Hospitals failing to provide appropriate care to autistic patients, study finds

Care Quality Commission (CQC) have published a report that outlines autistic people and people with learning disabilities are still not getting the care they need even after the tragic death of Oliver McGowan.  

In 2016, Oliver McGowan, a teenage boy from Bristol who was diagnosed with autism, passed away due to NHS staff not fully understanding his illness.  

The report, ‘Who I am Matters’, which was published last week, highlights the impact similar failings have on other patients and families. 

During February and March 2022, CQC, the independent regulator of health and social care in England, visited eight hospitals, which were not providing autistic patients and people with learning disabilities with the care they required.

However, the organisation did note that hospitals had some pockets of good practice. 

Experts assessed various factors of how hospitals handle care with autism and learning disabilities including access to care, communication, care and treatment, protected characteristics and equality of care, and workforce skills and development. 

The CQC said that nearly six years after Oliver McGowan’s death, change and improvement is still too slow, which as well as being a key equality issue, has been identified as a critical patient safety issue.

People told the CQC that they found it difficult to access care because there were no reasonable adjustments made. The CQC said providers need to develop this to meet people’s individual needs. 

In addition, the regulator of health and social care found people are not being fully involved in their care and treatment process. CQC has now urged providers to make sure their staff have enough time and skills to listen to people and their families, so they understand. 

Debbie Ivanova, CQC’s Director for People with a Learning Disability and Autistic People, said: ‘For too long people with a learning disability and autistic people have not been getting the care they need, when they need it.

‘This is not only distressing for the individuals and for their families and carers but can also significantly affect people’s health outcomes.

‘We know that better communication, real involvement and appropriate adjustments are all key to improving people’s experiences of care when in hospital.

‘During our time spent in hospitals looking at how care and treatment was delivered, we saw pockets of excellent work. However, nowhere did we see this happening in a way which was joined up or consistent.

‘We are determined to improve the care for people with a learning disability and autistic people. Now is the time for action and I encourage all health and care leaders to use the learning from our report to drive improvement – to recognise and respect each person’s humanity and individuality and respond differently.’

Alongside trying to change the way hospitals handle autism and learning disability patients care, compulsory autism training for NHS staff has been launched to bring greater awareness to the issue. 

Photo by Martha Dominguez de Gouveia