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The NHS employs 1.4 million people, manages 1.7 million patient contacts every day…
What’s less known; there are more than sixty medical specialties and hundreds of subspecialties.
The NHS is less a single organisation than a negotiated settlement between hundreds of expert tribes, expected to behave as if they were one system.
In any big and sprawling organisation there’s a risk it becomes too big to see. It becomes managed by reports about reality rather than reality itself.
We create a ‘headquarters illusion’, running the place using…
- strategy documents
- targets
- dashboards
- reporting systems.
… whilst the real activity is happening out-there, in thousands of daily decisions.
Herbert A. Simon, an American who studied decision making (and was an early identifier of artificial intelligence) described...
... how organisations operate under bounded-rationality.
‘Senior leaders cannot possibly know everything about a complex organisation, so they rely on simplified information.’
As that information travels upward through layers of hierarchy it becomes filtered, summarised, politically adjusted, and…
… by the time it reaches the top, the picture may bear only a partial resemblance to reality, and…
… to put it bluntly, things get overlooked, and…
... when they are overlooked, they get forgotten about…
... when they are forgotten about, they go their own way...
... when they go their own way, they struggle for attention and resources, and ultimately degenerate.
Let’s call it the Cinderella Paradox.
Cinderella… who keeps the household running but is overlooked, under-resourced and pushed to the margins.
Learning disability services occupy that place in the health service…
… essential to the people who depend on them, yet invisible in the wider debate about the NHS.
Around 1.3 million, a population around the size of Birmingham, live with a learning disability...
... many with complex health needs and significantly poorer health outcomes than the general population… relying heavily on the NHS for care, support and advocacy.
The specialist workforce designed to support them has been neglected and shrunk.
There are only around 3,000 learning disability nurses (there are almost twice that number of Lollipop ladies and gents in the UK) working across the NHS….
… roughly one specialist nurse for every 430 people with a learning disability, meaning…
… one solo nurse looking after the equivalent of two thirds of the patients in an average district general hospital.
In reality the number is even smaller because some nurses are in management, liaison roles or specialist units.
Over the past thirty years the large learning-disability hospitals that once dominated the system, closed. Replaced by community living, supported housing and mainstream health services.
That shift was morally right. Socially progressive. Few would argue for a return to the old institutions, but…
… those hospitals weren’t just places of care…
… they were centres of expertise, training and professional identity. When they disappeared, the professional infrastructure that supported the specialty, largely disappeared with them.
Responsibility for people with learning disabilities became divided between organisations.
Healthcare sits with the NHS, while housing and day-to-day support are largely the responsibility of local authorities.
In the middle of this, community, learning-disability teams try to bridge the gaps, and...
... at the same time the training pipeline has dried up.
- Student acceptances to LD nursing courses have fallen by ~36% in eight years.
- Some regions have seen nearly 90% reductions in course starts.
- Several universities have closed their LD nursing programmes altogether.
… the specialist workforce is near collapse. Glued together by the perspiration of a gallant 3,000 you might still find, at the front-line.
LD services rely increasingly on mainstream services, hospitals, GPs and community teams.
That works only, if the wider NHS has the knowledge, training and time to adapt care for people with learning disabilities.
We know it doesn’t.
Communication barriers, behavioural needs and complex conditions require expertise that many general services can’t provide.
In financial terms learning-disability services at about £12bn, are the same size as general practice - yet in policy terms they are barely visible, and...
We hear, endlessly about GPs every day... almost never about learning disability services.
People with learning disabilities die more than twenty years earlier than the rest of us, and around 40% of those deaths are judged potentially avoidable.
That's a system failure and part of the...
... quiet evidence of a system that has allowed one group of patients to become invisible.
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