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Let’s break the taboo and find out what helps young people on waiting lists

By Thomas Kabir

The Top 10 questions generated by the Right People, Right Questions project are a to-do list for researchers working on treatments and services for young people’s mental health. They are the most important, unanswered questions identified by children and young people, parents, teachers, mental health and social work professionals, and researchers. In other words, they are the questions that matter most to those most affected by a lack of treatment solutions and poor service delivery.

This blog post is part of a series responding to the questions. It focuses on Question 5: 

“What interventions are effective in supporting young people on Child and Adolescent Mental Health Services (CAMHS) waiting lists, to prevent further deterioration of their mental health?”

 

It is often said that patience is a virtue. This implies that good things happen when you wait a little. But what if you are ill? What if you really need help? There is no delayed benefit from being on a waiting list if you are in pain. In fact it is the opposite. While you wait for treatment your health could be steadily deteriorating.

This applies whether we are talking about mental or physical health, for children, young people or adults. For example, a recent survey conducted by the charity Young Minds found that 76% of the 2000 parents asked thought that their children’s mental health had deteriorated while waiting for support.

There is lots of information out there about the extent of waiting times for young people referred to CAMHS. In August, freedom of information requests submitted by the Health Service Journal revealed that more than 500 children and young people assessed as needing specialised support for severe disorders (in technical jargon, they needed Tier 3 support) had waited more than a year to start treatment in 2017-2018. Another key point was that “nearly half of the 11,000 young people assessed as needing care had waited more than 18 weeks”. A report by the Education Policy Institute found that in the last year, the average median waiting time was 34 days to assessment and 60 days to treatment. There was a lot of variation and maximum waiting times to assessment averaged 267 days, and to treatment, 345 days.

Waiting lists are a fact of life for just about any NHS service. Waiting lists are particularly long for CAMHS services. Things may improve if more services are available but they are unlikely to ever disappear completely. So how do you help people on a CAMHS waiting list?

The Right People, Right Questions team, who reviewed the existing research to check whether the questions submitted by the public had already been answered, were surprised to find that research has little to say about this.

Neglected topic

What we did find was more evidence that some kind of intermediate support is needed. According to a report by the Care Quality Commission published in March, one of the biggest concerns for children, young people and their guardians is “a lack of information and support while they were waiting for an appointment with mental health services”. The report described this as one of the most “common barriers to high quality care”.

So it is not just us. There is a clear need to commission research into how to help people on CAMHS waiting lists. I have a suspicion that the NHS and research funders find this a difficult matter. The topic seems to be taboo. Nobody wants to be seen to be offering an approach that may be seen as second best to the treatment and help that people are actually waiting for. But, in the meantime, people suffer.

You could argue that there are already some approaches out there that could help. The young people’s charity, Common Room, has just developed a list of self-care resources that are available on the Anna Freud Centre’s website. The webpage states that “these activities are not a substitute for seeing a mental health professional”.

We know that helping people on waiting lists is not easy. But there is the real possibility that if people are not helped or supported in the right way they might get worse. On the other hand, encouraging people to do something in preparation for a treatment might not be a bad thing. It could give people a kind of head start. What’s more, there is always the possibility that someone may not find the treatment or approach that they have been waiting for useful anyway. In such a case, it could even be that something they tried while on a waiting list could be of more use!

One thing is for sure: more needs to done. Let’s break the taboo surrounding research to help people on waiting lists. Patience is not always a virtue.

 

For more information about Right People, Right Questions, visimcpin.org/RPRQ and click on the reports. If you are a young person and are interested in getting involved in mental health research, sign up to our Young People’s Network.