It was great to be back in person attending the National Nursing Conference 2022 in September, which brought together chief nurses from across the UK. As ever, there are always standout sessions that get under your skin and make you want to act when returning to work.
One of these sessions was delivered by Paula McGowan, the mother of a young man called Oliver who died in November 2016. Oliver was an 18-year-old with a mild hemiplegia, focal partial epilepsy, a mild learning disability and high-functioning autism. He was given antipsychotic medication, despite a warning from his family that the medication could be harmful. An independent review found that his death had been ‘avoidable’.
In 2013, the Confidential Inquiry into the Deaths of People with Learning Disabilities (CIPOLD) was tasked with investigating the avoidable or premature deaths of people with learning disabilities through a series of retrospective reviews of deaths. The aim was to review the patterns of care that people received in the period leading up to their deaths, to identify contributory errors or omissions, to illustrate evidence of good practice and to provide improved evidence on avoiding premature death.
The inquiry (Heslop et al, 2013) found that 38% of this group died from an avoidable cause compared with 9% of people without a learning disability.
The Learning Disabilities Mortality Review (LeDeR) programme was established in May 2015 to support local areas across England to review the deaths of people with a learning disability, to learn from those deaths and to put that learning into practice. The third annual report included information about the deaths of people with learning disabilities aged 4 years and older, which were notified to the LeDeR programme between 1 July 2016 and 31 December 2018. The report stated that (University of Bristol, 2018):
- The proportion of people with learning disabilities dying in hospital is higher (62%) compared with the general population (46%)
- Almost a half (48%) of deaths reviewed in 2018 received care that, in the view of the reviewer, met or exceeded good practice, slightly more than the 44% recorded in the 2017 report.
Mandatory training
Oliver's death and the known significant health inequalities have been the driver for Ms McGowan to campaign for better outcomes. This has resulted in the government introducing a requirement within the Health and Care Act 2022 for service providers registered with the Care Quality Commission to ensure that their employees receive learning disability and autism training appropriate to their role. This aims to ensure that the health and social care workforce has the right skills and knowledge to provide safe, compassionate and informed care to autistic people and individuals with a learning disability.
The training, which has been co-created and co-delivered by autistic people, people with a learning disability and family carers, has been developed by Health Education England, in partnership with organisations such as Skills for Care and the Department of Health and Social Care, alongside Oliver's family.
‘CQC-registered service providers need to ensure that their employees receive learning disability and autism training appropriate to their role’
The first phase of the Oliver McGowan Mandatory Training in Learning Disabilities and Autism programme will be ready for launch at the end of October. The training is split into two tiers:
- Tier one is intended for staff working in any sector who may occasionally interact with people with a learning disability and/or autism, but who do not have responsibility for providing direct care or making decisions about care or support
- Tier two is for health and social care staff and others with responsibility for providing care and support for an autistic person or people with a learning disability, but who would seek support from others in cases that require complex management or complex decision-making.
A trial of the programme, which started in 2020, included 8300 health and care staff across England who underwent training either virtually, face-to-face, or using both methods. Feedback on the training was overwhelmingly positive, with the contributions from people with a learning disability or autism being rated as especially helpful by 95% of trial participants. Following the training and a few months after taking part in the course, they also reported an increase in their knowledge, skills, general confidence, and confidence in communicating with people with learning disabilities or autistic people directly.
Oliver's mother told the conference:‘Every single one of you has the power to make a difference.’ My takeaway action is to implement this training and spread the word.