Last year Katie Cooke helped to deliver the Measuring the Mountain project, working with people and organisations across Wales to gather 473 stories about people’s experiences of social care, and conducting a Citizens’ Jury to examine the question ‘what really matters in social care to individuals in Wales?’
The project was funded by Welsh Government to understand more about the early impact of the Social Services and Well-being (Wales) Act, and more about what social care is really like for carers and for people who receive care and support.
I spent much of 2018 talking to people about their experiences of care, learning about people’s relationships with service providers, the complexity of some people’s needs, the difficulty that people can face when trying to access services and the impact that needing support can have on someone’s life, and the lives of those around them.
The stories we gathered came from day centres, social events, people’s homes, conferences and workshops, and they related to support for carers, respite, help at home, information and advice, advocacy, and many other areas of social care. People’s experiences ranged from the very negative through to the very positive and, collectively they highlighted key themes and factors that can contribute to a person’s experience.
Many of these themes were echoed at the Citizens’ Jury where 14 members of the public spent three days listening to information from a packed programme of individuals involved in delivering or receiving social care services. The Jurors worked together to ask questions, explore the topics being shared and then produced a series of 15 recommendations across four areas of the Act.
Their recommendations included offering people support from impartial key workers to help them navigate social care, improving the support and value shown to carers, understanding and embedding co-production in social care delivery and ensuring that information is clear and produced in accessible formats that meet everyone’s needs.
These recommendations highlight some of the critical areas identified in the stories:
“75% of experiences shared by carers were negative, compared to 44% shared by people in receipt of care or support”
Just over half of respondents to questions about information said they did not receive any information that was helpful to them and, when asked about who had influenced what happened in the story they shared, 51% of people said that social care staff had been the primary influencers.
The stories also highlighted areas of best practice and some of the factors that contribute to positive experiences. They particularly showed how important people’s connections are whether they are with a community, a family, friends or even just one person. Where someone was supported to maintain or develop their connections, be it through engaging in activities they enjoyed, being able to visit family and friends or to live with people they liked, their stories were positive.
In total, MtM produced 31 recommendations, many of which can be distilled into the message that people need to be viewed as partners in social care delivery.
There is more still to be learnt about people’s experiences of social care and the factors that contribute to those experiences being positive or negative, so that social care delivery can better support people’s needs, and from August 2019 we will start collecting stories again. You can read more about our findings, recommendations and up-coming activities on our website – www.mtm.wales.
Measuring the Mountain