What is Parent Carer Participation?

Parent carer participation is when parent carers get involved in service planning and decision making so that services meet the needs of their families and resources are not wasted on services which parents and families do not want or work.

Effective parent participation happens when parents have conversations with and work alongside professionals, in order to design, develop and improve services. Working with parents and carers helps professionals to understand what needs to happen to create services that meet families’ needs and also helps parents and carers understand the complexity involved and the challenges faced by the professionals who have to bring about that change. Working together and sharing knowledge enables parents and professionals to find solutions that work.

When parent carers are working in full and equal partnership with professionals it is called co-production. Click here to find out more about the 'Ladder of Participation’.  Further information on co-production is available on the links below; 


All parent carers need to be provided with relevant and timely information which helps them access the services and support they need to care for their disabled children. The better informed parents are, the more confident they are and the more able to make informed choices for their children.

Consultation is a step up from simply giving information as it requires two way communication. Professionals may consult with parents on existing services, to seek their opinions on how services can be improved or how good practice could be replicated elsewhere.

Another reason for consultation could be when changes to services are planned. In this instance as many parents as possible should be informed about proposed changes to a service and invited to give their ideas and raise any concerns about the proposals before final decisions are made.

Consultation is a two way communication. The people carrying out the consultation need to reply to parents’ responses, setting out clearly what has changed as a result of parent feedback and where it has not been possible to make changes, explaining why. If they fail to do this then parents will become disillusioned with the consultation process and will not be motivated to respond in future consultations.

Many parents do not have the time or choose not to get involved in full participation. However, all parents have opinions about the services their children receive. 

Parent participation is a significant step up and requires real commitment from parents and professionals. Informed and empowered parents are enabled to become actively involved in service planning and decision making. Professionals are given the opportunity to draw on the unique skills and expertise which parents can offer. This can make a significant difference to the effectiveness and appropriateness of services. Services which have been designed taking into account all perspectives, including parents, are inevitably more effective and resources are not wasted on services which parents and families do not take up or value.

Full parent carer participation should result in Co-Production.  This is where all team members together agree outcomes, co-produce recommendations, plans, actions and materials as a collective.