A
research team at Northumbria University have launched a major project exploring
how carers recognise and manage deterioration in the health of people with learning
disabilities and autism.
Approximately
1.5million people in the UK have a learning disability and it is estimated that
around 1% of the population has an autism spectrum condition.
People with
learning disabilities and autism are more prone to chronic health problems than
the rest of the population and are often more susceptible to acute conditions,
including sepsis.
As a learning disability can affect the way a person
understands and communicates information, this
may make it more challenging for carers to recognise the acute and often rapid
deterioration that occurs when people become ill. This can result in delayed
treatment, which can be fatal in
cases such as sepsis, for example, where medical intervention is needed quickly.
While a number of tools to help
carers recognise early deterioration do exist, there is a lack of evidence
around their effectiveness as well as no consistent, national approach to using
them.
To address these gaps in research, experts from Northumbria
University will work with regional NHS Trusts and other partners, including The UK Sepsis Trust, to
explore how carers, either professional or lay, use a range of assessment
tools, including Early Warning Systems, to ensure timely provision of healthcare for
people with learning disabilities and autism. The project has been funded by NHS England and NHS Improvement and Health Education England.
Dr Jane Greaves, Senior Lecturer in Northumbria’s Department of Nursing Midwifery and Health and project lead, said: “Having worked for many years in intensive
care, I know what an impact early recognition, timely assessment and management
can have on patient outcomes. Carers often have really good instincts about
changes in the person they care for, but it can be difficult to describe those
changes in words and know how to express their concerns effectively when
seeking professional help. If we can understand the experiences of carers
in seeking medical help and explore the impact of using Early Warning Tools and
education, we will hope to inform and help shape the future of care responses
and health outcomes for many people with a learning disability or autism who
become suddenly ill”.
Early recognition can save lives
A recent report by Public Health England highlighted
that certain kinds of learning disability can make people more vulnerable to
respiratory infections, such as Covid-19. According to the report, people with
learning disabilities are at four times the average risk of death from
Covid-19.
People with learning disabilities are
also more likely to suffer with co-existing medical problems, including common
issues such as constipation, acid reflux and aspiration and ischaemic heart
disease. These can all cause changes in a person’s condition, mask other
changes and complicate recognising and interpreting signs of deterioration.
Several
tools are available to help carers recognise early deterioration and provide a
common vocabulary for discussing potential problems with people for whom they
care.
This new
study will investigate how families and non-clinical care home staff use these
tools to recognise the signs of deterioration that might indicate sepsis or
other serious problems. This will help identify what works best for carers and
assist in making decisions about how to equip them with the resources they
need.
The research
will also look at how carers communicate these concerns to doctors and other
primary care staff. Understanding the carers’ problems and dilemmas is key to
designing effective training that supports them in accessing timely assistance.
Additionally,
the project will evaluate the effectiveness of the various Early Warning
Systems (EWS) used in community and primary care settings. These EWS are based
on infrequent, but regular measurements of vital signs to provide a baseline
and aid the interpretation of complexity in vital signs and deterioration in
adults with a learning disability or autism.
“Currently,
there is no consistent, national approach to using EWS in primary care
settings. By focusing on the role of carers, this project will
provide crucial evidence for future decision-making by policy makers and
practitioners, in seeking to improve the early identification and management of
ill health in individuals with learning disabilities and autism”, added Dr
Greaves.
