Making Visits to Hospitals Easier
Tools and resources for better healthcare experiences
Overview
Many children and adults who have Down Syndrome, because of their underlying learning disability and communication difficulties in articulating how they are feeling or describing symptoms, will be reliant on family members or carers to interpret changes in their behaviour or recognise symptoms of deteriorating health. Carers and involved professionals need to be mindful of "diagnostic overshadowing" - whereby clinical signs, symptoms or new behaviours are attributed to the learning disability or other pre-established medical condition.
These resources could help with empowering people and families when accessing health care.
Examples of Paediatric Passports
Going To Hospital Book
Download the "Going to Hospital" book.
Cornwall Down Syndrome Support Group
The fifth book in the Looking Up series is a collaboration with Royal Cornwall Hospital Trust.
We have collaborated with the Royal Cornwall Hospital Trust to create a new book called "Going To Hospital" (GTH), which follows the successful photo-pictorial format of the earlier book, “Going To School”, released in 2017.
This initiative is the work of co-authors Jane Rees from the NHS Learning Disability Nursing & Safeguarding Team at RCH Treliske and Angie Emrys-Jones, Publications Lead of Cornwall Down's Syndrome Support Group.
We are very excited about the potential reach and impact of this simple yet useful book and download, which will truly improve health outcomes for many who are apprehensive about a hospital visit or procedure.
"Going to Hospital" is an accessible publication for patients with learning disability or autism and aims to help children & young people with additional needs to know what they might expect to see when visiting the hospital for an appointment or when being admitted for a procedure.
The booklet is easy to read, uses Makaton symbols throughout to support images, and is now available in hard copy, which will be sent out to patients known to the Learning Disability Team at Royal Cornwall Hospital ahead of appointments or hospital admissions.
Cornwall patients not yet known to the Learning Disability Nursing Team at Royal Cornwall Hospital can request a copy directly for free, and appointment letters will soon host a QR code of the book, meaning that it can be instantly downloaded directly onto a phone or device to be viewed at home. So that no matter where they live, patients will be able to view the images from their device at home in preparation for a visit to the hospital.
Example hospital pledge for people with learning disabilities
Hull Emergency Department pledge for people with learning disabilities:
- We promise to listen to you.
- We promise to listen to your parents/carers.
- We promise to try to find you somewhere quiet to wait, if possible.
- We promise to find out how best to communicate with you.
- We promise to explain what we are doing.
- We promise to do our best to help you feel safe.
- We promise to do our best to help you feel better.
Accessing the Dentist
Team Smile aims to raise awareness and promote a positive dental experience so that everyone, including adults and children with learning disabilities who often face extra barriers to care, can maintain good oral health.
Features a series of short videos demonstrating what it's like to visit the dentist or a member of the dental team, including getting a check-up, a radiograph, having a tooth extracted or a filling, and having your teeth cleaned. The resources are aimed at helping children and adults with learning disabilities to have a positive experience at dental appointments.
Makaton sighs about visiting the dentist.