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More training needed to end ‘scandal’ of avoidable deaths in learning disability patients

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Non-specialist nurses need more training in caring for patients with learning disabilities in order to end the “scandal” of avoidable deaths, a charity has claimed in a new report, which also said two-thirds of health professionals wanted more training in the area.

Lack of training for hospital nurses and other healthcare staff could be leading to 1,200 avoidable deaths a year for people with a learning difficulty, said Mencap today at the start of a new campaign.

“A quarter of health professionals say they have never been given training on learning disability”

Jan Tregelles

Research commissioned by Mencap found 66% of health professionals said they wanted more training focused on patients with a learning disability, with 23% saying they had never attended specific training for treating this type of patient – despite the law placing a duty on the NHS to treat everyone equally.

In addition, more than a third of the respondents said they thought the quality of care for patients with a learning disability was worse than that received by other patients. Almost three quarters – 71% – of the health professionals surveyed for the learning disability charity described themselves as nurses.

Under the Equality Act 2010, public sector organisations must ensure – by way of “reasonable adjustments” – that they are as accessible to disabled people as to everyone else.

It might mean using simpler language or communication aids, allowing more time for appointments or adjusting how someone is fed, noted the charity.

Mencap’s latest campaign – Treat me well – demands that no health professional should be able to set foot in a hospital without having been trained about learning disability.

“Nursing staff want to deliver the best possible care to every patient, but they need the right education”

Janet Davies

But Freedom of Information requests suggested that 47% of hospital trusts did not include information on learning disabilities in their induction training for clinical staff.

Requests to universities found only 41% of nursing courses covered the Accessible Information Standard, despite it being mandatory in all health and social care setting in England. In contrast, the research indicated that most adult nursing courses – 86% – did include teaching on reasonable adjustments.

Meanwhile, a survey of patients found 21% of people with a learning disability thought that healthcare staff were “bad at explaining things” to them when they were at a hospital.

Three quarters of the 500 people with a learning disability surveyed said their experience of hospital would be improved if staff explained things in an easy-to-understand way.

Mencap highlighted that it had been known for a decade that people with a learning difficulty had a higher mortality rate from avoidable causes. Figures show that 38% of people with a learning disability die from avoidable causes, compared to 9% of the general population.

It also noted that, last September, a coroner’s court had ruled neglect and “gross failures” in care had contributed to the death of Nicholas Jones, a 27-year-old man with autism.

The charity’s report stated that, while many hospitals “rely heavily” on learning disability liaison nurses, 27% of hospital trusts had no specialist learning disability staff at all.

It highlighted that the 2013 Confidential Inquiry into Premature Deaths of People with a Learning Disability (CIPOLD) had found the number of learning disability nurses had fallen by a third.

The same CIPOLD investigation found that learning disability nurses were only effective during the hours they were in post, warned the charity’s report – titled Treat me well: Simple adjustments make a big difference.

Its report noted that “in most hospitals there are long periods in the week, such as during the night and weekends, where the learning disability liaison nurse may not be present”.

It cited particular barriers to equal healthcare for people with a learning disability as staff not understanding learning disability, failure to make a correct diagnosis, carers not being allowed enough involvement, feeling anxiety towards people with a learning disability, and inadequate aftercare.

Jan Tregelles, chief executive at Mencap, said the current situation could not be allowed to continue.

Jan Tregelles chief executive of Mencap

Jan Tregelles chief executive of Mencap

Jan Tregelles

“Every day three people with a learning disability die avoidable deaths,” she said. “Yet a quarter of health professionals say they have never been given training on learning disability.”

While NHS England had made efforts to improve the situation, more action was needed to make sure all health professionals received the relevant training, she added.

“Government and NHS England must now ensure no healthcare professional steps foot in a hospital without having training on providing healthcare to people with a learning disability,” she said. ”We know health professionals want this too.”

Janet Davies, chief executive and general secretary of the Royal College of Nursing, said the “scandal” of so many avoidable deaths must be ended.

“Nursing staff want to be able to deliver the best possible care to every patient, but they need the right education to be able to do that,” she said.

Janet davies

Janet davies

Janet Davies

She added: “Providers and commissioners of healthcare must offer every member of the nursing team training in how best to meet the needs of people with learning difficulties.”

As part of the research, polling firm YouGov questioned 506 healthcare professionals and 500 people with learning difficulty.

Freedom of Information requests were sent to English universities offering undergraduate courses in adult nursing or under/postgraduate courses in medicine, as well as to trusts.

Summary of survey and FOI findings

YouGov survey of more than 500 healthcare professionals revealed:

  • 23% of healthcare professionals have never attended training on meeting the needs of patients with a learning disability
  • 66% of healthcare professionals wanted more learning disability training
  • 37% of healthcare professionals think the quality of healthcare received by patients with a learning disability is worse than that received by patients without a learning disability
  • 45% of healthcare professionals think that a lack of training on learning disability might be contributing to the avoidable deaths of people with a learning disability
  • 59% think the issue of avoidable deaths doesnot receive enough attention from the NHS

Freedom of Information requests sent to trusts and English universities offering courses in medicine, or adult nursing revealed:

  • 47% of hospitals do not include information on learning disability in their induction training for clinical staff
  • 22% of universities do not include training on making reasonable adjustments to the care of someone with a learning disability (which are a legal duty under the Equality Act 2010) in their undergraduate medicine degree

Survey of 500 people with a learning disability revealed:

  • 21% think that healthcare staff are bad at explaining things to them when they are at the hospital
  • 75% said their experience of going to the hospital would be improved if staff explained things in a way that was easy to understand.ved if staff explained things in a way that was easy to understand
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Readers' comments (1)

  • Susan Smith

    Employ RNLD's on wards. I work with RGN's and RMN's and the skills mix enables us to learn from eachother. From my experience hospitals are reluctant to employ RNLD's due to them assuming that we do not have clinical skills. They are absolutely wrong and should overcome their ignorance by learning more about what we do.

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