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Fact sheet

Involving carers in planning

Why involve carers?

People performing a role usually best understand it. Talking to carers can often give you information about the services you provide that you could not get in any other way. They are your key partners and can frequently become patients themselves when unsupported. All recent legislation on health and social care emphasises the need to involve users and carers in the planning and development of services.

What should carers be involved in?


Carers should always be involved in any training on carer awareness. Carers’ experiences tend to be personal and not shared with the world. Much of what they do takes place at home. Their timetables are dictated by the needs of the person they care for and services they receive. You may think you know what they do, but it is easy to be shocked and surprised by what they can tell you about the reality of their lives. There is no better way of understanding carers than listening to them.

Carers can also usefully contribute to other forms of training where they can offer a unique perspective through their personal experiences – for instance:

  • Expert Patients Programmes
  • Person-centred planning
  • Community services


As frequent users of services, most carers have expert knowledge of both Primary Care and Hospitals, how they run and what might help them to work better from a patient and carers standpoint. Involving carers – individually and collectively - in planning for changes and new services can include their unique perspective.

This can be done by:

  1. Having a carer representative on planning groups
  2. Through Patient and Public Involvement structures
  3. Questionnaires
  4. Large scale consultations (for more information about this see Carers Speak Out)
  5. Through collective structures such as Carers’ Forums

How do we find the carers to get involved?

Your local Carers Centre or Carers Support Organisation can help you to find carers to be involved in training or planning.

Practical issues

Carers may need support to get involved. This could be:

  1. Timing and location of meetings: This can be critical to the ability of carers to attend and participate. It is usually easier for carers to be available in the middle of the working day. Ideally the venue needs to be easily accessible by car or on public transport. Many carers are on low incomes so it is helpful to offer to reimburse travel expenses.
  2. Respite care: Some carers may need to make arrangements for the person they care for to be looked after while they are at the meeting. This will generally be charged for, so it is helpful to make it clear that you will reimburse costs incurred.
  3. Support: Carers involved in planning or training appreciate having the chance to share their experiences with other carers or professionals involved with carers support. These opportunities also help carers to have a less personal and more representative approach. This can be facilitated through the local Carers Centre or Carers Support Organisation.