I know that I've handed out piles of leaflets to GPs and groups for them to contact me months later saying they have ran out, whilst I've had no referrals of people from that surgery! I sometimes feel like a broken record when I am talking to healthcare professionals encouraging them to refer patients. "The people most likely to benefit from or need our support are those who a) are least likely to find out about us, least likely to pick up a leaflet in a waiting room and b) least likely to have the confidence to pick up the phone or email or write to us to refer themselves when they are given our information.
Yes, I've heard the argument that if its a self-management service, self-referring yourself is the first step in taking responsibility and self-managing.... but I don't buy that! Self-management isn't just a switch to turn on, it needs supporting, hence support services!
Someone in a meeting recently commented that they'd distributed 5,000 leaflets and had not a single response for their health service.
I went to a GP surgery to see where our leaflets were, and they were hidden beneath two or three other piles of leaflets. When patients are given any leaflets of any condition or service by professionals, some feel that that is the end of the engagement about that identified need, whereas actually what needs to happen is a continuing dialogue to ensure the individual has understood the leaflet and is confident to act on it (refer themselves, or change health-related behaviours for example). This is reflected in the thinking about health literacy - its not just understanding the information, but actually dong something about it.
This was further highlighted when working with a great team on a really interesting project with People First Dorset, looking at accessible information in GP surgeries and hospitals for people with learning disabilities. We found that most people don't look at the leaflets, were too afraid to pick them up, or just didn't think they were relevant. Most people had never looked at the waiting room boards or picked up a leaflet.
I'm not sure what the answer is to getting information out there to patients, carers and the public, but I am clear in my mind now, that its not leaflets.
The panacea of co-production isn't working in creating leaflets... you had create the best leaflet in the world together with patients and the public, but the chances are, people just aren't going to pick it up. To skew an analogy, we can't even get the horse to water, to even decided if it wants to drink...
So lets take the water to the horse... If we really asked patients and carers about how they want information, what would they say? Leaflets? Or people to help them on a more personal level, with the information and the wider issues around that?
Obviously, self-management coaches, navigator, peer leader and social/community prescribing roles are part of the answer, as long as people can get to see them in the first place... how do we find out about a service if we aren't referred by a professional? Oh, we pick up a leaflet! Chicken and egg....
As someone who often quotes the saying about fish, fishing and feeding, I'm aware that these roles can sometimes be seen as just giving people fish, rather than letting them learn how to fish. But when done well and properly understood by commissioner and professionals, these sort of services can teach people to fish, and empower them to feel confident navigating the quagmire of NHS information more independently.