Background The Learning Disability Death Review (LeDeR) was commissioned by NHS England in 2015 in response to the 2013 Confidential Inquiry into the Premature Deaths of people with Learning Disability (CIPOLD) (Heslop, Blair, Fleming, et al., 2014). Phyllis Tuckwell Hospice Care (PTHC) integrated the LeDeR programme into our learning from deaths process in 2019.
Aims This report shares our experience of undertaking reviews of the care provided to patients with a learning disability and outlines the enhanced working relationships which have resulted from our engagement with the LeDer programme.
Methods PTHC reported our first patient death to the LeDeR programme in October 2019 and conducted a Structured Judgement Review (SJR) in line with NHS (NHS Improvement, 2018) and Royal College of Physicians (2016) guidelines. We have subsequently reviewed the deaths of seven other patients with a learning disability between April 2019 and March 2021.
Results Of the eight cases reviewed, five patients were cared for at the end-of-life in their usual place of residence - considered a marker of good practice - with three supported on the inpatient unit. Other examples of good practice include documented mental capacity assessment and best-interests decision-making on admission or first community review and evidence of reasonable adjustments including adaptation to room lighting and supporting a pet to visit.
One case identified important areas for improvement with limited evidence of mental capacity assessment and delayed access to appropriately funded care. The case was reviewed at a multi-professional meeting with action points disseminated within the hospice and shared with the regional LeDeR team.
Conclusions Training on mental capacity assessment in learning disabilities has been included in educational meetings and incorporated into organisational mandatory training. PTHC is now a core member of the regional LeDeR team and has provided training in end-of-life care to the learning disabilities team in our local Community Mental Health Trust. These links help us reach and enhance the care for more patients with learning disabilities.
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