Imagine you’re parachuted under cover of darkness into Equatorial Guinea, alone and without anything but the clothes you’re wearing. You’re anxious, having never parachuted before, let alone in the dark. You’re scared of heights. You have no map or compass, you don’t speak the language and you don’t know where you are or where you’re going. To make matters worse, you may not have chosen the destination, but you did pay to come here.
You sprain an ankle when you land. Unfamiliar people appear, they talk to you and over you, they gesture but you have no idea what they’re saying. So now you’re a long way from home, in pain, confused and frightened. You have no choice but to look to these strangers for help and reassurance.
Welcome to the NHS from the patient’s perspective.
It’s perhaps an extreme analogy, but for many patients, the NHS is a foreign country. It has its own language, customs, clans, chiefs, food and history. It has a population the size of Equatorial Guinea. You need a map to navigate it, information to understand it and a guide to help you get around. Without access to the right information, in the right format, at the right time, it’s very easy to get lost, to take a wrong turn and to make some ill-informed choices. When we are on holiday, this might mean an unintended wander round the back streets, eating fish instead of a small chicken or having a laugh over a mispronounced word. But when it comes to our health, a lack of information and a poor grasp of the language can have much more serious consequences.
We all need information we can understand and use. Whenever we make an important decision in life –whether it’s choosing a mortgage or a school for our children – we inform ourselves first. We ask around; we search the internet; we might talk to a specialist. We are given information, much of it impartial, to help us understand the options. We look for information that makes sense to us and then when we feel our questions have been answered, we make our choice. None of us would dream of making such important decisions blind, so why do we ask patients and carers to do it every day?
Information in the NHS is often poor quality and provision is patchy. The days of the virtually unreadable photocopied leaflet that’s full of medical and NHS jargon and which gives a biased view of treatment options should be long gone, but they’re not. Patients are expected to make life changing decisions using information that is often inconsistent, poorly written, paternalistic and at times, inaccurate. And that’s when they receive any information at all. I’ve spoken to a woman diagnosed with breast cancer and someone making a decision to end IVF treatment – both received no information at all. That’s scandalous.
Having information to support decision-making is a right in the NHS Constitution. So, it’s not a ‘nice to have’, it’s a ‘must do.’ Yet, a recent Patient Information Forum (PiF) survey of NHS organisations shows just how poor the provision is. Half of respondents said that information was increasing in importance in their organisation, yet one-third said their information service was at risk or being cut. One-third have no specific budget for information and of those that do, the average equates to around 0.006 per cent of the spending for a large acute trust. At a quarter of organisations, there is no one at board level with responsibility for information.
PiF’s recent publication, Making the Case for Information, sets out the evidence for providing high-quality information to patients and the public. It puts forward strong legal, moral, ethical and financial incentives for providing quality information to enable people to better manage their health and wellbeing and make fully informed decisions. Providing access to quality health information, and giving people the support to use it, is the key to unlocking engagement. And, it’s clear that not only is it the right thing to do for patients, it’s also a financial and clinical imperative. It has a positive impact on how services are used, on health costs and on patients’ behaviour and health status.
It seems self-evident that we need information to support shared decision-making, self-care and self-management. Yet, the NHS seems to have blinkers on when it comes to information. Health information for patients and the public needs some major, sustained investment and a coordinated and systematic approach to delivery. It need leaders and champions in the NHS – people who understand just how important information is to all of us, and the difference it can make to individuals, organisations and communities.
It’s lonely out here in Equatorial Guinea – send in the rescue party.
Sarah Smith is operations director at the Patient Information Forum. Follow the Forum on Twitter @PiFonline, email Sarah at email@example.com and visit their website www.pifonline.org.uk or find them on facebook or linkedin.