Thanks to generous funding from the Leieune Clinic for Children with Down Syndrome, the Institute of Health Visiting has updated, and made ‘open access’, its Good Practice Points (GPP) for health visitors supporting children with Down’s syndrome and their families.

People with Down’s syndrome have a genetic variation. Whilst they share some common features, it must be emphasised they are all individuals with their own abilities, needs, interests and aspirations. Down’s syndrome is not a disease and people who have Down’s syndrome are not ill.

The evidence base of what families with babies and children with Down’s syndrome value from health and related services has increased in recent years and should be acted upon in the design of services including health visiting. In November 2022, the iHV submitted evidence for the Department of Health and Social Care’s Down Syndrome Act 2022 guidance: call for evidence.

Colette Lloyd, Trustee of the Lejeune Clinic for Children with Down Syndrome, says:

“It is so important that all children, including children with Down Syndrome, are given the support they need to live happy and healthy lives from an early age. Therefore, we wanted to ensure that health visitors had access to the latest information on the additional support that children with Down Syndrome benefit from. We are delighted to partner with the Institute of Health Visiting to make these Good Practice Points available to all.”

There are two GPPs in this series:

The iHV developed these resources using co-production methods, with Down’s syndrome charities and parents with lived experience. As part of our scoping, families reported a postcode lottery of support – the quality of the service that they receive, and the skills of the staff that deliver it, really does depend on where they live. These GPPs are designed to address this gap by providing a summary of evidence-based information to support quality improvement in health visiting practice.

Like all children, children with Down’s syndrome are all different and will benefit from early intervention that is personalised to their identified needs. Personalised support should be in place as soon as the early signs are detected – for Down’s syndrome, this is likely to be at the antenatal screening when a ‘high chance’ of Down’s syndrome is detected. All parents are different and will respond to the diagnosis in an individual way. It is therefore extremely important that professionals take their lead from the parents. The Good Practice Points provide guidance in the specific areas of: growth, infant feeding, child development, managing minor illnesses, tailored support, and language/ terminology, as well as signposting to other resources for babies and young children with Down’s syndrome.