More learning disability nurses are needed in positions of authority across health and social care to address poor health outcomes in people with a learning disability, MPs have been told.
Learning disability nurse consultant Jim Blair told the Women and Equalities Committee on Wednesday that enough learning disability nurses needed to be in place throughout the health and care system, including in leadership roles, to help people with a learning disability access essential care, and to prevent avoidable deaths.
“You need to have learning disability nurses in significant positions of power to change things, to lead and shape and direct the services”
The latest Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) report found that the median age at which people with a learning disability died in 2021 was 62, compared to 82 in the general population.
The report also found that 49% of deaths in people with a learning disability in 2021 were avoidable.
This compares to 22% in the general population. In people with a learning disability, 8% of avoidable deaths were linked to cancer, 14% to hypertension, 17% to diabetes and 17% to respiratory conditions.
One of the main obstacles to appropriate care that people with a learning disability face is diagnostic overshadowing.
Diagnostic overshadowing occurs when problems suffered by those with learning disabilities are attributed to their disability instead of to physical health issues or mental health traumas, and can lead to missed diagnoses.
Mr Blair told the committee that health professionals needed help and training to overcome communication difficulties that prevent them from being able to correctly diagnose patients with a learning disability.
In addition, he said that more learning disability nurses needed to be in positions of power to ensure that reasonable adjustments are put in place in hospitals and other healthcare settings, so that patients with a learning disability are correctly diagnosed and receive appropriate treatment.
“In order to make effective reasonable adjustments for those with learning disabilities and their family members we need to have learning disability nurses in all settings and in all areas. Really, wherever people with learning disabilities are,” he said.
He added: “You have to have significant leadership. You need to have learning disability nurses in significant positions of power to change things, to lead and shape and direct the services, not just have them in junior posts. That doesn’t work.”
“If we’re really serious about stopping the deaths of people with a learning disability and [increasing] their life expectancy, rather than seeing the perennial decrease, this is one central factor that must happen,” Mr Blair said.
He told the committee that addressing diagnostic overshadowing should be one of the key concerns of learning disability nurses in healthcare settings.
They would also need to ensure that reasonable adjustments were implemented as needed, and to have a good understanding of how relevant legislation including the mental health, equality act and human rights acts impact on clinical practice.
In addition, nurses should be involving people with a learning disability and their families in policy design and delivery, said Mr Blair.
He added that people with lived experience of a learning disability, and their family members, needed to be more involved in development of services for people with a learning disability.
“Far too much power is in the hands of the professionals and that’s not where it should lie. We are not the experts,” he said.
Mr Blair recommended the development of a national quality improvement panel made up of 51% people with a learning disability, 34% family members of people with a learning disability and 15% healthcare professionals.