Perspectives: a passport to health
Jim Blair describes how the hospital passport helps people with a learning disability.
Being able to traverse the maze that is healthcare is not easy for most people but for people with a learning disability it is even more impenetrable. Ensuring that a person gets the care they need in a timely manner is a challenge for people with a learning disability. Engaging with people with a learning disability is often difficult for health professionals especially since- ‘Health service staff, particularly those working in general healthcare, have very limited knowledge about learning disability. They are unfamiliar with the legislative framework, and commonly fail to understand that a right to equal treatment does not mean treatment should be the same, but rather may need to be adapted to meet special needs.” (Department of Health, 2008).
Reasonable adjustments are required to ensure care is tailored to individual need, a requirement under the Equality Act 2010. The hospital passport is a powerful reasonable adjustment and is much needed. The Confidential Inquiry into Premature Deaths of People with Learning Disability (2013) found that women with a learning disability die on average 20 years younger than women who did not have a learning disability and men some 13 years younger than their non- learning disabled counter parts and some of the most consistent reasons were:
- Delays or problems with diagnosis or treatment
- Problems with identifying needs
- Difficulty providing appropriate care in response to changing health needs
The passports
The passport is set out in an accessible manner using a traffic light coded system. The first pages in red cover the things you must know about the person. This is followed by yellow pages addressing issues that are important to the person. And, finally, the green pages cover their likes and dislikes. This provides a good overview of the whole individual. The passports are filled in by people with learning disabilities and their supporters before or on admission. Passports have been distributed widely to people with learning disabilities by local community learning disability teams, various voluntary organisations, day services, residential services and GPs.
The passports are ‘owned’ by the person coming into hospital, which gives them a sense of being in charge of their health information. This information will assist them in ensuring that they receive the care and treatment that they have a right to. Because the passport includes a wide range of information about the individual, not just their ill health, staff are able to reach a more comprehensive understanding of them as people who do have ‘quality of life’.
Essentially, the passports, when complete, assist hospital staff to provide better care for the person and their families and carers. The passports also educate health professionals to see the person and not their disability. This is going some way to addressing a number of negative issues that have been highlighted about the health service.
The passports enable people to be genuinely engaged in their care as the passport travels with them through their hospital journey as well as when they leave. As a result, people’s care and treatment is more personalised and dignified. Passports can also ensure much more effective, tailored and targeted healthcare that will enhance outcomes.
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 to 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.
