Rachel Matthews is an experienced registered nurse by background with 14 years of clinical experience caring for people with heart and lung conditions. Rachel is the Theme Lead for CLAHRC NWL‘s Patient and Public Engagement and Involvement (PPEI) and has an MSc in Health Promotion and Education at King’s College London. Before joining CLAHRC NWL in 2009 and was the Senior Nurse for User Involvement at Royal Brompton and Harefield NHS Foundation Trust.
Her wealth of experience delivering patient care makes Rachel a perfect candidate to understand the complexities behind patient and public engagement and involvement.
These are her words…
Recent events in the UK in Manchester and London have been troubling and concerning. There are many overwhelming emotions. Shock, sadness, anxiety, and fear. What can emotions tell us about how we connect with each other?
In my experience of working in the field of patient and public involvement over the last 13 years, I’ve come to the conclusion – and others I‘ve talked with share this – anxiety is often at the bottom of doing Patient and Public Engagement and Involvement. This may be grounded in a general anxiety about doing an activity when you have little experience. Resources and toolkits to achieve a meaningful process or outcome for involvement do exist but they need to come with genuine commitment and leadership at all levels of the organisation. Anxiety can be grounded in a negative experience especially for patients, carers and families who want to be involved. Anxiety if not identified and responded to can translate into anger which makes trust almost impossible and trust is required to build meaningful relationships for change.
And fear of not doing involvement? What happens then? We seek security in the tangible. Locate the strategy, find a framework, conduct the audit and at least demonstrate we have something to show. I am talking about all of us. How frightening it can be to enter somebody else’s world. Like a foreign land with a language you can’t understand. Who can help you and show you the ropes? Who can help you find your way? The people who can help are usually friendly. They start from a position that understands anxiety. If you ask them for directions they will provide them. Need a phrase book? They’ll have one handy.
At NIHR CLAHRC Northwest London we have co-designed the Exchange Network with these thoughts and ideas in mind. How can we identify and address anxiety? How do we build trust? The Exchange Network is a group of patients, carers, researchers, clinicians and managers who meet together precisely because they come from different places and backgrounds. Our common purpose is to learn together, to be open to new ideas, to create and share a ‘route map’ and ‘phrase book’. Anxiety is to be expected when we encounter something different or new but we face it together. How can we improve healthcare and research together? By starting and supporting a dialogue that fosters enquiry and respect; Challenges and supports and checks out assumptions, doesn’t just guess. Don’t let anxiety get in the way. Allow it to stimulate action and improvement.
If you are interested to learn more about the Exchange Network and how it could help you, contact me at the details below.
Rachel Matthews ¦ firstname.lastname@example.org ¦ Programme Lead Patient and Public Engagement and Involvement