Cornish Down Syndrome Charity & Royal Cornwall Hospital (Treliske) Support Children & Young People To be Heard.
‘Going to Hospital’ – 5th Book in the Looking Up Series, a collaboration between Royal Cornwall Hospital Treliske and the Cornwall Down’s Syndrome Support Group charity
A Cornish charity that supports people with Down’s syndrome has collaborated with Royal Cornwall Hospital 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 Treliskeand Angie Emrys-Jones Publications Lead of Cornwall Down’s Syndrome Support Group.
GTH 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 RCHT ahead of appointments or hospital admissions.
Cornwall patients 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.
The booklet is also available in digital format hosted on the RCHT website here https://www.royalcornwall.nhs.uk/services/safeguarding-services/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. 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.
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 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.
A link to the pdf of the book and the Makaton download from the RCHT website is available here https://www.makaton.org/shop/shopping/freeDownloadDetails/Going-To-Hospital-Healthcare-Cards
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.
Jane Rees, Manager of the Learning Disability and Autism Liaison Team.
“From RCHT’s perspective communication is one of the biggest obstacles patients with a learning disability face when coming to hospital, so we have developed a tool that patients, families and staff could use to try and break down these barriers. This book can be used prior to admissions or appointments to reduce anxiety and allow time to process what may happen when they attend and allow them to ask questions using the book in their own time. Makaton is such a fantastic communication aid, and if the health care staff can use the signs and symbols within the book to build relationships with the patients this can only be a positive move forward.”
‘Having a copy of the ‘Going to Hospital book helped prepare our daughter for a planned dental procedure under general anaesthetic. She is a Makaton user, so being able to download all the signs & symbols we needed from one place was amazing. We used the now & next board throughout our hospital visit which reduced all of our anxiety and made the whole experience much less stressful.’
Angie Emrys-Jones Co-Author for CDSSG
‘When Jane approached CDSSG to work with her on creating Going To Hospital, we knew it would be a successful resource; our proven picture format of ‘Going To’ speaks volumes to all children and young people both with and without additional needs and works perfectly for this project. 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.’
Helen Laverty MBE Academic Lead for Learning Disability & Mental Health Nursing Nottingham University
‘Acute health liaison nurses are in short supply, and whilst we wish there were enough in every acute hospital setting, we know that’s not the case. No boy or girl with additional support needs and their family should ever feel lost in any health setting. We at Positive Choices are delighted to be able to promote this amazing 4th book in the looking up series designed to begin those supportive conversations about what going to hospital should and could be like.’ Paula McGowan.
‘It’s important that learning disabled and autistic children and young people have a positive experience when attending medical appointments. The law tells us that Reasonable Adjustments must be made for them so that they can experience equal health care. Going to hospital, does exactly this. It enables these children and young people to communicate their concerns and it enables them to tell clinicians how to help them best.’