Support to Families 

Understanding the health needs of children and adults with Down syndrome and supporting families with accessing the right health, wellbeing and care services is an important element of our work. 
 
Our Health Lead Sam is a registered Learning Disability Nurse and is on hand to support families with: 
 
Signposting and advice about which health services do what, how to make a referral (including support with referral forms) and referral criteria 
Advice about specific health issues common to Down syndrome with signposting to reputable sources of information 
Advice/support around behaviours, management of behaviours at home, sensory processing difficulties and referral to sensory service if relevant 
Advice on puberty / growing up 
Advice and support regarding sleep 
Creating health passports for a child or young person 
Creating bespoke social stories to prepare for appointments or specific issues such as growing up 
Discussion with parents with questions about additional diagnosis of, for example, autism or ADHD 
 
Sam works one day a week on Fridays and can be contacted on sam@downrightspecial.co.uk or call our office on 01482 420160. 

Down Syndrome Care Pathway 

Downright Special works in partnership with the local Integrated Care Board (ICB) and health and social care services to develop and update the local Hull Down Syndrome Care Pathway. The pathway brings together all relevant health information in one place. It aims to empower people to navigate existing services and ensure people living with Down Syndrome in Hull and East Yorkshire receive the best possible care to meet their needs. 
 
The pathway is for use by parents, carers, healthcare professionals and anyone else working with children and adults with Down syndrome. Downright Special leads the annual updates to the pathway, working with local NHS and council services to keep the information relevant and up to date. 
 
The pathway can be found here 
Care Pathway

Emergency Department Alert 

Every year we work with the Accident & Emergency department at Hull Royal Infirmary to add a Down Syndrome ‘Alert’ to each child’s electronic record. 
 
Knowing that our kids with Down syndrome are at increased risk from infection, and don't always have the same symptoms as other children who are unwell, this Alert points doctors and nurses in A&E (and across Hull Royal Infirmary) to this fact. 
 
The option to add an Alert happens once per year (in the Spring usually) so if you are haven’t already signed up, look out for the invitation email next Spring. 
Health Resources 
Check out our resources page for some downloadable health–related resources. 
Resource Centre