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Accessible summary In this article, we shall be talking about how a group of people with learning disabilities and therapists came together to make a questionnaire about feelings. We adapted a questionnaire called Clinical Outcomes in Routine Evaluation – Outcome Measure to make a version that was useful for people with a learning disability who go to therapy for help when they are feeling particularly unhappy. We wanted to help people with a learning disability and their therapists find out if the therapy was helping. This is called practice-based evidence. The NHS now demands that all treatments can show that they work. We were all new to research, and we will describe how we developed ways of working together that meant everyone could contribute. This is called inclusive research. This was necessary because we all had different experiences that were valuable to the research and that we wanted to share. In particular, we wanted to find out how the experience of living with a learning disability affects feelings so that this could be included in the questionnaire. Inclusive working was important to make sure the questionnaire made sense and was easy to use for people with a learning disability. We will discuss how we made the questionnaire, called Clinical Outcomes in Routine Evaluation – Learning Disabilities, and how we carried out tests to find out if it was a good, reliable measure that showed how people's feelings changed over time when they received therapy. This is called psychometric testing. Finally, we summarise the results of the psychometric testing and discuss what will happen next. Summary Psychological talking therapies are increasingly being sought by people when they are experiencing emotional difficulties. This is just as important for people with a learning disability as the general population but as with other services for this population, inclusion for therapy lags behind that of mainstream services. Similarly, tools for assessing the effectiveness of therapy for people with a learning disability are often limited and do not fully take account of the impact that living with a learning disability may have on peoples' feelings and sense of well-being. It was for this reason that we, the authors of this article, a Dramatherapist and Specialist Counsellor got together with initially eight but subsequently five people with a learning disability to develop an outcome measure that would be accessible and have meaning for people with a learning disability. Clinical Outcomes in Routine Evaluation – Outcome Measure (Evans et al. J Ment Health, 2000; 32, 144; Barkham et al. 1998) was selected as the measure to be modified and developed, as it was already a validated tool, was in widespread use across the country and was suitable for use across a whole range of therapeutic approaches. This article describes how inclusive research has been a key component in developing and psychometrically testing Clinical Outcomes in Routine Evaluation – Learning Disabilities. Using an outcome measure that is sensitive to the needs of people with a learning disability is a vital step towards providing evidence upon which best practice may be established.

Accessible summary • This article is about people with a learning disability doing research with therapists. It is about how we are learning to do research together. • The research is trying to see if counselling and therapy helps people with a learning disability feel better. One way of doing this is to ask people questions about their feelings before and after counselling. • We want to have some questions about how it feels living with a learning disability. Our group is talking about this. They have made a list of what they have said. They plan to ask other people if they agree. • This research matters because people with learning disabilities are doing the research. They know what it is like living with a learning disability. They know what things that are important to them. They can help make a questionnaire that other people with learning disabilities will find easy to understand. The questionnaire should help people see how feelings can change over time. Summary People with a learning disability, the experts of their own experience are increasingly involved in research. We will be discussing in this paper their centrality in the development of a psychological therapy outcome measure for people with learning disabilities. Their involvement needs to go beyond giving their views to being included in the whole research process. It is anticipated that such participatory research will help create a measurement tool that has greater meaning and validity for people with a learning disability. We are adapting clinical outcomes in routine evaluation – outcome measure (CORE-OM) Evans et al. (2000, J Ment Health, 9, 247), the dominant psychotherapy outcome measure in routine use in the UK, for this purpose. However the existing four domains of CORE-OM (well being, problems/symptoms, functioning and risk) do not address some of the issues and feelings that impact on the lives of people with a learning disability. This we call the ‘missing domain’ and it is the focus of this present research. Within the Collaborative Research Group (CoRG) we are seeking to uncover the essential elements of this missing domain and convert them into items for a new domain. This article examines some of the issues involved in the complex interrelationship between the process of research and the outcome of research.