Could Digital Flags transform healthcare for people with learning disabilities?
Rose Payne shares her experience working in partnership with NHS England, NHS Digital, and a leading Integrated Care System, to explore how new digital solutions could be used to improve care for people with learning disabilities.
The disproportionately high COVID-19 mortality rates for people with learning disabilities is a tragedy that has rightly made us question how effectively our healthcare systems are serving the people in this community.
Sadly though, these health inequalities thrust into the limelight by COVID-19 are nothing new. The 2018 Learning Disabilities Mortality Review (LeDeR) found that the median age at death for those with learning disabilities (aged 4 and over) was more than twenty years younger than for the general population that died April 2017 to December 2018.
We cannot assume that these inequalities are the result of a person’s conditions in itself. The Confidential Inquiry into premature deaths of people with a learning disability also found that 38% of people with a learning disability died from an avoidable cause, compared to 9% of people without a learning disability.
This suggests that appropriate interventions to enable reasonable adjustments to care for people with disabilities could lead to significant reductions in these inequalities.
While there are many factors that prevent this from happening currently, two key barriers have been highlighted by our work in this area: –
- Need for better quality data - There’s the issue that many people with a learning disability or autism may not be known to healthcare systems, making it difficult for Integrated Care System leaders to understand the scale of demand for services, or to get an accurate picture of the inequalities of access and outcomes facing these groups.
- Limited sharing of reasonable accessibility needs - Even once someone is known to local services, different services may hold different levels and qualities of information about the key reasonable adjustments, such as use of communication support tools or adjustments to an appointment environment, that need to be made to ensure they can access appropriate care. In addition, some staff may not understand the legal duty to provide reasonable adjustments for those who need them.
Last month, I spoke on a panel hosted by Digital Health about our work in partnership with NHS England, NHS Digital, and an ICS in the South East of England. Together, we explored how these barriers can be removed through partnership working, and improved digital solutions for information sharing.
To improve the quality of Learning Disability Registers, and thereby ensuring those with a learning disability can access the additional care they are entitled to, it is vital to link up separate registers held by health and social care. This linkage can be achieved at varying levels of digital integration – through manual cross-checks at one end, through to automated checks building on Shared Care Record functionality at the other.
The approach to better sharing and use of reasonable adjustments is built on the NHS’s Reasonable Adjustment Flag, which will be implemented nationally by 2023. Working with a group of Early Adopter systems, we’ve seen the value that this eventual categorical capture and multi-agency sharing of reasonable adjustments could have. Better still, is that patients and carers can play a greater role in proposing reasonable adjustments, and crucially consenting to them being shared.
While this work is ongoing, our exploration has highlighted that disparities in the availability of crucial information across health and social care settings is a major blocker to reducing inequalities. This must be combatted through collaborative working and thoughtful consented information-sharing.
We also found that better technology can be a great enabler for better care but is not effective in isolation. Good education and training, reducing digital exclusion, and a focus on staff and patient needs, will also be foundational to reducing health inequalities for those with Learning Disabilities and Autism, and other marginalised groups.
Author: Rose Payne, The PSC Performance Team
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