Hospitals must do more to provide effective care for people with learning disabilities, the patient safety body has said.
The Health Services Safety Investigations Body (HSSIB) said the current system can cause distress and confusion for patients, as well as elevating the risk of harm.
An HSSIB probe looked at how information about patients with learning disabilities is shared following admission to hospital, and how staff are supported to deliver their care.
It found the system is not always designed to provide effective care, and patients are often looked after by staff who have no specialist training, skills or experience in working with people with learning disabilities.
It also found some hospital staff may lack confidence in assessing the mental capacity of patients with a learning disability, in line with the Mental Capacity Act (2005).
What our investigation shows is that, where systems and processes do not support staff overall, an ‘unrealistic reliance’ is placed on individual staff members working within hospital wards— Clare Crowley, Health Services Safety Investigations Body
The HSSIB estimates there are more than 900,000 adults in the UK with a learning disability.
Senior safety investigator Clare Crowley said: “Each person with a learning disability will have their own experiences, their own way to communicate, and will come into hospital with unique needs, which will require a tailored set of reasonable adjustments.”
The HSSIB said there is no national guidance for an acute learning disability liaison service, leading to variations in how services are funded, their availability and the size of specialist teams.
Information on patients with a learning disability are often collected from friends and family and can be unreliable, and there is no national shared system for storing and managing information about the needs of those with learning disabilities.
The quality of services is monitored with an annual benchmarking survey, which is funded until the end of 2023/24. However, the HSSIB said “decisions on future years have yet to be made”.
Ms Crowley added: “What our investigation shows is that, where systems and processes do not support staff overall, an ‘unrealistic reliance’ is placed on individual staff members working within hospital wards.
“We heard from staff that they are trying their best for their patients but don’t always have the time to meet needs in the way they would like and are not always equipped with the specialist skills and knowledge they need to assess and care for people with a learning disability.”
If needs are not met, it can cause distress and confusion for the patient and their families and carers, and raises the risk of poor health outcomes and in the worst cases, harm— Clare Crowley, Health Services Safety Investigations Body
One example cited in the report is a 79-year-old man who was admitted to hospital following a referral from his GP.
He died after a cardiac arrest two weeks later, but the HSSIB found that his needs in hospital “were not consistently documented or met”, including a hearing impairment not being addressed, meaning staff were unable to communicate with him.
Ms Crowley said this experience, as well as the conversations the HSSIB had with other patients and their families, “highlight just how important person-centred care is”.
“If needs are not met, it can cause distress and confusion for the patient and their families and carers, and raises the risk of poor health outcomes and in the worst cases, harm,” she added.
The HSSIB has made four recommendations based on its findings, which it says will aim to reduce safety risks, tackle the inequality of care, and support the delivery of safe care.
They include the development of a guide by NHS England on disability liaison nursing best practice for all acute hospitals to enhance decision-making, as well as a guide on the practical assessment of the mental capacity of people with a learning disability.
NHS England should also ensure that the national learning disability improvement standards annual benchmarking survey continues, the HSSIB said, and that it introduces a set of guidelines on information to be included in a health and care passport – which could be in paper or digital form – for patients with learning disabilities.
Trust leaders are committed to stamping out health inequalities and improving quality of care for all, but operational pressures and the lack of available data on health inequalities within the NHS have slowed progress significantly— Saffron Cordery, NHS Providers
Saffron Cordery, deputy chief executive at NHS Providers, said the HSSIB report “bolsters longstanding concerns over the gaps in care provided to patients with learning disabilities”.
“Trust leaders are committed to stamping out health inequalities and improving quality of care for all, but operational pressures and the lack of available data on health inequalities within the NHS have slowed progress significantly,” she added.
“Investing in training programmes would help equip hospital staff with the skills, knowledge and confidence needed to provide effective care to patients with learning disabilities.
“We agree that rolling out standardised national guidance for acute learning disability liaison services could also help ensure consistent and equitable care across the country.
“Getting care right for patients with learning disabilities will mean getting care right for everyone.”
Jackie O’Sullivan, acting chief executive of learning disability charity Mencap, said: “This important report outlines the systemic barriers people with a learning disability face in getting their health needs met.
“These issues are far from new. It is appalling that in 2023 people with a learning disability still face such huge inequalities when accessing healthcare.”
An NHS spokesperson said it “remains committed to increasing support for people with a learning disability” and will be rolling out a new “digital flag” in patient records from April 2024.
Known as the Reasonable Adjustment Flag, it will ensure staff are aware if a patient is autistic or has a learning disability and the reasonable adjustments they need.
The Department of Health and Social Care has been approached for comment.
