The forums allowing patients to help design and improve services

Experts by Experience forums

Cheshire and Merseyside residents with direct experience of services for eating disorders and specialist children and young peoples mental health are playing a central role in shaping and improving care for future patients.

Our NHS led provider collaboratives for mental health have set up Experts by Experience forums to ensure patients, their families and carers are involved in their work programmes to improve services.

NHS led provider collaboratives (LPCs) are a new way of planning and providing specialist mental health, learning disability and autism services. Provider collaboratives aim to deliver care closer to home, invest in community services and drive improvements in patient outcomes and experience.

They do this by changing the way services are delivered with different organisations, including those from the voluntary, community and faith sector, working closely together.

Led by Cheshire and Wirral Partnership NHS Foundation Trust, our provider collaboratives are called EmpowerED Adult Eating Disorders North West and Level Up Cheshire and Merseyside Young People and Families.

As these comments from Experts by Experience forum members show, their voices are already making a difference to the way services are designed:

“It’s a very powerful forum to give a voice back to people who had it taken away from them.”

“EmpowerED has taught me that our stories and experiences have the ability to influence real change.”

How does this improve services for patients?

Our LPCs integrate the voices of Experts by Experience (EBE) into every layer of decision making. EBE forums actively recruit individuals with lived experiences, their careers and family members to ensure a breadth of perspectives inform services and their development.

Representatives from these forums have an equal voice on Partnership Boards and Clinical Delivery Groups (made up of senior clinicians from across the North West to consider whole system review of patient pathways), where significant decisions and changes are made.

LPCs place a high priority on community engagement, particularly with underserved communities, to guarantee the diverse needs of patients are met. LPCs work together with a range of voluntary community and faith organisations to do this including BEAT Eating Disorders UK, Young Minds, and Inspire, Motivate, Overcome (IMO), a local charity focused on ethnic minority communities.

Collaboration with IMO enabled our LPCs to better understand cultural diversity considerations, ensuring that the care we plan and deliver is respectful and inclusive.

Impact of Experts by Experience forums so far

In 2022, Experts by Experience forums have been directly involved in the development and design of the LPC names, identities and websites.

Working with senior leaders, EBE have delivered comprehensive training packages. An example is a session held during Eating Disorders Awareness Week 2023, when over 70 professionals gained insights on identifying and diagnosing eating disorders to improve their understanding and their care for patients.

Targeted training for primary care professionals like GPs has also been carried out, giving insights into eating disorders from the perspective of an EBE. Forum members are now exploring a digital version of the training that can be shared more widely across primary care in Cheshire and Merseyside.

The EBE Programme was recognised nationally at the Patient Experience Network National Awards and has been asked to present and share best practice at a separate event in 2023.

Molly, EmpowerED forum member, said: “It really is empowering to be a part of the forum and I love doing the work we do because it feels like we’re making progress and making real change. Everything I say, feels like it’s listened to and gets taken forward and taking seriously.”

Georgia, Level Up forum member, said: “It gives me a purpose, and as an ex-service user for inpatient services it gives me a unique perspective and I feel like I’m truly able to give back. I like to be able to act as a voice for people who have previously not felt heard, and our feedback will help people who are at the beginning avoid the issues I’ve faced with mental health services.”

You can read more about Georgia’s experience below.

What’s next?

Over the next 12 months our Experts by Experience forums will:

• Review referral processes for both provider collaboratives - understanding the complete patient pathway, from referral to treatment and discharge. This approach allows for the identification of gaps and the development of effective strategies to address them.
• Support with the training of professionals across all partners across the North West
• Continue to engage with communities and influence at a regional and national level
• Continue to review what good inpatient and community treatment looks like
• Begin the recruitment of community champions to volunteer their time to promote services across the North West. The champions will play a vital role in engaging with the wider community to feed into Experts by Experience forums

Additionally, Experts by Experience forums are currently exploring several ways to get as many people as possible involved with our LPC’s, through the likes of social media, newsletters, websites and podcasts.