Deaths of people with learning disabilities ‘could be avoided’

The pandemic highlighted pre-existing gaps in the quality of the care people with learning disabilities received in the community, a report by the Care Quality Commission (CQC) has revealed.

The CQC’s provider collaboration review, which looked at the care and support available in seven areas of England in March 2021, found that many people with a learning disability were at increased risk from Covid-19 during the pandemic due to pre-existing conditions.

The review found that many premature deaths could be avoided by giving people equal access to health and social care services. This includes making sure that health and social care professionals have the appropriate knowledge and skills.

The report found that the physical healthcare needs of people, including how Covid-19 may present in people with a learning disability, were not always taken into account by care systems.

In more than one area it heard that the health inequalities of people from Black and minority ethnic communities with a learning disability were relatively unknown.

On average, men with a learning disability die 23 years earlier and women 27 years earlier than the general population, often of preventable causes.

The 2020 annual LeDeR report highlighted that people of Asian or Asian British ethnicity were 9.2 times more like to die between 18 and 49 years than a white British person.

Given the increased health risks faced by people with a learning disability, particularly people from Black and minority ethnic communities, the CQC said that it is concerned by the lack of focus on health inequalities. And that systems need to consider why this has been overlooked and what actions need to be taken to address this.

Healthcare services

The report also found that people’s experiences of accessing healthcare services, including GPs, mental health and dentistry, during the pandemic were variable.

People experienced delays in accessing health care. This is reflected in the results of the Coronavirus and People with Learning Disabilities Study, which found that people who usually saw their healthcare professional regularly reported seeing them less or not at all since March 2020.

Despite all of the areas the CQC looked at recognising the importance of annual health checks, pressures caused by Covid-19 affected their ability to complete these checks. This means that many vulnerable children, young people and adults did not always have the oversight of their health that they needed.

A few areas identified the need to ensure providers and staff across the system understood the health inequalities experienced by people with a learning disability. In particular, one trust had identified that A&E staff needed better training.

Areas that were better at meeting people’s needs highlighted the importance of having specific staff dedicated to learning disability roles. This included, for example, learning disability liaison nurses or health and wellbeing coaches with a specific interest in people with a learning disability.

These staff provided specialist advice and ensured that the needs of people with a learning disability were met when they accessed health services. 

National guidance

The report also found that national guidance was confusing and had not considered the needs of people with a learning disability. For example, exemptions for people with a learning disability leaving the house for exercise were only included after lobbying.

In April 2020 Social Care Today spoke with a support worker whose employer instructed him to ‘leave service users in the street’ because he did not have the power to force them to lockdown under the Mental Capacity Act (MCA).

People’s experiences of care and support were also varied. How well services were meeting people’s needs was often down to pre-existing relationships with families, or good working relationships between individual practitioners.

The CQC also heard examples of how individual professionals had stepped outside of their usual roles and responsibilities, going above and beyond to ensure that care was safe and sustainable.

It said it knows that how it regulates services that support people with a learning disability needs to improve.

In response to the report, the CQC said it is carrying out a year-long programme of work to transform the way we regulate services for people with a learning disability and autistic people.

Minister for care, Helen Whately said the Department of Health and Social Care is working to provide the right support for people with learning disabilities.

‘People with a learning disability and autistic people should receive the best possible care.

‘Sadly, as this report shows, too often this is not the case and some of the stories I have heard are devastating. I want to thank the CQC for their important work on this and we will be taking forward their recommendations.

‘The rights of people with a learning disability or autistic people must be protected, and they should receive high-quality care in the least restrictive way possible.

‘We are working to put in place the right support in the community and as part of the £31m for learning disability and autism services in the mental health recovery package, we will be providing targeted support for people in mental health units and helping people live fulfilling lives in the community.’

Photo Credit – SJ Objio, Mufid Majnun