Hearing voices

Published: 25/09/2003, Volume II3, No. 5874 Page 22 23 24

'Choice is not an objective; it is a means to an end, 'says patients' czar Harry Cayton.He believes that many of the ideas embodied in the consultation which he is leading are already at work in the health service - spreading good practice is what will transform the public's experience of healthcare delivery.

But patients'groups beware - they will not get an easy ride from Mr Cayton

Harry Cayton, national director for patients and the public, is one of those who - in his own words - has taken 'the risk of working inside the system rather than standing outside moaning'.

The former chief executive of the Alzheimer's Society and director of the National Deaf Children's Society diplomatically plays down the immediate implications of the current consultation on patient choice - which even the normally cautious NHS chief executive Sir Nigel Crisp has described as 'radical' and likened to the development stages of the NHS plan (news, page 5, 7 August).

But push a little harder and it is still possible to discover a man with a profound sense of dissatisfaction over the way in which the NHS treats many patients.

Pressed on whether choice is a priority, he momentarily lets his frustration show.

'Patients' relationships with the health service are very disempowering. It is long hours of waiting, combined with minimal times for consultation. In all my interactions with the health service, I do not think anybody's ever even asked me whether I am having a nice time, ' he says.

'One of the things We are told is that It is only the articulate middle class that want choice or - even worse - It is only the middle class that is capable of exercising choice. I think that is deeply insulting. If you're a single mum on£75 a week and You have got a choice between shoes and food I think you're one of the people who really know what choice is.'

Asked if the consultation period - which ends on 11 November - is a little short, he replies: 'It doesn't seem like a short time frame if you're in a patient organisation - many of them have been thinking about this kind of thing for years.

People want to get on with it, ' he stresses, adding pointedly, 'and there are [also] political imperatives'.

But mostly Mr Cayton is keen to stress how the consultation which he is leading is not the first shot in a 'patient power' revolution.

Instead he stresses, the main thrust will be to identify best practice which can be spread and to decide on the priorities which will improve the patient experience. Neither is it a sharp turn in policy, simply a 'deepening and extension' of the NHS plan's idea of a patient-centred health service. 'Choice is not an objective, ' he says; 'it is a means to an end'.

The consultation, says Mr Cayton, will focus on two issues: what choices will make the most difference to patient experience, and what information is needed to make that choice realistic. 'The problematic implementation issues', as Mr Cayton calls them, will be left for later and for others.

'We are writing the headlines and, at the end, There is going to be a long period of working out what can be done now, what can be done next year and what takes five years, ' he explains.

The consultation has four 'streams'. Three constitute an open invitation to individual patients and patient groups to contribute ideas; a similar offer to the medical royal colleges and other professional bodies; and a regional consultation led by the strategic health authorities, which Mr Cayton hopes will 'capture the views of staff '.

The fourth stream is the most high profile and consists of eight 'expert task groups' dealing with children, elective care, emergency care, long-term conditions, maternity, mental health, older people and primary care. As well as conducting their own work, the groups will sift the ideas coming in.

'I am hoping that we will finish up with a relatively small list from each task group as to what the real priorities are, ' says Mr Cayton.

He expects the consultation to discover that there are already many examples of NHS organisations and staff operating in a way that enhances responsiveness and patient choice, although he doubts that most will have labelled it in that way. 'My perception is that vast rafts of people in the NHS are making all these changes already. If that was how it was for every patient I would be relatively happy about it - but we know it is not.'

Mr Cayton suggests that many of the task groups' recommendations will be about 'relatively small scale opportunities [for patients] to make decisions about their own healthcare and their own patient journey'.

He also stresses that many of the recommendations will not have any resource implications. First, because of the 'good sense and practicality of service users', who understand that the NHS has finite resources. And second, because improvements in patient experience can be delivered by 'changes in attitude, behaviour and culture'.

Those ideas that do have significant resource implications are likely to take time to deliver, he cautions.

Mr Cayton says the consultation will be a success if by its end it has 'produced ideas which are broadly in line with what patients and patient organisations are thinking and which are received by the service as being sensible, attractive, interesting, do-able and welcome'.

This will be a tricky balancing act - as Mr Cayton laughingly acknowledges.He adds more seriously: 'There will be some ideas that some groups in the service will find challenging and some areas where patient groups will be disappointed. Some patient groups have got well entrenched positions - and opening some of them up and testing them against the realities of the NHS may be a good thing.'

Many of the adverse reactions to the consultation's recommendations will no doubt arise from the need to consider equity of provision alongside choice.Mr Cayton says that those involved in NHS reform must have 'a real conviction that we are using health service resources equitably and that we are being equitable between health service users'.

The mantra for the consultation, says Mr Cayton, is, 'is it personal, is it fair and does it work?'

He feels that many NHS staff are 'struggling with the shift [away] from an idealistic, care-providing service - one in which the belief is that they know best and they are doing their best and in which users of the service are expected to be simply grateful'.

'There are those [in the NHS], who say, 'I know what a good healthcare system is - just leave me alone and give me the resources to deliver it. Then you wouldn't want any choices, because you'd have the perfection that I was delivering you.'Well, I am sorry, that doesn't work for me.'

The 'shift' of which Mr Cayton speaks is to 'a new kind of relationship' in which everyone is very conscious of what the health service costs - something, according to Mr Cayton, that chancellor Gordon Brown made explicit when he put up National Insurance contributions - and expect a better, more personalised service in return.

'People are aware that in a publicly funded, national health system there are choices to make.

Managers, clinicians, politicians are making these choices all the time - but they're not involving patients.This is a chance for patient voices to be involved as well.'

It is a chance that must be taken, according to Mr Cayton: 'People should see choice as a series of concentric circles radiating out from the basic choice [the NHS provides]. There are going to be trade-offs and balances, but you can't have a universally excellent healthcare system which doesn't involve choice.' l The need for information: 'Would clinicians in need of medical treatment be happy to be randomly allocated to other clinicians?'

Patients cannot make choices without information - and the on-going consultation is attempting to find what kind of knowledge is the most useful and powerful in patient hands.

Harry Cayton believes there are 'two broad areas that patients need information about when having any intervention'.The first is whether the intervention is necessary, if there are any alternatives and what the relative risks are.The second is what the variables are within that intervention - the choices within choice.For example, he points out the different types of prosthesis used in hip replacements are associated with very different outcomes.

This information should help the patient and the clinician to share the decision-making.'It would be a fairly daft patient who completely ignored the advice of their clinician. If they do not think that clinician's opinion is worth having, they should choose another one, 'he says.

He also emphases that he is not talking about forcing a clinician to act against their judgement.'This is incredibly important.You cannot require a clinician to do anything which is against their clinical judgement, and you cannot require them to misuse NHS resources, 'he says.

On the sticky subject of what information should be available to patients about individual clinicians, Mr Cayton is blunt.'Ask yourselves whether clinicians, were they to need medical treatment, would be happy to be randomly allocated to other clinicians. I think not.They know who's good, who's effective.We should know too.

'The question is whether the information which is currently available is reliable - and it is not - and that is the real problem.

This is not an argument for not having that knowledge; It is an argument for improving the information that could be made available to us.'

Mr Cayton also feels that concerns about league tables of consultants and hospitals have been exaggerated.'Patients, like parents, are not stupid.Parents know that school league tables are a very rough and ready way of judging the school.They have other ways - parents, friends who are teachers, their children's friends.

They have a lot of information about schools - and it should be the same with health decisions.

'Most of us would say: 'I just want a surgeon who's good enough', and then make a decision based on whether the hospital's convenient, what the nurses are like or even that mum's friend went there, had the same operation and had a lovely time.'

Making choice stick: culture change, targets and cash Harry Cayton favours a mixed approach to spreading best practice and culture change.'The Commission for Healthcare Audit and Inspection is putting patient experience higher up, and choice is a key element of patient experience, 'he says.'I would expect CHAI will include some concepts around choice within its audit system.'

Mr Cayton does not rule out the introduction of new targets - where relevant.For example, if a recommendation were to emerge from the consultation that all doctors' letters should be copied to patients (see box, page 23), he says, 'that would be the kind of thing you could put a target on'.

Another intriguing driver for patient choice might be the introduction of cash or direct payments.Direct payments have been very successful and popular in social care and have created some leverage for user choice, he says.

'Patients are expected to turn up when It is convenient to the NHS' Harry Cayton is not about to second-guess the results of the consultation, but he is clear about the kind of changes he would like to see.Some he characterises as 'triggers for cultural change', such as the automatic copying of clinicians' letters to patients - or, as he prefers to put it, 'clinicians should write to patients and copy their letters to other clinicians'.

More challenging is the development of a booked appointments system.'The health service too often assumes that people who use it do not work, ' says Mr Cayton.'There is no reference to our responsibilities as patients to our own employers or to our own families.We are just expected to turn up at a time that is convenient to the service.

'Despite being a very successful 24-hour operation, the NHS has one of the most old-fashioned nine-to-five interfaces with its users.There is an enormous waste of resources because people are sent appointments which they could never attend.'

On the subject of chronic disease, Mr Cayton is clear: 'Choices here will be more about self care:

people being able to do more for themselves, to manage their interventions more. If I've got high blood pressure, I would like to decide with my GP whether to take blood pressure pills or whether to manage my blood pressure through diet and exercise.'

HSJ 's series on the choice consultation and the work of the eight expert groups started on 4 September. Following mental health (11 September) and children's services (18 September), this week's subject is maternity services (page 12).