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People with learning disabilities are amongst the most vulnerable and socially excluded in our society. It is estimated that there are approximately 20/1,000 people with mild learning disabilities and 3-4/1,000 people with severe and profound learning disabilities in the UK. Over the past three decades, almost all the long stay beds for people with learning disabilities have closed, and virtually all patients with learning disabilities are now living in the community and depend on GPs for their primary health care needs.
Further information Royal College of Nursing learning disabilities guidance.
Department of Health (2009). ‘Valuing People Now’ a new three-year
strategy for people with learning disabilities, sets out the Government's strategy
for people with learning disabilities for the next three years following consultation.
Valuing People Now delivery plan 2010/2011 (published in 2010,
this paper includes a section on further work needed following the 2009 paper.
DH Review. 'Transforming care: A national response to Winterbourne
View Hospital' 2012.
‘The Same as You?’ Scottish Executive (2000)
NHS Health Scotland ; Health Needs Assessment Report: People
with Learning Disabilities in Scotland (2004)
Northern Ireland Strategy on Learning Disability
Learning Disability Strategy Section 7 Guidance on Service
Principles and Service Responses, Welsh Assembly Government, 2004
Department of Health (2008). Independent Inquiry into Access to
Healthcare for People with Learning Disabilities.
From April 2014, the age restrictions for this indicator have been removed so the register now includes people of any age with a learning disability. This is because without a complete register of people with learning disabilities, practices may not be aware of the reasonable adjustments that may be needed for a child or young person with learning disabilities and their family, and of the help and support that may be useful to them. Evidence suggests there are an increasing number of children with learning disabilities now surviving childhood, some of whom will have profound and multiple disabilities as they grow up. Evidence also suggests that health services are often unprepared for these children and young people and the complexity of their problems.
The creation of a full register of patients from April 2014 with learning disabilities will provide primary care practitioners with the first important building block in providing better quality and more appropriate services for this patient population.
Learning disabilities are heterogeneous conditions, but are defined by three core criteria:
• lower intellectual ability (usually defined as an Intelligence Quotient [IQ] of less than 70),
• significant impairment of social or adaptive functioning; and
• onset in childhood.
An IQ below 70 should not be used on its own to determine whether someone has a learning disability. The definition encompasses people with a broad range of disabilities. It includes adults with autism who also have learning disabilities, but not people with a higher level autistic spectrum disorder who may be of average or above average intelligence. The definition does not include all those people who have "learning difficulty" e.g. specific dificulties with learning, such as dyslexia.
Learning disability is defined in Valuing People as the presence of:
For many people, there is little difficulty in reaching a decision whether they have a learning disability or not. However, in those individuals where there is some doubt about a diagnosis or the level of learning disability, referral to a multi-disciplinary specialist learning disability team (where available) may be necessary to assess the degree of disability and diagnose any underlying condition. In some areas, locality community learning disability teams, working with CCGs, provide expertise and data about and for people with learning disabilities. Contractors may wish to liaise with Social Services Departments, Community Learning Disability Teams and Primary Healthcare Facilitators where available to assist in the construction of a primary care database.(see Martin and Martin. Journal of Learning Disabilities, 2000; 4(1): 37-48).
It is a statutory requirement under the Equality Act 2010 and the NHS and Social Care Act 2008 that public sector agencies make 'reasonable adjustments' to their practice that will make them as accessible and effective as they would be for people without disabilities. Reasonable adjustments include removing physical barriers to accessing health services, but importantly also include making whatever alterations are necessary to policies, procedures, staff training and service delivery to ensure that they work equally well for people with learning disabilities.
British Institute of learning disabilities: www.bild.org.uk/
Public Health Institute of Scotland's Autistic Spectrum Disorder:
Needs Assessment Report (2001)
Grant, G. and Ramcharan, P. Valuing people and research: the Learning
Disability Research Initiative overview report. 2007.
See indicator wording for requirement criteria
Prepared By Jean Keenan