Leading change

Castle Supported Living Ltd, a charity in the Ribble Valley, Lancashire, is registered with the Care Quality Commission to provide personal care to adults with a learning disability living in their own homes. Recognising unwarranted variation, care staff at the organisation engaged with people who have learning disabilities to introduce co-production to further develop and improve services. The programme has led to improved outcomes, experience and better use of resources.

Where to look

Evidence suggests that people with a learning disability tend to have poorer physical and mental health than the wider population and shorter life expectancy (Royal College of General Practitioners, 2018). They also have a greater need to be supported with communication and therefore are less likely to make their views known. (Five Good Communication Standards, Royal College of Speech and Language Therapists, 2013).

“Putting People First” (Department of Health, 2007) recognised that real change will only be achieved through the participation of people who use services. This is more difficult for many people who have a learning disability as a wider variety of engagement methods need to be available to ensure services are accessible.

People with a learning disability may find it hard to understand what is being said to them or they may be unable to speak clearly. They may not have the confidence to attend formal meetings and may not be able to read and process information.

Care staff at Castle Supported Living recognised the unwarranted variation that leads to this group of people not having the opportunity to participate and share their “lived experience”.

The Driving Up Quality Code (Driving Up Quality Alliance, 2013) is a commitment to improving quality in learning disability services. It sets out 5 key areas that indicate the practices of a good organisation.

1. Support is focussed on the person
2. The person is supported to have an ordinary and meaningful life
3. Care and support focussed on people being happy and having a good quality of life
4. A good culture is important to the organisation
5. Managers and board members lead and run the organisation well

The evidence of the unwarranted variation was shown whilst using a self-assessment tool linked to the national Driving Up Quality Code. The Care Staff Lead found that people who use services felt the assessment was “too complicated”, the words were “too hard” and there were “too many questions” and felt they could not share their “lived experience” effectively to develop services.

It was recognised that this applies to many current quality frameworks and this creates unwarranted barriers to the involvement of people with a learning disability.

What to change

Castle Supported Living embarked on a journey to improve its engagement with people so they could be more actively involved as well as drive forward service improvements. After looking at models available the Care Staff leads adopted the “Ladder of Engagement and Participation” (NHS England, 2017) tool as this offers a graphic way that would enable a less complex engagement tool for learning disability. The ladder is based on the work of Sherry Arnstein (1969) ‘A Ladder of Citizen Participation’ and describes different forms and degrees of service user involvement.

Service analysis and user feedback showed the care staff that they were on the lower ‘rungs’ of the ladder of participation. The service went through a two stage approach to increase participation, aiming to move up to the top rungs of the ladder – collaborating with and empowering the people who use the service.

In order to do this co-production is key as it acknowledges that people with “lived experience” of using services are best placed to advise on what support and services will make a positive difference to their lives (Social Care Institute for Excellence, 2018).

A key participation meeting was established as an opportunity to start to develop better collaborative service development and delivery and begin the journey to ‘climb the ladder of engagement’. Established “Tenants Meetings” were re-branded into “Quality Meetings”, changing the focus from social networking to service improvement, with an opportunity for participants to share their lived experiences of the service and for them to identify changes that can make the service more effective. The meetings were designed to engage people and support them to attend including:

• Meeting in a local community venue with refreshments
• Supporting communication through pictures, photographs and objects.
• Use of crafts and fun activities to explore topics
• Taking and sharing photographs
• Celebrating achievements
• Enabling people to engage in a way that is right for them
• Using technology such as talking books

How to change

Following the first few meetings those people who were engaged began to ask questions and share their views about the topics that were introduced. Ideas were challenged and alternative ways of doing things were explored. New topics were suggested, and information brought for discussion. One of the key turning points was listening to and acting on ideas suggested – even when the way forward was unknown. Some of the early ideas from the people supported were

• “Let’s make a video” – funding was secured from the local Clinical Commissioning Group “Prescribing for Well Being Fund” to do this, the video being available on You Tube and one of the people involved sharing her “lived experience” with an audience of 150 GP’s.
• “Let’s put ideas on a tree” – this project resulted in staff and people supported working together to draw and paint a 2 metre high tree on the office wall which celebrate achievements as well as supported review of organisational values, and collect service improvement ideas. Everybody is keen to submit their ideas through drawing, photographs, and words.
• “We want to know more about the Business Plan” – an easy read version of the Business Plan taking up an entire office wall has had an immense impact on everyone. It is there for all to see and is worked on daily.

Adding value

Better outcomes – In the 3 years since the first rebranding of the group, there have been more changes developed in partnership and collaboration with the people supported at Castle Supported Living. Individuals involved have developed their skills and self-confidence and are empowered to influence quality and challenge the way things are done. Some of the changes that have been worked on include:-

• Changes to policies
• Policies written in easy read format and using photographs
• Changes to recruitment processes
• People using services being involved in staff training.

Better experience – People at Castle Supported Living have reported feeling empowered and that they have influenced the quality of the services they use. Individuals have shared their experiences regionally and nationally and have had significant personal achievements. This has included

• Receiving local volunteer awards
• Representing local charities at an event
• One person with learning disabilities received an outstanding leadership award
• One person with learning disabilities became The Guardian Public Servant of the Year in 2017
• A group of people attended and participated in the launch of the national Quality Matters initiative (gov.uk, 2017)

Better use of resources – The outcome of this investment for both the organisation and the individuals involved has been significant as time is likely to be saved by implementing effective pieces of work by planning them collaboratively and effectively. Following the programme, the organisation has been rated as “outstanding” by the Care Quality Commission. This has led to even more opportunities for the people receiving support to be involved in national projects.

Challenges and lessons learnt for implementation

Co-production does not just happen – it needs thought, planning and time to make sure everyone is involved in a way that is meaningful to them. The “Our Lives, Our Way, Our Journey” project highlighted that a small change can result in some very big improvements, way beyond initial expectations.

The main resource needed was time as it takes longer to plan a meeting which engages people and supports communication.

Top tips from Castle Supported Living for those who wish to do something similar:

• Build on what you have
• See what others are doing and ask for help
• Pull in the skills and interests of all
• Be creative and believe in what can happen

Find out more

For more information contact:

• Debbie O’Brien, Registered Manager, Castle Supported Living, debbie@castlesupportedliving.co.uk