A commissioner’s guide to developing and sustaining local user-led organisations

Understanding ULOs: Carers and ULOs

Carers are people who use services too: shouldn’t they be involved in ULOs? If an organisation is run by carers does that mean it is a ULO? This section looks at the arguments that relate to carers’ involvement with ULOs.

A historical divide

The involvement of carers in ULOs is a contentious issue, and it is useful to consider some of the issues that can cause tensions between people who use services and carers. Both groups have historically felt a need to compete to have their needs and aspirations recognised, sometimes at the expense of the other. If you speak to disabled people they will often tell you that carers cannot speak for them. The interests of a disabled person and of a carer do not necessarily coincide. If you speak to carers they will say that they need access to information, advice, advocacy and peer support that is specific to them.

A shared agenda

There is growing recognition that, although disabled people and carers are likely to have different agendas on a day-to-day basis, fundamentally their interests coincide. The liberation of carers lies in the liberation of disabled people. In other words, if both carers and disabled people have choice and control over how they want to live their lives, they will both benefit.

In reality, the lives of people using support services are complex and involve not just the service user but the network of people around them, including family and informal carers. It makes sense for a ULO to include carers, either within the organisation itself (such as the Multiple Sclerosis Society model) or by working closely with a carers’ organisation.

Carer-led organisations

However, it is also important to use clear and simple language. Although ULOs should reach out to carers, calling a carers’ organisation a ULO may be confusing.  Because of this, we recommend that organisations made up mainly of people who use services are described as ULOs, and organisations made up mainly of carers are described as carer-led organisations.