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 different ways to assess and treat children and young people. When "outcomes" were discussed the focus was on whether treatment A is better than treatment B, rather than on overall impact. I do not recall any discussion of what percentage of children would be "better" at end of treatment and 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 beyond and share a desire to understand more about what outcomes are being achieved in services and how we might improve them.
An emerging baseline
In November of 2016, CORC published a report on Child- and Parent-reported Outcomes and Experience from Children and Young People's Mental Health based on routinely collected data 2011-15, across England. The data available for analysis were far from perfect. Indeed, we have coined a term to describe such routine datasets as FUPS (flawed, uncertain, proximate and sparse). The data are flawed, due to missing or erroneously recorded data; uncertain, in part due to differences in the perspectives of those recording the information; proximate, in that proxies for outcome and impact are used; and sparse, in that low volumes of key subgroups limit the extent to which we can extrapolate the data. However, as one of the first large-scale analyses of routine outcomes for children with mental health problems, I believe we have a duty to consider them, as well as use this opportunity to call for better quality data.
It is my hope that this report marks a turning point for our understanding of what outcomes from specialist input we can realistically expect for children and young people with mental health issues - indeed, it has taken us a while to get here.
Of those who completed treatment with a specialist at a child and young people's mental health services between 2011 and 2015 for whom we have self-report data - amounting to just under 6,000 cases - approximately:
1 in 3 reported "recovery" (i.e. at end of treatment they did not score above threshold on any of the measures they had completed);
1 in 2 indicated reliable improvement (i.e. their scores on at least one outcome measure had improved more than could simply be accounted for by measurement error and none of their scores on any measure had deteriorated); and
1 in 10 indicated reliable deterioration (i.e. their scores on at least one measure got worse than could simply be accounted for by measurement error).
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 after having been seen by specialists and widen our conception of what services and support might look like. Rather than training professionals to simply 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 on-going difficulties even after therapy has been provided.
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.