Patient's tsar says 'encourage us to be radical'

Patients' tsar Harry Cayton tells Lynn Eaton that men's views are now on the agenda. He says government and NHS need to be 'encouraged to be doing more — and to be more radical'.

'Trust me, I'm a patient' was Harry Cayton's motto when he joined the Department of Health as patient tsar in 2003. His job is all about listening to patients — what they want, what they need and what they expect — and trying to persuade ministers to respond to their needs.

But what is the department doing to get to one of its hardest-to-reach patient groups: men?

He gives a wry smile. 'One of the challenges for the NHS is to know more about its users. It isn't very good at thinking about whether people have different needs from its services, although it has taken on some issues around culture, ethnicity and language — and around women.'

Harry Cayton is hardly the typical male patient. As former chief executive of the Alzheimer's Society (his father had the disease), he is more tuned into health needs than most. Some years ago, aged 40, and when well-woman clinics were being set up, he asked his doctor whether there was also a well-man's clinic and whether he too should be having a check up.

'My GP was very disparaging about this,' he recalls. 'I was clearly not unwell, and there was very little they could find out, she said.'

In fact Harry has since turned out to have high blood pressure and high cholesterol levels. 'It did interest me then that there didn't seem to be anything that encouraged men to think about their health. I think those things could have been picked up sooner.'

He is keen to hold up the gay men's health movement as an example of a group that helped develop a user-led, consumer-focused service, and which might help inform future consumer-led models.

'With HIV/AIDS, you had a group of men who were reasonably well educated, quite assertive, youngish and who got into a dialogue [with clinicians] when the NHS was inventing a new form of clinical practice. They didn't have the history of an existing pattern of service provision to deal with.

'It is probably true that, through organisations like the Terrence Higgins Trust, you've got quite a lot of gay people working in the field. You've got people who understand the issues.'

And maternity services are another example of clinical care that has been driven by consumer demand: 'What works in both of those is having a clinical side that genuinely understands the service user's perspective, has service users who are fairly assertive and has organised patient organisations, as patients can't work alone.

'The department is finally taking steps to listen to what patients — including men — want,' he says. 'We are trying to be more customer focussed. That requires us to not make assumptions about any of our service users. It's about talking to people, finding what their requirements are.'

But before you can give men choice — the current government's buzz word — they need good information, he argues.

It's something the NHS has not done well in the past. 'Traditionally, we would perceive there was a gap in your knowledge and we would fill it with a leaflet, which we did very little to make sure ever got into your hands,' he quips.

He's been responsible for the launch of two magazines aimed at the 40-plus patient — one for men, one for women, and both called Prime. The department also launched Your Health, a magazine aimed at young women, earlier in the year. Could this at last be a sign of the department moving towards gender-specific health messages?

'I think it is quite a shift for any government body to start using language like: "we are segmenting our audience." But that is what we are beginning to do, to ask questions about who is the audience, how do we communicate with them, what do they need.'

But why, if the department wants to reach men, has it gone for a print magazine which is distributed in a place they rarely visit: their doctor's surgery?

'Fair enough.' Harry smiles, hands held up at the criticism. 'But you have to start somewhere. This magazine is just one way,' he states, explaining that web-based services, such as NHS Direct, are being further developed which may be more appealing to men.

'Many men who have access to the internet do feel very much more comfortable about finding out information in the very private, very self-managed way that the internet allows.'

Prime may be a step in the right direction, but how are men to make informed choices about treatment options if they don't even visit their GP soon enough at the onset of any worrying symptoms? Delaying diagnosis can, with many conditions, restrict treatment options.

Harry pauses and points out gently: 'I think it's worth remembering that black people are sicker and more in need before they go to the doctor too. These things are not just about gender.'

Nonetheless, he argues some of the NHS's current initiatives, like having a walk-in centre at Waterloo station, or being able to get more advice over the counter from a pharmacist, will help make it easier for men to get treatment.

'We know men are not as readily forthcoming, they quite like anonymity and they probably don't want the community to be too aware of their health. They are not going to sit in the waiting room and chat in the way women might. One of the benefits of the walk-in centres is that you can see a doctor who doesn't know you and doesn't know about your private circumstances.'

With the white paper on public health imminent, Harry is keen that its messages should reach a wide range of communities and see people as individuals. But does he think men are more resistant than women to the concept of a nanny state telling them how much to smoke or drink a night?

'I was very struck by how many articles there have been about the white paper by male journalists saying: "I ought to be allowed to eat what I like, drink what I like, smoke what I like. I pay my taxes and the NHS can fix me later."

'I think we men in particular are prone to see our bodies in a rather mechanistic way. We think of them as engines or machines or whatever, and we think that bits break and we think you can get them fixed.

'Women think about their bodies differently. I hate this generalisation and don't want to get too much into a gender thing, but they maybe have a more holistic view. Women are more conscious of the cycles in their own well-being, whereas with men, every day it's the same, you just wake up and wonder if you have a hangover.'

He's hoping to encourage men and women to have a more active voice in the NHS through patient forums. But he also positively encourages groups like the Men's Health Forum to have more of a voice at national level too.

'There is an increasing openness about how we need to communicate with people and what we can learn from people outside the department.

'For us, these are quite radical starts, but we need to be encouraged to be doing more — and to be more radical.'

• This article first appeared in MHF  magazine.