Soliciting stakeholders’ views on the organization of child and adolescent mental health services: a system in trouble

Numbers

Stakeholders refer to the significant discrepancy between the prevalence of mental health problems in this age bracket and the share of the total mental health budget it is entitled to. It was estimated that less than 5% of the total mental health budget is allocated to CAMHS.

Compared to the adult sector, the CAMHS is significantly underfunded: “I once calculated that only three percent of the national budget for mental health care was allocated to youth. While we are dealing with 20 to 25% of the total population”.

Buffers

A key buffer is the shortage of child psychiatrists. The profession is deemed unattractive for financial reasons and because the work is hard and stressful. Many psychiatrists choose to work in a private practice, focusing on less complicated cases (‘cherry picking’). Conversely, there is an oversupply of clinical psychologists. However, in Belgium they are not recognized as ‘health workers’ and hence not reimbursed by social security. The supply of other, perhaps less traditional types of CAMHS providers has not been well developed.

Mental illness continues to be stigmatised in our society. This has implications for the attractiveness of the profession: “Twenty years ago, we used to have much more candidates. Today there are not enough candidates to fill the training positions. I really think there is still a taboo around mental illness in our society. It is not seen as a genuine illness. People do not have the same respect for it as for a cardio-vascular disease”.

Child psychiatrists choose not to work in hospitals but to establish their own practice that focuses on not too difficult cases as it is easier and more lucrative: “Child psychiatrists don’t want to work in a hospital anymore. It is much more financially attractive to have an independent practice and to work with children that do not have too complex problems”.

The official reimbursement of clinical psychologists remains a controversial point: “There is a lack of child psychiatrists and oversupply of clinical psychologists. The fee-for-services system transfers final responsibility and financing to child psychiatrists only, with psychologists in a supporting role and being paid via the psychiatrists. This is a very hierarchic way of working that is not in accordance with the way it should actually work”.

Stock-and-flow structures

There are long waiting lists both in outpatient and residential CAMHS services. The saturation of the CAMHS system is for many stakeholders the key factor that compromises the effectiveness of the system and that contributes to its negative image. Overall, traditional outpatient, inpatient, and residential services are the center of gravity of the CAMHS system. Flexible home-based and community-based mental health services and supports that are able to provide alternatives to treatment in inpatient and residential settings have not been widely put in place. Also the lack of emergency and crisis facilities is acute. These capacity problems bounce off one another and reinforce each other.

The CAMHS system is unable to cope with demand. There are long waiting lists everywhere in the system: “I believe that the waiting lists have been the biggest problem over the last few years. Certainly in the residential facilities and in daycare centres there are few opportunities for children and adolescents to be admitted in a crisis situation. So demand increases but neither youth care nor mental health facilities have developed an appropriate response. We are not structurally organized for these crisis admissions. I think this has been the most striking observation during my whole career, which goes back for almost 30 years”.

Ambulatory services are underpowered: “What strikes me as the most acute need in the CAMHS system is the absolute shortage of outpatient services. That’s quite obvious from the long waiting lists we are coping with”.

Delays

The delays in the CAMHS system are a result of saturation of the care system, with ubiquitous waiting lists as a result (see: stock-and-flow structures, balancing feedback loops, reinforcing feedback loops).

Balancing feedback loops

The CAMHS system is under pressure. One reaction on the capacity problems is ‘passing the buck’, whereby saturated services pass on youngsters to other, more or less adequate, services. Another reaction is to implement localized initiatives to take pressure off of the system. Whilst these do help in meeting certain needs and offer opportunities for service innovation, stakeholders point out that typically these new capacities also are quickly saturated. The proliferation of these isolated initiatives, however well intended and executed, contributes to the fragmentation of services and of available financial resources. Furthermore, based on the experience of these new services quickly reaching capacity, actors in the sector are reluctant to undertake further initiatives. Thus, there are balancing loops operating at two levels. At a sectoral level, these isolated initiatives reduce the pressure on the overall system somewhat by acting as safety valves. However, they represent a temporary ‘fix’ and many contribute to the system’s inertia and resistance to reform. Furthermore, also the absence of a strong voice of an empowered family network can be considered as a balancing loop that reinforces the system’s inertia.

Isolated initiatives take pressure of the system but are quickly saturated: “If I would take on more emergencies our department would run at full capacity all the time. But as so often, once the extra capacity is there, in two months time it is saturated. Taking the responsibility entails the risk is that one attracts all the misery of the entire French region”.

Fragmentation leads to facilities being stretched thinly and being under resourced: “There are many laudable initiatives. But at a certain point all these compromises lead to a budget that is being very thinly stretched. One grants resources here and there but with a risk of fragmentation and throwing in disarray the provision of care”.

There is no patient organisation that works for and with parents of children with mental health problems: “There is no patient organisation for children and adolescents. We tried, about ten years ago, but parents don’t want to share their experiences openly with others”.

Reinforcing feedback loops

The CAMHS system is in many respects a system that is governed by reinforcing loops, steadily pushing the system away from a desirable, stable level of performance. The capacity problems reinforce one another. Stakeholders acknowledge that there is a dynamic of ‘passing the buck’ from one service to another: the lack of ambulatory capacity puts more stress on crisis facilities, which are quickly saturated and send children onwards to residential facilities where they don’t belong. This leads to inappropriate and inefficient use of the available capacity of expensive, residential facilities. In addition, the system’s ineffective response results in poor clinical and functional outcomes for both young persons and their families. These issues do not only manifest themselves within the sector of CAMHS but also in adjacent sectors such as youth care and juvenile justice.

The lack of co-ordination between first line and deeper end services leads to escalation in children’s troubles and disturbances: “The big frustration of General Practitioners is that when they send a youngster to a crisis facility, they get the message ‘there is no indication, he doesn’t fit in our group, etc. So they get them back and then later they are reluctant to send them onwards. As a result problems escalate to manifest crises and then you need the heavy residential facilities”.

Another important, exogenous reinforcing loop is an ever increasing demand from young people and their families for mental health services. This demand results from many coalescing forces operating at the level of broader society. These societal processes have not been fully elucidated in these interviews. However, stakeholders noted that the presence of mental health problems appears to be increasing and presenting problems are increasingly serious and complex.

The number of young people that rely on the CAMHS system keeps on growing: “It’s a fact that over the last couple of years there has been an increase in kids and families in suffering. That is an observation that applies across sectors: health care, youth care and juvenile justice. All these lines are saturated by the number of children faced with difficulties in their families”.

A demand-driving factor is the so-called ‘target group’ approach, whereby services are targeted to particular diagnostic groups or to particular types of problems, such as youth who have committed offenses. This is a clinical approach which distinguishes a progressively finer catalogue of mental and behavioural problems. However, categorizing and labelling these mental health challenges creates and reinforces own demand both from users and providers. This approach tends to limit services to particular priority groups and constrains the availability of help to the entire group of young persons needing mental health care and their families. Furthermore, the institutional response leads to greater fragmentation in the service landscape.

A clinically informed target group policy creates its own demand and sometimes assessments are tweaked in order to squeeze youngsters in a category where there is spare capacity: “There are, for instance, separate care circuits for kids with delinquent behaviour, autism or ADHD. For all other kids there is no dedicated support. So if you want to get help, you have to behave like a criminal, or an autist or a person with ADHD. The result is that the number of ADHD and autism diagnoses is rapidly increasing”.

Lack of attention to cultural and linguistic differences among the communities in Belgium also leads to variable service delivery across the country and inappropriate services for each group. Disparities in access to and in the quality of care are experienced as a continuing problem for the CAMHS system.

Lack of attention to cultural and linguistic differences among the communities in Belgium also leads to variable service delivery across the country and inappropriate services for each group: “We are probably the only bi-lingual hospital in Brussels. French-speaking hospitals are having a hard time with Dutch-speaking patients. I really dream of small facilities (‘cells’), dispersed in the city and where people are always taken care of, adequate resources are present and both languages are spoken”.

By their very existence, waiting lists spur demand. People, being aware of the bottlenecks, often register at several entry points at once hoping to get quicker access quickly inflating waiting lists beyond realistic proportions. Some stakeholders think that a centralised registration system for children entering the care system might create much needed transparency and more organized pathways to care. Care needs to be taken that information management tools do not lead to stigmatization as an unintended consequence.

The existence of waiting lists leads people to demand-inflating strategies to access the system: “The waiting lists are relative. The debate is too linear, as if the numbers represent reality whilst everyone knows that people put their kids on the list in four institutions to play it safely. The absence of a central registration point implies that it is difficult to put in a place an effective policy to deal with that situation”.

Information flows

The fragmentation of the CAMHS system is reflected in a lack of structured and co-ordinated information flows between the actors in the system, and between the sector and adjacent areas of youth services. The compartmentalization also affects informal networks within and across sectors. An important missing element is a reliable assessment of what the regionally-based demand for CAMHS services is.

Lack of a centralised registration system: “If you want to respect the rights of children, you have to make sure that facilities can continue to pursue an ‘open door’ policy, that systems are not saturated by insistent searchers that are always trying to find a new access point. In Holland you can have a ticket for an ADHD-investigation. But if that has been done you can’t reapply for a period of three years”.

Rules

Stakeholders point out that the hospital-centric CAMHS system is governed by an elaborate regulatory framework that governs financing, the exercising of the medical and other mental health professions across disciplines, the management of a vast and costly infrastructure to support these services, and the rights and duties of patients and mental health and legal professionals respectively. This elaborate system of rules is not centrally administrated but rather is fragmented across different institutional levels (federal, regional and local) and sectors (mental health, youth care, education, juvenile justice). This leads to complexity, compartmentalization, and a desire of influential actors to maintain to the status quo. In particular, stakeholders singled out the basic datum that the majority of financial resources are allocated to beds (i.e. residential facilities managed by psychiatric hospitals). Maintaining the ‘bed’ as the pivotal element of a mental health care system significantly constrains the system’s ability to evolve towards a more integrated and effective approach to service delivery.

Hospital-linked resources are not flexibly allocated because of norms and regulation: “Nowadays hospitals keep thinking in terms of units, the staffing ratios and the money that is associated with that. They hesitate to allocate that budget outside of the hospital, also out of fear of being reprimanded by inspection authorities”.

Policy making is hampered by the absence of a transparent evaluation framework. Evaluation methods are either non-existent or inappropriate, adding to the administrative burden of practitioners and constraining the ability for data-informed decision making and continuous quality improvement at both the system and service delivery levels. Particularly the Minimal Psychiatric Data Set is singled out as missing the mark.

There is a lack of appropriate evaluation methods: “We have been doing the Minimal Psychiatric Data Set for 10 years and it has absolutely no added value. It takes me a quarter of my time as a psychiatrist to fill that into the computer which crashes 75% of the time because their software is not very stable. We’ve been entering these data and nobody has been able to tell us at the 10th anniversary of the system, what was being done with them. Nobody has published anything which could help us to focus our work”.

There is no assessment of the overall effectiveness of the existing CAMHS system: “There is very little research on the effects of CAMHS services offered. Children arrive at the cabinet of someone who calls himself a therapist. He or she does something with the child, or not. Does anything change? As far as we know the effectiveness of the system is zero. In the best of cases it’s as effective as the placebo effect”.

Self-organization

The capacity of a system to self-organize is its capacity to learn and to adjust its structure and operation in response to outside disturbances or internal stresses. One of the most conspicuous features of the Belgian CAMHS system as pointed out by the respondents is its level of fragmentation and compartmentalization. This makes it difficult for users and professionals to navigate the system, to exchange information and to develop a shared vision of purpose and governance of the system. The result is that the system generally lacks the capability of adjusting to changing conditions. The CAMHS system’s compartmentalization is to a significant extent determined by institutional factors and by legacy infrastructures and vested interests.

The growing differentiation in mental and behavioral problems leads to institutional fragmentation which is harder to govern and co-ordinate: “At the end of the day you are sitting with sixteen professionals around one child. And you have constantly groups that are making a case that something has to happen around a certain facet of the problem. That’s a problem of clustering. And the increasing regulation implies that people are keeping an eye on what they don’t have to do. One organisation says: we are focusing on very small children. Others specialise in teenagers. There are centers for drugs, for traumapathology. The field is further parcelled out. But who is steering this centrally? Who is evaluating all these partial contributions?”

Goals

The goal of a CAMHS system entails three key dimensions: scope, developmental perspective and target or population based approach. Is the scope of the system focused on the child only or on the child, family and relevant social environment? Several stakeholders said that the existing system is too centered on the child in isolation without consideration of the family and the environmental context in which the child functions (i.e., school and community).

The system is too child-centered and does not focus enough on its social environment, particularly the family: “Take a classic example. A child has a cognitive disharmony. Doesn’t feel well at school. There are learning difficulties. Small emotional problems develop into relational problems. Nowadays parents don’t know how to handle a normal child, much less a child with complications. And there psychiatrists need to accept to work a little more ‘orthopedagogically’ with a family. Because one loses a lot of time with very child-focused treatments whilst disregarding the psycho-educational context with the family”.

The developmental perspective concerns the fact that the needs and challenges of young persons evolve as they move from early childhood to young adulthood. To what extent is a mental health care system willing and able to adapt interventions to different stages of the developmental spectrum (specifically to young children and their families and to youth in transition to adulthood)? Stakeholders saw too few services that take this temporal perspective into account.

There is very little in terms of initiatives or infrastructures that take into account a developmental perspective: “In my experience care models need to take into account age brackets of about 6 years: 0–6 covers the question of development, 3–9 is the question of learning, 6–12 is childhood and hence the issue of the relationship to the parents, 9–15 is puberty and the management of sexuality, of the paternal function, the process of positioning with respect to the law, of respecting the collective, to live together. Then there is 12–18 years old. Most adolescent services focus on this age bracket. I continue: 15–21 is the period of orientation, life choices, partner choice, etc. And 18–24 is the category of ‘young adults old adolescents’. These age brackets have to be served by specific projects. But I see very few of these specific projects”.

A third key choice revolves around the distinction between a ‘target group’ approach versus a ‘population approach’ that sees the improvement of the psychosocial skills of all children (those with and without mental health problems). They pointed out the need for a balance between serving young persons with diagnosable disorders and a broader ‘public health approach’ that also includes strategies for mental health promotion, prevention of disorders, and early identification and intervention in addition to treatment for young persons with identified mental health conditions and their families.

At this stage much of CAMHS is driven by a clinically-oriented target group approach. A population-oriented model investing in the general wellbeing of all children is more appropriate. A clinical approach can be grafted onto this population approach but should not be leading: “In the population paradigm, approaches are deployed to support the whole population. For children this boils down to air, nutrition and education. We can’t do very much about genetic predisposition, maybe for the better. We can do something about those contextual factors. Another thing is: make people stronger instead of more dependent. The clinical model makes people dependent. Don’t pollute schools with the clinical model. If kids are difficult to handle at school, make teachers stronger to deal with that situation. Don’t immediately think ADHD. If nothing works and it breaks down, than a clinical intervention maybe appropriate. Also I don’t believe in the effectiveness of screening. It is too aspecific and the risk for false positives or false negatives is too large”.

From a policy standpoint, there is no clear, agreed-upon goal for the CAMHS system. Without being anchored in a clear understanding of its goals, the system is driven by the interests of institutions instead of the needs of young persons and their families. Given the lack of clearly defined goals, there is also a lack of clearly defined desired outcomes for the CAMHS system to be used to design the system and to deliver the services and supports needed for achievement of the specified outcomes.

There is no overarching, inclusive model of the CAMHS and youth care sectors to guide policy: “Why is child-abuse relegated to youth care but when it leads to unpleasant consequences it becomes child psychiatry? At government level there is no inclusive model. This is an essential paradox: how can you expect to come to an integrated model when the management does not happen from an integrated model?”

Paradigms

The shape of the CAMHS system is a reflection of fundamental views held by the medical profession (and by extension by the entire society). There seems to be a consensus that children cannot be considered as ‘little adults’. The concept of mental health for this group needs to be refined and made explicit and taken as the basis for a care system. On the other hand medical professionals have a hard time considering children and adolescents as stakeholders regarding their own troubles, and hence as partners and co-creators of their own care trajectory. The existing CAMHS system is traversed by the idea of guilt (of parents, of society vis-à-vis children) and victimhood. It would be more appropriate to relinquish these notions in favour of a concept of responsabilization, in which a social collective takes charge of a process of resilience, healing, and improved functioning. Finally, the fundamental right of all children and families to effective services and supports and to drive their own care is seldom taken as a cornerstone of a health care system.

Children are not ‘little adults’. They have specific developmental needs. The concept of children’s mental health needs to be clarified and taken as a cornerstone for a care system: “Children are not little adults. There is the dimension of development. The way a child perceives the world is very different. Acting as if children are adults is doing them a disservice”.

The rights of children should be a foundational element in determining the kind of care system that ought to be developed; children and their families ought to be in the driving seat, not the care infrastructure: “The Convention on the Rights of the Child has to play an important role. This says that each child needs to be offered a comparable level of care, whatever the circumstances. That is not the case in our care system. That is a consequence of this target group approach. Respect for the Convention means that children are not prematurely put into target group but that they are guaranteed that their development will be put in a broad perspective”.