By Debbie Ivanova
I’m sure many of you, like me, are driven by equal measures of outrage and delight.
When we see people living in services of their choice, organised around their needs and wishes, great things happen. However, this too often isn’t the case and, as our recently published State of Care report has shown, people with a learning disability and autistic people continue to face huge inequalities when accessing and receiving health and social care. This includes our Out of sight – Who cares? report which highlighted the consequences of people not getting the right care and support in the community when they need it. Only four of the recommendations for change have been partially met and 13 haven’t been met at all. It’s nowhere near good enough.
State of Care shows that while admission to hospital should be temporary, poor environments, lack of discharge planning and difficulties in finding suitable community placements is leading to people with a learning disability and autistic people staying in hospital for years. In our latest publication Who I am Matters we explore people with a learning disability and autistic people’s experiences in acute hospitals, focusing on their stories to illustrate what needs to change.
When hospital care isn’t right the consequences can be devastating. This report shines a light on the impact these failings have on people and their families. The foreword is difficult but important reading for all of us. It’s written by Oliver McGowan’s mum. Oliver was 18 when he died in hospital. The multi-agency review into the death of Oliver McGowan found that Oliver’s death was potentially avoidable. When we looked at Oliver’s story, alongside other multi-agency reviews, trends and themes started to emerge which led to us conducting our own review.
During February and March 2022, we visited eight hospitals in England. We saw pockets of excellent work. Particularly from specialists and people who had really good personal experience of people with a learning disability and autistic people in their own lives. However, nowhere did we see this happening in a way which was joined up or consistent. We looked at:
- Access to care.
- Care and treatment in hospital.
- Protected characteristics and equality
of care. - Workforce skills and development.
Access to care
Everyone has the right to expect access to the care they need when they need it and that appropriate reasonable adjustments are made to meet people’s individual needs. Whether it’s about who’s accompanying the person or how messages are given or explained, what’s important is that these adjustments start right at the first point of contact.
Communication
This is equally about how you communicate and how you listen. There are stories in our report where people were really not listened to. When time isn’t taken to make sure people’s communication and ways of understanding are tailored to their individual needs, it’s difficult and sometimes impossible to provide good care. There isn’t a one size fits all solution.
Care and treatment in hospital
Everyone has the right to be fully involved in their care and treatment. We found many cases where this wasn’t happening, with not enough listening, communication, adjustments and involvement.
Protected characteristics
We found staff lacked understating around protected characteristics and equality of care, with a tendancy to focus on one aspect of the person. The protected equality characteristics of people with a learning disability and autistic people will also be about age, race and sexual orientation. Often those risk being overshadowed because staff lack knowledge and understanding about inequalities overall.
Workforce skills and development
We saw some great practice, but specialist practitioners and teams can’t hold the sole responsibility for improving people’s experiences of care.
We must react differently
As well as being a key equality issue our findings show this is a critical patient safety issue. All too often we lose focus on people’s health needs in social care meaning they can be late getting support. Providers need to make sure staff have up-to-date training and the right skills to communicate, respect and understand people with a learning disability and autistic people. It’s about the whole piece not just the provision of care.
My challenge to everyone is to recognise that every person is going to be different and to respect that individuality. We must react differently. 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.