In a report published Yesterday, Thursday 16 July 2020, the University of Bristol said that people with profound and multiple learning disabilities disproportionately died at younger ages, of those who died in childhood, 46% had profound and multiple learning disabilities. The ‘Learning Disability Mortality Review (LeDeR) programme’ said that the deaths of 516 children aged 4-17 years were notified to the programme and the deaths of 306 young people aged 18- 24 years of age were also notified.
There were a number of issues most frequently identified relating to the care of people with learning disabilities, including: delays in the diagnosis and treatment of illness; poor care coordination and communication between agencies; omissions in care or the provision of substandard care and poor application of the Mental Capacity Act.
Key headlines include:
- 46% of children with profound and multiple learning disabilities died in childhood
- 43% of children who died in childhood were from BAME groups
- Over a quarter (27%) of children had an underlying cause of death attributed to disorders of the nervous system (e.g epilepsy, meningitis)
- The most common underlying causes of death for young people aged 18-24 years was also attributed to disorders of the nervous system.
Recommendations specific to children and young people include:
The importance of timely advanced care planning and end of life care planning, with regular review, and in consultation with the family, paid carers, services currently involved and palliative care services
- The need to assign a key worker to coordinate care and ensure all agencies involved are fully informed and involved where necessary
- To review processes and documentation for undertaking MCA assessments in young people 16 years and over to ensure they correspond to the legislative requirements.
The Council for Disabled Children offer a range of Mental Capacity Act training, currently available virtually, for all education, health and social care practitioners. Please contact Caroline Coady at firstname.lastname@example.org for more information.
You can also download our free Decision Making Toolkit here.
Dame Christine Lenehan, Director of the Council for Disabled Children, has issued the following statement:
“The latest LeDer report makes depressing reading, the issues for children and young people are not new but must change, we need to continue our work with NHS England on key working and with services to help them understand clearly the implications of the Mental Capacity Act, all of us have a part to play to make the change we want to see.”
You can read the full report here: http://www.bristol.ac.uk/sps/leder/resources/annual-reports/