Voluntary organisations: from Cinderella to white knight?

For much of our history medical care was delivered by religious organisations or philanthropic individuals and institutions.¹ Immediately before the second world war the prestigious forerunners of Britain's present day teaching hospitals were financed by charitable contributions. The advent of the NHS displaced voluntary organisations from organised health care. Such organisations have not withered, however, but have prospered: half of the current national organisations have been started over the past 20 years.² Now, after many years in official wilderness, voluntary organisations are back on the political agenda, their potential contribution having been highlighted in recent white papers on the future of health care.³,⁴ The cynic might quibble that there is no formal strategy to increase the role of voluntary organisations and that no financial support has been earmarked to achieve this. But this does not deflect attention away from the real question: why should voluntary organisations be attracting this level of interest now?

The answer may lie in the growing pressure on NHS resources and the consequent need to find ways to augment the delivery of care without increased cost. The voluntary sector has a substantial income of £12bn ($19bn) a year,⁵ and within health care it can provide an abundance of volunteers with the time to devote to individual patients. Further, given the immense numbers of voluntary organisations, there is likely to be at least one which could provide help for every type of patient presenting to the NHS. The major disease groups such as cancer, stroke, and heart disease have their well known champions, but there are also many support organisations for patients with rarer conditions such as neuroblastoma and Behçet's and Sjøgren's syndromes.⁶

But, although use of voluntary organisations by the statutory sector may be expedient, it would not be wise to rush headlong into their incorporation into the NHS. Especially in this age of evidence based medicine, we need some reassurance that the involvement of these bodies in health care will result in the hoped for health gains. Thus the paper by Grant et al in this issue helps provide reassurance (p 419).⁷ It shows in a randomised controlled trial that referral of patients with psychosocial problems to the voluntary sector significantly improved wellbeing compared to usual management by general practitioners.⁷ Not only is this a particularly difficult group of patients to study; they also make substantial demands on healthcare resources.

However, this paper does raise the question of when we need evidence for effectiveness. Given the diversity of voluntary organisations, it would not be practical to require evidence for every one: this would effectively debar their use. Clearly for some we need no evidence: the provision of tea by the Women's Royal Voluntary Service, for example, or of drivers of minibuses for patient transport. But we do need evidence for the type of care provided in Grant et al's study. The distinction lies in whether volunteers provide care directly or whether they merely support the delivery of conventional care. The more voluntary organisations act as an alternative to the NHS, the greater the need for evidence. Grey areas will certainly emerge (such as self help groups for patients with cancer), where we may have to accept on trust that the provision of support is inherently beneficial.

A second question is whether the voluntary sector should go further than providing support services. Should voluntary organisations be involved in planning and implementing policy, acting as the champion of patients' needs? The increasing recognition of the importance of the patient's perspective suggests that this is a legitimate role. Certainly it is one that many voluntary bodies want. For example, an umbrella body of 96 national voluntary organisations was formed in 1990 to influence policy and practice because of concerns about reforms to the NHS.⁸ Thus the question is less whether than to what extent they should influence policy and planning.

Finally, there is the question of how to integrate the voluntary sector within the NHS. In the past, health professionals were reluctant to become involved with voluntary organisations⁹ and viewed them as a threat to jobs or levels of pay.¹⁰ A lack of understanding of their potential contribution may still exist: a recent survey concluded that general practitioners have “little information about voluntary organisations and what they do.”¹¹ Clearly some initiative is required beyond the rhetoric of the recent white papers. In 1988 Black indicated that the potential rewards of NHS-voluntary sector partnerships were considerable.⁹ They remain so—and largely unrealised.¹² Perhaps the role of voluntary organisations is one of the health technologies that the National Institute for Clinical Effectiveness could review.¹³ Then we might gain answers to the questions of how, and to what extent, the enormous potential of the voluntary sector could be realised.

General practice p 419