The government has launched a consultation on proposals to introduce mandatory learning disabilities and autism training for all nurses in England.
It said increasing awareness of these conditions and supporting professionals to reasonably adjust care to suit the needs of the patient would “certainly improve experiences and potentially save lives”.
The proposed training would be mandatory for all health and care staff who speak to or work with people with a learning disability or autism, but the level of education would vary depending on their job role, said the government.
The consultation document, published today, noted that difficulties faced by people with these conditions in accessing healthcare services could lead to “wholly avoidable hospitalisation, life-threatening illness, and premature death resulting from routine conditions”.
The Department of Health and Social Care is proposing that the training includes:
- How learning disabilities and autism affect different individuals
- The skills needed to support and care for someone with a learning disability or autism
- Relevant laws including the Human Rights Act, the Mental Capacity Act, the Equality Act and the Children and Families Act
- The difference between autism and learning disabilities
The training should also be developed and delivering in partnership with people with learning disabilities and autism, the consultation report noted.
In her foreword to the document, care minister Caroline Dinenage highlighted the “stark” difference in life expectancy for people with a learning disability and those without.
According to latest data for 2017-18, females with a disability die 18 years earlier than those without, and males 14 years earlier.
“I believe they would have known how to adapt their communication, using humour to settle his anxiety”
Since 2015, the deaths of people with a learning disability in England have been routinely monitored and reviewed through the Learning Disabilities Mortality Review (LeDeR) programme, delivered by the University of Bristol on behalf of NHS England.
The programme’s second annual report, released last May, found that in 13% of the deaths reviewed, the patient’s health was adversely affected by failures or delays in care.
Following the publication of the report, the government committed itelf to consulting on its recommendation for staff to be provided with mandatory training.
Ms Dinenage said: “I have no doubt that, in nearly all cases, professionals want to do their very best for people and act with their best interests in mind according to established procedures and protocols.
“But that doesn’t stop things going wrong, or mean that we can’t do better with appropriate training and knowledge,” said in her foreword.
Help in securing the consultation also came from campaigning by Paula McGowan, whose son Oliver died aged 18 in November 2016 in what she believes were avoidable circumstances.
The consultation report highlighted that investigations into the death of Oliver, who had a mild learning disability and high-functioning autism, are still ongoing.
Ms McGowan said in the document: “If the doctors and nurses had been trained to understand how to make reasonable adjustments for Oliver as a person with autism and a mild learning disability, I believe they would have known how to adapt the environment to meet his needs.
“I believe they would have known how to adapt their communication, using humour to settle his anxiety in a crisis, and de-escalate the situation further,” she said.
“I believe that ignorance of learning disability and autism cost Oliver his life, and we must never allow this to happen again,” she added.
Ms McGown is also calling for the training to be named after Oliver, adding: “His death serves as a constant reminder of why this change is so urgently needed.”
In March 2017, YouGov carried out a survey of 500 healthcare professionals, 71% of whom were nurses, on behalf of Mencap as part of the charity’s Treat Me Well campaign, which is aiming to improve how the NHS treats people with a learning disability in hospital.
Over half (57%) of those who responded thought that more learning disability training would enable them to provide better support to people with these conditions.
Reacting to the launch of the consultation, Dan Scorer, head of policy and public affairs for Mencap, said: “Pressure to change the system continues to grow and this consultation is a vital sign of commitment to reducing premature mortality among people with a learning disability.
“It’s a scandal that a lack of knowledge may be contributing to avoidable deaths in England each year, so the government and NHS must ensure that no doctor or nurse sets foot on a ward without proper learning disability training,” he said.
Professor Pauline Heslop, LeDeR programme lead at the University of Bristol, also welcomed the consultation.
- Views can be shared until 12 April via the consultation web page on the government’s website