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Waiting in Line

This report explores the experiences of young people accessing mental health support from NHS Children and Young People’s Mental Health Services. It is based on semi-structured interviews carried out with young people aged 11-21.

Number of pages:

52 pages

Date published:

Introduction

In the newspapers, Parliament, and in neighbourhoods all over the country there is much more conversation and debate about children’s mental health than there used to be. We know that the proportion of young people with a mental health difficulty has increased. 4 We also know that waiting times are long and the NHS often struggles to provide support. But in this abstract debate about waiting times, investment, ‘transformation’ and even ‘crisis’, how many people really know what it is like for children and young people who are trying to get support with their mental health?

For this report, we wanted to explore this very question. Using young people’s stories, the report provides insight into what it is like for young people to access and move through NHS Children and Young People’s Mental Health Services (CYPMHS), and how mental health support can be extended to community settings to really change young people’s experiences.

It was clear from the outset that young people have very clear expectations about how services should work for them, and it is important that we listen to these in order to build an effective system of support that meets their needs. It is only by listening to young people that real change can be created - this is especially the case for mental health support services.

Successive Governments have taken steps to reform NHS CYPMHS (outlined in Table 1). More support will be made available in schools and local areas have been directed to improve access and increase investment in NHS services. These are welcome steps. However, what comes next? We need to move beyond investment and the emphasis on support in NHS and school environments and consider how to create services that children want and feel empowered to use on their own terms.

The findings of this report suggest that the answer lies in transforming how services are designed and in re-locating mental health support services in the communities where young people live and grow-up. Where services are visible, easily accessible and where decisions are not made for young people but with young people.

When interviewing young people there were two clear sets of challenges that almost all the participants talked about in one way or another. Firstly, there were challenges of stigma and of lack of knowledge. Young people spoke of how they themselves, their family, friends and neighbours often did not know what to do or how to support each other through mental ill-health.

The other challenges were centred on the services on offer. Once young people had managed to find help, they generally reported it to be slow, impersonal, frustrating, and often confusing.

We need to rise to these twin challenges. We need to help communities to support children and young people and to give them the knowledge, skills and confidence to talk about emotional well-being and mental-ill health. The potential of such a change to prevent mental ill-health could be significant.

There will still be, however, children and young people who need help and for them services clearly need to reach out from highly institutionalised settings, like the NHS and schools, and instead be present in communities so that support can be simple, empowering and timely.

This report is written to follow a young person’s journey and it closely reflects the many stories we were told. It starts by considering what it is to reach out for help and to truly understand and articulate what help and support you need before moving to look at the many challenges and barriers that children must overcome when children do try to access formal services.

Executive summary

Alex is one of the last young people we meet when doing interviews for this report. Alex has a learning disability, which was diagnosed when he started attending a special school when he was 15 years old.

Alex has also experienced significant trauma through-out his childhood. Alex was referred to NHS Children and Young People’s Mental Health Services (CYPMHS) by his school when he was 13 as he kept walking out of lessons and as a result, was constantly spending time in isolation. His school believed he had ADHD. After a long wait, Alex attended his first appointment but this was to be both his first and his final engagement with NHS CYPMHS.

Alex says he did not get on with the worker he was assigned and that he did not like the way that he was spoken to. He said he felt intimidated. When Alex reflected on this, he said that being referred to NHS CYPMHS and being assigned a specific worker felt like the choice had been taken away from him about who he spoke to and when he spoke about his difficulties. Alex also told me that he felt embarrassed to talk about his mental health. He thought that people would ‘think he is stupid’ and that he was just doing it for attention.

Further appointment letters were sent to Alex but he ignored these and refused to engage with NHS CYPMHS anymore. Eventually the letters stopped and I guess Alex was discharged from the service. This meant that Alex missed out on much needed mental health support.

At the age of 21, Alex is now receiving the support he needs through adult services. Alex believes that more needs to be done to help young people to speak out about their mental health.

Alex’s story is just one of the many stories that highlights the challenges young people face when accessing support with their mental health. We wanted to better understand these challenges and what it is like for young people like Alex to access support from NHS CYMPHS, and what needs to be done to improve the support that is on offer.

Data from the Office of the Children’s Commissioner (OCC) found that across England in 2018/20191 : 

  • 398,346 children and young people were referred to NHS CYPMHS
  • 135,430 (34%) children had their referral closed before they entered treatment
  • 74,130 (19%) children entered treatment within six weeks
  • 131,878 (33%) were still on the waiting list at the end of the year

The OCC conclude that no area in England is treating as many children as estimated as needing help. We wanted to get under the skin of these numbers to really understand what it is, beyond just capacity, affecting young people’s experiences of NHS mental health support.

Recent data from the NHS identified that one in eight 5 to 19 year olds in England have a mental health difficulty, and this is a proportion that has increased slightly over recent years. Whilst the Government has embarked on a reform programme to improve services, it is becoming increasingly clear that more work is needed to deliver the transformative change of mental health services that is required.

Like Alex, many young people think that more needs to be done to improve the mental health support that is on offer to children and young people. Mental health services need to be accessible, flexible and centred on choice. That’s why we see that mental health support for children and young people needs to move beyond schools and the NHS and be relocated into communities where young people live and grow up. It is only by listening to young people and understanding their needs can real change be delivered.

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