Peter Lapsley: ACHCEW – bless you!

Peter LapsleyNo doubt, countless pressure groups will be beavering away, bending the new government’ s ear, each with its own agenda and promoting its own interests. Few will take account of the “bigger picture” or consider whether their aspirations have widespread support. Where healthcare is concerned, however, there is one issue which cries out for resolution, which would benefit patients and the wider community enormously, and the cost of which should be low – even negligible. It is the matter of patient involvement in the NHS.

It has long been a government mantra that the NHS should be “patient-led,” “patient-driven,” “patient-centred,” or whatever. Those are buzz-words which have never been properly defined and which have led, over the past ten years, to the utterly disgraceful destruction of a system which, while not flawless, was generally working quite well.

Established by an Act of Parliament in 1974, Community Health Councils (CHCs) were local health watchdogs. They were independent and used public involvement, regular visits and individual complaints in their scrutiny and monitoring of NHS Trusts. They had statutory rights and their recommendations for improvements were generally heeded. They also supported and helped patients with their local health services. The Association of Community Health Councils for England & Wales (the sneeze-like ACHCEW) helped ensure quality and consistency across the national network of CHCs, providing them with a forum, assisting them in the performance of their functions and represented the interests of the public in the NHS nationally.

Although they had no specific remit for primary care, CHCs worked closely with GP practices and other community professionals to improve services

The key to the CHCs’ effectiveness was their independence. They were universally seen as organisations that could be trusted to speak and act solely in patients’ interests. They also provided a discreet channel of communications for NHS staff, enabling them to express concerns about failings in the service without fear of victimisation.

They were immensely cost-effective, too. With very limited resources they dealt with over 30,000 complaints a year and played key roles in exposing many of the scandals that afflicted the health service in the late 1990s and early 2000s. It was estimated that their volunteers donated £7.9 million of free labour to the NHS annually.

For 30 years, ACHCEW and the CHCs evolved and developed, delivering ever better services. Then, bizarrely, in December 2003, with neither consultation nor explanation, the government abolished ACHCEW and the English CHCs. (The CHCs continued in Wales, and Scotland and Northern Ireland already had separate organisations.)

Earlier that year, the government had created the Commission for Patient and Public Involvement in Health (CPPIH) to set up and support Patients’ Forums and local Patient Advice and Liaison Services (PALS). Don’ t worry if you cannot remember anything about ‘CPPIH’ or ‘Patient Forums’ ; both were abolished in 2008, being replaced with Local Involvement Networks – LINks.

PALS flounders on to this day. Anything but independent, it is clearly in the pockets of the hospitals in which it operates, and although notionally it has a range of functions, from ‘providing confidential advice and support to patients, families and their carers’ to ‘providing an early warning system for NHS Trusts… by monitoring trends and gaps in services’ , it is in truth no more than an NHS-run mechanism for handling complaints.

Although they were established two years ago, I would be astonished if one in a thousand members of the public could say how Local Involvement Networks (LINks) are constituted, what they do or how people can become involved with them. That is scarcely surprising.

When the LINks network was being created, the Department of Health asked the NHS Centre for Involvement (NCI), based at Warwick University, to be the lead organisation for supplying advice and guidance about it. If you Google “the NHS Centre for Involvement” today, you are met with a notice saying that, “the NHS Centre for Involvement (NCI) closed on 31 August 2009 at the completion of its contract with the Department of Health.” – i.e. its funding was withdrawn a year after the establishment of LINks. Visitors to the site are directed to “The Links Exchange,” a Department of Health and NHS-run website for which one has to register to gain access, providing a considerable amount of personal information in the process. So much for independence and transparency.

I hesitate to suggest yet another change to a system so battered by change in recent years, but if the government really does want patients and the public to be involved in health service policy and practice, it is clear that things must change. Why not base a new system on the tried and tested model of ACHCEW and the CHCs, with the independence, authority and effectiveness they deployed so effectively?

Competing interests:

Peter Lapsley is patient editor of the BMJ.