Improving hospital care for patients with intellectual disabilities


Seven years ago, Mencap, the UK charity that campaigns for the rights of people with intellectual disabilities and has a long lasting concern about health, published its 304

shocking Death by Indifference report (Mencap, 2007), describing alleged avoidable deaths of six people which they attributed to discriminatory practices within hospitals. The government of the day established an independent inquiry to take evidence about Mencap’s allegations of institutional discrimination, and the inquiry report made ten wide-ranging recommendations (Michael, 2008). A subsequent study explored how far four of these recommendations had been implemented in six acute NHS hospitals, and how effective they were in improving people’s safety (Tuffrey-Wijne et al, 2013). The study found that safety risks for hospital patients with intellectual disabilities were largely related to omissions of care and treatment, as well as to failures to make reasonable adjustments to interventions or to involve carers appropriately. The lack of shared care protocols and an inability to flag patients with intellectual disabilities meant that their special needs were not recognized by services. Many reports and inquiries have pointed to poor health-care provision for patients with intellectual disabilities, leading to compromised patient safety. The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD), which investigated the deaths of 247 people with intellectual disabilities in England and Wales, reported that people with intellectual disabilities died on average 16 years earlier than people in the general population. The inqury also reported that 37% of people with intellectual disabilities had avoidable deaths having received fewer investigations and less treatment than patients in a comparator group. Only 13% of people in the general population died prematurely of similar conditions (Heslop et al, 2014). All of these findings support Hollins et al’s (1998b) earlier research that adults with intellectual disabilities were 58 times more likely to die before the age of 50 years.

Poorer health outcomes for those with intellectual disabilities

It has now been shown decisively that people with intellectual disability have poorer health outcomes than the general population, for reasons unconnected with the causes of their cognitive impairment. Poor training and awareness for health-care staff exacerbate the barriers to adequate healthcare provision. The General Medical Council has developed a unique section of their website (www.gmc-uk.org/learningdisabilities/) to help raise awareness and address some of these inequalities. As the responsible body for undergraduate education, the General Medical Council stipulates that all medical students must acquire the skills and attitudes needed to provide equal care for people with intellectual disabilities and autism. The Mental Capacity Act post legislative scrutiny committee reported that NHS staff were inadequately informed and skilled in the application of this empowering Act, and that people with intellectual disabilities were among those most disadvantaged by its poor implementation (House of Lords, 2014). The NHS Outcomes Framework 2014/15 commits to reducing the excess mortality rate for people with learning disabilities under the age of 60 years, recognizing that so many premature deaths are avoidable (Department of Health, 2013). The Outcomes Framework has greater aspirations for other groups of patients for whom the excess mortality rate for those aged under 75 years is considered achievable. The British Medical Association has recently added its voice to the growing call for parity of access and of outcomes for people with intellectual disabilities of all ages with respect to their physical health (Board of Science, 2014). The British Medical Association report highlighted the excess morbidity and mortality in people with intellectual disabilities, and supported the establishment of a National

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dults with intellectual disabilities, who make up an estimated 2% of the population (Emerson and Hatton, 2008), have the same health problems as everyone else but their problems are harder to identify, investigate and treat. Intellectual disability is not a disease but rather a state of being which has many different causes, most of which cannot be ameliorated. Experienced doctors and other health professionals will adjust their communication, allow extra time and be willing to adapt the way they work to give this particular group of patients the best chance. This includes supporting decision making by adapting their communication style (Hollins et al, 1998a), working effectively with family and paid carers, and using best interest meetings when needed as required by the Mental Capacity Act 2005. Specialists in intellectual disability should not normally replace primary and secondary care services, but be available to facilitate and advise. Every health professional needs to be able to work with patients with intellectual disabilities as they will present in every physical and mental health service; from surgery to gynaecology, ophthalmology to the diabetic clinic, psychological therapy to eating disorders and so on. Valuing People Now (Department of Health, 2009) was explicit that where possible people with intellectual disability should access mainstream (evidence-based) treatments, and only when this is not possible should specialist services be provided. The onus is on mainstream services to make reasonable adjustments to their treatments and to know when and how to refer to specialist services as required by the Equality Act 2010 (Hatton et al, 2010).

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Editorial Mortality Review body. This has now been announced by NHS England and should be in place by March 2015. The expectation is that the data gathered about premature avoidable deaths will lead to interventions that reduce premature mortality in the future, as has been achieved in parts of the USA.


Radical measures are needed to give all people with intellectual disabilities the best chance of good health, and it seems that after generations of failures, the tide may be turning, with educational, structural and research initiatives all coming together. BJHM

Irene Tuffrey-Wijne

Associate Professor of Nursing Faculty of Health, Social Care and Education Kingston University and St George’s University of London London

Sheila Hollins

Emeritus Professor of Psychiatry of Disability St George’s University of London and Chair Board of Science British Medical Association London WC1H 9JP ([email protected]) Board of Science (2014) Recognising the Importance of Physical Health in Mental Health and Intellectual Disability. British Medical Association, London

KEY POINTS n The NHS is still failing patients with intellectual disabilities in all departments, all specialties and all services. n The Equality Act requires public services to make reasonable adjustments so that disabled people can access services and get the best possible outcomes. n All senior clinicians should have mandatory advanced training on the Mental Capacity Act, to acquire skills in the assessment of decision-making capacity, and on good practice in holding best interest meetings.

Department of Health (2009) Valuing People Now: a new three-year strategy for people with learning disabilities. The Stationery Office, London Department of Health (2013) NHS Outcomes Framework for 2014/15. https://www.gov.uk/ government/uploads/system/uploads/attachment_ data/file/256457/At_a_glance_NHS_OF.pdf (accessed 27 May 2014) Emerson E, Hatton C (2008) People with Learning Disabilities in England. Public Health England, London Hatton C, Roberts H, Baines S (2010) Reasonable adjustments for people with learning disabilities in England: a national survey of NHS trusts. Public Health England, London Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L (2014) The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet 383: 889–95 Hollins S, Avis A, Cheverton S, Redmond D (1998a) Going into Hospital. Books Beyond Words, London Hollins S, Attard M, von Fraunhofer N, McGuigan S, Sedgwick P (1998b) Mortality in people with learning disability: risks, causes, and death certification findings in London. Dev Med Child Neurol 40: 50–6 House of Lords (2014) Mental Capacity Act: PostLegislative Scrutiny Committee. The Stationery Office, London Mencap (2007) Death by Indifference. Mencap, London Michael J (2008) Healthcare for All. Aldridge Press, London Tuffrey-Wijne I, Giatras N, Goulding L, Abraham E, Fenwick L, Edwards C, Hollins S (2013) Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study. Health Services & Delivery Research 1(13) (doi: 10.3310/hsdr01130)

Best practice for patients with intellectual disabilities

Chapters cover all major aspects of the role, including common syndromes and disorders, professional and legal responsibilities, physical and mental health issues, long-term conditions, complex and challenging behaviours, leadership and management, and dealing with emergencies. Written by experts in the field, this unique book provides a clear introduction to the basic principles and skills required by learning disability nurses, and offers contextual advice and guidance for managing common and unexpected situations. Information is presented in a user-friendly question and answer format, and this book can be used as an aide memoire in practice settings.

About the editor Dave Dalby is Senior Lecturer and Academic Lead for Learning Disability Nursing at DeMontfort University. He has published articles on learning disability nursing in Nursing Times, Research in Nursing and Learning Disability Practice. Chris Knifton is Senior Lecturer in Dementia, Learning Disability and Mental Health at DeMontfort University. He also works as Dementia School Lead and School Nursing Skills Facilitator. He has contributed to previous Quay Books publications, including Fundamental Aspects of Long-Term Conditions and Forensic Mental Health Nursing: Ethics, Debates, Dilemmas.

Learning Disability Nurse Survival Guide

Part of Quay Books’ successful Survival Guide series, the Learning Disability Nurse Survival Guide outlines the responsibilities of the learning disability nurse and provides practical advice on handling situations that arise in practice.

Edited by Mark Jukes


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Common questions and answers for the learning disability nurse

The book is divided into four sections: origins, perspectives, practice, and further perspectives.

Section one (origins) describes Great Barr Colony and explores the conceptions of practice of actual attendants and nurses who worked there. It gives readers an in-depth focus on aspects of work and practice not accounted for in the literature to date. Section two (perspectives) explores social policy perspectives from the past eras of the workhouse, the colony and the hospital, through to the present age of citizenship. Research in learning disability nursing practice is identified through scoping exercises to identify its current status. The section questions the research and practice developments that have come of age and that constitute a challenge within an evidence-based health and social care world. Section three (practice) identifies a wide range of specialist areas of nursing practice, including community learning disability nursing, epilepsy, forensics, health facilitation, autism, mental health, challenging behaviour, children’s services and working with people with profound and multiple learning disabilities. Section four (further perspectives) addresses areas of contemporary and future concern, namely, educational curricula for nurses and the importance of inter-professional education and practice development.

Mark Jukes is Reader in Learning Disabilities, Department of Community Health and Social Work, Birmingham City University, Edgbaston Campus, Birmingham, England

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Practice Leadership in Mental Health and Intellectual Disability Nursing ISBN: 978-1-85642-506-3; 210x148mm; paperback; 250 pages; publication 2013; £19.99

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