Appendix 45 - Making visits to hospitals easier - resources

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.

A) Examples of paediatric passports:

B) ‘Going To Hospital’ Book

https://www.cdssg.org.uk/going-to-hospital-book/

Cornwall Down Syndrome Support Group:

The fifth book in the Looking Up series is a joint collaboration with Royal Cornwall Hospital Trust.

We have collaborated with 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 but so useful book and download that really will improve health outcomes for so 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 hospital for an appointment or when being admitted for a procedure.

The booklet is easy 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 of a visit to hospital.

C)An example of a hospital pledge for people with learning disabilities

https://www.hey.nhs.uk/patients-and-visitors/children-learning-disabilities/the-emergency-department-pledge-for-people-with-learning-disabilities/

The 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

Appendix 45 - Making visits to hospitals easier - resources

A) Examples of paediatric passports:

B) ‘Going To Hospital’ Book

Cornwall Down Syndrome Support Group:

C)An example of a hospital pledge for people with learning disabilities

D) Going to the dentist and Makaton dental prompt cards:

Going to the dentist - a positive experience - video:

Going to hospital - Healthcards