Guest Blog: Simple steps to involve people and families in their own care

This guest blog is by Penny Phillips, a member of NHS England's Older People's Sounding Board and National Patient Safety Partner. Penny highlights practical steps to engage people and families in their own care and how this can foster a sense of empowerment and confidence in people staying safe and looking after their well-being.

A recent encounter with an older friend and a bumpy flight on a very small aeroplane has caused me to reflect further on how ‘simple steps’ have the potential to make a big difference in patient safety.

A few months ago, my friend visited the hospital for a minor operation and a brief hospital stay. Beforehand, we decided to watch the Simple Steps to keep you safe during your hospital stay video, coproduced by staff and Patient Safety Partners at NHS England. More about the thinking behind this video can be found by following the link.

To begin with, my friend didn’t say too much, but she wanted to take away a copy of the accompanying leaflet. I wondered whether watching the video had made her nervous. But then my friend became curious. She also wanted to share this curiosity with the people around her. There may even have been a run, on new slippers at the retirement complex where she lives.

My friend’s operation was a success, and her hospital stay was uneventful. But she did describe a feeling of empowerment, almost as though she had suddenly been given ‘permission’ to ask questions, as well as receiving the guidance on what those questions could be. She felt more in control and wanted to share her knowledge with others. She also said that it made her feel that safety was a priority.

I imagine this might be akin to the feeling I have when viewing a comprehensive, accessible safety demonstration on an aircraft. My friend also voiced a sense of ownership or partnership. I cannot remember the exact words she used, but it was almost a sense of pride at being trusted to be involved in her own safety. By all accounts, her peers have also experienced some of these feelings in the retirement complex. Perhaps even ‘Strictly’ has been knocked off the top discussion topic, in the communal spaces?

Something else happened after the hospital stay, which demonstrates the value of curiosity. My friend’s medication had been reviewed while in hospital. She knew exactly what she needed to take and when, but being of a generation that generally doesn’t like to waste anything; she considered using up her previously prescribed medication. The name was the same, but the numbers and instructions on the old packets didn’t match her current medication. Instead of just taking four pills daily of her previous medication, because this is what her current medication stated, curiosity intervened, and she decided to ask for my advice. You can probably guess what had happened. The dose of daily medication was the same, but this was now to be spread throughout the day rather than one dose at night. I am fairly sure that my friend would have been told to dispose of the old medication, and she couldn’t be sure whether or not this had been said, but the ‘waste not, want not’ mindset can be very powerful, especially in older generations.

Would my friend have asked someone else if I had not been available? The answer was a resounding ‘yes’. She felt empowered and has since talked to her GP, feeling a real sense of being valued when they actively listened and followed up.

So, where does the bumpy aeroplane come in? I have flown this particular route many times, yet I actively engage with the safety demonstration every single time. I automatically check my position in the plane as soon as I sit down, for example, to see how many rows are to my nearest exit. I keep my seatbelt fastened when in my seat, whether or not the seatbelt sign is illuminated, and I always read the safety card, as well as checking that there is actually a life jacket under my seat.

In many different situations, I have noted that I feel safer and better prepared to look after anyone in my care, when safety information is engrained. My friend may have benefited from watching the video with someone, to promote discussion, and then from sharing with others. I have a strong sense that changing mindsets, repetition and reinforcement are all important in this respect. Sometimes, sensible or rational decision-making can fly out of the window when we are stressed or scared. Basic information presented simply and clearly, even if it sometimes feels obvious in the here and now, may help us to be safe when we aren’t quite ourselves or our environment has changed. It may reduce fear and increase confidence, whether in an aeroplane or during a stay in hospital.

An organisation that wants us to be partners in our own safety, whether this is an airline or the NHS, sets the scene by providing resources, guidance and instruction. This gives us permission to ask questions and be curious.

As patient safety partners, we can encourage the use of these resources to make sure they reach as many people as possible, both effectively and consistently.

Involving patients, carers, families and the public in their own safety and care, can start with simple steps.

We can also take simple steps to change the NHS by taking advantage of the different processes designed to enable conversations about what matters to us.

We can be partners in our own care, and partners in shaping the future of health and care services. I feel incredibly valued as both a Patient Safety Partner and a member of the NHS England Older People’s Sounding Board.

The ‘Simple steps’ video and leaflet can be found here. There are also some useful resources at ‘Your Care Needs You’ (Partners at Care Transitions), which can help prepare patients to stay safe at home when they leave hospital.