Published: 12/08/2004, Volume II4, No. 5918 Page 12 13

Despite much talk of patient empowerment, around half of inpatients say they feel left out of decisions on their care. In the last of our series on the four public service agreement areas, Colleen Shannon looks at 'improving the patient experience' and how much is really being done to bring it about

Since the launch of the NHS plan in 2000, the government has been talking about a patient-centred health service, which effectively has two strands.

These are putting the patient at the heart of the decision-making process, and giving the generic 'patient' the opportunity to comment on, and shape, services, via patient and public involvement.

Since the NHS plan's inception, a revamp of the system for patient representation has seen the acrimonious dissolution of community health councils and, more recently, a decision to scrap the Commission for Patient and Public Involvement in Health just five months into its life, under the review of arm's-length bodies.

So perhaps it is not surprising that there is little sense of empowerment among patients themselves. Only 9 per cent of adult inpatients in the Healthcare Commission's national patient survey published last week said they had been offered a choice of hospital. This figure leaves a long distance to travel between now and 2008, when patients with planned hospital care will have the right to choose any healthcare provider for their treatment, with a couple of caveats.

The commission's survey also shows that, despite the fact that over 90 per cent of patients rated their care as good, very good or excellent, they are still feeling shut out of other healthcare decisions.

Just 52 per cent of adult inpatients, and only 49 per cent of mental health service users, felt they had been sufficiently involved in decisions about their treatment.

As a result of the findings, the commission has identified patient information and involvement as a key area for improvement across the NHS over the next year.

The inclusion of improvement to the 'patient and user experience' within public service agreement targets, which underpin the health and social care standards for 200508 published last month, has been welcomed at many levels in the NHS for giving patient power some real teeth at last.

'We did quite well for older people with the new set of PSA targets, ' says national director for older people's services Professor Ian Philp. 'It will increase the range of options that older people will have when they need longterm care.'

Somerset Coast primary care trust's professional executive committee chair Dr Donal Hynes, a pioneer in developing choice at the point of referral, also welcomes the targets. 'Services will be developed in response to the population's needs and choices, and that is extremely helpful. We will be commissioning at the patient's request, and that is no bad thing.'

And staff on the ground agree.

'It is very positive to see that patient and public involvement has been written into the targets, ' says West Norfolk PCT public involvement manager Trish Turner. 'Although we already work very hard to involve the public, and it is included in most national service frameworks, this gives it more credence when I need to look for funding, or convince staff that it is a priority.'

However, many campaigners and observers remain sceptical that the patient's individual and collective voice will be genuinely listened to, not least because CPPIH was axed last month.

CPPIH provides central support and advice for local patient forums, which monitor PCTs and acute trusts and provide a public voice in strategic planning.

CPPIH was officially founded in February, and plans to replace its functions have yet to be announced.

The King's Fund has attacked the decision, with chief executive Niall Dickson saying that 'abolishing [CPPIH] leaves the whole question of patient and public involvement in health in further disarray. The current range of piecemeal policies does not add up. They are bewildering to those who work in the NHS and a complete mystery to the public'.

The Consumers' Association is also displeased by plans to do away with the CPPIH. 'For real choice for the individual we must have a framework where patient views are fully integrated in the planning and direction of the service, ' says the association's principal policy adviser Frances Blunden. 'The choices available to the individual at the level of the hospital and GP are determined by those higher-level choices.'

Despite the controversy and the problems at the top, some localities have been quietly getting on with the job and are already well on their way towards the PSA's slightly vague demand to 'ensure that individuals are fully involved in decisions about their healthcare, including choice of provider'.

A number of patient choice programmes around the country have produced a choice of secondary care for patients after six months of waiting, and a handful of schemes are piloting choice at the point of referral, which will have to be in place by the end of next year.

Dr Hynes' PCT in Somerset already allows patients to decide where they want to be seen when a specialist opinion is needed.

During a consultation, the GP can access a list of local centres along with real-time waiting figures on a desktop computer. This information can be shared with the patient, to help them make a choice. Patient requests are coordinated through a centralised referral management centre.

But the PCT wants to take choice further and this work has already started in orthopaedics. Patients are assessed at an interface clinic, which is community-based and has full access to diagnostic services. Once the diagnosis is made, the patient can join an operating list. Patients will soon be able to choose an independent treatment centre as well.

'Eventually if you walk into the GP surgery needing a referral, you will able be to walk out of the surgery with one, 'Dr Hynes predicts.

'When you go to outpatients, if you need an operation you will walk out of the clinic with a date for it.'

Consulting with patients and the public can have a dramatic impact on the way that services are shaped, says Ms Turner at West Norfolk PCT.

For the past four or five years the PCT, which is a mental health service provider, has been working closely with adult service users and as a result 'the service has changed completely, ' says Ms Turner. People opted for more support in the home and less reliance on inpatient care, as well as a single named contact. Also, there is now a freephone number that every service user can call during a crisis.

Gauging the success of single projects such as this is straightforward, Ms Turner says. But as public involvement becomes embedded in the local NHS - for example through representation on committees - it can become more difficult to quantify the results, or to tease out the public representative's contribution to a policy decision.

One of the great unknowns is the likely impact of a rapidly diversifying healthcare economy.

What will happen when a 'plurality of providers' in the shape of foundation trusts, and the voluntary and private sectors, are added to the mix?

'The rise in consumerism has dominated this government's thinking in healthcare, ' says King's Fund visiting fellow Richard Lewis, who is studying patient involvement in foundation trusts.

'They have spent a lot of time developing consumer rights for patients, and see people exercising those consumer rights as a very direct way of influencing the workings of the NHS.'

'The tension that sits a little uneasily is this shift towards a mixed economy with independent providers, ' says Mr Lewis.

'What happens to patients who are treated by the private sector?

[The sector doesn't] have stakeholder engagement and It is not bound by the rules, so as private provision grows in the NHS there may be a gulf between those parts that have patient participation and those that do not.'

Home truths: keeping older people out of hospital

The public service agreement also includes targets to improve the experience of older patients, including increasing the proportion of older people being supported to live in their own homes by 1 per cent during 2007 and 2008.

Quality of life and well-being are improved when older people have a positive choice about their care setting, says national director for older people's services Professor Ian Philp.

This is the rationale behind the patient experience targets for older people, he says.

At Sunderland primary care trust, an awardwinning intermediate care scheme is providing an around-the-clock rapid response service to help keep older people out of hospital.Patients are treated in their own homes whenever possible and there is also an intermediate care facility.

Between October 2003 and July 2004,842 patients over the age of 65 were referred to the rapid response team.Early discharge was achieved for 270 patients and 256 hospital admissions were saved.