How will carers want to be involved?

Everybody is different, but experience shows that as a group carers might be involved in:

  • planning services
  • developing strategies
  • carer awareness training
  • Training of professionals - generally both in person and through the use of recorded material (so long as it remains relevant).


Individuals might be involved in any of the following:

  • carers forum
  • carers sub-group of local implementation team
  • joint improvement team
  • cancer and palliative care review board
  • board meeting, for example, joint health and social care
  • advocacy partnership group
  • Carers modernisation team.

They might also want to be involved in:

  • parent-carers forums
  • mental health carers forum - including acute inpatient forum
  • carers strategy group
  • multi-agency carers strategy group
  • carers sub-group of partnership board
  • health and social care improvement board
  • forums open to carers of older people, people with mental health problems, and people with learning and/or physical disability
  • Carers strategy group – including legislation working group.

Carers open day

An example of good carers involvement was when St Lukes Hospice in Harrow held a carers open day inviting both patients and carers. The open day addressed practical, legal and financial issues, as well as looking at relaxation methods and nutrition.

There were group sessions to tour the hospice which encouraged carers to ask those questions they were afraid to ask. This really broke down the barriers and St Lukes’ now regularly uses input from carers in strategic development of their services.