Improving local services – how parents make the difference

Sometimes for a parent of a deaf child, it can be frustrating to see local services not working in a way that would seem to give the best outcomes for deaf children. You may wonder how you, as a parent, can make a difference – the good news is you can.

Parents and carers have been involved with “Children’s Hearing Service Working Groups” or CHSWGs as they are usually known, since the Newborn Hearing Screening Programme was launched in 2003. These working groups bring together local professionals and services working with deaf children, alongside parents and carers, to ensure that everyone’s voice is heard and that services meet the needs of deaf children.

“I feel CHSWG is the main vehicle to change and improvements to services for my deaf child. It is positive that we are consulted on any changes, and I feel it is the one way we can make a difference” - parent representative of a local CHSWG.

Parent representatives on their CHSWG take forward the views of other parents and carers locally, as well as their own experiences, and work to improve services for deaf children and their families.

They do this work together with education and health professionals, as well as charities. These include people like audiologists, speech and language therapists, teachers of the deaf and of course, the National Deaf Children’s Society.

“Having parent involvement is absolutely vital on a CHSWG, for two reasons: The first is that only the parents see the big picture of caring for a deaf child, and only the parents see the whole child. Parents can tell you what works and what doesn't” - CHSWG parent representative in London.

Local services really value having parents there to present the side of the service that they don’t experience. Parents have a unique perspective that allows them to see how the services are all working together for deaf children. If parents are not represented on the group, that feedback simply doesn’t reach professionals.

“As a parent you are passionate and care, so when there were cuts threatened to Teacher of the Deaf services we were able to get involved and prevent that happening” - CHSWG Parent representative in the North West of England.

It doesn’t matter what your experience is, you may be the parent of a teenager who has been through the different services for years, or the parent of a newly diagnosed baby. Your views and experiences are all welcomed and valuable to the CHSWG.

Meetings usually take place about three or four times a year and you would know when they are in advance. Parent representatives are invited to contribute to the agenda of meetings alongside other members of the group.

There are a number of CHSWGs across England, Wales and Scotland without parent representatives, so there really is a great opportunity for your feedback and input to make a difference to local services. CHSWGs don’t currently operate in Northern Ireland.

You can get more information about your local CHSWG through the National Deaf Children’s Society, your council’s local offer website (in some cases). You can also ask your audiologist or teacher of the deaf as it’s likely that they, or someone they work with, will be part of the group.

“I raised two issues regarding my council’s services for deaf children at the last meeting and the chair actually commented that it was good for someone to challenge” - parent representative on their local CHSWG.

We can offer support for parents who want to get involved with their local CHSWG. For more information, visit our Children's Hearing Service Working Group page.

Parents can and do make a difference – what have you got to lose?

By Carla Rose-Hardman, a former Family Programmes and Involvement Manager.