Useful Resources

Below are some useful "top tips" for parents/carers. Over time we hope to see this section grow.

Please do feel free to tell us of any aids or top tips of your own that we may share with other parents/carers.


Downright Special Health, Social and Education Directory

There is a lot of help and support out there for families caring for a baby with Down syndrome. However, sometimes information can be hard to find and difficult to access or understand.  Sometimes information is confusing because support varies from area to area, even locally. There is a flood of information online but it can be overwhelming and hard to distinguish what is trustworthy advice.

The Hull Down syndrome Care Pathway is a road map of health provision for people with Down syndrome locally. This new Downright Special Health, Social and Education Directory presents health information from that pathway for ease of access in an age specific, need-to-know format. In addition it includes information about education, social care and support providing a holistic perspective of your whole family’s potential needs during this 0-18 month period of your child’s life. It is specific to the Hull and East Riding area. It includes contact details for all services and provides many links to local and online sources, some recommended by other parents or professionals and screened as reputable. We hope it will help you to navigate the first 18 months.

Click here for link to Downright Special Directory (0-18months)

We are already working on the next Downright Special Directory, which will be for the 18 months to 5 years age bracket. This directory will be education focussed with advice for navigating the transition to nursery and school. Whilst this is being worked on, even if your child is older, you may find some helpful information in this 0-18 month directory.


Care Pathway

NHS Hull Clinical Commissioning Group, in parternship with health and social care services in Hull have been developing a pathway for people live with Down syndrome and their familiers or carers.

Click here to access the Care Pathway from the NHS website


Useful info for EHCP

Click here for some useful info for Educational Health and Care Plans (EHCP)


Paediatric/Hospital Visits

We've developped a social story to support children visiting hospital for their paediatric review. 

Click here for Paediatric Review Supporting information


Transition Tips

Click here for Transition Tips for School Staff


Learning Disability Register - Enquiry to GP

Children with Down Syndrome should automatically placed on the Learning Disability Register. Sometimes this doesn't occur and as parents/guardians we need to reach out to our GP to determine if this is the case. A template has been produced that you can download and complete before sending to your GP.


Lending Library Now Online!

We have updated our lending library thanks to a £250 grant from HighFiver. The grant has enabled us to purchase many new books for you to borrow.

Not only that but our entire catalogue can now be viewed online. You can browse for books and resources and then request / reserve the ones that you would like to borrow.  Books can be borrowed for up to 4 weeks.

The attached file contains our lending library catalogue.  Please email to request library login details or visit to sign in.

If you have any ideas for any additional books to add to the library then please let Louise know.

Down Syndrome Awareness Week March 2024

Down Syndrome Awareness Week took place this year from the 18th of March to the 24th. This year's theme is "End the Stereotypes". Click here to find out more.


From Twitter

Friday Sessions

We're delighted to announce that our Winter sessions will continue to be face to face. We have the following dates to share.



19th 26th



10th 17th 24th

Note half term on Friday 31st, so no session on this date.



14th 21st 28th





Can't attend a session?

Please let us know if you cannot attend a session - either contact your group leader direct, or contact the office on 01482 420160 or

Friday Visitors

We regularly have visitors to our Friday sessions, whether they be healthcare professionals, friends from the community or old faces returning to have a catch up with us.