Iodem were asked to conduct a clinical and governance review of the care and treatment provided to a patient who had severe learning difficulties and dementia.
The Patient was in a residential assessment and treatment service, awaiting transfer at the time of his death. The Patient was within the average life expectancy range for people with his specific learning disability at the time of his death.
The clinical review focussed on the clinical response to the seizures which the Patient had suffered in the weeks leading up to his death. The Iodem Team also reviewed the planning, delivery and treatment of the Patient’s care, in order to identify potential improvements and learning.
The review consisted of a comprehensive analysis of the Patient’s clinical records, as well as interviews with a range of individuals involved with his clinical care and the response to the Patient’s death.
The Iodem Team reached the view that the Patient’s care and treatment was consistent with NICE guidance in relation to the management of seizures and epilepsy. However, there was learning identified in response to the diagnosis of dementia.
Dementia is a progressive condition. The absence of an advanced plan which recognised the progression of dementia towards an end of life event meant that staff did not have an opportunity to understand and adapt their approach to the Patient’s changing care needs, particularly in relation to palliative care. This gave rise to two significant points of learning.
Firstly, whilst the Patient’s parents had recognised that the Patient was approaching the end of his life, staff responsible for his care had not. The Patient had been resident in the unit for some time which had led to a partial erosion of ‘professional boundaries’. This contributed to the significant level of distress and trauma which was experienced by staff as a result of the Patient’s death.
Secondly, had it been recognised that the Patient should have been placed on an end of life pathway, his death would not have been classed as ‘unexpected’, thereby triggering both an internal and independent investigation. Whilst the Iodem Team were able to confirm that both investigations identified learning, we took the view that there were other ways in which this could have been achieved, particularly in light of the significant distress which staff were experiencing some considerable time after the Patient’s death.
The Trust has subsequently updated its policies to amend its investigation practices and to include palliative care in relation to individuals with a learning disability who are also experiencing dementia.