National picture

National research highlights that:

Many young people are not referred on to adult mental health services from children and young people’s mental health services, despite having an ongoing mental health need. Young people with neurodevelopmental conditions, emerging personality disorders, and depression or anxiety are more likely to ‘fall through the gaps’ between services (National Collaborating Centre for Mental Health, 2023).
Many young people have a poor experience of transition (Healthcare Safety Investigation Branch, 2018), including overly quick transitions, lack of transition planning (Hunn & Clarke, 2022) and disruptions to care (Cambridgeshire and Peterborough Integrated Care System, 2022f). It has been estimated that just 4 to 13% of young people have a transition meeting all four criteria for optimal transition (defined as continuity of care, a period of joint working between child and adult mental health services, at least one transition planning meeting, and information transfer between services) (Appleton et al., 2019).
Up to half of young people who do transition later disengage from adult services (Care Quality Commission, 2018c). This can lead young adults to later present to services with a greater level of need or when in mental health crisis (Healthcare Safety Investigation Branch, 2018). National data shows that 1 in 20 young adults (aged 17 to 23) with a mental health condition have sought support with their mental health from accident and emergency departments (NHS Digital, 2022).

Why does this happen?

Some young people who have received care from children and young people’s mental health services do not meet criteria for adult mental health services, which are often different (Care Quality Commission, 2018c).
There are long waiting times when being transferred to adult mental health services (Appleton et al., 2019).
Differing approaches to care between services can make it difficult to young people to adapt to adult mental health services (Appleton et al., 2019).
There can be a lack of appropriate provision and funding for young people in some areas (Appleton et al., 2019; Singh et al., 2010) .
Transitions between services under the age of 19 increase the risk associated with this time period, as this is likely to coincide with significant changes in young people’s lives (Healthcare Safety Investigation Branch, 2018). This includes moving to a new area or between short-term rental contracts, starting employment and beginning further study.

There is also a group of young adults who present to mental health services for the first time between the ages of 18 and 25. This group faces many of the same difficulties in accessing care.

What are young adult’s experiences?

Young people’s experiences of transition to adult mental health services nationally report that (Healthcare Safety Investigation Branch, 2018; Street et al., 2018):

A lack of planning can mean that transitions feel too sudden.
They often feel left out of discussions around transitions and can feel powerlessness.
A lack of information can mean that they feel worried they will be left without support. Young people report hearing contradictory messages from different clinicians and that no single person took charge of their transition planning.
Staff in adult mental health services lacked information about young people, which meant they had to re-tell their story and re-prove their need for mental health support.
They do not feel that 18 is a suitable age at which to transition to adult mental health services.
They were discharged from children and young people’s mental health services, despite not feeling ready or able to cope without support.

Similarly, parents report feeling worried about their child’s future after they had ‘fallen through the gap’ between children and young people’s mental health services and adult mental health services, and often take on a more active role in their care as a response (Appleton et al., 2021) .

Service transitions, ADHD and autism

Autistic people may face additional challenges in the transition to adulthood, such as being more likely to experience bullying and less likely to enter post-secondary education and employment (Crane, Adams, et al., 2019). Similarly, there is evidence that young adults with ADHD are more likely to face difficulties at school and experience more unstable employment (Kuriyan et al., 2013).

Transitions between children’s and adults’ mental health services have been highlighted as an issue for many young adults, at both a national and local level. National research shows that young adults with neurodevelopmental conditions are less likely to transfer into adult mental health services from child mental health services than their peers; and that there can be condition-specific barriers to service transitions, such as poor understanding of ADHD as a long-term condition (Ford, 2020). A national survey of 315 young people with ADHD found that just 6% had an optimal transition between child and adult services (Eke et al., 2020). A review of the experiences of healthcare transitions for young people with ADHD found that (Price et al., 2019):

Many young adults with ADHD described needing to overcome ‘hurdles’ to transition from child and adult services, including a lack of information and transition planning, high thresholds for adult health services and a lack of understanding about ADHD.
Traits of ADHD can make self-organisation and managing change challenging, which can exacerbate the difficulties of navigating healthcare transitions.
Being unable to access treatment and support at this age often had negative impacts on young people.

Likewise, national research involving autistic young adults highlights poor experiences of transition between child and adult mental health services, and concerns around less structured support in adult services (Cheak-Zamora and Teti, 2015; Crane, Adams, et al., 2019). One survey from 2019 found that only 1 in 4 autistic young adults who transitioned from children’s to adults’ services felt they properly supported in this process (APPGA, 2019).

References

Full list of references is included at the end of this chapter.