I have worked in patient engagement and patient voice for more than 40 years. I have seen first-hand how a lack of meaningful involvement and effective communication can have a huge impact on the experiences and outcomes for so many people.
I have also observed that when services are under severe pressure they may not fully embrace the reality that for many patients (and their carers) the treatment pathway can be a deeply emotional and exhausting journey full of highs and lows, heavily laden with fears and uncertainties. It is far more than a simple clinical pathway.
There is no doubt in my mind that there are profound complexities in patient engagement. It can be time and resource intensive and outcomes are not always clear or certain. I can also see that there could be a real tension between the demands and time pressures on services and the requirements for effective engagement with patients.
The ways in which that tension is managed and the complexities are addressed can be key factors in determining whether patient engagement really works for all concerned.
Drawing on patient experiences over many years to address the key questions about why engagement matters so much leads to a number of conclusions:
Engaging patients helps them to feel empowered in their own care, giving people a sense of control over their health journey rather than being helpless observers.
When patients feel actively involved, they often have better experiences and feel that their outcomes might be improved. If people understand their condition and treatment options they may feel that it can lead to more informed decisions that they have some ownership of.
Words really matter. The right communication can provide hope and strength, while the wrong words can exacerbate feelings of fear and isolation. The chances that communication will be empathetic and supportive are greater if patients feel part of the process. The feeling that you are alone in this situation can be so destructive, reassuring people that they are not alone matters so much.
I have heard time and againthat thewaiting and uncertainty can be traumatic. Engaging with patients, proactive supportive communication, helps them to feel informed and prepared. It can do so much to reduce the anxiety and fears that are so often associated with diagnosis and treatment.
I have said on many occasions that small acts of kindness can make a huge difference to people in what can be frightening and highly stressed situations. A gesture, a kind word, can do so much to alleviate anxiety and fear, but it is so easy to overlook.
It can be so easy to overlook the fact that patients, especially those with Long Term Conditions, can be trying to navigate their way through two worlds. The world of treatments and appointments, and their everyday world with all of the challenges that life can bring. Integrating that reality into plans for people’s care, treating the whole person, can be so important.
In conclusion, meaningful patient engagement can helpto transform fear into understanding and trauma into dignity. The right support can lead to resilience; it can help patients and their carers to manage their dual realities of treatment and everyday life.
Above all we must collectively see patient engagement as fundamental to the health and care process and a key component of quality assurance. It is so important for people and nothing less will do.
Chris Bain 