The Foundation are proud to support a new book in the “Looking Up…” series that will improve access to healthcare for all people with LD, including those with Down’s syndrome.  Released this week by Royal Cornwall Hospitals Trust and Cornwall Down’s Syndrome Support Group – CDSSG with the support of the Foundation, MENCAP and Inclusive Teaching Matters.


Going to Hospital breaks down barriers in the access to healthcare by making the journey to and through healthcare clear and simplified.  Each page representing a step in the journey.  The use of photos, words and Makaton symbols helps the reader to see what their trip will be like and take the fear and uncertainty out of an already stressful time.


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. Angie and Jane are passionate about supporting children & young people to be heard in the clinical setting by removing as many barriers as possible to make the hospital experience less intimidating or overwhelming to those with learning disability and or autism.

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 RCHT ahead of appointments or hospital admissions. Amanda Glennon of Inclusive Teaching Matters has produced a 10-page pdf of all the Makaton signs and symbols used in the book as Healthcare Prompt Cards which will be freely available to
both patients and staff on the Makaton Charity Website shortly. It is intended that wards use the download to provide now & next boards with a timeline of treatment – medicine/operation/sleep/wake up/eat/drink/toilet/home etc therefore creating a visual timetable for patients who need more support to embed their understanding and manage expectations of procedures or admissions etc


The Going To Hospital book is designed to be transferable to other trusts by enabling other hospitals to adapt and ‘tailor’ their own versions of the book and therefore being relatable in other areas of the UK. This will reach yet more people showing some of the procedures, equipment, and types of staff that children and young people with additional needs might see during their hospital visit.



The project has the support of Mencap’s national Treat Me Well campaign, the Downs Syndrome Research Foundation and also Paula McGowan’s #OliversCampaign following the preventable death of her son Oliver in 2016 due to poor care and inappropriate treatment. Oliver’s story, and others like his, are one of the main drivers for this project, we want to make sure the voices of our young people are heard in the clinical setting and that they are communicated with appropriately and are in control of their care as much as possible.


“It’s important that we are the healthiest we can be. This can sometimes mean that we need to go to hospital. Many people can feel frightened when they have to go to the hospital for lots of different reasons and that is perfectly normal. Lots of people find it difficult to explain exactly why they are so nervous. This fifth book in The Looking Up series is designed to help you to talk with your grown ups about why you are nervous and will help you to feel more confident to visit whichever department you need help from to be your healthiest self”

Paula McGowan, #Oliverscampaign



If you live in Cornwall and are not yet known to the Learning Disability Nursing Team at RCHT 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.