Improving healthcare for people with learning disabilities

In the latest in our series showcasing topics presented at recent Nursing in Practice 365 events, community learning disability nurse Leah Pike explains what nurses in primary care can do to ensure people with learning disabilities receive equitable health care

Understanding what learning disability means

NICE advises that three core criteria define a learning disability, specifically:

Having a lower intellectual ability (IQ of lower than 70).
Significant impairment of social or adaptive functioning.
Onset from childhood.¹

The UK Department of Health and Social Care defines a learning disability as ‘A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood.’²

People often confuse a learning difficulty with a learning disability, but they are distinct. A learning difficulty does not impact a person’s general intelligence and may include ADHD, dyslexia, and dyspraxia.³However, remember it’s possible for someone to have both a learning disability and a learning difficulty.

To improve care for people with learning disabilities and autism, it has now become a legal requirement under the Health and Social Care Act for providers to ensure all healthcare staff undergo training so they have the right knowledge and skills to support people with a learning disability and/or autism receiving care.⁴

As such, all nurses in general practice, care homes and other CQC regulated providers in the community are expected to undertake at least Tier 1 training under the new programme.

People with a learning disability face health inequalities

It is well documented that there are some major health inequalities between people with a learning disability and those without. These can be seen within the Southampton Data Observatory, which published findings in September 2023.⁵

The findings, drawn from the period 2021-2022, showed that several long-term conditions are much more prevalent among people with learning disability than those without, for example:

7% of people with a learning disability have asthma, compared with 6.5% of those without;
7% of people with a learning disability are living with diabetes, compared with 5.5% of those without;
5% of people with a learning disability are medically classed as obese; this compares to 8.3% of those without a learning disability;
and finally 16.6% of people with a learning disability have depression, compared to 10.5% of those without a learning disability.

The Observatory data also showed that the uptake of breast cancer screening in 2021-2022 for those with a learning disability was only 48.7%, compared to the uptake in people without a learning disability being 69.8%.

Moreover, research from the King’s College Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme showed that nationally, six out of 10 people living with a learning disability died before they were 65.⁶

These stark inequalities demonstrate how people with learning disabilities need more support to ensure they receive equitable healthcare so that their health needs are met.

Supporting equitable health care – reasonable adjustments

As in other localities, we have specialist community teams across Southampton and Hampshire who support people with a learning disability, and these teams will have their own criteria which sets out who can be referred to the team. However, many people with a learning disability will also need to be supported within primary care settings such as when visiting their GP surgery for routine care and other various appointments or treatments, as well as within hospital settings.

The Equality Act 2010 makes it a legal requirement for all organisations to take steps to remove barriers that people may meet if they have a disability.⁷ For example, NHS England states that the NHS must make it as easy for people with a disability to use healthcare services as it would be if they did not have a disability.⁸

Importantly I feel that this guidance does not just apply to those specifically with a learning disability but also to anyone with neurodiverse needs, including autism.

Everyone’s needs differ and are individual to each person. When supporting someone with a learning disability or autism, it’s important to use initiative and think outside the box, to judge what might or might not work.

Mencap sets out a list of common adjustments that can be made with consultations, including:⁹

speaking clearly and using simple words;
not rushing appointments and potentially booking double appointments;
being flexible with appointment times; providing a quiet place for the individual to wait or allowing them to go for a walk whilst waiting;
providing information in an easy read format; and
reading the individual’s hospital passport. The hospital passport is a document which informs hospital staff about the needs of the individual with a learning disability.¹⁰ It includes how they communicate, how to support them, what is important to them and if there is anything that staff need to be aware of. It can also be used in other settings such as outpatient appointments.

It is important to speak with the person and their carers or parents before an appointment. Be flexible – if the appointment doesn’t work the first time, try again another time. Don’t push too hard; it may reduce the chances of the individual ever returning and cause further behaviours that staff may find challenging if and when they do return. Everybody is different; what works for one person may not work for another, so it is important to read the individual’s hospital passport as this provides information about them, their individual needs and how best to support them.

Further resources and training

There are many places to get further information about people with learning disabilities and reasonable adjustments. Many sites have videos and resources to watch and download, including Mencap, NHS England, the Challenging Behaviour Foundation, the National Autistic Society and NICE.

Details for the mandatory training for healthcare staff – the Oliver McGowan training programme – are available on the Health Education England website.⁴ This training is named after Oliver McGowan who had learning disabilities and Autism and whose death identified the need to ensure that health and social care staff received better training in managing patients with these conditions. The training is aimed at reducing health inequalities for people with learning disabilities and autism and preventing avoidable deaths among patients in healthcare settings.

References