Everyone benefits when people are involved in decisions about their care and the design of the services they draw on. Services benefit – designing a service with people who will use it, means thinking through access issues in advance and can save money. Staff benefit when they can spend their time doing their job rather than negotiating the barriers for the person trying to access their service. And people who draw on care really benefit – feeling valued and heard improves wellbeing as well as their experience of the service.
But too often, involvement doesn’t happen. Or services think they are engaging people, but people don’t feel listened to or feel like they are there simply to tick a box. Many of the poor experiences disabled people had during the first year of the Covid-19 pandemic – for example cancellations of regular appointments and services, and inaccessible communications – reflected this lack of involvement. This was one of the reasons why The King’s Fund and Disability Rights UK decided to look at how disabled people are currently involved in health and care service design and what might be improved.
Sadly, many of the experiences people shared with us were of things that hadn’t gone well. We heard about local authority engagement with disabled people that happened at very short notice with little consideration of people’s access needs, and about being consulted on a service but never hearing back, which understandably made people feel reluctant to take part again. As one person told us about their experience of involvement: “And I know full well, [they’re] going to go away from this, put this document in the bin, and carry on as usual.”
So how can social care services meaningfully involve people? One thing that was clear is that there’s no shortage of great resources to help improve services – such as this one page guide to co-production from Think Local Act Personal. But some of the principles of why this work is important need to be in place first.
It’s important that all staff understand the social model of disability. This shows how the challenges disabled people face are caused by the way the world around us – our environments – are designed, rather than by a person’s impairments or health conditions. It means thinking about how situations or environments could be adapted or changed to enable a person to live the life they want. Staff training needs to include what disability is and what disabled people’s rights are, what the social model is and how they can bring lived experience to their work. Local Disabled People’s Organisations often have expertise in this and some offer training.
Staff working directly with disabled people also need support – permission and resources – to respond meaningfully to what those people tell them. Alongside understanding disabling barriers, disabled people’s strengths also need to be recognised – and staff need time to properly get to know the people they work with. While this is undeniably a challenge in the context of the ongoing workforce crisis, staff who ‘get it’ – who really understand and value people’s input – are hugely valued by people who draw on services. And it’s important to remember that the disabled staff in an organisation are an asset here too. Staff with direct experiences of disability themselves have a unique perspective, bringing both lived and professional experience to the table.
“Once I was taking part… everything, my confidence, my abilities, my self-esteem, everything just skyrocketed.”
This is one of the people who shared their experience in our project, vividly describing how being fully involved in a social care co-production project really improved their wellbeing. Everyone benefits from getting this right – but ensuring disabled people’s voices are heard requires constant attention, until it is thoroughly embedded in business as usual.