‘Gaps’ in preventative care for people with learning disabilities

The Nuffield Trust, a health think tank, has published new research today into the prevention of early deaths among this population.

“It’s appalling that so many people with a learning disability are dying too young and from preventable causes”

Jessica Morris

The report highlighted the late diagnosis of cancer for people with learning disabilities, as well as their higher rates of obesity, mental health problems and variations in access to and quality of their free annual health checks.

These issues, the report said, have led to people with a learning disability dying on average 20 years earlier than people without one.

As a result, Nuffield Trust advocated for an improvement in preventative healthcare.

The think tank recommended NHS England reviews the quality of annual health checks for people with learning disabilities.

These checks are offered for free to anyone over the age of 14 who is on their local GP learning disability register.

They are carried out by primary care staff, and are designed to help spot early signs of ill health to reduce preventable emergency hospital presentations.

As well as this, they are a chance for healthcare staff to promote healthy living, including diet advice.

However, Nuffield Trust’s research suggested that while the number of people receiving these checks has improved (80% of over 14s on the register in 2022-23 compared with 72% in 2021-22 and 58% in 2019-20), the register itself needs to grow.

Only around 26% of people in England with a learning disability are on the register, and Nuffield Trust said the proportion was “likely” even lower for those from Black and minority ethnic (BME) backgrounds.

As well as this, the report found “considerable variation” in the quality of these health checks and what they included.

It found that health checks were focusing too much on “previously identified health needs” rather than the designated preventative role and that health action plans were not always being completed despite them being a “key” element of the check.

Nuffield Trust highlighted evidence from Learning from Death Reports (LeDeRs) that health checks were sometimes found to be missed opportunities to promote health and explore long-term conditions.

To address this, the report said NHS England should undertake a national review of the quality of these checks for people with a learning disability, including an audit of how well GP practices are doing at identifying their patient base, arranging the health checks, performing them and helping follow-up actions.

Nuffield Trust also identified gaps in preventative care specifically relating to cancer.

According to the report, people with learning disabilities have a higher risk of developing bowel cancer. However, they have a “significantly lower level” of uptake for NHS cancer screening programmes.

A decrease in learning disability nurses, the report said, was potentially a contributing factor to this.

It read: “Staff and family carers may be concerned about invasive investigations that could cause distress and so participation may not be seen as a priority.

“For bowel screening, staff and family members may struggle with supporting the collection of stool samples.

“Further, despite evidence that learning disability nurses can improve the uptake of screening through their provision and coordination of support, their number has decreased by 42% since 2010.”

Royal College of Nursing (RCN) professional lead for learning disabilities nursing Jonathan Beebee said the report’s findings were a “damning indictment” of the state of healthcare.

Jonathan Beebee

“People with learning disabilities can have complex health needs and often face barriers in accessing health care services,” said Mr Beebee.

“This includes vital prevention services such as cancer screening, vaccinations and annual health checks.

“Learning disability nurses have a crucial role in supporting those with learning disabilities to receive care, both in hospitals and across community settings.

“But their numbers have fallen by over 42% in the last decade, leaving some of the most vulnerable without vital support and putting their health at risk.”

Mr Beebee reiterated his union’s calls for the UK Government to boost the numbers of nurses being trained, in particular those in the learning disability nursing specialty.

“Failure to do so will only worsen the crisis in learning disability healthcare,” he said.

“This report should act 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 integrated care boards to use local data to help GP surgeries bring more people with learning disabilities to join the local register.

In addition, it said all NHS and social care providers needed to train their staff in the use of reasonable adjustment digital flags, which are attached to patient records and immediately alert staff to any reasonable adjustments needed.

Nuffield Trust further recommended improving access to tailored weight management programmes for people with learning disabilities and bolstering the number of health and social care staff – including liaison nurses – to help improve care coordination.

Julian Hartley

Responding to the report, NHS Providers chief executive Sir Julian Hartley welcomed the recommendations put forward.

Sir Julian said that trusts needed “greater national action” to make sure they have enough staff with sufficient training in learning disability care to offer the improvements Nuffield Trust called for.

He added: “Overstretched services and staff right across the health and care system are working flat out to provide the best care possible.

“We need a joined-up approach to tackle disparities in access to, and outcomes from, healthcare for people with a learning disability plus much greater capital investment so that patients get the care they need in the right environments.”

Nuffield Trust fellow Jessica Morris added: “It’s appalling that so many people with a learning disability are dying too young and from preventable causes, but it doesn’t have to be this way.

“We will not begin to improve access to services for people with a learning disability unless access to much-needed preventive health services becomes less disjointed and adjustments are made to make services as accessible as they are for everyone else.

“Ultimately, people with a learning disability need access to timely and effective healthcare, where care is well coordinated, and signs and symptoms of illness are picked up early.

“While our research has focused on some major areas of healthcare for people with learning disabilities, there is much more work to be done to understand and change the inequitable health outcomes they are experiencing.”