About User Involvement

What is user involvement?

We use the term 'user' to describe people who use (wish to use, or have used) health and/or social care services. We do not mean all users of an organisation's services, as this may include, for example, health professionals. Some organisations prefer the terms 'patient', 'service user', 'public' or 'person affected by...'

We use the term 'carer' to cover family members, partners or friends who have some responsibility for caring for someone who uses health or social care services. We do not mean professional carers, such as home helps or personal assistants, for whom caring is a paid job.

When we talk about user involvement, we mean the active involvement of service users in a voluntary organisation, not their passive involvement as recipients of services or information. Involving is often described as doing things with or by people, rather than for or to them.

'Involvement' covers a range of activities, from consulting service users and carers abut their views or wishes, through to working in partnership with them to develop projects or services, right up to service users or carers leading projects, services or organisations.

How are users and carers involved in the work of our member organisations?

Users and carers are involved in a wide variety of activities. These include:

• Audit and evaluation - auditing and evaluating services provided by the organisation
  
• Campaigning - prioritising which campaigns an organisation will undertake, lobbying and campaigning at local and national levels
• Complaints and comments - developing and reviewing comments and complaints procedures, making comments and complaints
  
• Conferences - planning, speaking at and taking part in conferences for staff, users, carers and other stakeholders
  
• Fundraising - deciding the direction of and being involved in the implementation of fundraising
  
• Governance - through acting as trustees, or on regional or national steering groups and reference groups
  
• Media - speaking to the media, public speaking, writing testimonials.
• Outreach - making links with users from communities that may be marginalised
  
• Publications - writing, commenting on, editing and disseminating publications. This includes paper based publications as well as websites, videos and DVDs.
  
• PR and marketing - decision making about how best to promote the work of the organisation
  
• Recruitment and selection - recruiting new members of staff
  
• Research - deciding what research will be funded, overseeing the development of a project and disseminating the results, undertaking research, as well as developing and reviewing research strategy for an organisation.
• Strategy, policy and planning - developing or reviewing organisational strategies, plans and policies on a range of topics. User-involvement significantly informs our organisations' response to statutory and government-led consultations.
  
• Support - running self help and support groups, taking helpline calls, determining the direction of a helpline's work
  
• Training - training staff, users, carers, volunteers, other stakeholders
  
• User involvement - determining how to take forward user involvement in an organisation, running consultations and involvement events
  

Users and carers may also be actively involved in NHS and social care services. ­