Young people say what they need from mental health services
It is critical to young people's wellbeing that any move — also called a transition — between Child and Adolescent Mental Health Services (CAMHs) and adult services is a smooth as possible.
And services work well together in an integrated, or joined up way to support them at this time of change when they are particularly vulnerable.
So we investigated young people's experiences and ideas for improving mental health transitions by helping to pilot Healthwatch England's Health and Care Experience profiles in Cambridgeshire and Peterborough.
We worked closely with local health, care and voluntary sector organisations supporting young people through mental health transitions as part of this project, sharing our findings with them.
And undertook in-depth interviews with eight people — three young people and five parent carers — with recent experience of mental health transitions.
Their feedback and our recommendations are included in the Health and Care Experience profile published here.
Health and Care Experience Profiles
This research method looks at how services are working together for people in their area, how this compares to the national picture and what health and care decision makers can do to improve care.
All the people we spoke to had felt they had had a difficult journey trying to access mental health support. Although the focus in this project was around how well services are joined up, we also found difficulties within the mental health system that were not just an issue in the transition period.
A number of common themes emerged amongst the young people and parent /carers we spoke to around things like long waits for assessments, not meeting assessment criteria and delays in being referred.
Waiting lists for CAMHs can be long even for an urgent referral. It is difficult for people to wait for help when they feel ill, and we have heard that young people have deteriorated whilst waiting, reaching crisis and going to A&E.
Young people and their families called for earlier interventions before young people reached crisis point.
“I did not feel safe and they did not take that into account whilst making me wait for services and support.”
We found that services did not always seem to be joined up very well, leaving gaps in care. And young people didn't always know where to go for help.
Three out of eight of the young people had been in-patients in CAMHs, and each reported a problem going from CAMHs to another adult mental health service.
One person with an eating-disorder had a three-month gap leaving CAMHs inpatient care until supported living accommodation was found.
It would be easier if you weren't passed from different people. GPs recommend ringing certain people and then when you ring them, they advise ringing GP. Nobody seems to know the right pathway or avenue, so you get passed allover.
Better awareness of autism
Half of the people we spoke to (four out of eight) were autistic and reported additional struggles in getting the right mental health support.
They found getting mental health support was more difficult as they needed adjustments to be made so services were accessible. And some had struggled to get an autism diagnosis.
One young person said that they had sought help for mental health difficulties for many years before they were eventually diagnosed with autism.
Two of them reported their feeling that healthcare staff lack autism awareness.
Our recent Autistic Voices report mirrors these findings.
I was under multiple doctors, Children and Adolescent Mental Health Services (CAMHS), admitted to mental health wards, attended a special school and yet I went completely under the radar.
How Covid-19 pandemic has affected care
More than half of the young people (five out of eight) told us how the pandemic had negatively affected their care, making existing delays in services worse.
This includes delays in moves between services and gaps in care, including families being left to support young people on their own, when they needed hospital care.
One person had been moved to a non-local hospital due to lack of local beds and then needed referral back into the local system. This family felt they were often chasing to find out about plans for care instead of being kept informed.
It has been harder to reach out for help during Covid-19.
What young people and their families need
- Better help in navigating the mental health system, including a Transition worker when moving between services.
- Earlier interventions for young people so they can access care before reaching crisis.
- A more person-centred approach to making sure that the therapy a young person is getting meets their needs.
- More engagement with young people to help evaluate and develop services that better meet their needs.
- Providing more training for staff to help improve awareness of young people's differing needs, such as autism and LGBTQ*+ awareness training
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More peer support for parent / carers and information on how to find it.
*Lesbian, Gay, Bi-sexual, Transgender, Queer or Questioning and other.
Tell us about your experience
Tell us about your experience of using mental health services locally and how they can better support you to manage your mental health.
What you tell us will help local NHS and care services understand how well care is working and where services need to improve.
