Downright Special

Downright Special were awarded £5517 which they received in January 2021. This went towards the costs of establishing a locally based Health Lead and as a result, they were able to recruit a Learning Disability Nurse to the team on a part-time basis. Though initially a temporary post, it has now been made  permanent following receipt of the funding from Help for Health.

This new role within the charity aims to improve health outcomes for children and young people with Down syndrome and it has very quickly made a positive impact on families.

 Successes:

1. Creating a ‘health directory ’for children aged 0-18 months to make the local NHS Down syndrome care pathway more accessible and relevant to children of this age. The directory clarifies the appointments children should expect to have at this age, the common health issues, and details of who to contact in each service .

2. Creating a bespoke hospital passport for children with Down syndrome. This document is for parents to record a one-page summary of their child’s health needs, medical history, communication needs and any adjustments needed so that they can take it to appointments and avoid the need to retell their story over and over.

3. Working with the local Emergency Department Paediatric Consultant to set up an alert system within hospital records so that when a child with DS arrives at hospital there is a flag on their records that alerts doctors and nurses to the  in how a child with DS might display symptoms of serious illness

Other successes include helping with Covid vaccination prioritisation, linking to occupational therapy teams for aids and adaptations and signposting families to other health resources.

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