One month ago in the early hours of the morning, BBC DJ Jo Whiley placed an appeal on Twitter. It was pleading for help from the learning disability community for her sister Frances who had Covid-19. She asked if anyone knew what to do if a patient with a learning disability needed oxygen but couldn’t tolerate a mask.

The desperation was all too apparent as was the seriousness of the situation. Within hours there were thousands of retweets and hundreds of replies from people tagging numerous doctors and nurses in the hope of sourcing a solution. One name, amongst others, was mentioned over and over. A learning disability nurse called Jim Blair.

When asked about it, he is quite bashful. “I got in touch that day with a few suggestions.”

Not surprising really seeing as Jim Blair has spent most of his adult life sourcing solutions for patients with learning disabilities who don’t follow the conventional rules of medicine. Patients who challenge healthcare professionals to continuously think outside the box.

In 2008, he became the first learning disability consultant nurse in a general acute hospital in the world, a post he created himself. It came with real authority to lead the clinical direction of a patient's journey.

Preventable deaths and learning disability

Frances has since recovered from Covid-19 and a surprising side effect of the near-tragedy was that the publicity gave the Government a final shove to make all adults with a learning disability eligible for the Covid-19 vaccine. A move that can potentially save hundreds of lives.

It was a celebratory moment after a dark winter that saw people with a learning disability die from Covid-19 each week in significantly higher numbers than the general population.

 

"More people now realise what a dreadful deal people with learning disabilities get in society."

 

“If there is something positive that we can take from Covid-19,’ Jim Blair says. “It is that more people now realise what a dreadful deal people with learning disabilities get in society and how much learning disability nurses can make a massive difference.

“You know when learning disability nurses do their job right because people receive timely, tailored health care and treatments that improve their lives that reduce the likelihood of poor outcomes and preventable early deaths.”

Learning Disability Nurses NOT Hearses campaign

The Covid-19 pandemic might have beamed a spotlight on some of the heath inequalities faced by people with a learning disability, but the scale of avoidable deaths due to unequal health treatment is not new.

The Confidential Inquiry into the Premature Deaths of People with a Learning Disability (CIPOLD) found that on average women with a learning disability die 18 years sooner, and men with a learning disability die 14 years sooner than the general population in England. It also found that 38% of people with a learning disability die from avoidable causes, compared with 9% of the general population.

More recently, a Public Health England report estimated that 6.3 times more deaths occurred among people with learning disabilities than the general population between 21 March and 5 June 2020.

This is why Harrow Mencap launched its Learning Disability Nurses NOT Hearses campaign to try and raise awareness of the shortage of learning disability nurses across the UK. A campaign that Blair describes as “extremely important”.

“A lot of people see learning disability nurses in acute hospital, primary and care settings as a bit of a luxury,’ he adds. “My argument is, if you want to improve the quality outcomes in the lives of people, we are cost and life savers. We help significantly reduce the length of acute hospital admission for a person with a learning disability, which frequently is a lot longer than other members of society, through ensuring effective adjusted care that enables the individual to have the treatment in a timely manner.

"Also linking up with families, community health colleagues and care agencies to support a safe discharge with the appropriate supports in place. If you think of an acute hospital bed as costing around £500 a day, you can start to see savings of thousands of pounds each year and more importantly increased quality and length of life.”

In 2012, Blair said in a Guardian interview that specialist learning disability nurses can have a big impact on the quality of care by "challenging poor practice and guiding and supporting colleagues.”

Yet, he said that there was a reduction in the number being trained and forewarned that if nothing was done in the very near future to remedy this, the health inequalities experienced by people with learning disabilities were only going to get worse.

Today, the situation has still not improved. The latest figures from NHS digital, show there has been a 40% drop in the number of registered learning disability nurses in NHS posts from 5,368 in 2010 to 3,223 in 2020. There are approximately 17,000 learning disability nurses on the Nursing and Midwifery Register with most working outside of the NHS in private and other care settings.

“In order to enhance and save lives," he says. "I would have learning disability nurses at consultant and other levels in every hospital and within primary care as well as specific roles in care services with the infrastructure built around that, so they were embedded within teams.”

Four pillars of evidence for learning disability nurses

To address some of the findings of the CIPOLD report, Blair developed four pillars to go alongside NHS Improvement standards for learning disability nurses to evidence their impact. These were:

  • Referral to treatment from point of referral by GP to the treatment taking place. The time between these is frequently much longer for individuals who have a learning disability.
  • Attendance at outpatients being successful so appointments happen rather than breaking down and not effectively occurring.
  • Reducing lengths of stay in acute general hospitals for people with learning disabilities who tend to spend longer periods of time in acute general hospitals than other members of society.
  • Reduce readmission rates to acute care post discharge within 12-48-hour period.

He said that for the NHS Improvement standards to be completely implemented, learning disability nurses alongside other health professionals, needed to gather data and evidence in relation to the care of people with learning disabilities across and within primary, acute, and community care settings and services.

“It is essential that input, feedback, and advice from people with learning disabilities and their families are central throughout,” he says.

The NHS Benchmarking Network gathered this information and found that over the last few years focus has included inappropriate over medication of people with learning disabilities and/or autism, inappropriate admissions to the inpatient setting and lack of capacity in specialist community services and supported housing.

Give me five framework of learning disability nursing

Blair has gone even further and developed the 'Give Me Five' framework of learning disability nursing that reflects his vision for the future of learning disability nurses. This includes:

  • Addressing diagnostic overshadowing
  • Health issues and how they relate to people with a learning disability
  • Consistently engaging individuals and their families in care evolution
  • Education in action with and for colleagues modelling practice
  • Law, Mental Capacity Act, Equality Act, and Human Rights Act

 

Learning disability nurses

 

He says that the central component of the role of a learning disability nurse is to address diagnostic overshadowing. Diagnostic overshadowing happens when a health professional assumes that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors such as biological determinants.

This means that behaviours that could indicate a physical or mental health issue are attributed to the individual's learning disability rather than striving to explore other causes for the behavioural change. It is essential that behind every new behaviour or increase in existing behaviour that a mental or physical health reason is considered.

“So I'm a white guy who's 53 and if I smacked my head against the wall, you're not going to just think, well, that's what white guys who are 53 do,’ he says. “Whereas if I had a learning disability, some professionals might say that I was hitting my head because of my learning disability. That is the central element of diagnostic overshadowing.”

Engaging with families is also important as he says they form part of the hub of the wheel. “A wheel cannot work without the hub as the spokes are going to fall off. But if the hub is made up of people with learning disabilities and their family members then going forward, they can shape and change the future of services. This will help reduce health inequalities and increase life expectancy, but it will also lead to people leading better fulfilling healthier lives.”

Lessons from Covid-19

“Covid-19 has taught us that the social model of disability is not right as it has taken away at times the focus on health,” Blair says.

The Social Model of Disability was developed 40 years ago by disabled people and draws on the idea that it is society that disables people such as environmental and attitudinal factors. Whereas the medical model, suggests that the ‘problem’ of disability resides with the disabled person rather than with society.

 

“Covid-19 has taught us that the social model of disability is not right as it has taken away at times the focus on health."

“The medical model was not the right model,” he says. “But l don’t think that the social model is the right model either. The right model has always been in the middle and that is a health and wellbeing model.

“Covid-19 has made us truly appreciate that health is so important. Before Covid days, we knew that people with a learning disability had been dying too young, for far too long. We also knew that many deaths were preventable. Not at the point of death but prior to that.

"Some people are at significant levels of risk in relation to experiencing health inequalities and Covid-19 has shone a massive spotlight onto that fact.

Another element that has been highlighted during the pandemic is the importance of the GP Learning Disability Register. People must now sign up to receive a Covid-19 vaccine. Blair says this means more people with a learning disability will have access to an annual health check and any health issues flagged such as high blood pressure, respiratory and heart conditions can be monitored quickly and effectively in primary care.

“We currently only have 150,000 people with a learning disability registered on the GP register yet there are 1.2 million people who have a learning disability in this country approximately 2% of the overall population,” he says. “Being on a GP register and having an alert on your records in local hospitals will significantly enhance the health and well-being of people with a learning disability.

"In order to address the health inequalities faced by individuals with a learning disability it is essential that health issues are diagnosed and treated quickly alongside addressing the broader causes of poor health and well-being such as inadequate supports, poor housing and poverty."

So what about the future for learning disability nurses post-Covid pandemic? “The virtual care that evolved through Covid such as screenings and appointments led by learning disability nurses should continue to improve outcomes in a timely manner as well as being in someone’s own environment which will greatly reduce anxiety," he says.

“It is about having learning disability nurses in the right place with the right skills at the right time across and within hospital, primary and social care settings. These learning disability nurses always proactively strive to address health issues as early as possible, ensuring annual health checks happen and health concerns are acted on quickly.

“In all settings we must always consider a health reason behind any behaviour change and act as this will save and improve lives as well enhancing an individual’s well-being.

"Learning disability nursing is a fabulous career. Tuning into a person’s frequency to address health and well-being issues is a great honour. Working alongside the person, their families, friends, health, education and care staff is wonderful and to be part of a person’s life journey is incredible.”