Down Syndrome Care Pathway
The Care Pathway was first produced in 2018 by Downright Special, families and professionals.
Produced in partnership with health and social care services, the pathway brings together all relevant health information in one place for people with Down syndrome in Hull and East Yorkshire.
It aims to empower people to navigate existing services and ensure people living with Down Syndrome receive the best possible care to meet their needs.
The pathway is now long established, updated annually in liaison with Services and re-launched.
Care Pathway Awareness GP Training Video
Downright Special, supported by Community Paediatrics have created a 15 minute video about the Hull and East Yorkshire Down Syndrome Care Pathway. The training can be accessed below so could be used in a group session such as GP Forum, lunch and learn, or individually by staff.
Use of the pathway is successfully embedded in some services e.g. Community Paediatrics and Health Visiting. Awareness of the pathway appears to be lower, and use is less consistent in primary care and this informative presentation aims to address this imbalance.
Hospital Passport
A hospital passport is a short document that you complete that can accompany your child on trips to hospital, but could also be used at any other outpatient or GP appointments. It gives some "insider info" about your child so that healthcare staff can care for them more effectively, or just to make things go more smoothly. This one has been developed by us to be focused on the needs of children with Down syndrome.
You can fill it in yourself or contact us if you would like some help with printing / laminating or with what to write in it.
Vision Postcard
As children grow they tend to be discharged from the eye hospital and access eye tests at high street opticians. This resource is intended to empower parent/carers, or young people themselves at these high street appointments, to ask whether everything important has been checked.
The image can be saved to your/their phone or tablet, then shown to the professional at the appointment. The image contains a QR code which links to some evidence based information about vision and Down Syndrome. The information may be helpful for yourselves, or for the professional to read and understand why you are asking.
LD Register Letter Template
Children with Down Syndrome should be placed on the Learning Disability Register. We advise that you check with your GP that this has happened. We have a template letter you can use if you need to write to your GP to request that your child is placed on the LD register.
Paediatric Social Story
We have a resource to help support children, young adults and parents when attending their Paediatric appointments at Hull Royal Infirmary.
It can be used as a social story to help prepare for an appointment, ensuring predictability so reducing anxiety.
It can be used during the visit to navigate through the stages of process with your loved one, making it a more fun experience they will have positive memories of. Older young people can use it themselves as an Easy-read so they can learn to become independent and confident attending appointments.
It can be used after the appointment to explain the visit and provide reassurance and praise if the child needs to process at length or show other people where they went/what happened.
It has a parent page to provide helpful information about your appointment and what to expect
It can be amended/personalised to suit your specific needs
It can be used as a hard copy laminated book, or it can be sent to a phone or a tablet to use on screen for convenience
Contact us if you need help with printing / laminating / personalising.
Connect Humber NHS Website
Website containing information on Children’s Services and Adult Learning Disability Services across the Humber Teaching NHS Foundation Trust.
It details services supporting the health and wellbeing of children, young people, adults with learning disabilities, and their families across Hull and the East Riding of Yorkshire, including:
Learning Disability Services, Health Visiting and School Nursing, Neurodiversity, Children's Emotional & Mental Health Services and Children's Therapies (Speech & Language, Ocuppational Therapy, Physiotherapy, Dietetic Services).