Co-producing a story of recovery: A Books Beyond Words book group

Jane Bourne

Introduction

There are approximately 1.5 million people in the UK who have an intellectual disability (Mental Health Foundation 2018), which is defined by the Department of Health (Department of Health 2009) as a “significant reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood” (p. 14). These individuals are amongst the most socially excluded and mistreated groups in Great Britain, and often need on-going daily support from family, carers and/ or support teams. At any one time 40% of adults with an intellectual disability diagnosis also has a mental health difficulty (England.nhs.uk 2017). In 2017, NHS England's Transforming Care Agenda aimed to change this as they ensured better mental health care in the community and making sure any admissions to hospital were as short as possible. Unfortunately, recent figures from MENCAP (Mencap 2018) still show an inadequacy in community services in terms of both quality and access particularly around integration into communities. This has meant that many people continue to be at risk of the revolving door back to hospital (Gamie 2018).

Hospital admissions unfortunately do happen, and once people are ready for discharge this can be another challenge (England.nhs.uk 2017). Hospital settings can offer some people reassurance and make them feel safe; as they become comfortable seeing the same people and know the regular ward rounds and routine of activities. When it is time to return to the community, where a person first became unwell, it can provoke some anxiety. Having a well-planned discharge pathway can alleviate some of these worries attached to discharges and offer a person some confidence and reassurance that they will be supported (Head et al. 2018). By gently exposing people to a community facility, where they are able to meet similar people, as part of their weekly routine, normalises a community environment and can prepare people for discharge (Ager et al. 2001). Therefore, the forming of community partnerships between staff from an in-patient Treatment and Assessment Unit, past patients and a local library was helpful in supporting people returning to living in the community. The benefits of past patients being part of the production meant that as they had themselves followed this pathway they could support current patients through a peer support role, due to their own lived experiences.

Partnerships for developing ‘bridging’

’The Book Group’, as an initiative, was first developed by Northumberland, Tyne and Wear NHS Foundation Trust (NTW) in partnership with Hebburn Community Library, which is located within walking distance of an adult inpatient Assessment and Treatment unit. Developing partnerships between different working sectors, such as the public and cultural sectors, and the voluntary and independent sectors, has been of great benefit in supporting ‘community bridging' (Hackett & Bourne 2014). Low-cost accessible community space is often problematic for the NHS to fund outside hospitals and since the theme to community bridging is linking to the community, the development of relationships and partnerships outside the NHS and NHS property is a priority (Sutton & Gates 2018). Co-producing a model of care between in-patient services and a partnership with an accessible community facility such as the library meant that people could be safely supported, and ‘bridged’, directly into the heart of a community (Hackett & Bourne 2014).

The library is in South Tyneside, near Newcastle; it is a new build, with a café, swimming pool and leisure suit; and seen as hub for the local community. The library is part of the ‘Safe Place’ scheme, which is aimed at helping adults with all kinds of disabilities handle day-to-day challenges like reading and writing, being bullied and needing help or even something as simple as forgetting where they left their mobile phone or wallet. The intention of the scheme is to make it easy for vulnerable adults to find ‘safe places’ they can easily access, which can offer long-term supportive networks (Keyes & Brandon 2012). As a venue the library was ideal for this community-bridging project.

The library when approached with idea of ‘The Book Group’ was enthusiastic and eager to support the project. They initially purchased 15 copies of ten independent titles, from the Books Beyond Words series that were seen as the most suitable (see Table 8.1). They offered a private room, with tea and coffee facilities on a weekly basis for ten weeks, without cost. Visiting the library allowed the group to familiarise themselves with library staff over the ten weeks, who assisted people in feeling comfortable, so they felt able to access the library when the group was not running. The idea of the facility being a ‘safe place’ with familiar people also allowed people to reach out and build positive relationships. This partnership development meant that the libraries membership also grew, and their ongoing inclusiveness agenda was met.

Apart from people accessing the book group, the library invited everyone who attended to enter a Six Book Challenge. This is a scheme run by The Reading Agency (Reading Agency 2019), which takes place each year in

80 Jane Bourne

Table 8.1 Book titles

1

Making friends

  • 2
  • 3
  • 4
  • 5
  • 6
  • 7
  • 8
  • 9
  • 10

Food, fun, healthy and safe Mugged

A new home in the community

The drama group

Speaking up for myself

Feeling cross and sorting it out

Exercise

Falling in love

George gets smart

libraries, colleges, workplaces and prisons. The challenge invited group members to read six books, review them and enter prize drawers, which all of them did, in the form of the Books Beyond Words series with pictures, audio books or, when people were able to, reading books (Hollins 2016). The library offered people some autonomy and a place visit independently and access different accessible books, music and films, which many had never done before. Each book group member, including facilitators and support staff:

  • • Became a library member
  • • Took part in the ‘six book challenge’
  • • Used a range of library resources in addition to the book group books, such as audio books and picture books.
  • • Accessed the internet

‘The books’

The resources for the group from the Books Beyond Words series, were developed for people with an intellectual disability, by people with intellectual disabilities on topics relevant to their needs. They were first produced by Psychiatrist Baroness Sheila Hollins, as an aide for individuals who find reading difficult, but can understand pictures. Information about the books can be found on their website. Each book tells a story through the pictures, linked to the title. The book group’s facilitators were a registered dramatherapist, who had some independent training from the Books Beyond Words trainers on how to use the books, and a Positive Behaviour Support Nurse. Both facilitators were based at the hospital and both were familiar with group members, from the hospital and the community. The book group ran weekly, and people supported each other to share a story together

Co-producing a story of recovery 81 through the use of pictures. Each group member was invited to speak about a page in the book autonomously, so as to help with confidence building, turntaking skills, concentration, participation and communication. The ten titles that were read throughout the course of the ten-week pilot program can be seen in Table 8.1. The titles often started a dialogue about the subject between the group.

Aim of the research

The project was co-produced to offer a gradual exposure to the community for people with an intellectual disability and mental health difficulty who were ready for discharge from a Treatment and Assessment Unit. The research had three aims:

  • • To see if friendships between people in hospital and people living in the community, who had similar transitional lived experiences, could help support a peer’s discharge.
  • • To understand if the shared narratives that allowed people to reflect on personal experiences through the context of the different stories were helpful in bringing people together.
  • • To identify if the strength of a community setting such as a library could offer an immediate and long-term supportive environment for vulnerable adults.

Methods for evaluation

The main source of data collection was through interviews, which were with: current and past patients, who were supported by staff if needed, support staff who attended the group and the library staff. Using qualitative research gives the maximum opportunity to learn from peoples’ perceptions and experiences (Richie & Lewis 2003). It seeks to answer the questions such as ’What is going on here?’ and to get descriptions in detail of what is happening in a specific community and it can offer a lived experience around a phenomenon (Paley 2018). The focus of this research was to explore if we could co-produce this kind of group and what participating in the group offered people.

An evaluation of the books as individual stories was also completed alongside the research. This was done at the end of each group session, when each book was rated using a rating scale from one to ten. The number scale was placed on the floor as a visual aid to help people with this process (Table 8.2). Group members were invited to either stand on the number they rated the book or call out the number from their seat. Comments linking with these scores, in relation to both the book and the development of the group story, were also discussed and documented.

82 Jane Bourne

Table 8.2 Group average book ratings

Books

Ratings

1. Making friends

6

2. Food, fun, healthy and safe

6.2

3. Mugged

8.7

4. /1 new home in the community

4.9

5. Drama group

9

6. Speaking up for myself

5.1

7. Feeling cross and sorting it out

6.3

8. Exercise

9

9. Falling in love

7.7

Twenty people were interviewed for the research project and invitations were extended to everyone who had attended the group. Each interview lasted half an hour and each interview was recorded and transcribed with confidential identifiers coded to anonymise the group members. Interviews followed a semi-structured topic guide with open-ended questions. It is understood that open-ended questions can enable people with an intellectual disability to participate in research much more easily; although this is subject to an individuals’ communication skills (Porter & Lacey 2005). Also, using open-ended questions can produce more accurate data from people with an intellectual disability as it can change the tendency to recall words most recently used by the interviewer (Kroese et al. 1998). Additional data was also obtained from field notes gathered from the NHS facilitators. Consent for the research was obtained from everyone involved.

 
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