Giselle Cope and Laura Lovejoy-Carter

Rose Gets in Shape

Background 

St Andrews Healthcare has co-produced a ‘specialist communication tool’ picture book called Rose Gets in Shape which has been published by Books Beyond Words for people with a learning disability. 

This project will utilise the book Rose Gets in Shape within our secure inpatient learning disability pathway to support the reduction of obesity and to promote the physical wellbeing agenda.  

The project will be co-designed with patients to ascertain the effectiveness of the book in supporting patient health outcomes. The intention is to then publish a paper to share practice on how patients have used the books in addition to the benefits of using this type of publication.

 

This project promotes full and meaningful service user inclusion to develop accessible resources to support the physical health, mental health and inpatient experiences of our patient population

 

The project supports both the organisations and national strategies (see www.gov.uk/government/publications/valuing-people-a-new-strategy-for-learning-disability-for-the-21st-centurywww.gov.uk/government/publications/valuing-people-now-summary-report-march-2009-september-2010 and www.ndti.org.uk/uploads/files/Obesity_RA_report_final.pdf) for learning disabilities which has a focus on physical health care needs, reasonable adjustments, communication and personalisation.

This project promotes full and meaningful service user inclusion to develop accessible resources to support the physical health, mental health and inpatient experiences of our patient population. It will aid in developing high quality health care and training/education in this area. These and future publications will align and support the right care approach for conditions such as epilepsy, diabetes, and heart disease. 

Going forward, the development and co-production of future titles could be supported.

Aims and objectives

  • The project proposed a two-stage approach. The first stage allowed for baseline information to be collected via focus groups. This information will inform the second stage of the project by examining the effectiveness of the book when used within a one-to-one, group and structured group facilitative process
  • Setting up ‘pop-up book clubs’ on the inpatient wards would allow the project to be embedded on a wider scale, provide ongoing evaluation and outcomes.  Medium to longer term this would allow a forum for co-creative reading, shared decision making and understanding on various topics ‘making every contact count’ with patients
  • To publish a paper to share best practice and learning on how patients have used the books in addition to the benefits of using this type of publication and approach
  • To develop high quality health care, training and education in relation to obesity

Medium/Longer term aims:

  • To develop patient led outcomes for the inpatient population 
  • To review, align and support the right care approach within our inpatient learning disabilities pathway for conditions such as epilepsy, diabetes, and heart disease  
  • To evidence that the care pathways are person-centred and take account of reasonable adjustments
  • To demonstrate the value and impact of utilising Books Beyond Words titles and various facilitation processes to reduce obesity and support healthy life choices 

girls with down syndrome in kitchen


Activity to date 

  • June - September 2017: A story board presentation was developed and presented to patients at the patient-led audit group with a view to establish interest in this work. The Books Beyond Words
  • Chief Executive Officer and founder Baroness Hollins were informed of our project intentions
  • October 2017: A core project group was established and fortnightly meetings set.  Ways of working was established and key stakeholders identified 
  • November - December 2017: Exploration of the book and methodology. Two wards were identified to take part and an internal project sponsor was elected by the group. Initial resources were identified and purchased
  • December - January 2018: Collaborative working was established with the core project team at Books Beyond Words
  • January 2018: Training around visual literacy techniques, book usage and book methodology was delivered by Books Beyond Words to six nursing staff members. Due to a change in staffing, a new nurse was identified to lead the project and a handover took place
  • January 2018: Two interactive poster presentations regarding the project took place at patient community meetings. Patients self-registered their interest in taking part in the project. The core project group designed the evaluation methods for the focus groups 
  • January 2018: Two focus groups took place on women’s medium and low secure wards with a total of ten patients. Data was collected and key themes identified from the analysis
  • Next steps have been proposed for discussion with the project group, expert mentor and Books Beyond Words.  This will include the piloting of ‘pop-up book clubs’ in February 2018
  • Support via expert mentor to date has been through email communications. Due to personal circumstances we have not been able to meet face to face.  However, this is factored into the next stage of the project

Outputs to date

  • Project ideas successfully introduced to patient groups
  • Multi-disciplinary team involvement
  • Conclusion of focus groups
  • Project scoping activity via a face to face meeting between the core project group, Books Beyond Words and expert mentor to look at proposal for stage two of this project

Lessons learned

  • Establishing effective ways of working has been a challenge. We have had to be creative to keep momentum and focus. We have used different technologies to allow the project group to meet, including video and teleconferencing. Continued review of our ways of working and role expectations has supported us in the challenges with regular staff/patient participation. This will be key in stage two of the project
  • To ensure momentum and commitment to this work it was important for us to elect a sponsor. This has ensured access to resources, support at both a clinical pathway and at board level
  • Important to continued momentum of this project will be sharing and celebrating success along the way. This will be explored with patients and staff in February’s meeting

open book

 

Reflections on impact

  • The impact to date has been gathered though discussion with patients in the co-design group and the two focus groups 
  • Further impact will be measured through stage two of the project. This will aim to measure motivation and behavioural change by utilising a cycle of change methodology within a one-to-one, group and structured group facilitation process 
  • Following each ongoing pop-up book club there will be a visual and interactive evaluation process co-designed with patients which will capture experience and any new learning from both the topic and the process
  • A reduction in levels of obesity
  • Undertaking an economic assessment of this project. This will link and map across to the review of the right care approach and consideration and formulation of patient outcomes and any reasonable adjustments
woman exercising

The way forward

  •  The project demonstrates an effective model of working with people with a learning disability to achieve health improvement benefits. This model could be implemented to address a wider range of health issues 
  • The project could be repeated by other groups, which would increase the reliability and validity of the research evidence in relation to measurable outcomes
  • Demonstrating the value and benefits for patients, staff and organisation through an economic assessment framework. This could include benefits arising from improved health status and reduced health problems for the individual, a reduced need to access secondary health care services, staff interventions having a more positive focus and outcomes, and reduced costs to complications arising from obesity e.g. type 2 diabetes
  • Publication of the project outcomes and specific case study examples
  • The ‘pop-up book club’ model can be replicated with ease and sustainability across any health care organisation, providing people with learning disabilities the opportunity to engage in life choices, decision making and meaningful social interactions. Book clubs can also combat loneliness and provide a setting to interact and discuss thoughts, feelings, worries and offer support to fellow book club members
  • Developing new evidence based appropriate resources with Books Beyond Words that can used by the learning disability population

Sustaining momentum  

  • Continued co-design of the project and evaluation with staff and patient led facilitation 
  • Ensuring that stage two of the project is undertaken to establish effectiveness
  • Shared decision making and inclusive working with all key stakeholders 
  • The sourcing of funding opportunities to support stage two of the project
  • Undertaking an economic assessment will provide a framework and language to assess the value of the project and demonstrate its validity. This will help to design data to demonstrate value for roll out and sustainability not just from a monetary perspective but will take account other benefits also
  • An active project sponsor and a core project group in which the ways of working will be regularly reviewed
  • The ‘pop-up book clubs’ with patient and staff facilitation will help to embed the project. Working towards total user led facilitation. The training to support this to be facilitated by Books Beyond Words. Evaluation processes co-designed and undertaken after each book club facilitated by staff/patients so that new learning, understanding from the topics and process can be captured
  • Ongoing working collaborative with Books Beyond Words 
  • Sharing and celebrating successes internally and externally