It is important to involve families and carers in decisions about:

• someone’s care and support (with permission of the person being cared for)
• how the services and systems they use are designed.

These are some of the things you can do to help involve families and carers:

• Make sure expenses are paid. You may be able to pay for carers too – for example, if a family member needs to pay for a paid carer for their loved one, so that the family member is able to come to the meeting.
• Don’t have meetings in the school holidays.

Involving people with complex communication support needs

Some people need tailored communication support, if their communication requirements are more complex. It is important to be led by the person, with their family, carers or supporters, to make sure they can be involved in decision making. The communication methods used should be right for the way a person understands information, and the ways they give and receive information.

People with more complex communication requirements often use alternative ways of communicating as well as, or instead of, speech. This is often called augmented and alternative communication (AAC). Find out more about AAC on the Communication Matters website.

Sue Ryder has useful resources about adapting your communication.

The Royal College of Speech and Language Therapists have resources which can help.

Where can I find out more?

• More NHS England resources about involving carers.
• Public Participation and Voice Partners Expenses Policy.
• Easy Read Public Participation and Voice Partners Expenses Policy.
• The National Network of Parent Carer Forums has information about involvement and co-production across education, health, social care and voluntary care.
• The Children and Families Act 2014 includes information about involving families.
• The SEND Code of Practice includes information about involving children and young people.
• Blog from a family carer adviser at NHS England.
• Find your local Parent Carer Forum