Why we must set realistic expectations for outcomes in child mental health
Miranda Wolpert reflects on some of the important challenges highlighted by the publication of CORC's report on Child- and Parent-reported Outcomes and Experience from Child and Young People's Mental Health
For the first time since I entered the children and young people's mental health sector more than 30 years ago, I feel like a baseline for realistic expectations of outcomes is finally starting to emerge.
As a clinician I was trained extensively in the best means to assess (formulation vs diagnosis) and treat (e.g. CBT vs Psychodynamic Therapy). When "outcomes" were discussed the focus was on differential effectiveness (i.e. treatment A is better than treatment B) rather than overall impact (i.e. x% of children treated by treatment A or B are not "better" at end of treatment). No training was provided on how to end therapy if the problems were not resolved.
As a practicing clinician, I became increasingly frustrated by not having any means of knowing if the children, young people and families I was seeing were making the best progress they could. This frustration was shared by others and was the motivation for establishing the Child Outcomes Research Consortium (CORC) over a decade ago; a learning collaboration which has grown to include the majority of those working to support the mental health of young people in England and share a desire to understand more about what outcomes are being achieved in services and how we might improve them.
What does the report mean?
Whilst it has taken a long time to get here, it is my hope that the report published today by CORC marks a turning point for out understanding of what is realistic to expect in terms of outcomes from specialist input for children and young people with mental health issues.
The findings are not what I would have predicted 30 years ago based on the assumptions I took away from my training. They do not mesh neatly with the prevalent rhetoric of "all that is needed is more specialist services". I do believe we need more services and that the right help can change lives. However, I also believe we have to be honest about the limits of what services can do given our current state of knowledge. We need to think more clearly about how we support those who are not better having been seen by specialists and widen our conception of what services and support might look like.
We have a duty to consider these findings whilst we also call for better quality data to emerge. These findings are consistent with similar, albeit smaller, recent studies in the USA and Norway. The authors of these studies describe their findings as"sobering" (Warren) and "not uplifting" (Nilsen). These comments may reflect the lack of debate in child mental health about what a realistic “recovery” or improvement rate might look like. In paediatric diabetes in England control of blood sugar has moved from nearly 15% of cases to nearly 24% of cases over the last 5 years and this is seen as a positive development. We in child mental health need to start to consider realistic targets for improvement.
Rather than training professionals to simply seek to continue with a treatment or therapy, the findings in CORC's report suggest that we should be having a conversation as a sector, as a society, about what we can and should offer to children and young people to help them more effectively manage ongoing difficulties when "recovery" simply isn't on the cards. We need to help mobilise internal and external supports in the child, and their family and community to help people build on their own strengths and achieve their goals in life, even if they do have ongoing difficulties in some areas. This might mean greater focus on the role of a range of agencies including schools and community support, to help people with ongoing difficulties and issues and a real focus on the development of external aids to foster resilience and wellbeing even where there are ongoing mental health issues.
We should be having this conversation not just as a sector but as a society. Traditional child and young people’s mental health services are going through the toughest period in their history and to assume the solution lies only with them is unrealistic. We all have a part to play, from traditional services to schools and from communities to CORC.
The role of CORC
CORC’s part is about the data, the evidence: calling for it, campaigning for it, collecting it and communicating the findings to improve practice. Our next step is to look more closely at the current data we have and which we are still collecting to understand better differences in outcomes for different populations and problems. We intend to use these data to start to create the basis for a “precision toolkit for child mental health” that can help all those seeking to support children and young people with mental health needs to more accurately determine the most effective ways forward for a given child or young person in a particular context.
Parity for child mental health
Many areas of physical health are increasingly committed to improving outcomes for patients by considering existing data (albeit flawed). If we are truly to achieve parity of esteem between mental and physical health, we need parity of data, but we also need parity of concern. As a community, those of us interested in developing best practice in child and youth mental health need to work together to review our current outcomes and work collaboratively and across sectors to achieve more effective services and means of support for children and young people and families.
This blog is written in Miranda’s capacity as CORC Director and cannot be taken to represent the views of any other organisation with which she is associated.