A Project To Support More Effective Involvement Of Service Users in Adult Support and Protection Activity

Chapter 2: Overview of Scottish Research

Introduction

2.1 This chapter provides a summary of the work that has been undertaken to date in Scotland. A request for information about any evaluations that may have been undertaken by local authorities was circulated to all lead ASP officers. We also drew upon wider research to consider whether themes coming out of the Scottish research reflected or contradicted the more general comments made within the literature on adult safeguarding and service user involvement.

2.2 In summing up what work has been done it is important to remember that service users contributed to the development of the ASP. Their views were listened to and helped shape how the law was worded (Mackay et al 2011, Scottish Government 2008). For example

• The term 'vulnerable adults' was replaced by 'adults at risk of harm'.
• Age and receipt of community care services were deleted as criteria.
• The term 'abuse' and allied specific criteria was replaced to that of being 'at risk of harm' which has a more open ended meaning.

Listening to Those Who Have Been There

Service User Views

2.3 A small survey carried out by East and Midlothian Adult Protection Committee's APC (2010) found that some services users spoke highly of ASP, but others had mixed feelings. SCLD has carried out an evaluation for East Dunbartonshire, interviewing 8 service users with learning disabilities (Miller 2012). It found that most communication was verbal with only one respondent reporting they were given anything in writing. Respondents were unfamiliar with terminology of proceedings and were unsure what the process was, or, if an investigation had been carried out. Of the five respondents who said they had attended a case conference, three said they were given help to prepare for the meeting and four said they had had support in the meeting. However, many of their comments reflect the unease that they felt at the meetings:

"You walk in 'blind'"
"You walk in a stranger. They all know each other and you're the odd man out"
"They all had crib sheets in front of them"
"I didn't know my role"
"I was like a fish out of water"
"They had all attended these meetings a hundred times" (Miller 2012)

2.4 Those who had help preparing for the meeting reported the most positive experience of the meeting itself (Miller 2012). It is interesting to note that one respondent highlights their lack of a 'crib sheet' in contrast to everyone else around the table. This prompts the question: if they had accessible 'crib sheets' that they were able to bring to the table, would this have put them on a more equal footing with more confidence to participate?

2.5 This help beforehand can be done in a number of ways. For example in Dumfries and Galloway the chairperson of the case conference meets the person beforehand. Many people use an independent advocacy worker to speak for them or to help them speak for themselves. The papers a person brings to the table so that they have a 'crib sheet', to use the words of the person in the East Dunbartonshire evaluation, could be a list of things they want to say and questions they have. There are other ways in which a person can be helped to have their say. For example, a study that brought views together across three different local authorities (Mackay et al 2011) also found that one person was helped to express their views about the type of contact he wanted with his family through use of Talking Mats. This was then shared with other workers and the family. Talking Mats is a way of exploring and recording issues through the use of pictures.

2.6 Six service users and one relative were interviewed in the Mackay et al (2011) study. Most of those interviewed found that the process of investigation was stressful. There was anxiety about what social work might do, having to answer personal questions and attending case conferences. Some service users experienced losses as well as gains around changes in relationships. Though they have become safer, such losses needed to be acknowledged and where possible ameliorated.

2.7 The Altrum Risk Research Project (2011) consulted with 42 service users with a range of service needs about ASP work. Many of those consulted had experienced harm in the past, but only a few had worked with social workers about issues of harm since the ASPA has been implemented. Service users did express concerns about what the ASP process might be like. Their experience suggested any inquiry process can affect a person's sense of self. They raised concerns that risk assessment forms, capacity assessments and case conference reports may act to further damage a person's sense of self. They wanted attention to be given to the person's own sense of what they can do to recover and gain resilience.

Carers' Views

2.8 East Dunbartonshire Adult Protection Committee also conducted an evaluation of carers' views through a local carers' group. Carers highlighted that whilst the outcomes were generally positive, there was criticism about the process. They felt ill-informed, found case conferences too nerve wracking to be able to say what they wanted to say and generally felt they were not always listened to. They raised concerns that language was intimidating and showed a lack of sympathy for the stress carers were under. Of the four carers contributing to the survey two felt that "more information should have been provided and help should have been offered earlier" (East Dunbartonshire Council 2012).

Social Workers' Views

2.9 As well as interviewing service users, the study that looked at ASP work across three local authorities listened to social workers and involved them as co-researchers (Mackay et al 2011). Some of the key challenges were around balancing the individuals' rights with practitioners' legal duties and developing better inter-agency working. These same issues are evident in the wider literature (Calder 2010, Hogg et al 2009, Mackay 2008 and 2O11, Patrick and Smith 2009 and Stewart 2012).

Half of the social workers interviewed felt that the ASPA had enabled them to take more time and therefore make sensitive efforts to gather and weigh up information, enabling them to build relationships with those at risk of harm more so than within their main role (Mackay et al 2012). Social workers reported that service users engaged with ASP investigations in a range of ways from welcoming openness to cautious acceptance to occasional rejection of contact, which was respected in some cases depending on the situation and the presence or absence of undue pressure. Social workers and those helped agreed that the adults at risk were safer and had a better quality of life as a result of the plans put in place through adult support and protection work. Positive outcomes included

• being safer
• feeling happier
• being able to make decisions
• staying at home
• having debts cleared
• being more socially active.

2.10 Social workers also recognised the process could be stressful and involve losses for the person as well as gains. This led to them making a number of recommendations about how to help the person participate more meaningfully in the future, which included developing alternative forms of capturing the person's story and looking at different types of case conferences. For this reason it is important that social workers consider using forms of communication beyond standard interviewing.

2.11 Members of the Altrum Risk Research Team and Kathryn Mackay carried out two workshops to discuss findings with social workers and other professionals who do ASP work. Those who came to the workshops discussed the findings, and the issues and challenges they were facing in their own contexts. In addition to these two workshops, the Altrum Risk Research Team ran a number of interactive workshops on increasing service user participation. These dissemination events provided a further mechanism for taking the pulse of adult support and protection implementation.

2.12 Some of the common themes practitioners raised across the above work were:

• Balancing respect of fully informed choices with a duty of care
• Being aware of and responding to the needs of adults, who for the most part cope on their own in the community, in ways that build on their strengths in addressing harm
• Working through issues around intimacy and relationships
• Balancing protection from harm with promotion of healthy risk taking as integral to a good quality of life
• Addressing tensions between giving the service user time to have their say and the procedural demands of agency decision-making: report writing, case conferences etc.

2.13 It was also observed that voluntary organisations seemed to have had more experience of using different type of tools and approaches to involving services users than local authority community care teams who carried out the bulk of ASP work.

Adult protection committees

2.14 The Scottish Government (2009) recommends that the local adult protection committees, who oversee ASP work, have members who have received services and who are carers. The majority of committees now have some form of service user and carer involvement. Some sit on the main committee and have support to do this. Other committees have set up a sub-committee where larger groups of service users and carers can get together in a less formal setting to share views that are then forwarded to the main committee (Scottish Government 2011, Ekosgen 2013). There is a concern that unless the main committee is accountable to this sub-committee it becomes a talking shop (Social Care Institute for Excellence 2011). This accountability can take the form of the committee members meeting with the sub-committee and sharing their paperwork, decisions and explaining why they may not have accepted recommendations made by the sub-committee. In some cases volunteer groups and forums for older people, people with mental health issues, and disabled people choose their own committee members to represent them. However, the perceived meaningfulness from the view point of service users and carers has yet to be evaluated.

2.15 Reference groups are like forums that are set up to advise services. These can be at a local and national level. The Scottish Consortium for Learning Disability (SCLD) has led the way in developing a co-production approach. For example they established a reference group of people with learning disabilities to help them with their work with local area coordinators who are responsible for supporting and promoting independence of people with learning disabilities. They have also developed resources to encourage co-production and hosted events that introduce co-production to more services and organisations.

Raising awareness of the ASPA

2.16 There are different ways to raise awareness. Several ASP committees have asked service users to develop leaflets. The service user on the Dundee ASP Committee and the peer advocacy group she is part of developed an accessible information leaflet. In Forth Valley a similar group also produced a video, alongside a leaflet that told the story of someone who had received support and protection. The design and wording of such leaflets is important as sometimes agency leaflets are not easy to read. For example the Dundee group also helpfully reviewed the leaflets developed by the Altrum Risk Research Project and provided insight into which images were helpful or not. Also some people will require information in a different format.

2.17 A second way to raise awareness is with tools developed by Talking Mats. Talking Mats is a project that uses a specific visual methodology to help anyone with communication support needs to get their views heard in different situations where they may be asked questions about any aspect of their life. They have used this methodology to develop a pack on the ASPA and have run workshops with practitioners and people with communication needs to identify symbols that make sense to them. In the course of this work they discovered that very few people actually knew about the ASPA. They used a co-production approach to train staff and have piloted the new symbols.

2.18 A third way to raise awareness is the use of drama. Several local authorities, drawing on the drama approach of the forum theatre group The Good Life, are developing use of co-produced forum theatre to raise awareness of risks people can face and encouraging them to seek help if they feel concerned. Fife Council is also using this approach to help service users understand better how a person harmed and a social worker could work together to protect them and help them recover from harm. Fife Council has also begun to use the Altrum Risk Research visual tools in awareness raising events such as the annual Carer and Service User Conference.

Developing resources and tools that help service users participate

Tools to help participation in ASP work

2.19 This chapter has already mentioned Talking Mats which is now a relatively well established communication tool which can be adapted to different subject areas and processes. These were originally developed for people with special communication needs but more recently their potential for use with people with no apparent communication impairments has been explored. As noted above there is a real challenge in ASP work about how you support an adult to express views and to participate as fully as they might wish in what are often emotionally upsetting and anxiety provoking situations, and where agencies and staff are seen as holding more of the power.

2.20 The Altrum Risk Research Team, as well as consulting with service users about their concerns about ASP implementation, also worked with service users to devise tools to help address their participation concerns. These tools include a diary tool to help service users track the progress through ASP, and a tool to help them prepare for risk planning. The latter tool frames a risk plan in the positive outcomes the service users wants for themselves and records the strengths and experiences they bring to problem solving. These tools were based on a life planning ethos and use of visuals. They were devised to be integrated into risk planning based on an understanding that it is not about the filling in the right piece of paper in the right way, but about how these tools might shape and alter the discussions and interactions with workers on a one-to-one basis and within case conferences.

Relationship-based work

2.21 This research project also highlighted other factors about ASP work that are worth further attention:

• There is an important cyclical relationship between information sharing and building trust
• Recognition is needed that situations rarely involve clear cut distinctions between goodies and baddies
• There is a need to develop ways of working with complex situations
• In negotiating the need to assess capacity there is a tension between building rapport, involving the person in an empowering way and being clear with them about what is at stake

2.22 In the work undertaken by the Altrum Risk Research Team, participants valued honesty about options, costs, capacity assessment, and other procedures, with clear explanations. They wanted this approach to be part of the relationship they had with any of the practitioners taking part in the investigation. They also highlighted the importance of flexibility about how case conference and risk planning is carried out. They suggested that visual tools can make the most of a person's communication strengths, and can let everyone in the room be human. These techniques could potentially transform a person's inclusion in formal ASP proceedings. Participants expressed the strong view that a successful process needs to incorporate supportive relationships and not one-off advocacy but sustainable support. One of the service user researchers on the Altrum Project explored the metaphor of face to eloquently encapsulate the relationship dynamics at stake for a person undergoing an ASP inquiry:

The word 'face' summed up many important points. Building a relationship means coming face to face with each other. It means considering what face you present to the person at risk, and what you read in their face. A person's face is one of the most unique things about them. The degree to which we read faces is an important part of how we listen to them. Sometimes people who struggle to read words are very adept at reading faces, more so than they are given credit for. Through an Adult Support and Protection journey the person at risk may be trying to save face, or put on a brave face. They may be struggling to find the resources to face things that are frightening and upsetting. An important part of healing is growing new skin over a wound, in other words, a new face. As one of the research team members reflected, it may mean "re-inventing the face you present to the world". All of these things can be summed up as 'consider what's being faced'. (Altrum Risk Research Group 2011: 16)

2.23 Participants discussed how a person can become resilient through ASP work and made recommendations about what support a person might need to develop this at every stage of the process (Altrum Risk Research Team 2011, Brookes et al 2012).

Summary

2.24 The research, evaluations and fora for discussion taken together hold important lessons. Adults and carers have had mixed experiences of ASP. Some experiences have been good but some adults have felt more could have been done to help them understand what ASP was about and to help them have more say along the way. There are ways in which we can support people's participation through giving people more time, changing the way meetings are run, use of drama, pictures and accessibly written tools. The mixed picture of good and bad experiences can be found in England (Social Care Institute for Excellence 2011) and in Wales (Magill, Yeates and Longley 2010).

2.25 However these lessons still need to be promoted, existing tools utilised and new tools developed for practitioners and adults at risk of harm. There is growing guidance across governments, local authorities and national institutions for ASP work: their focus is mainly on recognising the harm, the procedural aspects of undertaking investigations and providing protection. The person's participation in reaching good outcomes for themselves is less resourced. In addition there are tools for general decision-making about care that have been developed for working with people with mental health concerns and learning disabilities but work needs to be done to adapt them to use in situations of risk faced by many different adults in many different situations. What is needed now is to build on the work that has been done so far and to get the examples of how to improve an individual's participation in ASP out to all practitioners and agencies. The next chapter details how this project starts to address that need.