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General Practice Nurses and Learning Disabilities

These pages aim to raise awareness about the inequalities experienced by those with learning disabilities and how to improve health outcomes for patients.

The General Practice Nursing and Learning Disabilities Forums have been working in collaboration to create a suite of resources to support health care professionals working within primary care to provide high quality care for patients with learning disabilities. A literature review highlighted that there was a lack of recent evidence-based guidance on the holistic management of a patient with a learning disability and information was difficult to locate. 

To ensure any resources produced were relevant, the GPN forum undertook a survey to identify keys areas where further training and education were required. The survey showed that 232 out of 285 nurses felt that they did not currently have the knowledge and skills to meet the needs of patients with a learning disability. 49% or respondents did not know how to contact the local learning disability service and 65% had not received any learning disability training or education. Additional information from the survey indicated that health care professionals wanted access to resources where they could locate all the required information easily in one place.

View the full survey results

These clinical pages have been developed in response to the survey and several key aspects of health training and education were identified. Navigate the links on this page for further information on the topic areas.

What is a learning disability?

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people (Mencap). 

Approximately 1.5 million people in the UK have a learning disability.

The estimated prevalence of autistic spectrum conditions in adults is about 1.1% of the general population (NICE, 2020). Autistic spectrum conditions are not classed as a learning disability in themselves, however, approximately 20-30% of people with a learning disability also have autism and people with autism are more likely to experience mental health problems (NHS England, 2019).

Many people with a learning disability have greater health needs than the general population. For example, they are more likely to experience mental ill health and are more prone to chronic health problems, epilepsy, physical and sensory disabilities (NHSE/NHSI, 2019). Research evidence highlights the significant health inequalities that exist for many people with a learning disability and that they may die prematurely and avoidably from preventable conditions (LeDeR report, 2020)

Health care professionals have a legal responsibility to provide support and reasonable adjustments to meet the needs of autistic people or people with a learning disability (PHE, 2018). The Equality Act (2010) places a requirement on public services to anticipate and prevent discrimination against people with disabilities, which includes people with a learning disability, autism or both.

People with a learning disability, regardless of its severity, are entitled to the same respect and protection of their human rights as anybody else; although it is clear this has not always happened. It is widely reported that people with a learning disability experience significant health inequalities, including premature and avoidable mortality, that are not an inevitable consequence of having a learning disability. The upstream causes of these health inequalities include: disproportionate exposure to social determinants of health; issues with service quality, including barriers to accessing healthcare; and a failure of services to make individualised adaptations to clinical pathways and systems, so that people with a learning disability can fully engage with health services.

Human rights can be thought of as a series of moral principles or norms that describe certain standards of human behaviour. They are principally concerned with respect, fairness, equality, dignity and autonomy for all; and the UK’s commitment to respecting and protecting human rights, is rooted into its status as a signatory, to the 1953 European Convention of Human Rights (ECHR).

The UK Human Rights Act (1988), requires public bodies to act in ways that are compatible with the ECHR, meaning public authorities, including providers of healthcare, must refrain from breaching human rights; and take proactive steps to protect people from human rights abuses. Specific rights often cited, where people with a learning disability have a poor experience of healthcare services, typically relate to: the right to life; the right to freedom from torture and inhuman or degrading treatment; the right to liberty and security; respect for private and family life; and protection from discrimination.

In 2009 the UK government signed the UN’s Convention on the Rights of Persons with Disabilities, which set out what is required to ensure disabled people’s rights are respected, protected and fulfilled. Although not part of UK domestic law, it provides insight into how the rights enshrined in the Human Rights Act, should be upheld for people with disabilities and makes clear that:
‘States should recognise that people with disabilities have the right to the highest attainable standard of health without discrimination on the basis of disability’.

In 2010 the Equality Act placed duties on bodies, including health and social care providers, not to discriminate on the basis of certain protected characteristics, which include disability; and to make ‘reasonable adjustments’ to the way that services are delivered. Reasonable adjustments aim to make sure that a disabled person can use a service, as close as is reasonably possible, to the standard usually offered to non-disabled people. Reasonable adjustments include things like removing physical barriers to accessing health services; and making whatever alterations are necessary to policies, procedures, staff training and service delivery, to ensure that they work equally well for people with disabilities.

Despite nearly 70 years of international human rights declarations, conventions, treaties and domestic legislation, people with a learning disability often continue to have high levels of undetected and unmet health needs; they experience difficulties in accessing healthcare in the first place; and if access is achieved, they may receive a poorer service than other members of society. 

Learning Disability and autism feature significantly in the NHS Long Term Plan (NHS, 2019), which aims to improve peoples’ health by making sure they receive timely and appropriate health checks, and also improve the level of awareness and understanding across the NHS of how best to support such people. Research indicates that annual health checks are helpful in identifying otherwise unmet needs and in improving long-term conditions management (Hanlon et al, 2018).

75.2% of patients with a learning disability had a Learning Disability Health Check in 2020-21, a statistically significant increase from 56.3% in 2016-17 (NHS Digital, 2020). It is vital to improve access to, and equality of, care across health and social services for this group. This includes earlier detection and management of physical and mental health conditions, as well as timely and effective treatment for more urgent and serious medical conditions (Hemm et al, 2015).

As well as being a legal requirement there is also a Direct Enhanced Service (DES) and professional obligation to provide a good quality health check as specified in the DES Contract.

Please see the Standards for LD health check easy read document for further information on what a health check should include.

On the Registered Care Providers Association (RCPA) website you will find some resources for helping individuals access good quality Annual Health Checks. They are underpinned by 10 Principles upon which people who are learning disabled would like to be treated. See: Annual Health Checks for people with learning disabilities for the 10 principles upon which annual health checks should be planned and delivered. 

Further resources

Resources that support the annual health check process:

A recent systematic review including studies from other countries reported that respiratory disease and circulatory diseases were the main causes of death of people with learning disabilities, with bronchial pneumonia being the most common cause of respiratory death. In England, respiratory disease has been found to be the most common immediate cause of death among people with learning disabilities (52%), twice as common as for people without learning disabilities (25.6%) (O'Leary L, Cooper SA and Hughes-McCormack L.) Early death and causes of death of people with intellectual disabilities: A systematic review. Journal of Applied Research in Intellectual Disabilities, 2018. 31(3): p. 325-342. Research shows that adults with learning disabilities face numerous barriers to managing long-term conditions (Hanlon et al, 2018). 

Further resources

Sepsis

The LeDeR report (2020) identified that sepsis was one of the top six leading causes of death for people with learning disabilities and that carers needed help, support and training to be able to recognise when someone was acutely deteriorating. Having an accurate baseline of physical observations for individuals is important.

Some carers may benefit from being able to recognise the soft signs when individuals are unwell / deteriorating. The Restore 2 ‘mini’ tool may be helpful for carers / families.

Further resources

Constipation

Some individuals with a learning disability are more at risk of constipation than the general population (LeDeR Action From Learning, 2020-21). Constipation is one of the five most common long-term health conditions reported in completed LeDeR reviews (23%) and a third of these reviews mention the prescription of laxatives.

Sadly, Richard Handley, a 33 year old gentleman who had Down’s Syndrome, died from complications arising from constipation. 

See: Richard Handley inquest verdict confirms his death was preventable (video)

It is an important area to explore carefully when undertaking a Learning Disability Annual Health Check, where constipation management should be reviewed to ensure it is being managed appropriately. For more information on how to provide further help and support on improving nutrition and hydration, please see p.27-29 of the LeDeR Action From Learning Report 2020-21.

Screening inequalities exist among people with a learning disability, autism or both and they are less likely to access screening programmes. Cervical screening and breast screening uptake is lower amongst women with a learning disability compared with the general population and engagement with bowel screening can be difficult. People with a learning disability, autism or both need to be supported to make an informed choice about screening programmes that are offered to them and this includes providing information about the risks and benefits of screening in a way that they can understand.

Further resources

Leeds and York Partnership NHS Foundation Trust. Screening resources

AAA screening

Bowel Screening

Breast Screening

Cervical Screening

People with a learning disability are four times more likely to die of something, which could have been prevented, than the general population (Disability Rights Commission, 2006) and respiratory conditions remain the most significant causes of premature mortality for people with a learning disability where deaths have been reviewed as part of the LeDeR programme.

Further resources

Relationships, sex and the use of contraception for people with learning disabilities remains a sensitive and often divisive topic. A Contraceptive Choices Report undertaken by the Open University in 2015 found that few women with learning disabilities make very independent choices about sex and contraception and others are supported to make contraceptive choices by family, friends, advocates and health and social care professionals. Some women do not receive suitable information or advice to make informed contraceptive choices and other people make decisions for them. Women report using contraception for a variety of reasons including the prevention of unwanted pregnancy and because they want to delay, or do not want to have, children. Some women use contraception to manage menstruation.

Further resources

There are many leaflets available for download at Easy Health. Joining is free and you will have have unlimited access to a vast array of easy read health leaflets and videos (not just contraception).

 

Community Learning Disability services vary across the countries in the way in which they are delivered, but all areas should have access to learning disability specialists working within health and / or social care.

Your local general hospital may also have a learning disability nurse working there to support people with learning disabilities.

Make it your mission to find out who your local learning disability colleagues are and find out if your area have a Mental Health & Learning Disability Trust.

You should be able to find Learning Disability service contact details on the Trust website. Social care may also be able to help you make contact with learning disability staff.

Community Learning Disability Teams can have different names, including Intensive Support Teams, Primary Care Liaison Teams, Health Facilitation Teams and Hospital Liaison Nursing Teams.

If you are still struggling to make contact with someone locally, contact the RCN Learning Disability Nurse Forum for further help.


Children, young people and adults with a learning disability, autism or both have the right to the same opportunities as anyone else to live satisfying and valued lives, and to be treated with dignity and respect. Through education and skill development healthcare professionals can learn to perform their role to support people with a learning disability, autism or both to do this (HEE 2021).

Further resources

HEE and Skills for Care are working in partnership on the Oliver McGowan Mandatory Training trials in Learning Disability and Autism.

General practice nurses are being offered new training that aims to make primary care services more accessible and inclusive for patients with learning disabilities and autism. The #MyGPandMe training is being rolled out nationally as part of a campaign to address health inequalities.

Ask Listen Do supports organisations to learn from and improve the experiences of people with a learning disability, autism or both, their families and carers when giving feedback, raising a concern or making a complaint.

STOMP stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines. It is a national project involving many different organisations which are helping to stop the overuse of these medicines (NHSE, 2018).

Failure of health care professionals to communicate effectively and appropriately with people with learning disabilities is a major barrier to the delivery of quality health care. Up to 90% of people with a learning disability have communication difficulties, with around half having significant difficulties in both expressing themselves and understanding what others say (RCSLT, 2010).

Further resources

The General Medical Council has produced a video which explores the patient experience of attending hospital or general practice when you have a learning disability and why being healthy is important. View the video - Patient perspectives. 

See also: General Medical Council. Ethical Hub

What helps people / what doesn't help people

The feedback in these images was collected by Ace (Anglia) / Peer Educators -  when talking to people with LD and/or ASD at Day Services about the importance of attending annual health checks.

Learning disabilities what helps people

 

Learning disabilities what doesn't help people

Health Information A - Z

Leeds and York Partnership NHS Foundation Trust have collated an A to Z of health information on their website of health conditions. View the resource to find useful resources and easy read materials.

Easy read health guides

Health Education England has worked with people with lived experience to produce two easy read health guides. Designed to help people navigate healthcare information, the guides could help people get the treatment they want and the answers they need to understand information they are given. This could include information about medication, appointments, or treatment, and how it is provided, for example by letter or email.

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Page last updated - 15/07/2023

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