In an age of instant access to news and data, on the go and 24 hours a day, patient access to healthcare information and decisions remains unreliable and poorly connected. An independent council in Northern Ireland is trying to change this, as Maeve Hully explains.

Barack Obama calls it citizen participation. David Cameron calls it the big society. Democratisation is very much in vogue and being seen to include “the people” in decision making processes is an integral part of this

We now face a set of circumstances which will dictate how we live for the next few generations and beyond. The financial and demographic challenges facing our communities demand answers to difficult decisions. 

We live in a world where we can update our Facebook page on the way to work, tweet during meetings and access news anytime, anywhere. In spite of this instant access to communication, many people still feel uniformed and disconnected from the decisions which affect their lives.

Cuts and changes in health and social care services in Northern Ireland are in the offing, but, are patients being listened to and are their views impacting on what and how services are being planned and delivered and do they know what is happening?

Established in 2009, the Patient and Client Council acts as an independent voice for patients, clients, carers and communities on health and social care in Northern Ireland.

For anyone involved with health services, patient and public involvement are very much part of the vocabulary and have been for a long time. There are undoubtedly many examples where policy makers, planners and providers of health services to work in partnership with service users and communities. However are the public really at the centre of the decision making when it counts?

Those affected most by these decisions have to be involved in the debate on which path we take. Without that involvement how can a successful outcome be achieved? We have been working with patients and the public, to bring about real change to services, including mental health and communication with patients at genitourinary medicine clinics. 

People can only participate in discussion and decision making if they are given information, given the opportunity to participate and are able to see how their views affect real lasting change. This doesn’t mean that everyone can have everything they want, and people understand this. What is needed is trust in the process and knowing that they are being listened to.

Delivering this requires challenging leadership and a commitment to resources. The resources question will not be easy to answer but there is a real opportunity for us to be innovative and find a different way to do things. 

Necessity is the mother of invention. There is no greater necessity at the moment than involving people in deciding how they and their children will lead their lives. That should drive everyone in health care to find better ways to involve people in decision making.

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