A patient perspective: we can’t afford to be patient about involvement any longer

As a person and a patient, I care deeply about involvement. I know it helps me as a patient to live more sustainably with my health conditions and I know that, in turn, can help the NHS to exist more sustainably too.

A report published today by The King’s Fund – People in control of their own health and care: the state of involvement – finds that, despite all the tools and knowledge being available to empower patients and give them greater control over their own health and care, we have not seen significant progress.

At first glance, the report may feel like we’ve been standing still for a decade when it comes to involving people. But what it really shows is the dedication and determination of those who ‘get it’ and who have been pushing this agenda in such challenging environments and cultures for years.

These are people who see this level of involvement as a way to empower individuals and communities to live well and have a healthy approach and attitude to their health. These are people who understand the secondary gains that this sort of involvement creates for the system.

The report highlights eight different areas that form the basis of a continuum of involvement that extends to the collective level and beyond.

Eight priorities to transform individual involvement in health and care

These areas of involvement are the foundations of the person-centred health care system we hear so much about. They can help us turn the rhetoric into tangible experiences for people accessing services.

My experiences of living with long-term health conditions include being supported to self-manage by certain health care professionals, third sector organisations and peers. This support made the difference between being alive with my health conditions and living well with them. My parents are a vital part of that support – the occasions when they have been involved in my care have helped me a great deal.

I also know that I have benefited from service improvements, such as telephone consultations with my specialist nurse, that have been developed because of patient feedback. I hope that some of the feedback I’ve shared about my care can improve future patients’ experiences.

Some of my less positive experiences have made me aware of the practical and emotional difficulties that can arise if you are not involved in your own care. Getting involved at the collective level and working with inspiring patient leaders is a key part of the solution.

However, these eight areas of involvement are not a list of ‘either/ors’; they cannot be employed in isolation from each other and for that to be considered to have ticked the ‘involvement’ box. They are not single interventions. Collectively they represent a fundamental cultural shift.

The report acknowledges that despite progress, barriers still remain. Discussing these barriers is necessary, but not sufficient. The next step is action. I hope that you will read the report, and that it will make clear the importance of involvement at the individual level. Having established that, what is your goal to start making a difference?

Although I am a patient, it doesn’t mean that we can afford to be patient about the involvement agenda any longer.

Anya de Iongh is a patient leader and self-management coach. She tweets as @anyadei and usually blogs on the patient patient website.