Perspectives: improving care experiences for individuals with a learning disability
Jim Blair talks about using Great Ormond Street Hospital’s Learning Disability Protocol to prepare for theatre and recovery
Having an operation is a frightening thought but for individuals with a learning disability this is magnified due to their ability to interpret, make sense and accept what is going on. Health services are not often geared to meet the needs of people with a learning disability. A learning disability is distinct from a learning difficulty, which refers to an educational learning difficulty such as Dyslexia.
The protocol was created at Great Ormond Street Hospital to enhance the experience for the individual, families and staff as well as ensuring a coordinated approach. In 2014 a child with learning disabilities was very distressed and disturbed in recovery post operation pulling at tubes, trying to climb off the bed and crying out. In the end the child needed to be sedated by an anaesthetist. This meant the recovery area was closed to other children and young people resulting in nine operations being cancelled. This cost a lot to the individuals and their families but for the hospital, many thousands of pounds. Since the implementation of the protocol in late 2014 this has not happened.
An alert is placed on the records highlighting that a person has a learning disability. Such alerts enable staff and services to offer reasonable adjustments, required under the Equality Act 2010.
The following issues need to be covered during the pre-operative visit:
- previous experience of anaesthesia and surgery
- communication needs and requirements
- is the procedure or investigation to take place under local anaesthetic? If yes, arrangements should be made for the young person to be accompanied by someone they know.
When a hospital passport is available it enables health professionals to know and understand the person behind the health problems. I’ve found they’ve had a positive impact on enhancing care and ensuring safety.
The night before someone with a learning disability arrives on the admissions unit for their operation, procedure staff from that unit telephone families to find out about the person, their likes and dislikes. These are shared within handover and placed on the notes. This ensures that all clinicians are then aware of what someone does not like, for example wearing gas masks, having oral medication, needles or cannulas.
In the recovery area, a quieter area has been created that is used when recovering children and young people with learning disabilities.
Feedback from families illustrates their appreciation that their child’s needs are being individually addressed and that there is a structure as to how their child’s care is managed. Such a protocol would benefit many people with a variety of sensory, communication and mental health issues across the age ranges and health service settings.
Useful reading and websites
- The health needs of people with learning disabilities: issues and solutions by Jim Blair (2016)
- Everybody’s life has worth — getting it right in hospital for people with an intellectual disability reducing clinical risks by Jim Blair (2013)
- Books beyond words: stories in pictures to help people with learning and communication disabilities explore and understand their own experiences
- Easyhealth: accessible health information
- Intellectual disability: health information for health professionals about people with learning disabilities
- Mencap — getting it right: getting it right when treating people with a learning disability.
Read Jim’s other blogs on learning disabilities:
About the author:
Jim Blair is currently a Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street Hospital in London and Associate Professor Intellectual (Learning) Disabilities at Kingston University and St Georges’ University of London as well as the Health Advisor at the British Institute of Learning Disabilities. He also acts as a Learning Disability Advisor to the States of Jersey’s Health and Social Services Department.
Jim advocates for the health rights of people with learning disabilities through his clinical work, researching, publishing papers, presenting at national and international events and leading and setting up different award winning innovative projects and multidisciplinary groups to improve the health of people with learning disabilities and their families. People with a learning disability and their families are the experts and play a vital role in planning, developing, delivering and evaluating services as well as teaching professionals how to improve care provision.
From 2008–2013 Jim was the first 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 and a Clinical Expert with NHS England. He is also an Executive Committee Member of British Academy of Childhood Disability.
