relational, cross-boundary and longitudinal continuity of care were also identified in the UK ECHO study.26 However, it was not clear in our findings what had led to staff shortages. Whilst linkage of Autism Support Services with schools outreach was a positive development, negative findings that some AMHS staff lacked skills in caring for young people with ADHD and learning disability could be addressed by training and the creation of youth mental health teams. The situation reported here is unacceptable and does not achieve the standards embodied in policy guidance16,13 since it is marked by discontinuities and inequalities. Policy makers, commissioners, service providers and service users should question and address whether the focus of AMHS’ resources on a narrow range of conditions, so that only people with the most severe forms of mental illness are eligible for care, is ethical or justifiable. Policy makers, service commissioners and providers should take into account that current AMHS and CAMHS commissioning processes differ. Transition is a policy priority for both,27 however, our findings show that CAMHS and AMHS recognise people with differing categories and levels of severity and chronicity of mental health difficulties/disorders/illnesses. Any convergence between the categories of mental health problems considered to be within the remit of both CAMHS and AMHS would require respective service commissioners and providers to agree joint priorities. We should not assume that all young adults’ mental health needs are best met by AMHS, as other types of service, e.g. primary care-, education- or third sector-based services, may be more accessible and acceptable. Implementation of the Health and Social Care Act28 in England will determine which care pathways are funded, offering an opportunity to rethink the strategy, resources and funding model for transitional care. Alternative models have been implemented with some success, based on transition services and shared management frameworks.4 In other long-term conditions, appointment of transition co-ordinators who work across both child and adult services can achieve positive outcomes for services and young people.5
Conclusions Mutual lack of understanding of services and structures together with restrictive eligibility criteria exacerbated by perceived lack of resources can impact negatively on
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the transition between CAMHS and AMHS, disrupt continuity of care, and create inequalities in service access and provision. Updated, shared service mapping, collaborative CAMHS–AMHS revision of transition protocols to stress flexibility in age ranges and diagnostic criteria, together with the development of services for young people with ADHD, ASD and learning disabilities are essential to avoid young people slipping through the large and increasingly unacceptable gaps in the transitional care ‘net’.
9.
10.
11.
12.
Acknowledgments The TRACK study team included Swaran Singh, Ruth Belling, Jenny Dale, Navina Evans, Tamsin Ford, Nicole Fung, Katherine Harley, Daniel Hayes, Kimberley Hovish, Zoebia Islam, Bob Jezzard, Tami Kramer, Susan McLaren, Moli Paul, Anne Rourke, Tim Weaver and Sarah White. Our grateful thanks to the managers, clinical staff and representatives of voluntary organizations who took part in interviews for this study.
13.
14.
Funding The TRACK study was funded by the National Institute of Health Research (NIHR) Service and Delivery Organisation (SDO) programme (www.sdo.nihr.ac.uk). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR SDO programme or the Department of Health.
References
15.
16.
1. Harpaz Rotem I, Leslie D and Rosenheck RA. Treatment retention among children entering a new episode of mental health care. Psychiatr Serv 2004; 55: 1022–1028. 2. American Academy of Paediatrics, American Academy of Family Physicians, American College of PhysiciansAmerican Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Paediatrics 2002; 110: 1304–1306. 3. McGorry PD. The specialist youth mental health model: strengthening the weakest link in the public mental health system. Med J Aust 2007; 187(suppl 7): S53–S56. 4. Vloet M, Davidson S and Capelli M. We suffer from being lost: reformulating policies to reclaim youth in mental health transitions. Healthcare Q 2011; 14: 32–38. 5. Crawley R, Wolfe I and Lock K. Improving the transition between paediatric and child healthcare: a systematic review. Arch Dis Child 2011; 96: 548–553. 6. Davis M, Geller JL and Hunt B. Within-state availability of transition to adult services for youths with serious mental health conditions. Psychiatr Serv 2006; 57: 1594–1599. 7. Audit Commission. Children in mind. London: Audit Commission, 1999. 8. National CAMHS Review. Children and young people in mind: the final report of the National CAMHS Review.
17.
18.
19.
20.
21.
22.
Department for Children, Schools and Families and Department of Health, 2008. Treasure J, Schmidt U and Hugo P. Mind the gap: transition and interface problems for patients with eating disorders. Br J Psychiatry 2005; 167: 398–400. Singh SP, Evans N, Sireling L, et al. Mind the gap: the interface between child and adult mental health services. Psychiatr Bull 2005; 29: 292–294. Singh SP. Transitions of care from child to adult mental health services: the great divide. Curr Opin Psychiat 2009; 22: 386–390. Davis M, Green M and Hoffman C. The service system obstacle course for transition-age youth and young adults. In: Clark HB and Unruh D (eds) Transition of youth and young adults with emotional and behavioural difficulties: an evidence based handbook. Baltimore: Paul H Brooks & Co Publishers, 2009. Department of Health. Transition: moving on well. A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability. London: Department of Health, 2008. Nutt DJ, Fone K, Asherson P, et al. Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: recommendations from the British Association for Psychopharmacology. J Psychopharmacol 2006; 21: 10–41. Department of Health. Models of multi-agency services for transition for disabled young people and those with complex health needs: impact and costs. London: Department of Health Policy Research Programme, Social Policy Research Unit, 2010. Department of Health. National service framework for children, young people and maternity services. London: Department of Health, 2004. Social Exclusion Unit. Transitions: young adults with complex needs. London: Office of the Deputy Prime Minister, 2005. Singh SP, Paul M, Islam Z, et al. Transition from CAMHS to adult mental health services: a study of service organisation, policies, process, user and carer perspectives. NETSCC. SDO Project Reference 08/1613/117, 2009. Singh SP, Paul M, Ford T, et al. Transitions of care from child and adolescent mental health services to adult mental health services (TRACK study): a study of protocols in Greater London. BMC Health Serv Res 2008; 8(135). DOI: 10.1186/1472-6963-8-135. Singh SP, Paul M, Ford T, et al. Process, outcome and experience of transition from child to adult mental healthcare: a multi-perspective study. Br J Psychiatry 2010; 197: 305–312. Hovish K, Weaver T, Islam Z, et al. Transition experiences of mental health service users, parents and professionals in the United Kingdom: a qualitative study. Psychiatr Rehabil J 2012; 35: 251–257. Paul M, Ford T, Kramer T, et al. TRACK: transfers and transitions between child and adolescent and adult mental health services. Br J Psychiatry 2013; 202: s36–s40.
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23. McLaren S, Belling R, Paul M, et al. ‘Talking a different language’: an exploration of the influence of organisational cultures and working practices on transition from child to adult mental health services. BMC Health Serv Res 2013; 13: 254. 24. Freeman G, Weaver T, Low J, et al. Promoting continuity of care for people with severe mental illness whose needs span primary, secondary and social care: a multi-method investigation of relevant mechanisms and contexts. Report for the NCCSDO. London: NCCSDO, 2002. 25. Ritchie J and Spencer L. Qualitative data analysis for applied policy research. In: Bryman A and Burgess R (eds) Analysing qualitative data. London: Routledge, 1994.
26. Burns T, Catty J, Clement S, et al. Experiences of continuity of care and health and social care outcomes: the ECHO Study. Report for the NCCSDO, London, 2007. 27. Joint Commissioning Panel for Mental Health. Guidance for commissioners of mental health services for young people making the transition from child and adolescent to adult services. 2012. http://www.rcpsych.ac.uk/pdf/ JCP-MH%20CAMHS%20transitions%20%28March %202012%29.pdf 28. Health and Social Care Act. http://www.legislation. gov.uk/ukpga/2012/7/pdfs/ukpga_20120007_en.pdf (2012, accessed 23 January 2013).
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The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services Ruth Belling, Susan McLaren, Moli Paul, Tamsin Ford, Tami Kramer, Tim Weaver, Kimberly Hovish, Zoebia Islam, Sarah White and Swaran P Singh J Health Serv Res Policy published online 3 April 2014 DOI: 10.1177/1355819614527439 The online version of this article can be found at: http://hsr.sagepub.com/content/early/2014/04/02/1355819614527439 A more recent version of this article was published on - Jun 19, 2014
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J Health Serv Res Policy OnlineFirst, published on April 3, 2014 as doi:10.1177/1355819614527439
Original Research
The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services
Journal of Health Services Research & Policy 0(0) 1–8 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1355819614527439 jhsrp.rsmjournals.com
Ruth Belling1, Susan McLaren2, Moli Paul3, Tamsin Ford4, Tami Kramer5, Tim Weaver6, Kimberly Hovish7, Zoebia Islam8, Sarah White9 and Swaran P Singh10
Abstract Objectives: To investigate the organisational factors that impede or facilitate transition of young people from child and adolescent (CAMHS) to adult mental health services (AMHS). Methods: Thirty-four semi-structured interviews were conducted with health and social care professionals working in child and adult services in four English NHS Mental Health Trusts and voluntary organisations. Data were analysed thematically using a structured framework. Results: Findings revealed a lack of clarity on service availability and the operation of different eligibility criteria between child and adult mental health services, with variable service provision for young people with attention deficit hyperactivity disorder, autism spectrum disorders and learning disabilities. High workloads and staff shortages were perceived to influence service thresholds and eligibility criteria. Conclusions: A mutual lack of understanding of services and structures together with restrictive eligibility criteria exacerbated by perceived lack of resources can impact negatively on the transition between CAMHS and AMHS, disrupting continuity of care for young people. Keywords resources, transition from child/adolescent to adult mental health services 1
Research and Evaluation Consultant, Evaluation Works, Bedford, UK Emeritus Professor, Faculty of Health and Social Care, London South Bank University, London, UK 3 Principal Teaching Fellow, Division of Mental Health and Well Being, Warwick Medical School, University of Warwick, UK 4 Professor of Child and Adolescent Psychiatry, University of Exeter Medical School, University of Exeter, UK 5 Senior Clinical Research Fellow/Consultant in Child and Adolescent Psychiatry, Faculty of Medicine, Imperial College London, UK 6 Senior Lecturer in Mental Health Services Research, Faculty of Medicine, Imperial College London, UK 7 Research Officer, Department of Childhood, Families and Health, Institute of Education, University of London, UK 8 Senior Research Fellow/Lecturer, LOROS Hospice Care for Leicester, Leicestershire and Rutland and Birmingham and Solihull Mental Health Foundation Trust, UK 9 Biostatistician, Section of Mental Health, Division of Population Health Sciences and Education, St. George’s, University of London, UK 10 Professor/Head of Division of Mental Health and Well Being, Warwick Medical School, University of Warwick, UK 2
Background Studies investigating the transition between child and adult mental health services (AMHS) have raised concerns over the strong likelihood of young people falling between services and ‘dropping out’ of care during this critical time.1 Transition management that promotes continuity of care is crucial, since disruption can adversely affect vulnerable young people’s health, well-being and life chances.2–4 Improvements in transitional care have been hindered by few intervention studies looking at clinical and service outcomes,5 and by lack of focus on young people’s health care needs.3 Variable provision of transition support services, lack of clarity in access procedures, separate access policies and different funding streams have impeded transition between child and AMHS in the US.6 Similar concerns in the United Kingdom (UK)7 were articulated a decade later in the National Child and
Corresponding author: Susan McLaren, Faculty of Health and Social Care, London South Bank University, London SE10AA, UK. Email: [email protected]
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Adolescent Mental Health Services (CAMHS) Review.8 At the interface between CAMHS and AMHS challenges exist that can constitute barriers to transition and continuity of care. Historically distinct development of services for children and for adults has resulted in different ideologies, therapeutic and diagnostic focus; lack of transition protocols and procedures; failures in collaborative, interagency working; different working cultures and lack of staff support for training in young people’s health amongst adult service providers.9–12 In the UK, multi-agency mental health care is delivered by statutory providers (mainly the National Health Service (NHS), some local authority-funded education and social care provision) and a range of voluntary organisations. Based in the community, CAMHS provides both psychiatric and psycho-social care, working through statutory and voluntary providers. CAMHS provide care up to ages ranging between 16 and 18 years; some for over 16 s if in fulltime education. In contrast, most AMHS provide services for young people aged 18 years and older.13 Health and social care are integrated within most AMHS, aiming to provide continuity of care. AMHS encompass acute in patient services, and both generic and specialist Community Mental Health Teams (CMHTs). Generic CMHTs deliver a range of interventions to adults, whilst specialist teams meet needs for assertive outreach, crisis resolution/home treatment and early intervention, the last focused on individuals aged 14–35 years with first presentation of psychosis. In the UK, the National CAMHS Review identified unacceptable variations in regional and local provision for young people with mental health problems.8 Particular concerns related to services for young people with attention deficit hyperactivity disorder (ADHD) and autism spectrum disorders (ASD),14 for whom transition is complex and problematic. Young people with learning disabilities who require on-going support and psychiatric intervention may not meet the eligibility criteria for either the adult learning disability service or AMHS; multi-agency transition services are at an early stage of development and variably implemented.15 Despite policy guidance emphasising access to ageappropriate services in the UK,13,16 age related eligibility criteria have been problematic, marked by a lack of consensus on where CAMHS end and AMHS begin, and variable, often arbitrary use of age thresholds to demarcate services.9,10 Demarcation creates inflexibility,17 in that it fails to consider the developmental needs3 of young people whose lives do not follow a ‘conventional pattern’. Transition is widely accepted as critical to care continuity, yet few studies have identified which
organisational structures, resources and processes facilitate or impede successful transition between CAMHS and AMHS. Such evidence is needed to develop and evaluate specific service models which promote successful transition and to plan future service development. This study’s aim was to investigate the organisational factors that facilitate or impede the effective transition of young people from CAMHS to AMHS from the perspective of health professionals and representatives of related voluntary organisations.
Methods This paper reports findings from a qualitative study carried out between 2007 and 2009, as part of a larger multi-method investigation: ‘Transition from Child and Adolescent Mental Health Services to Adult Mental Health Services’ (TRACK).18 Components included an investigation of transition protocols, a retrospective case note survey evaluating transition and transfer processes and an exploration of users’, carers’ and professionals’ views of transition processes.19–23 Continuity of care was defined using a multi-axial definition24 comprising relational, personal, therapeutic, informational, flexible, cross-boundary/team, long term and longitudinal dimensions. Transition refers to transition of care from one health service provider (CAMHS) to another (AMHS). The term ‘threshold’ denotes a border that has to be crossed to achieve transition between services, variably influenced by upper or lower age limits, diagnosis, recent history of in-patient admission and a number of organisational factors.
Sample Thirty-four health and social care professionals were recruited from four NHS Mental Health Trusts in Greater London and the Midlands, including representatives of four local voluntary sector organisations with vital roles in multi-agency working with statutory services, providing counselling and other support for young people and parents. A purposively selected sample of equal numbers of professional staff representing AMHS and CAMHS from the two regions was intended. The final sample (Table 1) comprised 20 health and social care professionals from the London region, 10 from the Midlands and 4 voluntary organisation representatives (two per region). To assist recruitment, researchers made presentations to staff in participant organisations. Written information was supplied to all eligible to participate, requesting they contact RB by email if they wished to participate. RB finalised recruitment in accordance with the purposive sampling framework and ethical
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Table 1. Characteristics: interview participants. NHS sectors Professional Groups
CAMHS
AMHS
CAMHS & AMHS
Nurses Psychiatrists Psychologists Social workers Managers Other Total (n)
5 4 2 3 2 – 16
3 2 – 4 2 – 11
– – – – 3 – 3
arrangements for informed consent. Recruitment challenges resulted in under-representation from Midlands Trusts, where organisational restructuring was in progress.
Semi-structured interviews Pilot fieldwork and a literature review were used to develop a semi-structured interview schedule. Telephone interviews of 40–60 min duration organised for participants’ convenience were audio-recorded and transcriptions checked by RB against recordings prior to analysis. A structured thematic approach25 was used by RB systematically to code, classify and organise interview content into key themes (using QSR Nu*Dist v.6.0). These, with issues already within the interview topic guide, formed the basis of a framework for coding and grouping sub-themes into core, higher order themes based on similarity of content. This approach was independently reviewed by SM to clarify emerging sub-themes and remove overlap from the thematic framework. Preliminary findings were critically reviewed by the wider research team, reducing the number of core themes within the dataset to four. Illustrative quotes are provided to aid transparency of categorisation and theme representation. To protect anonymity, respondents are identified solely by professional and CAMHS or AMHS affiliations. Trusts are not identified due to small numbers within some professional groups. The study received ethical approval from Wandsworth Local Research Ethics Committee.
Results Two core themes are presented: eligibility issues and resources. Four sub-themes within the eligibility theme were identified (Box 1) and three resource subthemes (Box 2). Further themes concerning organisational culture and working practices are published separately.23
Voluntary sector
Total (n)
4 4
8 6 2 7 7 4 34
Core theme: Eligibility issues Lack of clarity on service availability and eligibility criteria. CAMHS and AMHS professionals desired greater clarity, information and understanding of each other’s service structures, roles and responsibilities to facilitate transition, including service availability and eligibility for referral. AMHS staff perceived the scope of CAMHS as more complex. Informational clarity was thought necessary to enable staff and young people to identify respective service contacts. Different thresholds between CAMHS and AMHS. CAMHS and AMHS staff perceived that CAMHS tended to work with a different client group in terms of the nature of a young person’s problems. CAMHS were perceived as operating thresholds for acceptance over a wider range of distress and dysfunction, encompassing low mood, relationship difficulties and self-harming. In contrast, AMHS were seen as operating ‘higher’ thresholds relating to diagnoses of serious mental illness (e.g. psychosis), forensic histories and clients requiring in-patient admissions. One CAMHS social worker expressed concerns over AMHS provision for young people during periods of relative stability following treatment. Adult services not accepting patients until 17th or 18th birthday. CAMHS staff perceived AMHS as often rigid regarding age criteria when transferring young people. Short-term priorities and caseload concerns appeared to override transition policies which, usually recommended a six-month handover period. A CAMHS nurse reported improvements in one AMHS, but only after reminders about an existing transition protocol, suggesting AMHS staff were either unaware of, or ignored, written guidance, raising questions about approaches to develop and implement protocols and their perceived practicality.
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Box 1. Eligibility issues core theme: illustrative quotes to ensure correspondence with the narrative text. Sub-theme: lack of clarity on service availability/eligibility criteria ‘Clarity over what’s expected of adult services would be helpful. There is a great deal of ignorance on the part of CAMHS as to what adult services do or might do, particularly for some of the more difficult cases, for example ADHD or ASD.’ (Psychiatrist, AMHS) ‘It does seem a bit vague to me what’s available.’ (Nurse, CAMHS) ‘. . . clarity over transfer . . . would help the service that is given to the young people because they are confused. They don’t know who they should be making contact with.’ (Social Worker, CAMHS) ‘I think it is quite hard sometimes for our workers to know who does what because there are Children in Need teams, there are Child Protection teams in the local authority, there’s Looked After Children teams, there’s a CAMHS team . . .’ (Nurse, AMHS) Sub-theme: different thresholds between CAMHS/AMHS ‘It feels sometimes the adult mental health service has a very medical, biological model so of course there is going to be a discrepancy between young people who are perhaps 16, self harming, have low mood, relationship difficulties, poor self esteem, who don’t have problem solving skills, that . . . aren’t going to meet the threshold for adult services.’ (Nurse, CAMHS) ‘Their [AMHS] work is with people who are less able to engage, needing inpatient admission, have possible forensic histories, severe social histories rather than people who are well settled and treatment compliant.’ (Social Worker, CAMHS) Sub-theme: adult services not accepting patients until 17th/18th birthday ‘Their criteria is 18 and they’ll go from 18. It’s just a very rigid interpretation because it protects them. I’ve had experiences with the adult teams where I’ve phoned up a month before somebody’s 18th and they won’t even set a CPA date...’ (Nurse, CAMHS) ‘I think it would probably be fair to say that the perception from CAMHS would be that you had to wait up until the 18th birthday . . . I think for us the bits that are quite difficult is that CAMHS want us to be involved earlier and I have to say we would bat it off a bit . . . we know we need to take them on but they are safe.’ (Nurse, AMHS) ‘This distinction between being in CAMHS or adult services or old age services, I don’t know that that’s helpful. We don’t see it as being flexible. We see people being bounced from one bit to another, with everyone trying to claim it’s someone else’s responsibility.’ (Voluntary Sector) ‘There is a transition protocol which is out of date and is being reviewed, so that might have been part of it. Sometimes you can’t even get past the CMHT secretary if the young person isn’t 18. So we had to remind them that there was a protocol and it was as relevant to them to abide by as us, but some people didn’t see it.’ (Nurse, AMHS) Sub-theme: variability in service cut-off ages ‘I think we sometimes continue working over the age of 18 . . . where there is a specific piece of work to be finished or for the cases of people who are in long-term psychotherapy . . . In an ideal world, the transition should not be made at 18, they should at least be 21 or 25.’ (Psychiatrist, CAMHS) ‘There’s [named voluntary organisation] . . . they will take our clients up to 23 I think, because they accept that they’re vulnerable and therefore the normal age cut-off doesn’t apply.’ (Psychologist, AMHS) ‘I think we’re to some degree governed by children’s legislation . . . beyond that we need to draw a line between child and adult services and it may be an arbitrary line, but 18 is as good a line as any. It’s a blunt instrument and it’s not needs led, but that’s where we are.’ (Trust Manager, CAMHS & AMHS)
Variability in service cut-off ages. Many staff referred to the variability in service age limits affecting decisions on where to transfer young people, resulting in a need to work across service boundaries where shared care was required. In some cases, CAMHS continued working with a young person beyond their upper age limit when deemed necessary. In contrast, the voluntary sector, routinely worked across much broader age ranges. Both services recognised that finding an appropriate age range was difficult, since current age limits were often arbitrary or defined partly by legislation. Professionals also acknowledged differences between legal designations of adulthood and service user maturity, which impacted on young people’s ability to discuss their needs and engage proactively with AMHS. Proactive engagement was a particular concern for young people with learning disabilities.
Core theme: Resources Adult service workloads. AMHS staff perceived high caseloads, due to inadequate staffing as a major transition barrier: causes were not identified, but smaller caseloads were suggested as a remedy. Early intervention teams reported smaller caseloads than general CMHTs, although these also struggled to cope with CAMHS demand due to lack of staff, which were reported to be substantially below national guidelines in some Trusts. Lengthy waiting lists for CAMHS referrals and, in an attempt to accelerate the transition process, instigation of simultaneous referral to both early intervention services and CMHTs resulted. Efforts to cope with staff shortages led to a rigid interpretation of eligibility criteria, raising concerns over shifting pressures to other parts of the service.
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Box 2. Resources core theme illustrative quotes. Sub-theme: adult service workloads ‘If we had smaller case loads I do think that would help.’ (Nurse, AMHS) ‘I don’t know what the CMHT case loads are now but I think they’re around 20/25 and ours are 15 maximum.’ (Psychologist, AMHS) ‘We are about a third the size we should be for the population we cover . . . Consequently we have quite an extensive waiting list which isn’t ideal for an early intervention service.’ (Social Worker, AMHS) ‘That lack of people then results in a threshold being placed at a higher level, or being less able to engage with work within adult services for young people with a relatively low level of need . . . preventing them from needing further help down the line at points of crisis through self-harm, substance misuse . . .’ (Psychologist, CAMHS) Sub-theme: adult services not meeting needs beyond severe and enduring mental illness ‘. . . the criteria are really so tight that it only meets the needs of a very small group of chronic and enduring illness.’ (Psychiatrist, CAMHS) ‘. . . if somebody didn’t meet the criteria of either of those services . . . the only thing that we really have to offer is to go back to the GP.’ (Nurse, CAMHS) ‘. . . 15, 16, 17 year olds, with some kind of early onset psychosis, who seem to be falling through the net. Because CAMHS tend not to work with people who are psychotic...’ (Voluntary Sector) Sub-theme: learning difficulties/ADHD/autism spectrum disorders ‘We have . . . between 350 and 400 cases of ADHD and with that population 50% of them will have had ADHD after the age of 16 . . . it would be good if there was a service to be provided.’ (Psychiatrist, CAMHS) ‘We’re currently developing services with children with learning disability which is something that wasn’t provided as well as we could have . . . we currently don’t have the specialist skills in our adult service to treat people with those needs.’ (Trust Manager, CAMHS & AMHS) ‘The [named] Autism Support Service has an outreach worker who goes into schools and helps the class teachers. ADHD needs something like that.’ (Voluntary Sector)
In addition to longer-term resource implications, young people who failed to transfer smoothly from CAMHS were considered more likely to re-engage with adult services on an unplanned basis in future crises. Adult services not meeting needs beyond severe and enduring mental illness. Participants highlighted a range of resource gaps, with AMHS providing a narrower service range than CAMHS, resulting in concerns that, except for diagnoses of severe and enduring mental illness (e.g. psychosis), individuals’ needs were not being met. Increasing demand for services arising from emotional difficulties and emerging personality disorders did not always fit with criteria for AMHS referral. Where transfer to AMHS was not possible or appropriate, case management strategies included leaving young people with CAMHS for as long as possible. Alternatives were return the young person to the care of a general practitioner (GP) (who might not prescribe treatments), or in some Trusts, signposting to voluntary sector counselling services, where these existed and were appropriate. However, a voluntary service participant raised concerns that young people with early onset psychosis were still ‘slipping through the net’ because some CAMHS tended not to make this diagnosis. Learning disability/ADHD/ASD. The most frequently mentioned resource gap was a lack of AMHS provision for
young people with developmental disorders, particularly ADHD and ASD. Clinicians and representatives of voluntary organisations saw this as a growing area of demand, which some estimated at approximately half those on case books after 16 years of age. This service gap was perceived to harm transition, resulting in some young people travelling significant distances to access voluntary sector support groups. Some Trusts had identified this gap and were discussing how best to deliver services, possibly within primary care. Others were developing services for young people and adults with ADHD and learning disability, noting that AMHS professionals needed to develop skills and confidence in managing this group. Some voluntary organisations were a potential source of expertise in managing such disorders and a support for desperate parents. A need was emphasized for outreach services to provide support in schools for young people with ADHD, echoed in one Trust where statutory service staff reported the loss of funding for a transition/outreach worker post focused on ADHD and learning difficulties.
Discussion This exploration of organisational factors influencing the process of transition for young people moving between CAMHS and AMHS revealed that differing eligibility criteria, underpinned by a perceived lack of
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resources, impacted negatively on transition and continuity of care. Few factors, with the exception of school outreach/transition workers for ASD/ADHD, were identified as having a positive impact on transition, despite specifically asking interview participants to ‘‘identify factors which assist transition.’’ Furthermore, no participants identified the development or use of integrated care pathways which could assist transition between services. Limitations of this study include under-representation both of Trusts from the Midlands region and of psychologists. Organisational and service restructuring in the Midlands Trusts, resulting in service disruption may explain the lower level of recruitment. Findings reflect perceptions, experiences and working practices of health professionals and representatives of voluntary organisations; the experiences of service users, carers and other factors influencing transition are reported elsewhere.19–21 Professionals in both services lacked clarity, information and understanding about each other’s service structures, availability and eligibility criteria, reinforcing concerns about the complexity of the CAMHS– AMHS interface, requiring professionals co-ordinating transition to navigate multiple tiers and service levels.9 Other TRACK findings suggest this is part of a wider problem, relating to differences in organisational cultures, communication and working practices.23 For example, no comprehensive map of CAMHS services was available in London19 at the time of data collection. This lack of mutual understanding of services, structures and availability of information raises questions about their impact on communication, and informational and cross-boundary continuity of care. There were differing thresholds relating to age and medical diagnosis between CAMHS and AMHS, which could hinder the transition process by creating barriers to flexible, long term and cross-boundary continuity of care. Concerns about transferring young people in a stable state to AMHS suggest that for some these barriers may be compounded. Overall, perceptions of staff and voluntary sector workers were that AMHS were not meeting the needs of young people beyond those with chronic, serious and enduring conditions. Others with neurodevelopmental or complex and often multiple problems, including self-harming, depression, ADHD, ASD and learning disability who could not be transferred, resulted either in their retention by CAMHS until early adulthood, return to the care of their GP or reliance on voluntary sector support, which were not always considered appropriate or adequate alternatives. This reinforces wider TRACK findings that a history of severe mental illness and taking medication were significant predictors of transition19 and omission of information in transition protocols
on procedures to achieve continuity of care for young people not accepted by AMHS.19 Perceived staff shortages and high CMHT workloads reported in AMHS explained some of the barriers to transition. Negative effects of staff shortages in AMHS on relational, cross-boundary and longitudinal continuity of care were also identified in the UK ECHO study.26 However, it was not clear in our findings what had led to staff shortages. Whilst linkage of Autism Support Services with schools outreach was a positive development, negative findings that some AMHS staff lacked skills in caring for young people with ADHD and learning disability could be addressed by training and the creation of youth mental health teams. The situation reported here is unacceptable and does not achieve the standards embodied in policy guidance16,13 since it is marked by discontinuities and inequalities. Policy makers, commissioners, service providers and service users should question and address whether the focus of AMHS’ resources on a narrow range of conditions, so that only people with the most severe forms of mental illness are eligible for care, is ethical or justifiable. Policy makers, service commissioners and providers should take into account that current AMHS and CAMHS commissioning processes differ. Transition is a policy priority for both,27 however, our findings show that CAMHS and AMHS recognise people with differing categories and levels of severity and chronicity of mental health difficulties/disorders/illnesses. Any convergence between the categories of mental health problems considered to be within the remit of both CAMHS and AMHS would require respective service commissioners and providers to agree joint priorities. We should not assume that all young adults’ mental health needs are best met by AMHS, as other types of service, e.g. primary care-, education- or third sector-based services, may be more accessible and acceptable. Implementation of the Health and Social Care Act28 in England will determine which care pathways are funded, offering an opportunity to rethink the strategy, resources and funding model for transitional care. Alternative models have been implemented with some success, based on transition services and shared management frameworks.4 In other long-term conditions, appointment of transition co-ordinators who work across both child and adult services can achieve positive outcomes for services and young people.5
Conclusions Mutual lack of understanding of services and structures together with restrictive eligibility criteria exacerbated by perceived lack of resources can impact negatively on
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the transition between CAMHS and AMHS, disrupt continuity of care, and create inequalities in service access and provision. Updated, shared service mapping, collaborative CAMHS–AMHS revision of transition protocols to stress flexibility in age ranges and diagnostic criteria, together with the development of services for young people with ADHD, ASD and learning disabilities are essential to avoid young people slipping through the large and increasingly unacceptable gaps in the transitional care ‘net’.
9.
10.
11.
12.
Acknowledgments The TRACK study team included Swaran Singh, Ruth Belling, Jenny Dale, Navina Evans, Tamsin Ford, Nicole Fung, Katherine Harley, Daniel Hayes, Kimberley Hovish, Zoebia Islam, Bob Jezzard, Tami Kramer, Susan McLaren, Moli Paul, Anne Rourke, Tim Weaver and Sarah White. Our grateful thanks to the managers, clinical staff and representatives of voluntary organizations who took part in interviews for this study.
13.
14.
Funding The TRACK study was funded by the National Institute of Health Research (NIHR) Service and Delivery Organisation (SDO) programme (www.sdo.nihr.ac.uk). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR SDO programme or the Department of Health.
References
15.
16.
1. Harpaz Rotem I, Leslie D and Rosenheck RA. Treatment retention among children entering a new episode of mental health care. Psychiatr Serv 2004; 55: 1022–1028. 2. American Academy of Paediatrics, American Academy of Family Physicians, American College of PhysiciansAmerican Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Paediatrics 2002; 110: 1304–1306. 3. McGorry PD. The specialist youth mental health model: strengthening the weakest link in the public mental health system. Med J Aust 2007; 187(suppl 7): S53–S56. 4. Vloet M, Davidson S and Capelli M. We suffer from being lost: reformulating policies to reclaim youth in mental health transitions. Healthcare Q 2011; 14: 32–38. 5. Crawley R, Wolfe I and Lock K. Improving the transition between paediatric and child healthcare: a systematic review. Arch Dis Child 2011; 96: 548–553. 6. Davis M, Geller JL and Hunt B. Within-state availability of transition to adult services for youths with serious mental health conditions. Psychiatr Serv 2006; 57: 1594–1599. 7. Audit Commission. Children in mind. London: Audit Commission, 1999. 8. National CAMHS Review. Children and young people in mind: the final report of the National CAMHS Review.
17.
18.
19.
20.
21.
22.
Department for Children, Schools and Families and Department of Health, 2008. Treasure J, Schmidt U and Hugo P. Mind the gap: transition and interface problems for patients with eating disorders. Br J Psychiatry 2005; 167: 398–400. Singh SP, Evans N, Sireling L, et al. Mind the gap: the interface between child and adult mental health services. Psychiatr Bull 2005; 29: 292–294. Singh SP. Transitions of care from child to adult mental health services: the great divide. Curr Opin Psychiat 2009; 22: 386–390. Davis M, Green M and Hoffman C. The service system obstacle course for transition-age youth and young adults. In: Clark HB and Unruh D (eds) Transition of youth and young adults with emotional and behavioural difficulties: an evidence based handbook. Baltimore: Paul H Brooks & Co Publishers, 2009. Department of Health. Transition: moving on well. A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability. London: Department of Health, 2008. Nutt DJ, Fone K, Asherson P, et al. Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: recommendations from the British Association for Psychopharmacology. J Psychopharmacol 2006; 21: 10–41. Department of Health. Models of multi-agency services for transition for disabled young people and those with complex health needs: impact and costs. London: Department of Health Policy Research Programme, Social Policy Research Unit, 2010. Department of Health. National service framework for children, young people and maternity services. London: Department of Health, 2004. Social Exclusion Unit. Transitions: young adults with complex needs. London: Office of the Deputy Prime Minister, 2005. Singh SP, Paul M, Islam Z, et al. Transition from CAMHS to adult mental health services: a study of service organisation, policies, process, user and carer perspectives. NETSCC. SDO Project Reference 08/1613/117, 2009. Singh SP, Paul M, Ford T, et al. Transitions of care from child and adolescent mental health services to adult mental health services (TRACK study): a study of protocols in Greater London. BMC Health Serv Res 2008; 8(135). DOI: 10.1186/1472-6963-8-135. Singh SP, Paul M, Ford T, et al. Process, outcome and experience of transition from child to adult mental healthcare: a multi-perspective study. Br J Psychiatry 2010; 197: 305–312. Hovish K, Weaver T, Islam Z, et al. Transition experiences of mental health service users, parents and professionals in the United Kingdom: a qualitative study. Psychiatr Rehabil J 2012; 35: 251–257. Paul M, Ford T, Kramer T, et al. TRACK: transfers and transitions between child and adolescent and adult mental health services. Br J Psychiatry 2013; 202: s36–s40.
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23. McLaren S, Belling R, Paul M, et al. ‘Talking a different language’: an exploration of the influence of organisational cultures and working practices on transition from child to adult mental health services. BMC Health Serv Res 2013; 13: 254. 24. Freeman G, Weaver T, Low J, et al. Promoting continuity of care for people with severe mental illness whose needs span primary, secondary and social care: a multi-method investigation of relevant mechanisms and contexts. Report for the NCCSDO. London: NCCSDO, 2002. 25. Ritchie J and Spencer L. Qualitative data analysis for applied policy research. In: Bryman A and Burgess R (eds) Analysing qualitative data. London: Routledge, 1994.
26. Burns T, Catty J, Clement S, et al. Experiences of continuity of care and health and social care outcomes: the ECHO Study. Report for the NCCSDO, London, 2007. 27. Joint Commissioning Panel for Mental Health. Guidance for commissioners of mental health services for young people making the transition from child and adolescent to adult services. 2012. http://www.rcpsych.ac.uk/pdf/ JCP-MH%20CAMHS%20transitions%20%28March %202012%29.pdf 28. Health and Social Care Act. http://www.legislation. gov.uk/ukpga/2012/7/pdfs/ukpga_20120007_en.pdf (2012, accessed 23 January 2013).
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