It is no longer acceptable for organisations to view people with intellectual disabilities as passive recipients of services; they must be seen as active partners.

Wendy Perez (UK) and Margaret Flynn (UK)

What do we mean by 'User Involvement'?

We have to think hard about what 'user involvement' really means. It means that instead of doing things yourself, you ask and you include people. Instead of telling, you consult at all times. It is not about just including people because you have to, so that you look good or because 'Valuing People' (Department of Health 2001) says so. People who use services have to be involved so we do not make a pig's ear of it. We have to ask questions about user involvement when organisations say they are doing this. When it comes to the crunch, are they really?

Background
'Valuing People' says, 'It is no longer acceptable for organisations to view people with intellectual disabilities as passive recipients of services; they must be seen as active partners.' This reflects the growing national and international interest in, and concern about, the continued exclusion of people with intellectual disabilities from participation in our communities. Listening to and involving children, young people and adults with intellectual disabilities features in legislation, policy and practice guidance across health, education and social care services. We know that consultation processes are undeveloped and little used. Research, practice and our experience confirm that consulting with and involving people are long distance goals rather than realities.

There are lots of reasons why services fail to engage with users, including: the diversity of user groups, some of which are 'impairment-specific' and not all can provide a strong voice; user groups compete for funding and survival which can get in the way of joint working; 'satisfaction surveys' are sometimes wrongly seen as a way of involving people; people's families and service personnel may say what they think people's aspirations are; and perhaps more uncomfortably, services themselves are poor at sorting their wish:

  1. to learn more about efficient, cost effective and responsive services - so that they can improve the quality, and
  2. to extend the capacity of disabled people to participate in decisions about the design, management and review of services. (Barnes and Wistow 1992)

Consultative processes can set aside what is known about how potential participants screen themselves out e.g. users respond poorly to tokenism, oppressive practices and manipulation; greater attention to the structures of participation is no guarantee of getting the processes of participation right; it takes time to change the culture of meetings to ensure their sensitivity to user involvement; involvement in decision-making at an individual level does not easily transfer to involvement at a community wide level; and if the prospect of realising improvements in service delivery is perceived to be small then people's desire for involvement is unlikely to be sustained (Grant 1997).

How do we know that user involvement is real?
If user involvement works, you get the right vibes. These are the things that should help us to make sure it is real.

Getting to know someoneas a person and finding out what they are really like. You cannot do this from case records. These blinker people into seeing only problems. It is especially important if people have communication difficulties.

Listening carefully to people matters. You do not just say 'yes.' You have to show that you are listening properly and say things that show that you have been paying attention.

Giving people time at all times. People need more than an afternoon. You cannot do it once and think 'We've done user involvement now!'

Giving people space in which to speak easily is very important. You have to be sure that people are not scared to say what they want and what they feel. You have to be careful too that what people say is not influenced by others.

Understanding is very important. You have to check with people as many times as you need to, to make sure that you are understanding what is being said.

Being careful of meanings.
This is about what words mean to different people. What might mean something to a user might mean something else to a support worker.

REFERENCES

Aitchison J, Grieg R, Hersov E, Hersov J, Perez W and Towell D (2001) Deciding together: working with people with learning disabilities to plan services and support London, CCDC, King's College London

Barnes M and Wistow G (1992) Researching User Involvement. Leeds, Nuffield Institute for Health Services Studies, University of Leeds

Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century London, the Stationery Office

Grant G (1997) Consulting to involve or consulting to empower? In P Ramcharan, G Roberts, G Grant and J Borland (Eds) Empowerment in Everyday Life: Learning Disability London, Jessica Kingsley Publishers

This article was written in 2002.