Learning disability and autism: best practice tips
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Learning disability and autism: best practice tips

Allie Anderson Health journalist

Advice for non-specialist nurses on adapting practice for people with a learning disability and autistic people

About 2.5% of the population in England has a learning disability, while latest estimates suggest that as many as 1.2 million people are autistic. People with learning disabilities and/or autism face health inequalities throughout their lives and often have complex needs. Nurses in all settings will provide care for people with learning disabilities and/or autism, who will have a range of needs.

Nursing Management. 31, 1, 12-13. doi: 10.7748/nm.31.1.12.s5

Published: 01 February 2024

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Picture credit: iStock

New guidance from NHS England aims to support nurses with the day-to-day management of the health of patients with a learning disability and/or autism. We set out points all nurses need to know.

‘Many people with profound and multiple learning disabilities also have lots of physical conditions,’ says learning disability nurse Gerard Wainwright, who works in West Yorkshire. ‘We tend to see things like greater obesity and a higher risk of mental health problems, such as depression and anxiety. This means they might be more likely to be going in and out of hospital.’

Severe mental health problems are 8.4 times more common in people with a learning disability than in people without a learning disability, while 37.5% of people with a learning disability are classified as obese and more than one fifth are estimated to have epilepsy.

Data also suggest that epilepsy and obesity – as well as sleep problems, sensory impairments, allergies and autoimmune conditions – are more prevalent among autistic people than in the general population.

How small changes brought benefits to patients in an emergency department

At the Royal London Hospital emergency department, making small but significant changes has brought benefits for patients.

The children’s emergency department has a calming sensory room for children with additional needs.

The department also runs a community emergency medicine service with the London Ambulance Service and London Air Ambulance, allowing patients who find hospital surroundings too challenging to be treated at home where possible. ‘Autism champions’ support and train other team members to ensure autistic patients get optimum care.

New ways of working

The team’s commitment to new ways of working won them a National Autistic Society Autism Inclusion Award, an accolade given to non-specialist services that go the extra mile to support autistic people.

‘The biggest thing we can all do is care and stop and listen to our patients about their individual care and choices,’ says paediatric department lead nurse Sarah Gamester on winning the accolade. ‘We can all make small adjustments that have the potential to make the world of difference for some of our patients, families and carers.’

Access to healthcare services

RCN professional lead in learning disabilities Jonathan Beebee says having a learning disability means people tend to delay accessing health services. ‘It can be difficult for people with learning disabilities to identify their health needs, and they may not be able to report health problems in the same way,’ he says. ‘They might not understand pain and discomfort as being a sign that something is wrong and that they need to seek support.’

This leads to poorer health outcomes. The most recent Learning Disability Mortality Review (LeDeR) found that in 2021, 60% of people with a learning disability died before the age of 65, compared with 10% of the general population. And last year the Health Service Journal, citing leaked NHS figures, reported that in a single year autistic people without a learning disability are 51% more likely than the general population to die.

Many of these deaths occur needlessly, as in the case of Oliver McGowan. Eighteen-year-old Oliver, who was autistic and had epilepsy, mild cerebral palsy and learning disabilities, died in November 2016 after being given the antipsychotic drug olanzapine, despite repeated warnings that he reacted badly to the medication. An independent review found Oliver’s death was ‘potentially avoidable’.

Following a campaign spearheaded by Oliver’s parents, all health and social care staff must now receive role-appropriate training on how to support autistic people and people with a learning disability. The requirement was enacted into law as part of the Health and Care Act 2022.

The government’s recommended training, the Oliver McGowan Mandatory Training on Learning Disability and Autism, is designed to equip health and care staff with the skills and knowledge to provide safe, compassionate and informed care for this patient cohort.

Exactly how the training will be delivered to nurses in different settings is still unclear – the draft code of practice was under consultation until 19 September – but the existence of formalised training is widely welcomed.

Mandatory training will hopefully give nurses more confidence, but many cases require input from learning disability nurses and liaison teams. The majority of, though not all, acute hospitals will have access to specialist nurses, Mr Beebee says, but what exactly that comprises varies across the country.

‘Sometimes it’s one nurse, sometimes it’s a team of five. It’s worth finding out what’s available in your local area in the acute trusts and in the community, because learning disability nurses have great insight that can help patients to make the best decisions for themselves.’

Diagnostic overshadowing

One problem autistic people and people with a learning disability commonly encounter is diagnostic overshadowing. This happens when healthcare professionals assume that a patient’s symptoms and behaviours are attributable to their autism or learning disability rather than considering a different physical cause.

The consequences of diagnostic overshadowing can be grave. ‘Over 40% of the learning disability population die because of pneumonia and aspiration pneumonia and many of those deaths are avoidable,’ says Mr Wainwright.

‘I have heard people say, “They’ve aspirated because they’ve got a learning disability”, but this wouldn’t affect the ability to swallow.’

Nurses can take steps to mitigate these risks by exploring other possible causes of a patient’s symptoms and behaviours and getting to know the patient. Nurses should check whether an autistic person or a person with a learning disability has a hospital passport – this outlines information relating to the person’s health and care needs, including treatment plans, medications and communication preferences.

Although helpful, hospital passports are not a perfect solution as they can get lost or overlooked. They also contain only basic information, thereby omitting what may be small yet significant details that could make hospital a much less frightening place for someone with autism or a learning disability.

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‘Prioritise working in collaboration with families, unless there is a good reason not to’

Jonathan Beebee, RCN professional lead in learning disabilities

Good communication

‘Hospital passports are great but it’s often better to speak to the person,’ says Mr Wainwright. When there are communication barriers, for example, it is essential to talk and listen to the person and their family or carer. ‘The patient might take comfort in having certain music on or having a particular item with them, or there might be a fragrance that helps them feel calm,’ he says.

Getting to know patients can empower nurses to make reasonable adjustments to their care – a legal requirement under the 2010 Equality Act. NHS England guidance says reasonable adjustments ‘aim to remove barriers, do things in a different way, or provide something additional to enable a person to receive the assessment and treatment they need’.

Some changes – such as providing dedicated quiet spaces for people who experience sensory overload – can require greater investment and be more difficult to implement.

Delivering the best care for autistic people and people with a learning disability can be a difficult balancing act. Nurses should assume that patients have capacity in line with the Mental Capacity Act, while also making sure families are involved in conversations and decisions.

‘Prioritise working in collaboration with families, unless there is a good reason not to,’ says Mr Beebee. ‘There might be safeguarding concerns, or the person might want to discuss something private such as sexuality or sexual health. And sometimes people will make unwise decisions, but that’s okay.’

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