Briefing

All you need to know about…

patient participation

What’s it all about?

Doctors have traditionally relegated patients to a passive role in healthcare decisions. And many patients have preferred it that way – too ill to decide, or sure that ‘doctor knows best’. But this is increasingly out of tune with the zeitgeist, as people’s access to information grows in line with their demand to be consulted, and appetite for compensation when things go wrong.

What is the government doing?

In July 2000, the NHS Plan acknowledged the need for ‘a health service designed around the patient’ and signalled new system of patient and public involvement to replace community health councils (CHCs) in England. Among the new measures to empower patients: letters about their care to be copied to the patient; patient advocates and advisers in every hospital; surveys and forums to help services become more patient-centred.

Then in July 2001 the government published the public inquiry into the failures of heart surgeons at the Bristol Royal Infirmary between 1984 and 1995. The most urgent of its 198 recommendations were for more patient participation, involvement in decision making and communication.

The NHS’s new duty to involve and consult the public under section 11 of the Health and Social Care Act 2001 came into effect on 1 January. So, too, did councils’ power to scrutinise local health issues and services, under the same act.

‘Partnership’ has become the new avowed aim, where doctor and patient take decisions together, in a grown-up relationship based on mutual respect.

What will the new arrangements look like?

There will be a patient advice and liaison service (PALS) in every NHS trust and PCT to offer on-the-spot help and steer patients towards the independent complaints advocacy support (ICAS), currently being piloted and due to come into existence nationally on 1 September.

Each English primary care and NHS trust will have a patient and public involvement forum (PPIF) drawn from local people, with a wide range of responsibilities, including monitoring PALS and service gaps.

The PPIF’s role will be wider than that of PALS, and encompass all issues affecting health outcomes, including council services, transport and environment. Consultation to establish draft regulations for PPIFs started on 21 May and ends on 16 July.

Finally, the Commission for Patient and Public Involvement in Health (CPPIH), established on 1 January, will oversee the new system.

So what’s the problem?

The new arrangements have proved controversial. Much of the criticism comes from supporters of CHCs – established in 1974 as a national network of independent watchdogs within the NHS, and due to be abolished from 1 December 2003.

Malcolm Alexander, director of the Association of CHCs for England and Wales, believes that the new system will be seriously under-funded and is concerned that patients will be left without representation in the gap between the CHCs’ abolition and the arrival of the fully operational patient forums in April 2004.

And he argues that advocates based in trusts will not be seen as independent: ‘It would be disastrous to create a situation in which if you have a problem with your local health service the people who you have to see in the first instance are employed by the same trust you may be making a complaint against.’

Any other concerns?

The new system is too fragmented across different bodies and lacks the capacity for national overview, say critics. Broader trends or even individual cases of clinical incompetence will fall through the gaps created by separating scrutiny from complaints, they fear. Some say the new emphasis will shift the blame for doctors’ mistakes on to the patient.

And there is considerable concern about the DoH’s recent announcement that foundation trusts need not have PPI forums but will be able ‘to determine the best mechanism for meeting their responsibility to involve users and carers’.

So what’s the verdict?

The DoH – unsurprisingly – is enthusiastic about the changes. The about-to-disappear CHCs are – also unsurprisingly – less so. The government, in a bid to avoid accusations that the usual vocal suspects will run the show, commissioned independent researchers to solicit the views of socially excluded groups. People such as young runaways, those with mental health problems, disabilities, learning disabilities, travellers and refugees were questioned and the results published in October 2001.

The researchers found (not unexpectedly) that the groups knew little about the current complaints system and were worried about being seen as troublemakers or being refused treatment as a result of complaining.

They were similarly sceptical about public forums. One female with hearing difficulties said: “In my experience the patients’ forum would not work, the people up the ladder would end up running it.”

Their willingness to become involved themselves, however, varied. Those with visual, hearing or mobility impairments were keen, so long as provisions were made for their disabilities. Homeless and drug users said they would like to participate, but felt they would not be wanted.

And one with a mental health problem said: “I wouldn’t be talking to you today if I wasn’t going to get £25.”