Jim Blair has spent 30 years fighting to improve the health inequalities that see people with learning disabilities die decades younger than everyone else. But in the last 10 years instead of seeing his efforts rewarded with progress he has had to face the disappointment that the picture for people with learning disabilities is worsening.
Shockingly, the life expectancy gap between people with learning disabilities and those without has got bigger. In 2013 people with learning disabilities were dying 15 to 20 years younger, but now it’s 20 to 25 years, says Blair.
Associate professor Blair, who works with the West London NHS as a learning disability consultant nurse, believes a fundamental shift in power is needed to reverse this worrying trend.
He argues learning disability nurses must be operating in positions of power throughout the NHS to tackle health inequalities.
At the end of April he told the Women and Equalities Committee that ensuring learning disability nurses worked across all settings was a “central factor” in tackling avoidable deaths.
Consultant nurses and others at director level in the NHS with a specific focus on learning disabilities are needed to drive change, says Blair.
“It’s about providing the guidance, leadership, support and direction and also being able to have the authority within organisations to directly challenge and lead on shaping the future,” he said.
Senior leaders would be able to drive the changes that will make a tangible difference to the lives of people with learning disabilities and their families.
Blair added, “So, for example, having core reasonable adjustments — making decisions that there are no fixed visiting times for people with learning disabilities. Their families can come whenever they want and they can be part of the care and delivery and agreed pathway with that individual.”
It seems the urgency needed to address the health crisis engulfing people with learning disabilities is not grasped throughout the UK.
In Wales there are plans to increase the number of training places open to mental health and children’s nurses, but positions open to learning disability nurses are to remain the same. Blair said this “does not make sense”.
Learning disability nurse training places increased from 77 in 2021/22 to 87 places in 2022/23, but will remain at 87 for 2023/24.
Blair added that having learning disability nurses in all settings would not only help combat reduced life expectancy, but “diagnostic overshadowing”. This happens when medics attribute all the health challenges people with learning disabilities and autism face to their learning disability or autism.
It involves a failure to recognise that having a learning disability and autism makes people vulnerable to other health problems like heart disease, gastrointestinal disorders, anxiety, ADHD, obesity and epilepsy etc.
Blair also argues that learning disability nurses are also better placed to ensure that “reasonable adjustments” are made. These are designed to give people with learning disabilities and autism better quality health care. They can involve everything from giving someone more time for a doctor’s appointment to a carer being allowed to stay in hospital overnight or information presented in an easy-read or plain English format.
Paula McGowan led a campaign to ensure that all NHS staff were autism and learning disability trained. Primary school teacher McGowan, 57, launched her campaign after her 18-year-old autistic son Oliver, suffered an allergic reaction to antipsychotic medication and died at Bristol’s Southmead Hospital, in November 2016.
She is a strong backer of Blair’s efforts. McGowan said, “I fully support exactly what Jim’s saying. We need far more learning disability nurses across all settings and far more than just one in each setting.
“They should be treated with the same respect as any other nurse where there’s a clear career pathway for them to be promoted into senior positions.”
McGowan says she would love to see learning disability nurses leading the way with Oliver’s training.
She added, “We need to be learning from these communities first (autistic and learning disabled people) and, in turn, we need to be learning also from our learning disability nurses who come with that wealth of knowledge.”
The latest Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) review showed that 49% of deaths in people with learning disabilities in 2021 were avoidable. Less than 25% of people in the general population suffered an avoidable death in the same period.
The report also found that the average life expectancy for people with learning disabilities was 20 years lower than in the general population, with the median age at which a person with a learning disability died being 62.
Scott Watkin, who has a learning disability, said there should be a learning disability nurse “in every hospital”.
Watkin, who is chair of the member’s representative body at charity Learning Disability England, said the nurses can “make sure we get the right health care and stop avoidable deaths to people with disabilities”.
A spokesperson for the Department of Health and Social Care said they are encouraging people to become learning disability nurses and offering students £1,000 extra per year on top of a non-repayable training grant of £5,000.
A spokesperson added, “We are also on track to meet our commitment of 50,000 more nurses, with 44,000 more working in the NHS compared to September 2019, and will soon publish a long-term workforce plan focused on recruiting and retaining more staff.”
A Welsh Government spokesperson said learning disability nurses are available in every health board. In addition, the Welsh Government is rolling out the Paul Ridd learning disability awareness training.
Born in 1955 Paul was left with a learning disability after the umbilical cord became wrapped around his neck and starved his brain of oxygen. He died in hospital in December 2008 after surgery for a perforated bowel when his family say his care was poor and staff failed to consider his disabilities.
It’s hoped the Paul Ridd training will ensure all Welsh NHS staff in public facing roles have the skills to meet the needs of people with learning disabilities.
A spokesperson added, “We continue to invest in learning disability services and have allocated £2.1m to health boards to develop services and over £1m for annual health checks.”
