Increased challenges for people with a learning disability

In our learning disability provider collaboration review (PCR), we looked in depth at the care and support for people with a learning disability living in the community.

Many of the issues that emerged from our review are not new. In a lot of cases, the pandemic simply served to shine a light on the pre-existing challenges, gaps and poor-quality care.

But it also posed increased risks. For example, we know that people with a learning disability have an increased risk of respiratory illnesses and a higher prevalence of asthma, among other health concerns. Among other factors, these can make them more vulnerable to COVID-19.

Figures published during the pandemic suggest that, between January 2020 and 20 November 2020, the risk of death involving COVID-19 for people with a learning disability was greater for both men and women even when adjusting for a range of personal and household characteristics. Between 10 April 2020 and 31 March 2021, we identified notifications of the deaths of at least 1,633 people with a learning disability or autistic people, from services identified as caring for people with a learning disability or autistic people. This was 3% higher than the 1,581 deaths notified in the comparable period in 2019/20. Of these 1,633 people, 486 were identified by the provider as deaths involving either suspected or confirmed COVID-19.

In our PCR, we found that the physical healthcare needs of people, including how COVID-19 may present in people with a learning disability, were not always taken in account by systems.

Some systems we looked at had a clear plan for the delivery of services for people with a learning disability and had made changes in response to the pandemic. But people still faced difficulties in accessing services – including day services, education placements, respite care and health services (GPs, dental, mental health). This caused people distress and, in some cases, led to a deterioration in people’s health. It also led to some people expressing their distress in ways that affected others living with them. For example, we heard that the loss of routine due to school and respite care being stopped caused distress for one child, and this led to them expressing this in way that others found difficult. The child’s parent also believed that the disruption caused their epilepsy to become less well controlled, and meant the child needed hospital treatment.

Research from the University of Bristol, which looked at the deaths of 206 people with a learning disability from COVID-19 between March and June 2020, also found that access to care could be problematic. In particular, their report highlighted issues around the responsiveness of NHS 111, access to COVID-19 tests, and access to specialist learning disability nurses.

In our learning disability PCR, we also found issues with care planning and transition planning between child and adult services for people with a learning disability. In the majority of areas, we heard that either it was not present or it was weak. Some areas told us that there were no existing transition planning pathways. Not planning and coordinating the care of people with a learning disability when moving between child and adult services can mean that they do not always get the right care and support that meets their needs. As we recommended in our 2020 report Out of Sight – who cares?, there needs to be a clear focus on support during transition periods between services and from childhood to adulthood.

Not only did COVID-19 serve to highlight these issues, but the pandemic had made transitions even harder because of a lack of effective assessments and not being able to meet new providers and care organisations. Organisations across local areas need to work together to ensure that transition planning is made a priority for improvement.

Despite these challenges, people with a learning disability generally felt well informed about the pandemic and why they could not see friends and family, and how to stay safe. A range of communication techniques and strategies, such as easy reads, had been used to help keep people informed and reduce anxieties.

To try and prevent or minimise disruption to services, providers and voluntary sector organisations increasingly turned to digital technology. This improved collaboration between services, and gave people with a learning disability who had access to digital devices, and the skills to use them, access a broader range of activities, social groups and educational tools and resources.

However, not everyone had access to or felt comfortable using digital technology. Some people with a learning disability were able to adapt to virtual communication methods, but others could not. It also made it more difficult for health and social care professionals to pick up subtle clues about mental health and wellbeing, and led to increased safeguarding concerns.

Providers and systems will need to understand and manage the impact of the pandemic on people with a learning disability, including children and young people, and the long-term effects of service disruption. This includes ensuring that any health inequalities and specific needs relating to protected characteristics such as ethnicity, age and gender, are part of a system-wide strategy. In line with recommendation two in the 2020 annual report of the Learning Disabilities Mortalities Review (LeDeR) programme, systems need to act to reduce disparities and ensure that people are able to remain in their communities and lead their best lives.

We are carrying out a year-long programme of work to transform the way we regulate services for people with a learning disability and autistic people. Following the recommendations of the independent review by Professor Glynnis Murphy and from our report, Out of sight – who cares?, we have improved our inspection methodology to focus on the culture of services and on identifying where people living in hospitals and care services may be at a greater risk of poor quality of life.

Where services have a good culture and staff are engaged, we have seen people leading their best lives. However, we have found:

• that getting the right staff with the right skills has become increasingly difficult during the pandemic, resulting in people’s needs not always being well met by staff who respect and value them
• cultures where restrictive practice is frequently used – people are observed and followed rather than interacted with and given opportunities to develop skills and a meaningful life
• that some people have become stuck in services and not able to move on to a community place
• some people moving into care services during the pandemic without good planning and support, which has stopped them settling in – this is distressing for them and disruptive to others
• fewer face-to-face visits from families, commissioners, professionals and providers has made it more difficult to identify when closed cultures could be developing
• that quality assurance systems, which check that good care happens around the clock, supported by every member of staff, have never been more important.

Next page

Rising demand for mental health care

Previous page

Health inequalities further exposed