Over the last few years, I have been privileged to be part of some very important discussions around supporting parents and families within healthcare. As a patient rep, it is always a bit daunting to try to have your voice heard among those who have the responsibility to set up and run services. But over the weeks I’ve wondered as healthcare providers do we truly value patient engagement?
One of the projects I helped with was supporting babies after birth to prevent admissions to a neonatal unit. The last meeting I attended was with many wonderful people from neonatologists to midwives and so on. There was much wisdom offered from the medical side and of course, I was there to offer the view from the parent’s side. For me, however, the meeting was especially challenging. As we sat and discussed the needs, risks and difficulties faced by babies who require neonatal care, I found myself thinking back to the weeks I spent with my daughter in our local unit. To hear first-hand from doctors and nurses how serious certain conditions are and to know that your baby was one of the many who struggled at the start of their life is profound. So too when I have spoken about my journey of perinatal mental health or my experience of birth trauma, to revisit those experiences and in some ways relive them is hard.
As I lay in bed that night thinking over the meeting I thought of all those who give of themselves, often voluntarily, to help shape healthcare and the services provided. Many are living with long-term illnesses that have affected their quality of life, some have endured cancer and its painful treatments, and others have cared for loved ones ravaged by an illness that eventually claimed them. Others like my friend Catherine have lost precious babies, or like Helen who have had a child seriously ill. Others like me have suffered and are still suffering from birth trauma. Many of us have been through experiences that have been difficult beyond words, they have tested us to the edge of what we thought we could possibly cope with. For some we are changed forever, others are still coping every day with the difficulties and loss that illness brings. We share our experiences and our journeys because we want to make a difference for others. We hope that by sharing both the good, but also the times when care was lacking, it will help to shape the future so that others can access the help they need. Yet when we leave that meeting, as we go home that experience goes with us because it has touched us and is part of us. For those who are struggling in pain or with a serious illness the efforts to attend meetings can be physically draining. There is an emotional cost too and while our experiences bring valuable insight they can leave us feeling vulnerable and exposed. For others who may attend it is often another part of their working day, another meeting in the many that they have attended.
So the question is do we truly value the support given by those who serve as patient reps?
Do we fully understand the emotional side of patient engagement?
A while ago I attended an event for improvements in neonatal units nationally. On my table again were doctors, nurses, midwives, managers and heads of services. When discussing the various subjects there was much to be said. Pathways, staffing, funds, policy and procedures, yet the patients and their families were hardly mentioned. At first, I was quiet, overwhelmed by those around me. My nails dug into my hand and I bit my lip, but I was determined to speak up. Yet when I did no one listened. I was talked over, interrupted and at one point was told I had no idea what it is like to work in the system and how patients now expect too much. While I was there as a patient rep I also work in the ‘system’, I know the pressures and the challenges, but they did not know this. All they saw was a ‘patient’. So I fell silent, my voice meant nothing.
I’ve also recently had the privilege to help my local trust set up a perinatal mental health service. Every meeting I went to I felt welcome. I was listened to and was able to give lots of information about what is available for families nationally as well as what it is like to suffer from perinatal mental health issues and what is needed to help at such a difficult time. I truly felt equal to everyone, part of the team and like I had value in their eyes. At every meeting, the lady who chaired would express that they were lucky to have me there and I felt privileged and honoured to be with them too. It helped me build up good relationships and also opened the way for greater discussions with many agencies, services and staff, some of whom had little knowledge of perinatal mental health. What I saw was everyone trying their best and willing to listen. It built up so much respect for both of them for me, but also me for them, as I saw the frustrations and desire to do better. For me, the emotional cost and physical costs were worth it because I was making a difference and my worth was appreciated.
A recent study around patient engagement found similar experiences, that some felt they were listened to and valued, whereas others felt that they were an outsider and more of a tick box.
So we could all ask ourselves, do we value patient engagement? Do we value those who join us to share their experiences often at cost to themselves? Are they just so we can tick a box, to say that we have included them?
What about how we also treat those who join us from the patient’s perspective? Do we make them feel welcome, and part of the team? Do we ‘listen’ to understand and value what they have to say? Do they become our co-workers/planners in service delivery? Are we willing to put aside position and hierarchy to make sure that we can give those who need our care the best that we can offer?
It can be challenging and hard to accept that we may not know what patients need, after all, we may feel that we are with them every day caring for them. It can be hard too to hear that what we thought was a priority for patients is actually not the case and that other things matter more. It is never easy also to hear where we may be letting individuals down with the care we provide especially when everyone is under more and more pressure. But when we make patients and their families our partners, when they are valued and listened to, when we allow them to guide and mould services then something happens. Not only do we make our services better for those who need them, but we also improve things for staff because they will have the satisfaction of delivering care that they know will improve not only the physical but also the emotional health of their patients. But also we do something else. We show our patients that they matter, that we care about them, and that they are more than a name or a number. We also show them that when they speak up when they share their pain and their journeys that their suffering isn’t in vain, that the emotional and physical cost while great, is valued and they are not simply a tick box but to us, their insight and experience is priceless and changing the world of healthcare for us all.
So let us value patient engagement, let’s welcome those who offer to help. Let us work together, learn from each other, and build respect and relationships. Let us see our services as having the potential to grow and improve, with the help of those that use them. Because eventually we are all patients and we all need to feel valued.
For great examples of Patient engagement please see the #matexp maternity experience campaign