Lived Experience Lead for Acute & Crisis Care Pillar, Sophie Green
“I’m a 45-year-old woman with 45 years’ experience of battling with my mental health. I’m also newly diagnosed as being on the autistic spectrum. I love rugby (Northampton Saints season ticket holder), going to the theatre, music, comedy – particularly stand-up, but my biggest passion is mental health and educating others about it.
I started my involvement as the original service user for the Lived Experience Advisory Panel (LEAP) with the Personality Disorder Hub. Four of us sat in a room with a blank piece of paper, trying to figure out what needed to change and how. We began with informative leaflets about the service, instantly making it more identifiable, before recording a video of my experience going through Dialectical Behaviour Therapy (DBT) for the website. Our work provided future service users with an insight into what the treatment would be like – and how far I’d come since completing the therapy.
As well as reassuring service users and carers, our co-production work also benefits NHFT staff. LEAP helped created training, so health and care colleagues could better understand the impact of Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder). This training is still being delivered at the Recovery College. Having benefited from the training, a psychologist from the Acute Liaison Service (ALMHS) wanted to do create something similar. I was subsequently invited to discuss some training with them – and it’s something I continue to do.
I am the Lived Experience Lead for Acute & Crisis Care pillar. My role allows me to sit on Steering Groups – where managers, carers and service users combine to discuss NHFT services and pathways. The big changes occur in these meetings, shaping the future of services. I meet the assistant director of the crisis pathway, discussing new initiatives. The service user’s voice is very important here. I even sit on interview panels for different services within the trust.
Applying lived experience is also important when things go wrong. I sit on the Complaints Review Panel, and the Peer Review Panel for complaints. My thoughts on any complaints and how situations were handled are valued and I feed them back into the panels to help drive improvements to services.
I really enjoy involvement. I get to make a difference for other service users, I get to challenge stigmas surrounding mental health within the acute hospitals, I get to educate others and share my story with a hope of making things better for others. My confidence has grown and I get to do things that I never thought I could. I have learnt so much about myself, how to be around others and how everything is rarely as its seen. I spent so much of my life seeing everyone just getting on with life – and yet I didn’t feel that I could. For the first time in my life, I feel like I belong. It’s something worthwhile and something that I’m proud of. Every involvement that I take part in is an opportunity for me to better myself and make someone else’s experience better.”
Lived Experience Lead for Outcomes-Based Pathways Pillar, Andy Willis
“I am a former service user of secondary mental health in Northamptonshire, having experienced six episodes of severe mental illness over a number of decades. I have a joint diagnosis of Recurrent Depression and Emotionally Unstable Personality Disorder. Having been discharged in December 2017, I was given an opportunity to join the Personality Disorder Hub’s Lived Experience Advisory Panel.
This provided me with an opportunity to be able to give something back to a care system that has supported my recovery in the past, as well as highlighting the value of co-production.
Through involvement, I’ve since been given further chances to contribute through a wide range of co-production activities. Alongside others, I voice my lived experience to contribute to service changes. These are designed to further improve recovery outcomes and patient experience.
The experience has not only been a privilege, it’s also supported my own sustained recovery. I’ve regained my self-esteem and rebuilt some purpose and structure in my life following my last protracted period of severe mental illness – during which much of my life had unravelled. Involvement has helped my self-confidence and has also helped me to feel valued. In simple terms, I’m just pleased to be able to make any contribution that may help others who are struggling with mental illness.
I currently co-chair the Adult Mental Health Patient Experience Group with Anne Rackham and the Mental Health Collaborative’s Outcomes-Based Pillar with Jen Holling and Catherine Massey.
Done well, co-production provides an equal voice for service users – working in partnership with experts by training and profession – to positively affect and contribute to service change and improve patient experience. Co-production truly values the lived experience contribution that patients and carers can make – this forms a uniquely powerful partnership, which consistently results in positive change and improvement. Crucially, the approach is supported at all levels of leadership throughout Northamptonshire Healthcare NHS Foundation Trust.
The ambitions of the long-term plan for mental health provision – and the ongoing development of Integrated Care Systems – place patient and carer voices at the centre of a needs-based approach to care. As such, it is vital and fitting that the transformative work to enact this has placed co-production and collaborative working at the heart of this process of change.
Patient and public involvement has already enabled NHFT to develop an outcomes-based framework based on a series of ‘I’ statements relating to care and patient experience. With this already in place – and a genuine commitment to co-production already established – it was no surprise to see a co-produced approach throughout each stage of the ongoing ICS transformative work that has taken place this year, as well as the new localities-based community mental health team initiative centred on the Primary Care Networks.
All four pillars of the Mental Health, Learning Disability and Autism Collaborative for Northamptonshire’s Integrated Care System maintain a clear commitment to the co-produced approach, valuing the voice of patients and carers; with each pillar including a Strategy Group that is co-chaired by those with lived experience of services.
It can only be hugely beneficial that best-practice co-production and a clear commitment to patient and public involvement is established in the widest sense going forward to all areas of Northamptonshire’s developing Integrated Care System.
Co-production has been at the heart of service changes within NHFT and wider with lived experience, alongside experts by training, continuing to have an important input into all areas of development. The intensive period of change this year continues to be seen as an opportunity to review and evaluate established processes and ways of working as part of an ongoing commitment to improvement. The value of lived experience and its role in supporting recovery is also seen in the expansion of Peer Support Workers under the long-term plan.
Co-production groups exist for all of the main mental health care pathways and recovery interventions, with newly formed countywide forums this year for hospital, community care and the crisis pathway building on existing co-production initiatives. This commitment to co-production is also evidenced in the new, developing Complex Trauma Psychological Service within NHFT.
Finally co-production and a collaborative approach that values lived experience is also an important focus of recent patient safety initiatives.
The Trust recognises that co-production and lived experience can add real value to the important and complex challenge of suicide prevention and other initiatives to reduce self-harm.”