Our investigation is based on Jonas’ situation. Jonas had found it difficult to function at school ever since the first year of school and until his death. We have highlighted nine different layers that, together, constituted the safety net around Jonas. The report shows that the support provided was characterised by a high number of service providers, that there was little coordination between these service providers and that refusals from CAP can, in and of themselves, represent a risk.
Jonas’ parents have provided their side of the story and have described Jonas’ upbringing and the challenges he faced, especially at school. Furthermore, a number of people from the system have described their meetings with Jonas and his family and explained their attempts to provide support. Overall, this paints a picture of how an individual adolescent may have experienced his encounters with services that, neither individually nor collectively, managed to succeed in providing him with the support he needed.
A varied and cluttered help offer
The figures we have obtained show that a large proportion of children and adolescents referred to CAP are refused. The different health trusts refuse referrals to varying degrees and we cannot find any professional explanation for this variation. There is a large difference in how many children and adolescents are refused in mental healthcare compared to somatic healthcare. The figures show that it is extremely rare that children do not get an appointment in the somatic specialist health service after a referral has been made. We cannot find any reasonable explanation for this difference. The municipal services are varied and complex and there are also no good statistics on the municipalities’ contributions to the work with children and adolescents.
The investigation shows that despite there being a high focus on early intervention, there is still a risk of those who require mental healthcare not being identified. We find that there is inadequate municipal coordination and limited cooperation between the municipalities and the specialist health service. The system is organised like a relay race in which the service providers hand over tasks and recommendations to one another. There is a lack of feedback loops between service providers and service providers do not perform joint assessments throughout. There is a risk that measures are not followed up and that any changing needs are not detected. Accordingly, the safety net is not always capable of identifying those who need support.
From the investigation, we saw that various support agencies were involved without the family feeling as though Jonas actually received any support. Needs are investigated without clear objectives being set and without any follow-up measures. There is then a high risk of support becoming fragmented and inadequate. Measures must be systematically evaluated in order to assess whether there is a need for further or different types of support.
HIB finds that the priority instructions are largely diagnostic and therefore not a well-suited tool for identifying any undiagnosed mental health issues. When adolescents present with somatic complaints and functional impairment with increasing levels of absence from school and reduced contact with the GP, these could be signs of an increased need for support. There is a risk that such undiagnosed mental health issues are not adequately identified through the use of the priority instructions. We have found that local CAPs work differently to strengthen cooperation with the municipality and GPs, but there is great variation and the obligations are not clear enough.
Children and adolescents need a coherent chain of healthcare
Legislation and the rights of children and adolescents with mental health issues do not work as intended, despite the fact that both municipalities and regional health trusts have a duty of care and that the undertakings are required to organise their services effectively. The large number of governing documents, proposed models and forms of organisation paints a complex picture of this field. The diversity in governance signals results in unclear standardisation and allocation of duties. The fact that many findings are not adhered to in the services and that new measures and models are not implemented or evaluated represents a risk to patient safety.
Children and adolescents need a coherent chain of healthcare
The interaction reform and the new health communities are models that facilitate cooperation between the specialist health service and municipal health and social care services. The question is whether these solutions are sufficiently binding to strengthen children and adolescents’ right to healthcare. If children and adolescents with mental health issues are to be identified, there needs to be a clear commitment on the part of the services. The quality and standard of the services and the responsibility for providing support must be clarified.
County Governors have different approaches when conducting supervisory audits. Following Jonas’ death, the County Governor assessed only how CAP managed the referrals and the supervisory authority did not look at the entire healthcare chain. Such an approach does not contribute to the necessary standardisation.
Only a small proportion, around one per cent, of refusals for healthcare in CAP end up as appeals lodged with the County Governor. In 2019, the County Governor fully or partly upheld 40 per cent of these appeals. Such a large percentage of upheld appeals indicates that there is inadequate understanding of patient rights in the service. If the refusals that are appealed to the County Governor are representative of refusals in general, there would be reason to believe that a large number of patients receive unjustified refusals for treatment in CAP. A poor understanding of rights within the service, combined with a low re-examination rate represents a significant risk to patient safety in CAP.
Involvement of the family
Input received as part of this investigation shows that parents would like to be listened to and contribute to the process relating to referrals and treatment to a greater extent. This is also the case when an adolescent is refused treatment from CAP. A key piece of input is that service providers must listen more to the adolescents and ask what they need help with. Adolescents must be given the chance to develop trust in the adult and this requires the number of service providers around each individual to be limited. Jonas’ parents wished that there was someone who understood Jonas and was able to see what he needed.