by Hannah Ingham
Having worked in healthcare for over a decade, I’d like to think I know a thing or two about the sector – the pressures, the challenges, staff priorities, and most importantly what matters most to patients. However, last year my expertise was called into question when I experienced the health service from a different perspective: that of a patient and a parent.
Sure, I’ve been a patient all my life but in the last year I’ve seen the inside of more hospitals and clinics than I care to mention. After a difficult pregnancy I was rushed to hospital for an emergency C-section, my son was born very prematurely, and so began a long journey involving: NICU, SCBU, community nurses, hip clinic, lactation support, consultant follow-ups, GP appointments (so many GP appointments!) physio, health visitors, A&E visits, ambulances, out of hours visits, surgery (for my son) and mental health support (for me).
This experience opened my eyes to the reality of the NHS, good and bad, and both confirmed and questioned what I thought I knew. One thing which really hit home was the fact that the best people to ask about care and service design are those experiencing it, the patients, as ultimately they are who the services are designed for. Seeing the health service through this lens confirmed why patient engagement is such an important part of our work here at ZPB, and why it belongs at the heart of everything we do.
Patient engagement is a discipline which unifies all of our clients, both in terms of informing our client’s strategies, and guiding them in how to do the same. We recommend including end users in every project, which could mean carrying out focus groups or in-depth interviews as part of our insight and research process, conducting surveys, testing marketing content, or working with clinicians to determine the best pathways for the people they treat. This work ensures that communications and other activities are expertly informed and targeted towards the most appropriate audiences and messaging. In addition, we are often tasked with assisting clients in designing their own engagement strategies, which could involve forging partnerships with patient and community groups, carrying out research and the recruitment of patient and public representatives.
Since coming back from maternity leave, I have been drawing on my own experience to further inform my work, for example in defining and advertising a patient representative role for one client, and considering lived experience of mental health for another. I’ve also trained as a Neonatal Peer Supporter which will enable me to continue to deepen my understanding of what patients and wider families need.
I’ve been open about sharing my experiences with colleagues and clients, to help them understand the reality of patients on the ground, and I’m keen to encourage these types of conversation among the wider team.
Below I share what I’ve learned over the past year, to shed light on the patient perspective and why it should not be overlooked.
What I’ve learned about the NHS as a patient and a parent:
1. The crisis is real, and it is being felt at every level
There’s no doubt the NHS is on its knees. I’ve seen elderly patients lined up in corridors, visibly upset nurses, and administrative staff being shouted at by frustrated members of the public. But somehow the health service continues to function, and to deliver excellent care every day and night. We need to protect it.
2. She who shouts the loudest gets heard most
As a parent of a tiny, helpless preemie I quickly learnt to advocate for my son, and unfortunately this often meant (politely) putting pressure on clinical teams. This included following up test results, asking questions, being vocal about any concerns, and most importantly never, ever assuming that information had been passed on from one shift to the next.
3. Staff satisfaction is absolutely crucial to patient experience
Hospital culture starts with the staff, and it comes from the top. Spending time in two neonatal units, I witnessed two very different environments: one with supportive consultants, proactive nursing staff, and a generally calm atmosphere, the other where the pressure on staff was much more apparent, leading to a generally ‘stressy’ feeling. This had a huge impact on my perceptions of the care as a parent and meant that I was a lot more inclined to question things.
4. A little bit of kindness goes a long way
I’m not a ‘hugger’ and I don’t expect hospital staff to be my best friends, but there were a couple of occasions in which people really went above and beyond. For example, a HCA on the neonatal ward left out a nurses outfit for my elder daughter, recognising that the situation was tough for the whole family, and a consultant surgeon told me about her own experience of giving birth prematurely, showing understanding and compassion.
5. The NHS is really quite amazing, and we are lucky to have it
The NHS isn’t perfect, but the bottom line in all of this is that my son is here, he’s thriving, and I’m acutely aware of how fortunate that makes us. There’s no doubt in my mind that the vast majority of those working in healthcare genuinely care about their patients, and the wider system really can pull together when needed, even for a tiny 3lb baby boy.