Patients'views are now supposed to be central to the NHS.So why have they had no input into the health service's new guide? Claire Laurent reports

Why so coy? Without any fanfare or publicity, the long-awaited Yo u r Guide to the NHS became available late on a Friday afternoon at the end of January, posted on the Department of Health website.

The low-key approach was quite a contrast with the often-heard mantra that patients should be at the centre of the NHS.

Chief executive of the King's Fund Julia Neuberger can't understand why the guide was 'snuck out'.

'There is a massive role for communicating Your Guide so that people do not pick it up when things are half way through going badly wrong.'

Rabbi Neuberger is also concerned that patients were not involved in the production of the guide. 'This document does not involve them and It is not serious about drawing them into the publication of it.We do need patients' views to be central in the NHS.'

The guide is a straightforward account of what to do when you are ill. It opens with 10 core principles underpinning the service's commitment to the public, including the statement, 'The NHS will respect the confidentiality of individual patients and provide open access to information about services, treatment and performance.'

This is followed by the public's responsibilities to the NHS, including, 'Listen carefully to advice on your treatment and medication. Tell the doctor about any treatments you are taking.'

Suggestions that patients should give blood, carry an organ donor card and return hospital equipment are all echoes from the Patient's Charter.

The guide advises patients to follow 10 simple steps to stay healthy, such as, 'If you drink alcohol, do not drink too much' and, 'Be safe on the roads and follow the Highway Code'.

It explains the different routes into the health service that patients can take and sets out what they can expect. Unlike the charter it does not talk about patients' rights.

Dr Shirley McIver, senior fellow at Birmingham University's health services management centre, welcomes this move. 'One of the big problems with the charter was that it tried to do two things: it tried to be an information document for patients about what standards they could expect and it tried to be a monitoring document for the NHS Executive on standards and performance.

'Another problem was the relationship between information for patients and their rights and responsibilities. There was a lot of confusion between rights and expectations, and when they were talking about rights, were they underpinned by law? Many of them were not.'

Dr McIver says the guide was more focused than the charter and 'going in the right direction', but needed to 'go further'.

A DoH spokesperson said the guide would be subject to evaluation and that changes would be made 'to reflect the changes in the health service and what people can expect'.

Both Rabbi Neuberger and Dr McIver think that a guide might be better developed at local level, with trusts involving patients and staff to produce a guide both could sign up to. 'You have to match patients expectations with staff ability and inclination to provide, ' says Dr McIver.

Targets already outlined in the NHS plan, often set for several years hence, are detailed in the guide. For example, by 2004 patients will be able to see a primary care professional within 24 hours and a GP within 48 hours; by the end of 2005 the longest time you will have to wait for inpatient treatment will be six months.

Angeline Burke, policy officer at the Association of Community Health Councils for England and Wales, says: 'I want to know what I am going to get now and not a wish-list for a few years' time.'

She says: 'It is a good guide to the NHS, but I think we would have expected a clear statement on patients' rights and an enforcement or improvement on the standards they had in the old one.

It doesn't talk about rights at all.

'My initial reaction was that It is an advert for NHS Direct and in fact there is a big advert for NHS Direct at the back.' NHS Direct is mentioned or its logo flagged on virtually every page of the guide, yet it is only being sent to NHS practices and trusts.

'All this self-help stuff is meant to be before you get to your GP, ' says Ms Burke. 'The guide needs to be in lots of public places or you are going to end up reading it in your GP surgery or A&E - which is what they're trying to avoid.'

But Ms Burke welcomes the move for copies of letters between doctors to be sent to the patient, unless the patient has asked not to receive these.

Director of the College of Health Marianne Rigge is concerned about the loss of the patient's right to ask for a second opinion with someone acceptable to them.

'There is a clear duty on doctors that if patients want a second opinion they should have one. People do not want to be referred to a colleague of the first consultant.'

For those with unusual conditions, the loss of the right to be referred to someone acceptable was potentially serious because treatment was only available at a few places and 'not necessarily at the hospital nearest to their home'. Ms Rigge queries whether the paternalism of medicine was being replaced by managerial paternalism.

There is little in the guide to advise patients on how to get more information about the service. Patients are simply told what will happen, with only the blunt instrument of the NHS complaints procedure as a means of redress, outlined at the end. And the tangle over the abolition of CHCs and the introduction of patient advocacy and liaison services is all there in black and white, making a revision of the guide a necessity within a year.

Charter versus Guide: an example of different approaches to patients' rights The Patient's Charter 'You can expect to be given a written explanation of the hospital's patient food, nutrition and health policy and the catering services and standards you can expect during your stay.

The standards will mean:

you have a choice of dishes, including meals suitable for all dietary needs;

you have to order no more than your next two meals in advance;

you have a choice of the size of portion you want;

you are given the name of the catering manager;

you have help, if you need it, to use the catering services - for example, menus printed in other languages and large print.This help should be readily available.'

Your Guide to the NHS 'Your nutritional needs and dietary requirements will be assessed (for medical, religious or cultural reasons).You will be provided with a variety of good food, and given any help that you need to eat or order your meals.

From 2001, there will be a 24-hour NHS catering service with a new NHS menu operating in all NHS hospitals.'