10 Rules for Ensuring Autistic People and People with Learning Disabilities Can't Access Health Care. and maybe what to do about it

Ten Rules for Ensuring Autistic People and People with Learning Disabilities Can’t Access Healthcare…and maybe what to do about it aims to inspire a serious conversation about the difficulties facing people with learning disabilities and those on the autism spectrum when they need to access healthcare. It is a sad fact that people with learning disabilities will die, on average, between 13 and 17 years younger than others, and this is in no small part down to the challenges of accessing the same care and treatment the rest of us take for granted. Positive change will come, however, by improving practitioners’ understanding of the people they treat and helping them to communicate more effectively with them and their carers and families. Each ‘rule’ in this booklet speaks powerfully with the ‘voice’ of the individual on the receiving end of healthcare practice. Together, the ten rules challenge our existing practice and will help you to offer assessment, treatment and support that can really make a difference.

Viki Ainsworth started her career at the BBC working on Public Eye, Breakfast News and in the Social Affairs Unit of the BBC Newsroom. Viki has over 25 years experience of working in all aspects of the media and is the Company Director of Presenters Inc. She is also a qualified Applied Behavioural Analysis therapist. She has three children Jamie, Saskia and Tilly. Tilly has severe learning disabilities and has had multiple medical issues from birth. The journey with Tilly has followed a path, familiar to many, of finding, funding and co-ordinating many hospital visits in multiple countries, endless form filling, respite care, benefits, assessments, developing a successful home ABA therapy programme, training a team from scratch and, of course, continual concern for Tilly’s comfort, wellbeing and safety. It is a journey which continues as Tilly transitions to adult services, still non verbal, doubly incontinent and with a cognitive ability of one-year-old. Jim Blair is currently a Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street Hospital in London, Associate Professor Intellectual (Learning) Disabilities at Kingston University and St Georges’ University of London and Clinical Advisor Learning Disabilities NHS Healthy London Partnership as well as Clinical Advisor Learning Disabilities NHS England. He is also the Health Advisor at the British Institute of Learning Disabilities and the Learning Disability Advisor to the Sates of Jersey. From 2008-2013 Jim was Consultant Nurse Learning Disabilities at St.George’s Hospital in London ensuring safe lawful timely care was delivered in partnership with people with learning disabilities. Between 2006 and 2009 Jim was President of the Royal Society of Medicine’s Council for the Forum on Intellectual Disability. From 2011-2013 Jim was Vice Chairman of Special Olympics Great Britain. Jim is an Expert Advisor to the Parliamentary Health Service Ombudsman, an advisor for the Down Syndrome Medical Interest Group and is on the editorial board of www.intellectualdisability.info. Jim is also a Specialist Clinical Advisor to the Care Quality Commission.