Experiences of being in hospital for people with a learning disability and autistic people
This report comes just weeks after the Care Quality Commission (CQC), the independent regulator for health and social care in England, published their 'State of Care' report which raised concerns about waiting times for NHS treatment.
People with a learning disability and autistic people face huge inequalities when accessing and receiving healthcare.
The CQC carried out this review after the multi-agency review into the death of Oliver McGowan highlighted failures in his care that could have been prevented. Evidence of people's experiences was collected from 8 hospital trusts:
- Cambridge University Hospitals NHS Foundation Trust
- East Cheshire NHS Trust
- Isle of Wight NHS Trust
- Kettering General Hospital NHS Foundation Trust
- Kingston Hospital NHS Foundation Trust
- Leeds Teaching Hospitals NHS Trust
- South Warwickshire NHS Foundation Trust
- Royal Cornwall Hospitals NHS Trust
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.
People with a learning disability and autistic people found it difficult to access care because reasonable adjustments weren't always made. For example, appointment letters were not always written in accessible formats. People struggled using the telephone and online forms to book appointments, and carers had been prevented from accompanying people into hospital because of COVID-19 restrictions.
The CQC did find good examples of staff making adjustments to support people to access care. These included allowing people to visit the hospital before their appointment or inpatient stay to introduce them to the environment and staff and to minimise their anxiety, offering longer appointments or carrying out multiple procedures at the same time to reduce the number of hospital visits, and adaptions to the physical environment such as quieter entrances and reduced waiting times.
People said their experiences of care were better when these specialist practitioners or teams were involved. However, people didn't always know that specialist support was available, or how to get in touch with a specialist.
Specialist practitioners or teams were usually only available on weekdays during office hours (9am to 5pm), and most covered both children and adults. Some specialist staff said that because of the size of their workloads, they were unable to be involved in the care of all people with a learning disability or autistic people. In half of the hospitals the CQC visited, a single member of staff was responsible for providing specialist expertise and advice. Other hospitals had specialist teams that ranged in size from 2 to 10 people.
Reasonable adjustments are not an optional extra. Health and social care providers have a legal responsibility to make reasonable changes to meet people’s needs.
Since 2016, health and care providers have been legally required to meet the Accessible Information Standard, which is intended to ensure that people with a disability, impairment or sensory loss receive information in a way they can understand.
The CQC found limited evidence about how hospitals were identifying, recording, flagging and sharing information. This is supported by our own research and research by Healthwatch England, which found that one in four disabled people said they had been refused help when requesting support to understand information about their healthcare.
The quality of communication and information sharing varied both between and within the services visited by the CQC. For example, hospitals were not always able to access GP records to find out about a person's additional needs. Without this knowledge, staff may not be able to recognise and make adjustments to meet people's needs, such as providing quiet spaces for people who are agitated and distressed.
People have a right to expect to be fully involved in their care and treatment. In many cases this is still not happening because there is not enough listening, communication and involvement. Providers need to make sure that staff have the time and skills listen to people and their families so they understand and can meet people’s individual needs.
While all the hospitals we visited had pockets of good and poor practice, none put people with a learning disability and autistic people consistently at the centre of their care experience.
From 1 July 2022, a new legal requirement introduced by the Health and Care Act 2022 requires all CQC registered providers to ensure their staff receive learning disability and autism training at a level appropriate to their role. To support this new legislative requirement, the government will be rolling out the Oliver McGowan training package.
The CQC said they were already using the findings of this review in developing a new single assessment framework, to ensure that they are asking the right questions to get to the heart of people’s experiences and make sure that much-needed improvements are accelerated.
