In response to ‘Day service cultures from the perspectives of autistic people with profound learning disabilities’ (Ned Redmore)

My name is Shalim Ali. I am part of a research team and have worked on different research projects. I am also an expert by experience with Choice Support. I write a column in the Community Living magazine, commissioned by Saba Salman. I have lived independently for 3 years. My name is Andrew Power. I am a researcher in Geography at the University of Southampton. I am interested in the role of place in people's lives. I work closely with people with learning disabilities to find out about their support in the community and in care settings and think about ways to improve it. I met Shalim when we began our recent research project, Feeling at Home. We were invited to write a In Response article by the journal to one of the papers in this issue. We chose Ned Redmore's article (2023) Day service cultures from the perspectives of autistic people with profound learning disabilities for the British Journal of Learning Disabilities. We both saw Ned present this research at the Social History of Learning Disabilities conference in July 2023. We both found that it was a very accessible talk and clearly presented. Ned's article is about how a good service culture can be developed in a day service for autistic people with profound learning disabilities. The service in the study is a local charity based in the North of England with 20–30 clients. We chose to use the word client for two reasons. First, Ned used this term to describe people who attended the day centre. Second, Shalim also uses the term 'client' in his professional role as a quality checker in his reports and as an expert by experience in his research. We preferred this to 'service user' and thought that writing 'people who attend the day centre' every time was too long for this article. Shalim also thought that the paper related well to his own experience of day services when he was younger. During this time, staff were practical, enthusiastic for the job, engaging, polite and valued what they did. Staff were also very diverse in ethnicity. The author tried to find out about people with profound learning disabilities. We thought that service culture is an important topic as it shapes how support is delivered. We liked how the author planned and organised the project in a very clear way. Doing the research and getting to know the day service client 'Ben' Things that help to create good staff culture Outside pressures on day services Impacts of the research In reading the paper, we found out that the researcher Ned worked very closely with a day service client 'Ben' with profound and multiple learning disabilities. Ben is described as a 27-year-old man who communicated through vocalisations, direction and body language. He was provided support at home and 2-day services. We asked Ned to explain why he tried to focus on Ben's experiences. Ned said that he wanted to try to understand Ben's experiences. He wanted to try and change his own views of the day service in line with Ben's. This would allow Ned to think about service culture in a way that was more in line with the way Ben viewed it. We then asked Ned to explain how he developed this relationship. Ned explained that this was a process for him and it took time. When he first went to the day service, he looked at and wrote about the things that the day service staff thought were important. When he looked at what was taking place, he was focused on the service staff. His notes were about what the staff were saying. As he spent more time with Ben he began to understand what his focus was. He saw what was important to Ben at the day service and what his views were. Ned's notes completely changed. He started to be less focused on what staff were saying as Ben was not interested in what staff were saying. Ben was much more interested in where people were, what people were doing and activities he loved. Ben did not like people talking to him directly so conversations were unimportant. So, Ned began to work with Ben in a really intensive way. This helped him in his research in a way that was more appropriate for Ben, what he was doing on a day-to-day basis and his priorities. The next theme we found important was the ways that a good service culture was developed by the service. In the interview with Ned, we found out four ways that the staff work well: The first-way staff developed good practice was by being open about talking about the people in the day service. Ned described this as having an 'open culture'. If staff thought someone was having issues or that if they were upset about a past experience, staff would talk about it. They would try to find ways to improve their experiences at the service. This was an informal process that happened each day, where staff talked between each other. It could also come through in annual reviews or reviews around support in key worker meetings. A second way that staff worked well was how they cared about the mental health of their clients. They did this by staying connected and understanding what was going on in their clients' lives. Ned gave an example of one client who had moved house in the past year and this had been a really big moment for him. It was a big life experience that was affecting his mental health and the way he dealt with people. The service tried to develop an understanding of his broader life. It really helped the staff to understand his day-to-day experiences at the day service. They also made a good connection with the new supported living place that he was living at and with his family members. They kept in good contact between them to find out how he was doing. This helped the staff to understand his mental health and provide the support that he needed. A third way was that the service had developed a good way of working with autistic clients with profound and multiple learning disabilities. Ned explained how the staff built a good strong relationship with their clients when they had the opportunity to see what they did. That was really clear with one staff member that worked with Ben every Wednesday. Ned described their relationship as 'brilliant'. The understanding that they shared between each other was great to see. Ben felt so confident in that person and was able to enjoy those Wednesdays because he knew that particular staff member was going to support him and engage with him just as he wanted and really valued. Like Shalim had experienced in his day service, Ned also talked about how most of the staff seemed really enthusiastic about their work and knew what they were doing day-to-day. Importantly, they wanted space to provide good support and they were also very supportive of each other and happy with changing support. This showed a good culture that they all wanted other staff to learn and meant they could treat work as a sanctuary. A sanctuary means a safe place. We also thought it was important to find out about the difficulties that the day service faced and how the staff dealt with these. Ned shared that the service was being forced to grow and grow. The service was around 10 years old. They had to change buildings because their old building was becoming too small. Their outreach work in the community was also getting bigger. The service has tried to limit the number of new clients. However, staff at the service said that the council was forcing them to take more people. It has been a difficult process for the service trying to work out how many people they could support. Ned said that in the research, some staff were talking openly about staffing issues. They wanted to be able to support specific people on a more consistent basis. However, they were not having those opportunities because they were getting moved around different people they were supporting. This has created tension for the service. Ned shared that the staff talked about how things felt a little bit easier on them before. They could support some people for longer periods of time. The relationships with clients were a little bit stronger because they had more continuity. Staffing was also not as difficult. As a result, this is having some impact on staff and service members. Despite the difficulties the organisation faced around the larger number of clients and staffing, Ned felt that it did a good job at keeping to its clients' priorities. We agreed that this was an important theme as many services face similar difficulties. As well as the pressure to grow, the service faced pressure to focus on some things that were not important to the people they supported. Often there is pressure to focus on independent living and with the skills that clients should develop on a day-to-day basis. when I saw him engaging with that person that he's spending time with every Wednesday, he is communicating with that person in ways that I didn't see him communicating with other people. And that was because he felt really comfortable around them and to me that was him developing as a person. We finished the interview by asking Ned about his plans for the research. Ned said that he has been developing a tool for staff which shares good practice. We thought this would be a great benefit to other services. We thought that the themes that Ned covered in our interview would be good for staff to hear. I found the interview with Ned very heart-warming in the way that he spoke about the client Ben in a positive and considerate way. Ned made sure that Ben felt valued. I thought that the service had a good community feel and dealt with the cultural aspects really well. I have enjoyed being a part of developing this In Response article. For me, it has been a learning experience, expanding new knowledge about this area of learning disability support and hearing more about Ned's research.