Urgent action is needed to improve preventive care for people with learning disabilities by reforming annual health checks and increasing staffing, a new report has warned.
Health think tank the Nuffield Trust has today published new research into preventing premature deaths in this population.
“It’s shocking that so many people with learning disabilities are dying at a young age from preventable causes.”
Jessica Morris
The report found delayed cancer diagnosis among people with learning disabilities, higher rates of obesity and mental health problems, and uneven access to and quality of free annual health checks.
The report said these problems meant that people with learning disabilities died on average 20 years earlier than those without.
As a result, the Nuffield Trust has advocated for improvements in preventive care.
A think tank has recommended NHS England review the quality of annual health checks for people with learning disabilities.
These tests are free and available to anyone aged 14 or over who is on their local GP’s learning disability register.
These are run by primary care staff and are designed to help spot early signs of illness and reduce preventable emergency admissions to hospital.
Additionally, it provides an opportunity for healthcare professionals to promote healthy living, including providing dietary advice.
But research from the Nuffield Trust suggests that while more people are receiving these cheques (80% of those aged 14 and over will be enrolled in 2022-23, compared with 72% in 2021-22 and 58% in 2019-20), the numbers enrolling themselves need to increase.
The Nuffield Trust says that just 26% of people in England have a learning disability and that the proportion is “probably” even lower for people from black and minority ethnic (BME) backgrounds.
The report also found that there was “considerable variation” in the quality and content of these checks.
They found that health checks were too focused on “previously identified health needs” rather than their designated preventive role, and that health action plans were not always completed, despite being a “key” component of health checks.
The Nuffield Trust highlighted evidence from Learning from Death Reports (LeDeRs) that health checks can miss opportunities to promote health and investigate long-term medical conditions.
To address this issue, the report says NHS England should carry out a national review of the quality of health checks for people with learning disabilities, including an audit of how well GP practices identify patients, arrange and deliver checks and support follow-up activities.
The Nuffield Trust has also identified gaps in preventive care specifically relating to cancer.
People with learning disabilities are at higher risk of developing bowel cancer, but uptake of NHS cancer screening programmes is “grossly low”, according to the report.
The report said a decline in the number of learning disability nurses may be one factor contributing to this.
It said: “Staff and family carers may be concerned about invasive testing that may cause distress and therefore participation may not be seen as a priority.”
“In the case of bowel screening tests, staff and family members can struggle to support the collection of stool samples.
“And despite evidence that learning disability nurses can improve screening uptake rates through the provision and coordination of support, numbers have fallen by 42% since 2010.”
Jonathan Beebe, specialist lead for learning disability nursing at the Royal College of Nursing (RCN), said the report’s findings were a “scathing indictment” of the current state of care.
Jonathan Beebe
“People with learning disabilities can have complex health needs and often face barriers to accessing health services,” Mr Beebe said.
“This includes important preventive services such as cancer screenings, immunizations and annual health checks.
“Learning disability nurses play a vital role in supporting people with learning disabilities to access care, both in hospital and in the local community.
“But over the past decade, those numbers have fallen by more than 42%, leaving some of the most vulnerable people without access to vital support and putting their health at risk.”
Beebe reiterated the union’s call on the UK government to train more nurses, particularly those specialising in learning disability care.
“If we don’t do this, the learning disability care crisis will only get worse,” he said.
“This report should serve as a catalyst to invest in this vital part of the nursing workforce and, in doing so, improve care for those who need it.”
The report also called for the Integrated Care Commission to use local data to help GP practices get more people with learning disabilities onto local registers.
It also said all NHS and social care providers must train staff on how to use the reasonable adjustments digital flag, which is attached to patient records and instantly alerts staff to any reasonable adjustments that are needed.
The Nuffield Trust also recommended improving access to tailored weight management programmes for people with learning disabilities and increasing the number of health and social care staff, including liaison nurses, to improve the coordination of care.
Julian Hartley
Responding to the report, Sir Julian Hartley, chief executive of NHS Providers, welcomed the recommendations set out.
Sir Julian said the trust needed “greater national action” to ensure it had enough staff well trained in learning disability care to deliver the improvements the Nuffield Trust was seeking.
He added: “Overstretched services and staff across the health and care system are working hard to provide the best possible care.”
“We need an integrated approach to tackling disparities in access to care and health outcomes for people with learning disabilities, and much greater capital investment to ensure patients receive the care they need in the right environment.”
Jessica Morris, fellow at the Nuffield Trust, added: “It’s saddening that so many people with learning disabilities are dying at a young age from preventable causes, but it doesn’t have to be this way.”
“We won’t begin to improve access to services for people with learning disabilities unless access to much-needed preventive health services is no longer fragmented and is tailored to ensure they have the same access as everyone else.”
“Ultimately, people with learning disabilities need access to timely and effective healthcare, where care is well-coordinated and signs and symptoms of illness are identified early.”
“Our research focuses on some key areas of healthcare for people with learning disabilities, but there is still much more to be done to understand and change the unequal health outcomes they experience.”