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Patients with learning disabilities let down by poor links between primary and secondary care

A programme intended to improve care for patients with learning disabilities in acute and elective settings is limited by a poor working relationship with primary care, a hospital director has said.

University Hospitals of Leicester has implemented a programme which flags to learning disability nurses when a patient with learning disabilities presents to its emergency department, indicating they may need more support or have complex needs.

The pre-emptive notifications also allow nursing staff to identify if that patient is on an elective waiting list and proactively enter them into an assessment process if they have a complex need.

But the scheme is limited by its incompatibility between primary and secondary care systems, the trust’s director of health equality and inclusion explained.

Speaking at the NHS ConfedExpo, Ruw Abeyratne said: ‘It’s an imperfect system because it currently relies on individuals proactively interacting with the systems that aren’t talking to each other.

‘What we have discovered is that our system does not necessarily reflect primary care’s system, and we find patients who are flagged on our system but not on the primary care system. We have got a role to go back out to our integrated care system colleagues and talk about how we can bridge that gap.’

She added: ‘A huge challenge there is how to advocate for an underrepresented group of patients. There is something in there around leadership: it’s very clear that senior leaders in our trust have limited understanding and experience of working with this group of patients, so we are trying to build a system around which we can improve that awareness and understanding.’

The programme – which launched in July last year – also includes a learning disabilities induction for all new nursing starters.

A major report last summer found that nearly half (49%) of all deaths of people with a learning disability in 2021 were deemed to be avoidable.

A version of this story was originally published by our sister publication Healthcare Leader.

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