A response to the experts by experience: Child- and Parent-reported Outcomes and Experience from Child and Young People’s Mental Health Services 2011–2015
CORC is committed to supporting dialogue about how we can collaborate on making the best possible use of the evidence we have - with all its flaws - to improve mental health support for children and young people, and we warmly welcome the reflections on our recent report from the young people - experts by experience - working with our partner organisation Common Room.
Miranda Wolpert addresses a number of the areas raised, particularly the challenge in use of the word 'recovery', in her recent blog and responds to discussions at our recent seminar series exploring the findings of the report. Miranda discusses a range of considerations that are in the mix in finding the best and most useful language and concepts to use in talking about recovering, improving, getting well and managing.
However there were some further points raised that we would like to address more directly.
First of all, we absolutely recognise the fact that the report's findings look across all of the children and young people that we had information about, and that this might not be specific enough to be useful for people wanting to know about outcomes for specific issues or groups. We have now begun work on some follow-up research to explore the information at a more detailed level and we will share our findings on this via our website and with the CORC network.
The second point relates to the reliability of the data. CORC aims to be open and explicit about the flawed nature of the data we have. While having a large sample does reduce the impact that individaul circumstances (e.g. an unusually bad day) have on the overall picture, we want to be clear that we are aware the sample we have does not represent all the people receiving services, and is likely to be skewed towards or away from specific groups.
We agree with the suggestion made by experts by experience that the data from outcome and experience measures be looked at alongside other types of information - such as qualitative view. This could provide a clearer, deeper understanding of what the data means and enrich the overall picture. Unfortunately qualitative work was beyond the scope of CORC's work for this report, but we would be keen to work with any colleagues who would like to take this forward. Please do get in touch with us at firstname.lastname@example.org.
Finally, we certainly agree that no one should feel they are just a statistic, or that their treatment is being determined without regard for their individual needs and preferences. At an individual level the feedback gathered through outcome questionnaires should be part of a conversation between a child or young person and the professional who is supporting them, bringing an additional perspective to clinical judgement and direct relationships. At the over-arching level, we do feel (along with some young people) that there is an ethical imperative to be open about the information we have about what people might expect in terms of improvement. The recommendations that young people have put together around how to do this in a helpful (not distressing or confusing) way are a valuable addition to the debate - we really encourage colleagues to have a look.