From passive patient to Involvement Partner
08 March 2022
After serious mistakes in her care, Helen Pearce worked closely with her local trust so that her experience could be used to improve services. She describes her journey from a ‘passive patient’ to a passionate and engaged Involvement Partner.
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How did you become an Involvement Partner?*
Despite having been a patient with numerous complex health conditions for my entire adult life, it was only three years ago that I was introduced to the world of Patient Experience and Involvement. During a hospital admission in spring 2019, when I was at my most vulnerable, a catalogue of basic errors occurred. Most seriously, the strict procedures surrounding admission were not carried out, resulting in a mandatory safety check being missed. The consequences of this for me were life threatening.
Upon discharge I made a formal complaint to the Trust, because I did not want anyone else to have the same traumatic experience of services. The resulting investigation was thorough, and throughout the process the Trust empowered me to make suggestions for improvement, and many of these became embedded in policy. My care coordinator then suggested that I sign up as an Involvement Partner in order to use my lived experience to help shape services.
It is incredibly rewarding and empowering to see a suggestion you have made become embedded in Trust policy.
What have you done in your role?
In the three years I have been an Involvement Partner I have undertaken recruitment training, allowing me to sit on staff interview panels. I attend case review panels with Patient Advice and Complaints. I have given a talk about Involvement to an ‘Early Intervention in Psychosis’ group, whose members were keen to learn about life as an Involvement Partner. I completed a Patient Leadership course, run by David Gilbert – the first Patient Director in the UK. I am currently involved in the co-production of a new ‘Experience, Involvement and Improvement Forum’ for Community Mental Health Services.
Most recently, I have been attending the Foundations in Patient Experience course, run by The Point of Care Foundation. This training is unique in that the participants are a mix of staff and Involvement Partners. In addition to learning together on the course, we have been encouraged to work together on an assignment to improve an aspect of patient care within the Trust. Working in this way means that barriers have been broken down between staff and Involvement Partners, because we are operating on an equal footing and sharing different skill sets.
Working in this way means that barriers have been broken down between staff and Involvement Partners, because we are operating on an equal footing and sharing different skill sets.
During the ‘engaging and involving patients and communities’ module, I was privileged to lead a session on why involvement matters. Throughout this session I shared examples from my personal experience, both as a patient and as an Involvement Partner. The feedback from this module was incredibly positive and encouraging. Staff were able to gain insight into the life and role of an Involvement Partner, and express appreciation for the work we do within the Trust. Hearing directly from an Involvement Partner seemed to send a positive message that patients should be partners in their own care. It was also an opportunity to reinforce the fact that effective and meaningful patient involvement must be embedded in the values and culture of everyone involved in health and social care.
Hearing directly from an Involvement Partner seemed to send a positive message that patients should be partners in their own care.
What do you like about involvement work?
Being an Involvement Partner is a fulfilling and important part of my life. I particularly enjoy co-production work, where I am in a position to contribute ideas in order to affect meaningful and sustainable change. It is incredibly rewarding and empowering to see a suggestion you have made become embedded in Trust policy. Working alongside other Involvement Partners and staff gives you the opportunity to meet people from all walks of life, and this has been instrumental in building my confidence and sense of self.
The variety of opportunities for Involvement Partners is extensive, from creative design work to attending strategic meetings with management, there really is something for everyone. You can tailor Involvement to your needs and time, doing as much or as little as you want to. Personally, I also find it invaluable that my Trust provides development and training opportunities for Involvement Partners, such as accredited peer support training.
Working alongside the Trust has enabled me to transform from a ‘passive patient’ to a passionate and engaged Involvement Partner.
Maintaining links with the Trust in this way, and working within a supportive team, is an integral part of my recovery. Also, it cannot be underestimated how important it is that I am able to use previous skills from my professional life, which has helped in redefining my identity. Working alongside the Trust has enabled me to transform from a ‘passive patient’ to a passionate and engaged Involvement Partner.
What would you like to see in the future?
At a local level, I have a real passion to co-produce and facilitate a Craven District mental health improvement project. I have always been passionate about improving the delivery of mental health services to people in rural areas. As part of the Foundations in Patient Experience course I have joined forces with our Head of Patient/Carer Experience and Involvement Team, and we plan to use this idea as the basis of our collaborative assignment.
I would like to see more leadership roles created for Involvement Partners, not just at senior management level, but at all levels of healthcare policy and practice. On a wider scale, it was exciting to see the recent advertisements for senior involvement positions at Tees, Esk and Wear Valley NHS Trust. I believe this shines a light on the validity and importance of lived experience leadership, and will hopefully encourage all NHS Trusts to consider creating similar roles.
*Involvement Partners, sometimes known as Patient Partners, are patients and carers with experience of using Trust services. Involvement Partners bring lived experience and a patient perspective to the design and delivery of services.