Experts by Experience are people with lived experience of using, or caring for someone who has used, health and or social care services.
The journey of the Cygnet Experts by Experience (EBE) programme stands as a testament to the paradigm shift which has taken place in a sector which has embraced co-production and the value people with lived experience bring to the table.
Reflecting on the journey to date, and the transformative growth of Experts by Experience within Cygnet, is truly inspiring.
When I first took on the role of Expert by Experience Lead in 2018 there were around 23 services at Cygnet. Today, that number has grown to over 160, marking a significant expansion which has brought along a lot of opportunities for both the organisation and the growing Expert by Experience team to harness lived experience.
From a modest beginning with three Experts by Experience, Cygnet now boasts a team of over 30, supported by a bank of hundreds more, whose insights can be tapped into through the extensive networks of our support organisations.
Driving Positive Change
This growth hasn’t been all about numbers though; we have had the ability to make a bigger impact through fostering positive and inclusive cultures on a national level through the organisation’s growth. Externally, this has led to our team being involved in everything from the Independent Review of the Mental Health Act, the Rapid Review into in-patient mental health services and numerous pieces of national guidance and legislation.
Each and every Expert by Experience who has supported Cygnet over the years has had their own unique journey and challenges they have had to overcome. Having the courage and passion to support others as an Expert by Experience is something we must all take time to appreciate.
Developing strong working relationships with Experts by Experience with different needs, backgrounds and journeys has made this one of the most rewarding experiences of my time here and has allowed for an extensive knowledge base beneficial to the organisation, service users, families, staff and stakeholders. It is also noteworthy to state just how beneficial the role has been for Experts by Experience themselves, some of whom had never had the opportunity to be employed before.
On a personal level, being Expert by Experience lead was my first full time job after getting some experience on the ad hoc EbE pool at the Care Quality Commission. Due to being within in patient services for much of my childhood and adolescence, I had no formal education or qualifications which further hindered any meaningful employment prospects.
The practical experience and exposure I gained through this role enabled me to go straight into a master’s degree in mental health and social inclusion at the University of Hertfordshire. With the organisation’s support I was able to demonstrate that I am able to work at level 7, and I subsequently graduated, which has assisted in my ability to support the team further.
I have seen this same process replicated countless times with former service users who joined us as Experts by Experience and moved on into higher education or full time employment within the sector or another field they are passionate about. In many ways, the role supports individuals as much as it supports the organisation and other service users.
Reflections & Positive Culture
When I look back at articles, videos and the various projects we have done over the years, it’s clear that Cygnet has actively embraced and integrated lived experience into its working fabric, with a positive and accepting culture being a key driving force behind the programme’s success.
The role has transformed over the years to being multifaceted, and engaging with every department and project within the organisation, both on a site and strategic level. It is about giving service users a voice at every level of the organisation, providing hope and inspiring others. We help shape discussions in the meeting and are a critical friend to processes. We act as a reminder to always consider and take into account the fundamental lived experience perspective. The role is about creating change and representing views, with elements of service line specific peer support and peer advocacy being part of our day to day.
The positive culture within Cygnet has been instrumental in shaping an environment where the voices of Experts by Experience are not only heard but valued and actioned. Cygnet has made an effort to foster an atmosphere of inclusivity, recognising that diverse perspectives contribute to a more comprehensive and effective approach to health and social care services.
In addition to the significant growth in services, the influence of Experts by Experience has permeated various departments at a strategic level, bringing about transformative changes. Experts by Experience have played a pivotal role in implementing People’s Council meetings, now a regular feature at every service, giving people a voice at every level of the organisation. This innovative approach has not only enhanced communication but has also led to collaborative decision-making that aligns with the diverse needs of individuals receiving care and support.
Beyond the service level, the impact of Experts by Experience extends to the incorporation of individuals with lived experience in board meetings both regionally and nationally, and everything from co-producing training, initiatives and policy to recruitment processes, guidance and quality improvement projects. This strategic involvement has brought unique insights to the decision-making process and discussions, ensuring that the voice of those with direct lived experience remains central to the organisation’s overarching goals.
This has had a ripple effect on ‘system thinking’ and how departments work. For example, our collaborative efforts with the Estates department has resulted in tangible improvements to the built environment. Experts by Experience have actively contributed to the creation of gaming rooms and social hubs, fostering spaces that go beyond traditional care settings and contribute to the holistic wellbeing of people accessing our services.
Another example is the co-production work that has taken place with our Procurement team to improve food quality stemming from service user feedback. Through involving partnerships with Experts by Experience, the People’s Council and the Procurement department, catering staff, and suppliers, we worked together to enhance the quality of food in our service. Through co-created initiatives such as Chef Development Days, co-producing menus, and a national group chat monitoring food, satisfaction with food quality has nearly doubled in less than a year.
Creativity & Sustainability
We have also been involved in lots of fun initiatives over the years such as the Music 2 Empower project, an initiative launched in October 2019 that aims to bring the positive effects of music therapy across our services and showcase talented service users. A number of participants in the programme have been featured on BBC radio, performed at festivals and gained meaningful employment post discharge.
More recently we have had the pleasure of supporting the Co-sustain project which has been established to promote recycling and sustainability amongst service users, empowering people to recycle through awareness and the physical ability to do so. As the programme has grown I have been grateful for the support of our Co-production Coordinator, Tracy Whitaker, and I am delighted to welcome our Administration Assistant, Gemma Atkins, who has joined our team last week. As the Experts by Experience programme continues to flourish, it serves as a beacon not only for the success of the programme at Cygnet but also for the broader sector. The journey from a modest beginning to a flourishing programme has not only touched the lives of many but has also set a precedent for inclusive and innovative practices within Cygnet.
Celebrating the achievements of the past, I am eagerly anticipating a future where Experts by Experience play an increasingly pivotal role in further shaping national policy, fostering positive cultural change, and ensuring services continue going above and beyond with lived experience perspectives and recovery being at the core. In 2024 we will launch Cygnet’s Co-production Strategy, reflecting our ongoing commitment to continue enhancing and developing our existing structures and work to date, with power-sharing and working together as equal partners being the primary aim. The strategy will support Cygnet’s wider strategic and organisational objectives and we look forward to sharing more on this with you in the coming months.