This conclusion was drawn from a comprehensive national investigation examining the inpatient care of adults with a known learning disability.
The report says that there is a commitment across the NHS to improve the experience of care for those with a learning disability but that, ‘persistent and widespread’ safety risks remain. The report also points to multiple studies and reports which continue to evidence poorer outcomes, avoidable illness and premature death for those with a learning disability.
The report reveals that current systems and processes within the NHS are not always designed to enable staff to deliver effective care to people with a learning disability.
Biggest safety risks
Our investigation found that the biggest safety risks related to:
- The lack of accessible information that sets out patient needs and enables staff to make reasonable adjustments.
- Limited support, whether that is through training or within the clinical environment, 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.
The identified safety issues were illustrated in the patient case examined in the investigation. A 79-year-old male patient was admitted to a hospital unit following a referral from his GP who was concerned about the deterioration of several health problems.
The patient’s condition deteriorated 14 days after he was admitted, and he sadly died after suffering a cardiac arrest. In analysing the details of his case, we identified that during his time in hospital, his needs ‘were not consistently documented or met’. For example, his hearing impairment was not addressed, meaning staff were unable to effectively communicate with him.
As part of our wider investigation, 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. The investigation saw how each person had different and varying levels of needs. The report says that ‘it was evident that forming long-term friendships, adapting communication and having a regular routine were important to many’ and that 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.
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:
- assuring delivery of high-quality care
- information sharing and accessibility
- the learning disability specialist workforce in acute hospitals
- supporting the wider hospital workforce
- societal beliefs and values.
The report sets out eight key findings and makes four safety recommendations.
These are focused on providing guidance on: the learning disability liaison workforce, how to assess mental capacity in practice, 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.
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.”