People with learning disabilities ‘dying too young and from preventable causes’

People with learning disabilities are dying young from preventable causes due to disjointed access to health checks, a think tank has warned.

The Nuffield Trust described the situation as “appalling” and called for immediate action to bolster access to preventative checks for the likes of obesity, as well as improving screening for cancers and addressing mental health problems.

According to its report, a little over half of those with a learning disability who were eligible for bowel cancer screening had the test compared with two-thirds of those eligible with no learning disability.

The trust’s analysis of NHS data also found a 36% gap in the screening rate for cervical cancer.

People with learning disabilities were also more likely to be obese in their teenage years and young adulthood, the Nuffield Trust said, with an average of 7.5% living with a type 2 diabetes diagnosis last year compared to 5.1% of people without a learning disability.

The report found people with learning disabilities were also less likely to be referred for talking therapies to combat poor mental health and that 30,000 adults with learning disabilities were taking psychotropic medicines with no diagnosis.

Nuffield Trust fellow Jessica Morris said: “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 co-ordinated, 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.”

NHS Providers welcomed the Nuffield Trust’s call, with chief executive Sir Julian Hartley revealing trust leaders “are concerned too many people aren’t getting the support they need and should expect”.

“Trusts know that there is more that they can do to improve the quality of care for everybody but we need greater national action to ensure there are enough staff with the right skills and experience to support people with a learning disability and to make sure that the full range of services which people need are funded properly and prioritised nationwide,” 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.”

Jonathan Beebee, professional lead in learning disabilities at the Royal College of Nursing, said the Nuffield Trust’s findings were “a damning indictment of the way health inequalities have been allowed to flourish”.

He added that specialist nurses “have a crucial role in supporting those with learning disabilities to receive care” 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 said: “Learning disability students were the most affected group by the removal of the nursing bursary leading to a sharp decline in applications.

“The Government must take action to boost the numbers by incentivising students and paying nurses fairly upon registration. Failure to do so will only worsen the crisis in learning disability healthcare.”

A Department of Health and Social Care spokesperson said: “We know people with a learning disability can face barriers to accessing the right health care and support, and we are working hard to remove these.

“After work to establish evidence on this, we introduced mandatory training on learning disability and autism for all health and care staff, and since July 2022, all providers registered with the Care Quality Commission are required to ensure their staff receive specific training on learning disability.

“79.8% of people on a GP learning disability register had an annual health check in 2022/23 – an increase from previous years – which will be crucial to early identification of any health issues.”