Presenting health service information in the language ordinary people speak and listening to public feedback will do much to improve communication, says Hilary Spiers reports
Question: Why can't the NHS use plain English?
The short answer is: I do not know. We all know we have a problem; we all say we have a problem. We promise no more jargon; we use words such as user-friendly and accessible; we sign up to the code on openness - and still we get it wrong. I write this article with some apprehension as I am as guilty as any of us of falling into the seductive and comfortable embrace of NHS jargon.
North West Anglia health authority (covering north Cambridgeshire and west Norfolk) has been taking part in a public involvement exercise in the local town of Wisbech for almost a year. It started with a debate in the local paper over the future of the local hospital. We decided to canvass public opinion by sending out postal questionnaires, asking over 2,000 residents what they wanted from local health services, what they valued about what they had, and how they might feel about possible reconfigurations - sorry, changes. Around 1,400 people responded, largely, we believe, because the covering letter was signed by all five local GP practices. The HA, shadowy figure that it so often is, remained firmly in the background.
We held public meetings fronted by GPs and sent out assorted briefing sheets and updates to around 150 local people who said they wanted to remain involved and learn more about the NHS. We also worked with the local paper to run a series of regular, in-depth articles about general NHS issues and concerns, and arranged interviews with GPs and NHS managers working on service reviews. We looked at our various efforts to get the message across and we thought we weren't doing too badly.
At each meeting, three major problems were identified: communication, communication and communication. 'You don't use our language.' 'You don't answer our questions.' 'You don't give us information in the right way.' These same criticisms are made time and again in other surveys, in reviews and in public and internal inquiries. They were made after Hillsborough, after Dunblane, after the Piper Alpha disaster. They have been made in dozens of inquiries into shortcomings in systems, from health to education to sport. We've all read them. Some of us have written them.
So we conducted a small survey (reported in a letter to the Journal, 12 February 1998), which showed an alarming degree of misunderstanding about words and phrases we regard as our daily currency. Primary care, secondary care, triage... part of the vocabulary which trips so lightly (and so frequently) off our tongues - but which is a complete mystery to a large percentage of the public. Around a third of those who responded thought primary care meant life-saving services in the NHS, and more than half thought secondary care meant less urgent NHS services. And this in a primary care-led NHS. Remember that these were informed members of the public, to whom we had been assiduously feeding information for the past six months.
Of course, it was a small sample (part of a larger questionnaire to find out their reading, listening and viewing habits, where they wanted to get information from and what kind of information they wanted), but colleagues in other districts assure me that the results mirror their experiences.
Many respondents to this and our earlier questionnaire said they wanted access to health information by telephone - a service we already have in the Health Information Service. How long did it take us to learn that useful recall number 1471? How long would it take to imprint 0800 665544 on the nation's subconscious? So far we have conspicuously failed to get this particular message across: only 9 per cent of those responding to the large postal questionnaire knew about the Health Information Service, and only 5 per cent knew the actual number.
We also discovered from the second survey that almost all our respondents got their news, at least in part, from their local free papers (not the paid-for local papers as we had so blithely assumed) and that almost all of them read tabloid newspapers. Tabloid newspapers where, typically, a paragraph is one sentence long, and where the average sentence has 25- 30 words, the sort of words that we (in our other lives, away from work) use every day.
When writing this article, I went in search of some typical examples of written communication available to the public. Here, chosen at random, are some sentences and phrases I found within 10 minutes (from a variety of sources within and outside the NHS) available at public board meetings over the past two years:
'The concept of a functional dentition for life.'
'The variable susceptibility of people to dental disease suggests that the frequency they receive dental attention should be varied accordingly.'
'The educational level of the population (particularly of women) is a very sensitive marker for health and is only possible if basic human needs are met.'
'The development of a specific planning procedure to be instituted at the stage when a child's plan has moved to permanence, would be of assistance in clarifying procedures, rules and resources required.'
'...acknowledging that there are difficulties involving legal issues, changes in organisational cultures, logistical considerations and resource implications for information technology solutions.'
'The pattern of service development was referred to the forum, which at its meeting on 5 July 1997, established five working groups, with a remit to consider present services available in the district, for patients requiring palliative care and to consider how a collaborative, integrated and cost-effective service could be developed drawing on the strengths of the statutory, voluntary and the individual contributions being made through the forum.' (68 words!)
'The heterogeneity of primary care services...'
You get the picture? Well, if you do, I suggest you are in the minority. I am not singling out any organisation for criticism. I am trying to show how irresistible the pull of this style of writing, and indeed speaking, seems to be.
Contrast the above with the answers given by local GPs at a recent public meeting:
Question: 'Why is it so difficult to register with a doctor of your own choice?'
Answer: 'Patient demand is increasing all the time. If you can't increase the number of doctors, then you must reduce the number of patients. To practise responsibly, you can't have too many patients on your list or the quality of care is jeopardised.'
Question: 'Why are there so few home visits these days?'
Answer: 'Home visits are very time-consuming. The evidence on home visits shows that they are often not necessary or particularly effective. For every short home visit, five patients could be seen in the surgery.'
Question: 'Who should you call at night?'
Answer: 'GPs these days try to pool resources to provide an out-of-hours service. In the past 10 to 15 years, there has been an enormous upsurge in anxiety - especially parents worried about children with high temperatures. Media coverage has been unhelpful - occasional disasters are blown up out of all proportion. There are difficulties in rural areas if people can't drive but the answer is not to have GPs driving around - the answer is to enable people to get to the centre.'
Clear, concise and to the point, even when the questioner was not necessarily being given the answer they wanted and might find that answer unpalatable. No one constructed an elaborate screen of woolly words to blur and fudge what they were really saying.
We had asked a local BBC journalist to front the proceedings at this meeting. It was run like a chat show, with her interviewing GPs and managers about the service reviews they had undertaken. If she did not understand a word or phrase, she challenged them. She took the heat out of some 'single issue' members of the public by fielding their questions and rephrasing them. An expert in time keeping, she moved the debate on - but still got answers.
Even so, while praising the new format and the journalist's input, the public's feedback criticised some answers as waffle, and said that some issues were skirted around. Nothing of course that we have not heard before, but nevertheless rather disheartening. In an increasingly confrontational and suspicious culture, we seem to be handing the sceptics and cynics gift-wrapped sticks to beat us with. Why can't we say what we mean?
Somewhat disappointed, we considered the feedback on the evaluation forms and confronted the painful truths. We had based much of our approach to communication and information on assumptions and our own perceptions and prejudices. We now take out a full page every quarter in our three local free papers (whose combined readership accounts for half our population). We use it to talk about things such as out-of-hours services, antibiotics, coughs, colds and flu, as well as highlighting plans for the future and where to obtain documents and further information. We plug the Health Information Service number as the information gateway to the NHS.
A willing team of staff members - who ideally have little prior knowledge of the subject matter - take home our draft public documents for their family and friends to read, question and criticise. Sometimes, of course, we have to sacrifice textbook definitions for common understanding and our specialist colleagues do not always like this. But the comments we have received to this new approach from our intended audience have considerably strengthened our arms and our arguments.
Of course there are many other people who are working hard to get messages and information across in simple everyday language - and no doubt have been doing it successfully for far longer than we have. The Journal has reported the excellent work on patient information being carried out at South Manchester University Hospitals trust.1 And here is an extract from a recent public document produced by another trust:
'Over recent years an idea has got around that people requiring an emergency ambulance are charged a fee. We would like to make it clear this is not the case. No charge is involved.'
So in the area of patient information at least, we seem to be making significant progress, especially where patients themselves are involved and consulted in the development of materials. As the 1996 Patient Partnership: building a collaborative strategy says: 'There is some evidence that involving patients in their own care improves health outcomes and increases patient satisfaction.'
Now we face another challenge: rebuilding confidence in the NHS. The white paper emphasises the requirement to involve the public in debates and decisions about healthcare and health services.
We now all hold our board meetings in public and hope this will be one way of increasing public involvement. It means more of the information we have always accepted as being in the public domain will come under greater public scrutiny. How will it stand up to the test? How can people be involved if much of the information they need to participate fully is written in a language and presented in a style completely outside their experience?
We must question the value of the white paper and Patient Partnership aspirations if the briefing papers upon which debates are based are incomprehensible and inaccessible to all but a privileged few. The longer we hinder, rather than encourage, understanding by sheltering behind comfortable jargon and unhelpful styles of presentation, the more ammunition we hand to those who express doubts about what the public can contribute. Those who work with and consult the public know how realistic people are when given the facts clearly. They understand that the NHS is under pressure and that money is limited. It is far more common to hear people say: 'Why aren't we told this?' than 'Give us the moon'.
The solution is not to translate NHS-speak into user-friendly public documents - there isn't the time, particularly for papers for regular board meetings. The solution is to encourage a culture where we choose the right words and phrases from the beginning, where we write (and speak) the language our wider audience recognises and uses.
Let us start to tell, rather than apprise, people about the health service. Let us talk about hospital rather than secondary care most of the time (and worry about tertiary and quaternary only when there is absolutely no alternative). Let us talk of changes, not reconfigurations. As we move into the next 50 years of the NHS, let us create some shared meaning and understanding. And, please, could someone start by devising a replacement for primary care?+ 1 line