Hi, my name is Angie Emrys-Jones and I am co-author of the Looking Up book series for Cornwall Down's Syndrome Support Group (CDSSG), of which my 13 year old son is a member.
We have been creating accessible books at CDSSG since 2014 when the very first book, ‘Looking Up’, was created for brand new parents coming to terms with the news that their little one is chromosomally enhanced. Our subsequent books followed the same pictorial style: ‘Tea at Grandmas’ for grandparents, an update of the original ‘Looking Up’ book, and also our most famous publication, ‘Going To School’, which inspired the very wonderful LD Nurse that is Jane Rees to approach me about creating something similar for the hospital setting.
Jane Rees leads the Learning Disability and Autism Liaison Team at our local hospital and is passionate about making Hospital visits for patients with learning disability and autism less stressful for them and their families. Jane has been a practicing Learning Disability Nurse for over 26 years supporting and advocating for individuals with a LD or autism, making sure they receive equality of care.
After our initial chat, the lightbulb switched on and we both instantly knew that ‘Going To Hospital’ would be born and be a massive success for so many families across the country.
So, what is it?
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.
This is done by filling the book with real life pictures of our children and young people in the hospital environment having blood test and scans etc and supporting the images with Makaton symbols throughout, with an index at the back of signs and symbols to promote communication during the clinical episode and beyond.
The book can be used to build communication and relationships between the child and health professionals, to help the child feel empowered and in control of their health decisions. Knowing the plan and what is going to happen to them at each stage has proven to enhance their experience and hopefully a more positive one with the use of this book.
In Cornwall, all patients in the county are eligible for a free hard copy from the Royal Cornwall Hospital LD Nursing team. But what if I don’t live in Cornwall? Don’t panic, the book is also be available in digital format hosted on the RCHT website and other outlets so that those with anxiety, autism etc no matter where they live will have an avenue to view the images from their device at home in preparation of a visit to hospital.
Download 'Going to Hospital' as a PDF file
Our good friend and Looking Up Books Makaton Collaborator Amanda Glennon from Inclusive Teaching Matters has produced a pdf download of all signs and symbols used in the book in the form of Healthcare Prompt Cards. These are free to download from the Makaton Library. It is intended that wards use the health cards in the download to provide now & next boards with a timeline of treatment – medicine / operation / sleep / wake up / eat / drink / toilet / home etc - thereby creating a visual timetable for patients who need more support to embed their understanding and manage expectations of procedures or admissions etc.
The project has the support of Mencap as this runs in line with their national Treat Me Well campaign, the Downs Syndrome Research Foundation and also Paula McGowan’s high profile #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.
Jane and I are beyond thrilled at the feedback we have had from families and are so excited to work with other trusts to make the book transferable and more relevant to other hospitals.