Learning Disability Today
Supporting professionals working in learning disability and autism services

‘Scandalous’ gaps in autism care, finds State of Care report

Four leading autism charities have joined forces to call on the government for urgent action to end the avoidable and devastating crisis affecting tens of thousands of people waiting for an autism diagnosis and who receive poor care.

It follows the latest state of health care and adult social care in England report from the Care Quality Commission (CQC) which highlights a failing system in which people with a learning disability and autistic people continue to bear the brunt of a health and care crisis.

In a letter to Chancellor Rachel Reeves and Health Secretary Wes Streeting, the Chief Executives of the National Autistic Society, Autism Alliance, Autistica, Ambitious about Autism and the Autism Centre of Excellence at Cambridge have urged for the Budget next week to include funds to ‘stabilise and strengthen the failing system’.

It points to last week’s report by the Children’s Commissioner Dame Rachel De Souza, which describes how long waits are ‘robbing’ children and young people of their childhood and potential.

Autism and avoidable deaths

The State of Care report is an annual assessment of health care and social care in England, which looks at the trends, shares examples of good and outstanding care, and highlights where care needs to improve.

Among the issues highlighted were the lower life expectancy for people with a learning disability and autistic people as well as avoidable deaths.

It said that the latest LeDeR report found 42% of deaths of people with a learning disability were rated as avoidable, compared with 22% for the general population. This was also reflected in information they received through regulatory work, such as people dying of avoidable constipation and choking. For example, a person with a learning disability who was admitted to hospital with constipation died in hospital 48 hours later with an impacted bowel.

 

Grave stone with heart carved in the middle

The report added that another area of concern was that only around a quarter of people with a learning disability were recorded on the learning disability register, which means that many people are missing out on the proactive care and treatment they are entitled to.

Reasonable adjustments in healthcare

The CQC also said it had seen examples where autistic people and people with a learning disability have not been supported to attend routine medical screening, such as breast screening, either by their social care service, or by their GP as part of their annual health check. They also heard of an example where, following the identification of changes in a person’s breast, a service didn’t facilitate a visit to the GP in a timely way. The person was subsequently found to have breast cancer.

Their Expert Advisory Group explored the challenges and barriers for people when accessing their GP, the inequalities related to primary care and the access to, availability and quality of annual health checks. The group includes people with lived experience and key stakeholders representing people with a learning disability and autistic people. They said the key issues were related to:

  • communication
  • making reasonable adjustments for them
  • lack of a person-centred approach
  • the environment in waiting rooms
  • lack of consideration of people’s other protected characteristics.

The Expert Group also spoke about the importance of continuity and choice, staff training and co-production to make sure people’s individual needs were understood and met. To help inform its future regulatory activity, the CQC is now exploring issues such as:

  • the barriers and inequalities faced by autistic people and people with a learning disability in accessing primary care
  • the quality and consistency of annual health checks and action plans with a GP for autistic people and people with a learning disability
  • the provision of reasonable adjustments.

Need to reduce waiting time of autism diagnosis

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The CQC also said that reducing the current waiting time for a diagnosis of autism is crucial to tackling health inequalities for autistic people.

However, despite fewer new referrals for autism diagnoses over 2023/24, the average waiting time to start an assessment reached a peak of nearly a year (328 days) in April 2024, rather than the recommended three months.

It added that worryingly, since 2019, the proportion of open referrals without any appointment has been increasing, reaching 81% in June 2024, compared with 44% in April 2019. This means that many people are being referred and not being seen.

The National Autistic Society said that the report is yet more proof of the unacceptable health inequalities faced by autistic people that should have been fixed years ago.

Tim Nicholls, Assistant Director of Policy, Research & Strategy at the National Autistic Society, said: “This report is crystal clear about the scandalous gaps in support for autistic people, and the stark inequalities and harmful practices they continue to face.

“The long waits for an autism diagnosis, in an already over-stretched system, the inappropriate care of autistic people stuck in mental health hospitals, and autistic people subject to excessive use of restraint. The damning list goes on and on. It needs to stop now.”

Restrictive practice and learning disability

Another area highlighted by the CQC in the report was the various forms of restrictive practice that people with a learning disability and autistic people are too often subject to that they see through their inspections. This includes the inappropriate use of chemical restraint and extreme restraint in the form of intubation.

The authors said that it is often due to a lack of suitable skilled and trained staff to support people who are distressed. It has led to multiple examples of abuse and inappropriate and illegal restrictive practices being used.

The report added: “We have also seen examples of closed cultures forming because staff do not speak up – either because they are part of the culture, they don’t recognise that what they are doing is restrictive, or because they are worried about repercussions.

“Last year, during an inspection of a residential care home providing personal care and support to autistic people and people with a learning disability we found that staff used blanket restrictive practices without ensuring safeguards were in place to protect people’s rights. For example, staff used verbal, authoritative commands to instruct people what to do and what not to do. Staff did not recognise this as a restrictive intervention and the provider did not have a monitoring system to evaluate whether they met ethical and legal standards.”

Recent analysis found that:

  • On average, around 15% to 20% more residents had restraint or restriction in their care plan in care homes where over half of residents had been recorded as autistic or having a learning disability compared with care homes where no residents were recorded as being autistic or having a learning disability.
  • In care homes where over half of residents were recorded as autistic or having a learning disability, the incidence of restraint was on average nearly 12 times higher than in care homes where nobody was recorded as being autistic or having a learning disability. This amounts to a yearly average of approximately 2 incidents of restraint for every 3 residents in care homes where over half of residents are recorded as autistic or having a learning disability.

It added that services are working hard to ensure their staff are trained in line with regulatory requirements in supporting people with a learning disability and autistic people. However, there are still services providing care and support from staff who have not been trained. Following a consultation last year, some services have been waiting for the Oliver McGowan Code of Practice to be published before securing training for staff.

The report said that the Code of Practice will greatly help to improve the understanding of the requirements on health and social care staff to support people with a learning disability and autistic people. However it is not acceptable that staff who have not received training, which is mandated in regulations, continue to provide services to people.

“Our focus is on how providers and leaders are assured that their staff have the skills they need to deliver care and support to people in a way that meets their needs. We know that where staff are trained to meet the needs of autistic people and people with a learning disability, quality of life and outcomes are improved,” it concluded.

 

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Alison Bloomer
Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.