People with a learning disability are facing ‘persistent and widespread’ safety risks when in hospital, according to a damning new report.
The comprehensive national investigation from the Health Services Safety Investigations Body (HSSIB) shows that the needs of learning disability patients are ‘not consistently met’ when they are cared for in hospital. It also highlights how poorer outcomes and avoidable illness are leading to premature death for those with a learning disability.
The biggest safety risks relate to the lack of accessible information that sets out patient needs and enables staff to make reasonable adjustments as well as limited support for staff who are not specialists in caring for patients with a learning disability.
For example, in the report, staff with responsibility for assessing mental capacity described how publications are limited in considering the variations of how a person with a learning disability may present and provide limited guidance on dealing with ambiguous situations.
This report is intended for health and care organisations, policymakers and the public to help improve patient safety in relation to the care of adults with a known learning disability when in an acute hospital setting. The report focuses on people referred urgently for hospital admission from a community setting, such as a person’s home or residential home.
HSSIB spent time with more than 20 different people with a learning disability and their families and carers. The investigation visited these individuals in acute hospitals, supported living, day centres and their own homes.
Investigators saw how each person had different and varying levels of needs and concluded that ‘it was evident that forming long-term friendships, adapting communication and having a regular routine were important to many’. Carers told them routines cannot be broken, because without them some people would be ‘completely lost’.
The conversations also highlighted that people with a learning disability may have particular needs when it comes to communication. For example, one person interviewed had to talk through each part of their body before they could identify where they were feeling pain.
Clare Crowley, Senior Safety Investigator at the Health Services Safety Investigations Body (HSSIB), said: “In the UK it is estimated over 900,000 adults have a learning disability. 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.
“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 learning disabilities.
“The reference case we looked at and the conversations we had with those who have lived experience 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. The recommendations we have made are aimed at reducing the safety risks, tackling inequity in care, and supporting the delivery of safe care to people who may be at their most vulnerable.”
To understand how challenges in providing care to those with a learning disability could be met at a system level, HSSIB looked at and gathered evidence in five other areas:
It found that the health and care system is not always designed to effectively care for people with a learning disability and those who are admitted to an acute hospital are often cared for by staff without specialist training, skills and experience in working with people with a learning disability. These staff often have limited support and are unable to take the time they would like to meet the person’s needs.
In addition, there is no standard model or national guidance for an acute learning disability liaison service meaning that there is variation in how these services are funded, their availability, the size of teams and what they are expected to do.
The quality of learning disability services is currently monitored via the learning disability improvement standards annual benchmarking survey which is funded until the end of 2023/24. Yet, decisions on future years have yet to be made.
A key finding was that there is no national shared system with a single point of access for storing and managing information about the needs of people with a learning disability and the reasonable adjustments required for each individual. This has been a persistent recommendation from the LeDeR (Learning from Lives and Deaths People with a Learning Disability and autistic people) programme, which was established in 2017 to improve healthcare for people with a learning disability and autistic people.
Current mechanisms for sharing information about a person – such as ‘care passports’ (a document that gives staff helpful information about the person’s health and social needs, including their preferred method of communication, likes and dislikes) and alert flags (a way to highlight key information to staff) on the electronic patient record – can be unreliable. Instead, information is often gathered from friends and family.
The report sets out eight key findings and makes four safety recommendations. The first is that NHS England develops and issues learning disability liaison nursing service best practice and workforce guidance to all acute hospitals. This is to help local decision making about specialist learning disability provision and enable appropriate support for people with a learning disability and the staff who care for them.
It also recommends the commissioning of guidance on the practical assessment of the mental capacity of people with a learning disability in acute hospitals and standard information for the health and care passport.
Continuing to assess care provision via the annual learning disability survey is also advised. There are three suggested actions for Integrated Care Boards to aid improvement at a local level.
NHS Providers said that the report bolsters longstanding concerns over the gaps in care provided to patients with learning disabilities.
Saffron Cordery, deputy chief executive, said: “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.
“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.”
