Since becoming the Minister for Care and Mental Health in September 2021, I have had the privilege of engaging and meeting with many people with a learning disability, autistic people and their families, carers and many dedicated health and social care staff. It deeply saddens me to hear some of the stories they have shared of experiences of poor health and care service provision and the premature loss of a loved one. That is why today I would like to acknowledge the publication of the sixth annual report of the “Learning from lives and deaths—People with a learning disability and autistic people” (LeDeR) programme compiled by the King’s College University and its partners (University of Central Lancashire and Kingston and St George’s Universities). A copy of the sixth annual LeDeR report will be deposited in the Libraries of both Houses.
The annual LeDeR report remains a crucial source of evidence that enables us to build up a detailed picture of the key improvements needed, both locally and at a national level, to tackle existing health disparities faced by people with a learning disability. It is an important step that as of January 2022, LeDeR reporting will be inclusive of the deaths of autistic people. This new information will be included in next year’s report.
It is encouraging that the sixth LeDeR report found that the life expectancy of a person with a learning disability has improved by one year for both males and females in 2021. The report also highlighted the phenomenal work of learning disability liaison nurses whose role in acute hospitals settings has been
“valued as a bridge between the principles and the provision of good care”.
This signals some improvement in the right direction, but there is much more to be done, such as reducing the number of avoidable and excess deaths of people with a learning disability.
I must acknowledge the unique circumstances that the pandemic presented in 2021; for the second year in a row covid-19 remains the leading cause of death for people with a learning disability. The LeDeR report highlights that during 2021 the rate of excess deaths from covid-19 was more than two times higher for people with a learning disability compared to the general population.
The report shows that people with a learning disability who were unvaccinated were nine times more likely to die of covid-19 than another cause compared to those who were vaccinated. These findings highlight the importance of the vaccination programme and the sustained focus on its roll out and uptake. NHS England have continued to engage on the delivery of reasonable adjustments in the vaccination programme and are offering a further booster in autumn 2022 for adults who are in a clinical risk group following the success of last year’s autumn booster programme.
We have made it clear throughout the pandemic that blanket application of “do not attempt cardiopulmonary resuscitation” (DNACPR) decisions is never appropriate. Concerningly, the report highlights an increase in the proportion of deaths in which the reviewer was unable to determine whether the process for making a DNACPR decision had been correctly followed. Whether the process for DNACPR decisions were correctly followed and completed properly were unknown for around a third of people whose deaths were reviewed in 2021 due to insufficient data. We will continue to monitor this closely and measure the impacts of steps already taken and planned to address inappropriate DNACPR decisions and recording of decisions, including the new requirement which came into force on 1 April 2022, requiring GPs to record conversations about end-of-life care and DNACPRs as part of annual health checks.
There have been recurring themes in previous years’ reports that have prompted action, and some are present once again in this year’s report. Amongst these, the most prominent were the need for greater learning disability and autism awareness training, and the significant under reporting of deaths and increased health disparities among people from an ethnic minority.
I am pleased that we are taking action to address these issues. As of June 2021, NHS England have begun carrying out focused reviews for every death of a person from an ethnic minority that is reported to LeDeR.
The Government have introduced a new requirement in the Health and Care Act 2022 requiring Care Quality Commission registered service providers to ensure their employees receive learning disability and autism training appropriate to their role. Significant progress has been made on the Oliver McGowan mandatory training programme to support this new requirement, with over 8,000 people participating in the trials in 2021. A final evaluation report was published in June 2022 which will inform next steps. This action will help to ensure health and social care staff have the skills and knowledge to provide safe, compassionate, and informed care.
NHS England has published its action from learning report alongside the sixth LeDeR report, setting out a range of work taking place to improve the safety and quality of care to reduce early deaths and health disparities. We will continue to work with all our partners to ensure we are tackling the issues raised with urgency.