Jewish patients risk missed diagnoses amid NHS disability care failings

Jewish people with learning disabilities risk having symptoms missed and diagnoses delayed because the NHS does not always understand how they communicate pain and illness, two leading communal charities have warned.

Norwood and Kisharon Langdon say people they support can struggle at every stage of receiving healthcare, from long waits and unfamiliar hospital environments to explaining symptoms and having their individual needs understood.

Their warnings come after Baroness Louise Casey, chair of the government’s independent commission into adult social care, said last week that NHS hospitals were “unable to sufficiently treat and look after people with learning disabilities”.

In an exclusive interview with ITV News, Casey said inadequate NHS care was one reason people with learning disabilities die more than 20 years earlier than the wider population. She said patients were too often not “seen” or “heard” by medical professionals.

For Norwood chief executive Naomi Dickson, Casey’s warning reflects problems already being experienced by Jewish families.

“Baroness Louise Casey’s warning that the NHS is failing people with learning disabilities reflects what we see too often in our work supporting Jewish people with learning disabilities and their families,” she told Jewish News.

Dickson said the consequences can become particularly serious when someone cannot easily explain that something is wrong.

“Someone with a learning disability may struggle to identify or communicate where they are experiencing pain, while healthcare professionals may not have the time, information or confidence to understand how that person expresses discomfort or distress,” she said.

“The result can be repeated history-taking, missed symptoms, delayed diagnosis and unnecessary distress.”

One case highlighted by Norwood shows how those difficulties can continue even when hospital treatment has finished.

Robbie, a Jewish man with learning disabilities, was admitted to St Bartholomew’s Hospital after his parents could no longer care for him at home.

Although medically fit to leave, his family faced a prolonged struggle to secure an appropriate care package and somewhere suitable for him to live.

His brother Jeremy insisted Robbie should not be discharged without proper arrangements in place.

After extensive advocacy by his family and support from the hospital’s disability nurse, a placement with Norwood was eventually agreed. When there was a delay before Robbie could move into his new home, the charity provided outreach support so he could temporarily return to his father rather than remain unnecessarily in hospital.

But for Robbie and his family, finding somewhere safe was only part of the issue.

“For Robbie, the right care was not simply about having somewhere to live,” Dickson said.

“His Jewish identity mattered to him. He wanted to keep kosher and be supported by a Jewish provider, while remaining connected to his synagogue and community.”

The result can be repeated history-taking, missed symptoms, delayed diagnosis and unnecessary distress.

Kisharon Langdon chief executive Richard Franklin said similar consideration of an individual’s needs should run throughout healthcare.

“People with learning disabilities and autistic people have the same right to high-quality, appropriate healthcare as everyone else, yet too often the health system is not set up in a way that enables them to access it,” he told Jewish News.

“We see how difficulties with communication, unfamiliar environments, long waits and a lack of understanding of individual needs can make accessing healthcare particularly challenging.”

For Jewish patients, Franklin said those individual needs can extend to religious practice, food, modesty and the involvement of relatives and carers.

“These are not reasons why someone should receive different care, but they are important aspects of person-centred care that need to be understood and respected,” he said.

Both charities say changes do not always need to be complicated.

Dickson suggested appointments at quieter times of day, greater continuity between healthcare professionals, home visits where appropriate and allowing a trusted relative or support worker to accompany a patient.

A health passport containing information about someone’s medical history, communication needs, behaviour and preferences could also prevent families repeatedly having to explain the same information to different professionals.

We need a health service where people with learning disabilities and autistic people are not simply accommodated within an existing system, but where their needs are considered from the outset.

Crucially, Dickson said, medical staff need to listen to those who know the patient best.

“For many of the people we support, parents and siblings have spent decades understanding how they communicate, how they behave when they are in pain and what is normal for them,” she said.

“Their observations can be essential clinical information, not an optional extra.”

Franklin agreed that reasonable adjustments should be regarded as a basic part of healthcare rather than something extra.

“This means taking the time to understand how an individual communicates, making information accessible, allowing sufficient time for appointments and ensuring that staff have the knowledge and confidence to support people with learning disabilities and autistic people appropriately,” he said.

The concerns come after Jewish News reported in July on a Jewish mother-of-five Shona Bergson, who described spending 16 years navigating support systems after her son was diagnosed with autism.

Bergson spoke about the exhaustion of repeatedly pursuing assessments and support, telling Jewish News: “For me, I just burn out with that.”

At the time, Norwood said parents “frequently report having to fight for their child’s needs to be recognised and met”.

The latest warnings focus on what can happen when those difficulties extend into healthcare, where failing to understand a patient’s needs can have medical consequences.

Norwood says the issue will become increasingly pressing for the community. Its research indicates there will be around 420 Jewish adults with moderate to severe learning disabilities in Barnet and Hertsmere alone by 2027.

Franklin said the aim should be a system designed with people with learning disabilities in mind from the beginning.

“We need a health service where people with learning disabilities and autistic people are not simply accommodated within an existing system, but where their needs are considered from the outset,” he said.

“Better training, stronger communication between health and social care, and genuine involvement of people and their families in decisions about their care would make a meaningful difference.”

NHS England told ITV News that specialist learning disability nurses now work in general acute hospitals to support patients with physical health problems. People with learning disabilities are also eligible for annual health checks, while medical records can include an adjustment flag alerting staff to specific needs.

The Department of Health and Social Care said the poor health outcomes and lower life expectancy experienced by people with learning disabilities were “unacceptable” and said mandatory learning disability and autism training was being rolled out for health and care staff.

Casey’s commission is reviewing the future of adult social care in England, with its final recommendations expected in summer 2027.