Mencap describes learning disabilities like this: ‘reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money’. People with learning disabilities will have had these difficulties since childhood. As Mencap notes, a person ‘with a mild learning disability may only need support with things like getting a job … someone with a severe or profound learning disability may need full-time care and support with every aspect of their life’. The term ‘intellectual disability’ is commonly used internationally and in academic publications. In education and children’s services young people may be described as having a moderate or severe learning difficulty, whereas in adult life ‘learning difficulties’ usually means specific learning problems such as dyslexia. The term ‘learning disabilities’ does not include dyslexia, specific social/communication difficulties such as Asperger’s syndrome, or significant and widespread difficulties in learning and understanding that are acquired later in life (for example, as a result of a brain injury or dementia). People with learning disabilities are more likely to have autism than people who do not have learning disabilities. Find out more.
Approximately 225,000 children and 901,000 adults in England have learning disabilities. However, most adults with learning disabilities do not use specialist services for people with learning disabilities. Approximately 200,000 adults in England use specialist services for people with learning disabilities or are known to health or social care services as having learning disabilities. Find out more.
We have web pages through which you can find out how many children in your area we expect to have learning disabilities (or autism) and how many adults are recognised by GPs as having learning disabilities.
We have web-based profiles of information by local authority area. The profiles can be used by commissioners and health professionals when making decisions about services for people with learning disabilities. The indicators include:
Rates of adults with learning disabilities known to local authorities and to GPs
Proportion of adults with learning disabilities (known to GPs) who have had a health check
Proportion of people with learning disabilities living in different types of accommodation. Find out more.
There are two main ways you can collect information about the specific health needs of people with learning disabilities in your area. First, you can undertake periodic local health audits. Second, you can extract information already held in information systems operated by local GPs and hospitals. We have written some guidance about using local data to monitor the Health Needs of People with Learning Disabilities as well as a report about hospital admissions that should not happen. There is a new national project to get a more detailed understanding of the health of people with learning disabilities in each part of the country, the care they get and how this compares to the health and care of people who do not have learning disabilities.
Yes. People with learning disabilities are more likely to die at an early age than other people. In 2013 the confidential inquiry into premature deaths of people with learning disabilities (CIPOLD) found that men and women with learning disabilities died sooner than those without learning disabilities (an average of 13 and 20 years respectively). CIPOLD also found that avoidable deaths from causes related to poor quality healthcare were higher than for those with no learning disabilities. In 29% of these cases there had been significant delay or difficulty in diagnosis and for 30% there had been problems with treatment. A national Learning Disabilities Mortality Review Programme is now under way. Children and adults with learning disabilities are also more likely than their peers to have more sensory impairments and poorer physical and mental health. Find out more.
There is evidence to suggest that, when compared with their non-disabled peers, children with learning disabilities are: less likely to have been breastfed at all or breastfed exclusively; more likely to live in rented housing, overcrowded housing, housing in a poor state of repair and housing that was too cold in winter; more likely to be exposed to tobacco smoke; at increased risk of exposure to violence, including bullying, physical, sexual, emotional abuse or neglect; less likely to have a close relationship with their mother; more likely to be exposed to inconsistent and harsh parenting and more chaotic family environments, and more likely to be exposed to a greater number and wider range of potentially adverse life events. Recommendations for national and local government focus on three key actions: reducing child poverty; reducing exposure to specific hazards, and building resilience. Find out more.
The main reasons people with learning disabilities have poorer health are: (1) increased risk of exposure (and possibly greater vulnerability when exposed) to well established ‘social determinants’ of poorer health such as poverty; (2) some specific genetic causes of learning disabilities are also associated with some specific health risks; (3) people with learning disabilities often have communication difficulties and poorer understanding of health; (4) people with learning disabilities are less likely to lead ‘healthy’ lifestyles; (5) people with learning disabilities are at risk of being discriminated against when trying to access or use health services. These reasons are often interconnected. For example, where you live and how much money you have can affect your ability to lead a healthy lifestyle. Find out more. We have written a report about why children with learning disabilities in the UK have poorer health than other children.
Education, health and social care services need to work together to improve the daily living conditions of people with learning disabilities, improve the knowledge and understanding of people with learning disabilities about health and make ‘reasonable adjustments’ in how services are provided that take account of the specific needs of people with learning disabilities. Find out more. We have worked with the Voluntary Organisations Disability Group to develop the Health Charter for Social Care Providers. This is designed to support social care providers, working in partnership with their health colleagues, to tackle some of the health inequalities that people with learning disabilities experience. We have also written guidance in relation to the annual health checks enhanced service.
Health and social care organisations have statutory responsibilities under the Equality Act 2010 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010 to make ‘reasonable adjustments’ in how services are provided in order to reduce the preventable inequalities in health experienced by people with learning disabilities. Find out more.
In law, all public sector services have a legal duty to make ‘reasonable adjustments’ to the way they make their services available to people with learning disabilities, to make them as accessible and effective as they would be for people without disabilities. Reasonable adjustments include removing physical barriers to accessing health services; importantly they also include making whatever alterations are necessary to policies, procedures, staff training and service delivery to ensure that services work equally well for people with learning disabilities. Some adjustments can be ‘anticipatory’ (for example, provision of information in easy read formats), whereas others are required to respond to individual needs. We have undertaken a survey of what reasonable adjustments NHS Trusts are making and we host a searchable directory of adjustments. Find out more.
Health care organisations should be making reasonable adjustments that help people with learning disabilities to access and make the best use of primary and secondary health care. They range from providing information in ways that are more accessible for people with learning disabilities to providing specific health checks for people with learning disabilities (see question and answer below on annual health checks). Find out more. We have produced a series of guides to reasonable adjustments in relation to specific conditions and services.
Uptake of screening is not as good among people with learning disabilities as in the general population. Commissioners and service providers should work together with the national screening programmes (bowel, breast and cervical cancer) to improve access. We have collected examples of good practice from across the country and published an updated guide.
Commissioners should ensure that the health inequalities faced by people with learning disabilities locally are identified and documented in the Joint Strategic Needs Assessment. They will need to work together with relevant partner agencies to commission services that address the determinants of health inequalities, such as poor housing and unemployment, and should ensure that people with learning disabilities and their families have access to information and services that support healthy lifestyles. Commissioners should focus on increasing the number and quality of health checks for people with learning disabilities, as we know that health checks identify unmet health needs. Find out more. They should ensure people with learning disabilities have equal access to cancer screening programmes They should also ensure that other health services are accessible to people with learning disabilities by checking that reasonable adjustments are in place in the services they commission. Using the Self-Assessment Framework (SAF) can help commissioners to measure progress. Find out more.
Since 2009 GP practices have been offered additional funds (through a Directed Enhanced Service, now an Enhanced Service) to enable them to provide annual health checks for adults with learning disabilities. The checks should be undertaken by a provider with appropriate training and be based on a local protocol that includes the following: a review of physical and mental health with referral through the usual practice routes if health problems are identified; health promotion; a review of chronic illness; a physical examination; a review of epilepsy; a review of behaviour and mental health; a syndrome-specific check; a check on the accuracy of prescribed medications; a review of co-ordination arrangements with secondary care; a review of transition arrangements where appropriate. The Royal College of GPs offers a Step by Step guide, which includes a copy of the Cardiff Health Check and has some examples of syndrome specific checks. (Note: you need to ‘add the item to basket’ to be able to download the guide for free.) The Enhanced Service specification now extends health checks to young people from age 14 and includes the preparation of a health action plan. Find out more.
People with learning disabilities have poorer health than their peers. This is, in part, due to the difficulties they face in recognising ill-health and in using primary health care services. Providing annual health checks for adults with learning disabilities has been shown to be an effective way of identifying health conditions that were previously not known about. As such, they are possibly the most important ‘reasonable adjustment’ that can be made in primary health care services to address the health inequalities faced by people with learning disabilities. Find out more.
We publish the information collected each year on the uptake of health checks by adults with learning disabilities in England. Find out more.
We worked with many different people to provide an audit tool that will help people judge how well they are doing at delivering health checks and what they could do to deliver them more effectively.
People with learning disabilities are likely to find it more difficult than most people to communicate natural anxieties, or explain any pain or discomfort they may be in. They may have difficulty in adjusting to the hospital environment and routines. Hospital staff may not know or understand the cognitive, health and personal care needs of individuals with learning disabilities. Vulnerability is likely to be further increased by other factors such as epilepsy, mental illness, sensory impairment or risk of choking - all more common amongst people with learning disabilities. Hospitals need to be able to identify people with learning disabilities on their record systems so that they can put appropriate reasonable adjustments in place. Systems should include use of a ‘risk, dependency and support’ assessment by hospital staff to identify individual needs and the corresponding adjustments required, ideally in advance of admission.
Developing a culture in which everyone understands reasonable adjustments is important, as are identification of and support for carers. Clear care pathways are needed, including the provision of accessible information and admission and discharge protocols that take account of the additional support needs of people with learning disabilities. People with learning disabilities and family carers should be involved in service development, staff training and evaluation. All staff need to understand the Mental Capacity Act and hospitals should monitor how well it is being implemented.
Many hospitals now employ acute liaison nurses to help them improve their care and treatment of people with learning disabilities. We have written some guidance about easy steps to improve support for people with learning disabilities in hospital. We have also written a series of reports about the reasonable adjustments that mainstream services can make to improve care for people with learning disabilities.
More and more services are developing their own easy read information or adapting information shared by other areas. Two websites have collected a lot of examples of easy read information and short films that services have agreed to share. These are ‘Easyhealth’ and ‘A picture of health’ You can also search for easy read information in our database of reasonable adjustments.
If the individual has capacity to make a specific decision for themselves, only they can give consent. It is the responsibility of the clinical decision-maker to assess the person’s capacity to make a decision about the procedure. In making the assessment they should listen to the views of people who know the individual well, because those people will have experience of how the person is supported to make decisions and communicate their views in other aspects of their life. Evidence should be recorded of what has been done:
to help the individual understand what is proposed
to enable them to give or refuse consent themselves.
If it is decided that the person lacks capacity to make a particular decision but they have a formal representative (under a lasting power of attorney for personal welfare, or a court-appointed deputy for personal welfare), that representative can give consent. Otherwise the decision-maker (usually the clinician proposing an investigation or treatment) must make a decision in the person’s best interests. A best interests process will often take the form of a meeting. Family members, advocates and support staff should be invited to give their views, based on their knowledge of the person. Even if the person does not have capacity to make the decision themselves, they may be able to contribute their views. If there is no family member to contribute to an important decision, an independent mental capacity advocate (IMCA) would be required and a referral to them would be made by the decision-maker. If there is any disagreement, again an IMCA would be required. There is guidance from the government about the Mental Capacity Act here and there is easy read information about the Act here.
There is an annual census of people with learning disabilities or autism in psychiatric hospitals (3,250 people in September 2013). We analysed the data from the 2013 census and produced a report that provides separate analyses for children and young people, considers regional variations in detail, explores the relationship between census figures and the very large numbers of admissions reported in hospital episode statistics, and explores in detail the issues around people detained under the various parts of the Mental Health Act. Key findings were:
The large proportion of patients who were detained under criminal justice provisions of the Mental Health Act, particularly under restriction orders
The high proportion of patients for whom there seemed to be no current discharge planning
The extent to which numbers of patients in hospital appeared to exceed those known about by mental health and learning disability commissioners
The large variation between regions in the use of in-patient mental healthcare
The number of children and young people in hospital was relatively small, and their hospitalisation rate much smaller than that for adults, but those who were in hospital were on average further from home. Regional disparities in the hospitalisation rate for children and young people were greater than for adults.
Although health services have an important role to play in promoting good health, and need to do more to make their services accessible, many of the health issues that people with learning disabilities face are to do with social determinants of poorer health, and the support people receive regarding their general health and wellbeing. Social care providers and support staff have an important role to play in this and in enabling access to primary health services. In partnership with the Voluntary Organisations Disability Group (VODG) we developed a health charter for social care providers. The charter is designed to support social care providers, working in partnership with their health colleagues, to tackle some of the health inequalities that people with learning disabilities experience. Organisations can sign up to the charter here. The charter comes with guidance to support implementation, and a self-assessment tool (both updated Nov 2015). Find out more.
Each year the NHS in England and local councils undertake a self-assessment process. This is a way of working that gets people together to discuss, and decide, how well they think their local and regional health organisations are working to improve the health of people with learning disabilities. You can see the latest SAF data here. The self-assessment process is an important way to involve people with learning disabilities and family carers in reviewing and improving local services. For 2015 the Association of Directors of Adult Social Care (ADASS) and NHS England have announced that no local data collection will be required; Public Health England will analyse data covering most of the areas of population and primary health care through the national General Practice Extraction System, locality by locality. Senior leaders from ADASS and NHS England will be asked to establish a formal review meeting to analyse their data and information, and agree local commitments to ensure progress in identified priority areas. People with learning disabilities and family carers and will be central to this. Following consultation a new Joint Health and Social Care Learning Disability Self - Assessment Framework will be launched in 2016. Find out more.
You can get a range of data about people with learning disabilities at Local Authority level here.
The Care Quality Commission (CQC) inspects health services and produces reports. You can find our report about how CQC inspections address the needs of people with learning disabilities here.
The UK Health and Learning Disability Network is a free electronic forum for anyone interested in the health of people with learning disabilities. You can ask questions and share experiences. Find out more.