In December 2016, CORC published a ground-breaking report which explored the outcomes of a huge number of cases seen by CAMHS services. While the data is not perfect, having no breakdowns of different types of condition or ages of child, this report was the first time such a large amount of data of this type has been analysed. However, it is important to remember that these are not just cases. Each piece of data represents a child who has struggled, received support for this and left the service. Thus it seems fitting that this report looks at what children and young people think of the CORC report and what it means to them. This report is written by people with lived experience of using health services, and draws on discussions with a number of experts by experience. It will explain some of the themes which came up in these discussions, looking at each theme in terms of their thoughts about the current report and ideas for future action.
The data is too generalised
The first and most prevalent theme which came up in the interviews and focus group with young people was the very broad and generic nature of the research. They suggested that the lack of specificity in the data makes in difficult to use. One interesting parallel drawn was that if you were diagnosed with cancer and then informed about recovery rates and outcomes for all cancer patients this would be really unhelpful. You would want to know only about people with your type of cancer, possible those in your age bracket and gender. In the same way, CAMHS service users should have data about their specific condition before the statistics are shared with them. This is an issue which the research team are fully aware of and share concern about.
The word 'recovery' is challenging
A lot of the people we spoke to about the report had difficulty with the word recovery. There are a number of issues with this terminology. One is that many children and young people don't consider themselves to be ill when accessing CAMHS and the use of the word recovery implies that illness was present. Another issue is that recovery is different for each individual. To some children and young people, learning to cope with their condition may be considered as recovering, but this is not captured by the clinical measures of recovery used in research. The final issue is that young people who are considered to have recovered by the researchers may not consider themselves to be recovered. They may feel that they simply have better ways of managing their difficulties so that they are not bothered too much by them. Referring to them as recovered may take away from the hard work they are putting in to keeping well. The people we spoke to preferred the terms 'wellbeing', 'coping' or 'managing'.
It's hard to know whether to share the data
There were two main schools of thought in the people we spoke to about whether the data should be shared with children and young people using CAMHS. Some of the people we spoke to felt that the data should not be shared for two main reasons. One is the issue previously discussed of data being too generalised to be of help to individuals. The other issue is that children and young people want to feel like more than a statistic to their therapist, and their concern was that sharing the data might jeopardise this.
On the other hand, some of the people we spoke to felt that this data should be shared. Again, there were two main types of rationale behind this. Some people felt that sharing the data may support children and young people to feel less alone if they didn't achieve recovery, and to understand that positives can still be drawn from their time in CAMHS. Other people felt that not sharing this data is unethical, as children and their families should be aware of the effectiveness of services where this data is available. If this option is taken, thought needs to be put into how the data is shared in a way which is helpful, rather than distressing or confusing, to a young person and their family.
A qualitative view would be helpful
A number of the people we spoke to about the report suggested that the data might mean more if it could be aligned with qualitative data. Particularly for children and young people, it can be difficult to know what terms like 'reliably recovered' mean in practice. Having a qualitative case study alongside this data might help to make this clearer, which would help with understanding for children and their families and help professionals reading the report to attach meaning to the statistics.
Data may be unreliable
The people we spoke to warned that based on their own experience, the patient and parent reported outcome measures may not be reliable and valid. They said that the outcomes reported can be influenced by having a good or bad day, feelings of pressure from the professional, or reporting what they think they should be feeling. This makes it difficult to know whether the data is measuring what we think it is measuring, and whether it is measuring the same symptom reliably over time.
Overall, the experts by experience we spoke to seemed to echo many of the concerns of the original research team, in that the data is broad and may be unreliable. Their thoughts on sharing the data are something which needs to be carefully considered by the research team, taking into consideration the potential problems with each option. However, they also welcome the role of the report in beginning to explore outcomes in a meaningful way for children using CAMHS.
Many thanks to lead author Amy Feltham, Common Room Advisor, and other young people from Common Room. Together they have put together some guidance for mental health professionals to support them in explaining the report to children and young people.