Waiting lists targets

Waiting lists have been a major feature of the English health care system over many years and one of the most enduring features of policy has been the attempt to improve access by reducing waiting times. The current targets are 13 weeks for first outpatient appointment and 18 weeks for first inpatient appointment, both from the time of GP referral. Waiting times have been reduced substantially since 2002 and evidence comparing England and Wales (the latter did not consistently have a target regime) suggests that targets with financial penalties attached have helped achieve reductions in waiting times (Hauck and Street, Reference Hauck and Street2007).

In terms of ‘permeability’, individuals will weigh up the ‘work’ required to access services. The long process by which patients end up on a waiting list, involving a whole series of appointments and interactions with different health professionals, may be judged as too time consuming and complex by some groups with limited resources (financial or non-financial). This is especially likely when the treatment is viewed as non-urgent. However, once on a waiting list, targets may have the potential to improve access across the board without any equity issues – citizens have already defined themselves as candidates and have navigated their way through the service to the point at which they have been defined as requiring treatment.

However, there has been a long history of research looking at the influences on the prioritization of patients on waiting lists and this relates to the way in which health professionals adjudicate between competing demands. Both surgical and administrative factors are usually cited as important influences. Reasons for treating particular patients are very varied, including provision of a good case mix for teaching junior doctors, ensuring a balanced list, and ease with which a patient can be contacted. Pell et al. (Reference Pell, Pell, Norrie, Ford and Cobbe2000) found that after adjusting for age, sex, and type of operation, socio-economically deprived people were less likely to have their operation for coronary heart disease (CHD) classified as urgent when compared with those from higher socio-economic groups. They were reported to wait on average an extra three weeks for surgery as a result of such views. Hacker and Stanistreet (2004) analysed by multivariate regression the waiting times between placement on a list and receipt of surgery in two specialties. In ophthalmology, women, those aged over 70, and those from a deprived area were found to wait significantly longer for surgery than their comparison groups. Age had the biggest effect. In orthopaedics, similar trends were noted but did not reach statistical significance. No patterns appeared in relation to ethnicity, but sample sizes were small.

However, one might argue that the overwhelming focus on waiting times as a determinant of the order of treatment for patients suggests that some of the control has now shifted away from doctors because there are considerable managerial pressures to achieve targets. There are two main implications of this shift: (a) there may still be administrative features that influence the degree to which people are seen sooner rather than later. Very mobile populations or those with no permanent address may be dropped from a list after repeated attempts to contact them have failed; and (b) the processes by which people get on to the waiting list in the first place is probably now a more important consideration. The latter is heavily influenced by the social construction of professionals' views on the suitability of people for treatment and there is a large body of literature suggesting that those from vulnerable groups, including older, socio-economically disadvantaged and people from ethnic minorities may have less good access to elective treatments than those from more advantaged groups (see, for example, Morris et al., Reference Morris, Sutton and Gravelle2005; Yong et al., Reference Yong, Milner, Payne, Lewis and Jennison2004; and summary by Dixon et al., Reference Dixon, Le Grand, Henderson, Murray and Poteliakhoff2007). Invoking the notion of ‘candidacy’ discussed earlier, access to care is negotiated between patient and professional with one important element being the way in which people are categorized by staff in terms of how interesting, serious, or deserving their problem is and how it matches their idea of how resources should be allocated and thus the entitlement of patients to care. Whilst these influences are less marked where serious and obvious health conditions exist, they are far more likely to emerge where there is an element of elective care which is the case for waiting list conditions.

Whilst professionals may state that the main influence on their referral decisions are technical and are linked to their views on how well patients will do medically if they receive the treatment, this can indirectly disadvantage some groups. Those in poorer social circumstances may experience a greater tendency to co-morbidities or ‘bad’ habits such as smoking and overeating, or lack social support networks for after-care and this may technically reduce the effectiveness of treatment. As Dixon-Woods et al. (2005) note, ‘professional perceptions of the cultural and health capital required to convert a unit of health provision into a given unit of health gain may function as barriers to health care’. Moreover, even apparently technical judgements may be socially and morally constructed and commentators have noted that one of the key determinants of a group being vulnerable is that language creates a culture giving ordinary people ‘permission’ to think the unthinkable – for example, the early days of AIDS/HIV where people were seen as ‘deserving’ to be ill and now similar language is being used about the ‘deservingness’ of asylum seekers to access services (Spanswick, Reference Spanswick, Costello and Haggart2003).

The policies to reduce waiting times have definitely worked in terms of improving overall access, but may have produced inequities in access in rather subtle and hidden ways.

Organizational re-design

In contrast to the long history of waiting times policies, attempts to improve access through the re-organization of services are relatively recent. These include NHS Walk-in centres (usually not 24 hours) where people can receive care without being registered with a General Practitioner (GP) in the area and without the need for an appointment; NHS Direct, a nurse-led 24 hour telephone advice and consultation service; and arrangements for out-of-hours primary care provision which is increasingly provided by specialist groups of GPs who contract with Primary Care Trusts (PCTs) to provide such services. The permeability of such services might, in principle, be higher than for the traditional services, where barriers relating to physical access may exist, especially out of hours when access to transport or to care for dependents may be difficult. Similarly, the relatively high non-attendance rate for appointments in the traditional sector may be a reflection of barriers experienced by groups who have chaotic lifestyles for whom forward planning is difficult and therefore providing a non-appointment service may be beneficial to such groups.

In practice, the evidence is mixed. Evaluations of the impact of NHS Direct have tended to focus on the volume and nature of enquiries and whether it has been a substitute for, or complement to, other types of care, rather than on the impact on access or equity of access. Munro et al. (Reference Munro, Nicholl, O'Cathain and Knowles2000) found no obvious impact of this service on demand for A&E services (which are ‘permeable’ services used disproportionately by disadvantaged groups), out-of-hours or ambulance services combined. However, there appeared to be an effect on halting the increase in use of GP out-of-hours services. Older people appear to be less likely to use NHS Direct than younger people (George, Reference George2002; Cooper et al., Reference Cooper, Arnold, Smith, Hollyoak, Chinemana, Baker and O'Brien2005), which may be related to the preference of older people to see their own GP (Ullah et al., Reference Ullah, Theivendra, Sood, Vasireddy and Maryon-Davis2003). An analysis of awareness of the service amongst patients arriving at A&E who had not contacted NHS Direct, suggested older patients, those from ethnic minorities, and those from less affluent postcode areas were less aware of the existence of NHS Direct, suggesting that target populations have not been reached by publicity (McInerney et al., Reference McInerney, Chillala, Read and Evans2000). A postal survey asking about use and awareness of NHS Direct found that use was significantly lower amongst poorer socio-economic groups and those with communication difficulties (hearing and language problems) (Knowles et al., Reference Knowles, Munro, O'Cathain and Nicholl2006). Studies that analyse call rates suggest that calls about adults were generally higher in more deprived areas (Burt et al., Reference Burt, Hooper and Jessopp2003; Cooper et al., Reference Cooper, Arnold, Smith, Hollyoak, Chinemana, Baker and O'Brien2005) and indicates access is being improved for people from these areas. However, this is not a uniform pattern, as calls about children appear to be lower in the most severely deprived areas (Cooper et al., Reference Cooper, Arnold, Smith, Hollyoak, Chinemana, Baker and O'Brien2005).

Out-of-hours primary care centres run by groups of GPs could in principle improve access but also often require patients to travel some distance at times when public transport is unavailable, therefore making access more difficult for those without a car, without social support (such as lone mothers), and without sufficient funds to pay for taxis (Shipman et al., Reference Shipman, Payne, Dale and Jessopp2001). A systematic review of the evidence on several types of re-organization of services to improve access supported the evidence outlined above and provided similar results for Walk-in clinics (Chapman et al., Reference Chapman, Zechel, Carter and Abbott2004). Whilst the latter are well used and produce high levels of patient satisfaction, they attract mainly white middle-class patients who are already well served by other services. They also tend to improve access for younger men who tend to seek traditional primary care services less often.

Overall, these policies seem to have improved the permeability of services only for certain groups. Those who are able to understand the range of services on offer and appreciate the contexts in which their use will be seen by health professionals as ‘appropriate’, will benefit from improved access. But perversely, the growth in organizational forms aimed at improving overall access may increase the problems some groups face in matching their perceived heath needs to the appropriate health service. The complexity of the health environment, lack of a shared vocabulary, and proliferation of terms describing the services available makes it difficult for some groups to appreciate the range of services on offer and to determine their own candidacy for each service. Once an individual presents, different professionals are involved in each service, each with their own culture and hierarchies and their own expectations of what constitutes candidacy for that particular service. Health care organizations often run on an implicit notion of an ‘ideal’ user who is able to match precisely their competencies and resources to the way in which the service is intended to be used. This may make it difficult for people in disadvantaged groups to know how to negotiate their pathway through the organizational complexity.

Targeting ‘under supply’

The government has taken several steps to increase access in areas of the country perceived as being ‘under-served’, by targeting extra resources directly at these areas in order to increase physical supply. Much attention has focused on primary care services. Historically there have been inequities in the supply of GPs across districts and a large amount of empirical research from the 1990s and early 2000s demonstrate a mismatch between the number of GPs in areas and ‘need’ (measured simply by population or in more sophisticated ways), with deprived areas being under-served and affluent areas being over-served (e.g. Benzeval and Judge, Reference Benzeval and Judge1996; Hippisley-Cox and Pringle, Reference Hippisley-Cox and Pringle2000; Gravelle and Sutton, Reference Gravelle and Sutton2001). Some studies find this to be a localized rather than a general problem, with London being the main problem area (Baker and Hann, Reference Baker and Hann2001); or suggest that evidence is not as strong once methodological issues have been accounted for (Gulliford, Reference Gulliford2002). Overall, most commentators would probably agree that there is some inequity in supply of GPs between deprived and less deprived areas.

The White Paper on primary care (Department of Health, 2006) gave a commitment to improving access to primary care services in a number of ways (e.g. longer opening hours) but the main focus was on increasing supply in deprived areas. The 30 most ‘under-doctored’ PCTs in terms of numbers of GPs per weighted population were listed and action to address the problem in the most severe cases includes a procurement exercise whereby PCTs will be required to attract in additional capacity by commissioning extra primary care services, with a focus on ‘alternative providers’, including social enterprise, the voluntary sector, and the independent sector.

However, the success of this policy depends on how and why the variations in supply influence the ability of people from vulnerable groups to register with and visit a GP. There is little evidence on this issue and the relatively high consultation rates amongst disadvantaged groups may suggest that the physical supply of GPs is not a prime issue affecting access to primary care services, at least as measured by utilization rates, and that other barriers may be more important. The experience of the ‘Sure Start’ programme in England illustrates this point very well. This was a major national initiative to enhance the health and development of children under four years and their families living in socially deprived areas by improving access to services and creating new ones, with services targeted at local needs. A comprehensive evaluation of the policy, comparing Sure Start areas with comparison areas due to receive the intervention at a later date, has been undertaken (Belsky et al., Reference Belsky, Melhuish, Barnes, Leyland and Romaniuk2006). The results suggested that for children and families generally, the policy was found to benefit the relatively less socially deprived parents (non-teenage mothers) and children, but actually had an adverse effect on the most disadvantaged children (in terms of measures of child health and development), a result also reported from similar programmes in the USA.

The authors suggest that socially deprived families with greater personal resources were better able to take advantage of the services and resources provided in the Sure Start areas, which may have left those with fewer personal resources (young mothers, lone parents) with overall less access to services than would have otherwise been the case. Also, relatively more socially deprived parents may have found the extra attention of service providers in Sure Start areas to be stressful and intrusive.

Relating this back to the sociological perspective discussed earlier, the families who failed to benefit from the extra resources targeted to them may have not have defined themselves as in need of the extra services despite the efforts of the professionals involved. Dixon-Woods et al. (Reference Dixon-Woods, Kirk, Agarwal, Annandale, Arthur and Harvey2005) also suggest that people in more deprived circumstances often view their health in terms of a series of major and minor crises rather than a process requiring maintenance and attention. Candidacy for health care is therefore likely to be judged as event-based and a specific event may be required to legitimize contact with services. The Sure Start programme was focused on ongoing support for mothers and children and preventive services, rather than on responding to illness, and this may therefore explain why the most deprived families did not respond as expected.

Expansion of choice

The expansion of patient choice has been a major plank of health reform in England (Department of Health, 2003). There are several strands to the choice policy, including: choice of provider for elective care (Department of Health, 2004, 2008); choice of type of antenatal and postnatal maternity care and choice of place of birth (Department of Health, 2007); choice in care planning and treatment regime for specialist groups or treatments (e.g. mental health, cataracts). There are also several stated aims of choice polices, for example: enhancing consumer empowerment; stimulating supply side competition, efficiency, and diversity; improving quality and responsiveness; and improving access. In this article, the focus is on the impact on access of the choice of provider and location of service for elective care. From April 2008, commissioners have been obliged to offer patients a free choice of provider at first referral, including any NHS hospital in the country and many private sector providers, although certain exemptions apply if there are clinical reasons for limiting choice. The national system of tariff payments will ensure that money is directed wherever patients go, thus, in principle, sharpening incentives for providers to be responsive.

Because the choice policy has multiple aims it has the potential to produce conflicting impacts and it may exacerbate the differential access to such services that already exists between socio-economic groups. By enhancing the ability of those who are already most able to articulate their preferences to make choices and enabling them to choose higher quality providers, those who are less able to make choices effectively may get left with poor quality services in deprived areas (Oliver and Evans, Reference Oliver and Evans2005). The counter-argument is that if all groups can make effective choices, this will pressurize providers to improve the situation for all, whilst retaining support for the NHS from the middle classes and ensuring sustainability (Dixon and Le Grand, Reference Dixon and Le Grand2006).

Which of the above scenarios is most likely to occur depends crucially on the willingness and ability of different groups to make choices and access providers in different locations. There is a wealth of empirical evidence addressing the key aspects of how people make choices, in particular the sort of information they require, and their willingness to travel to more distant providers. From the perspective of this debate, we are interested in whether there are systematic differences in these factors between groups, which might indicate that expanding choice will give some groups advantages at the expense of other groups.

In a comprehensive review of the UK and international literature on choice and equity, Fotaki et al. (2005) conclude that the evidence suggests a negative impact of choice on equity (affecting adversely those from ethnic minority groups, older, lower income and less educated), although the effect is often small. In a comprehensive review of the evidence relating to choice and the willingness to travel for treatment, Exworthy and Peckham (Reference Exworthy and Peckham2006) paint a very similar picture. Although the results vary according to the type and nature of treatment (willingness to travel being greater for urgent and specialist care), in general lower willingness to travel is expressed by those who are older, female, in lower socio-economic groups, and those in some ethnic minority groups. In reviewing the evidence relating to the use of information required to make informed choices, Fotaki et al. conclude that the existing differential use of information by more affluent consumers will lead to inequalities in access to care and will inhibit the ability of disadvantaged groups to make choices.

This paints a rather dismal picture of the potential impact of choice on equity of access, but rather unusually, a large-scale pilot study was undertaken to inform the development of choice policy in England and this is worth considering in more detail. The London Patient Choice (LPC) project first gave people on waiting lists for cataract surgery the option of earlier treatment at a different hospital and then extended this choice to patients waiting for other types of elective surgery in London. When those on a waiting list were asked – hypothetically – about their views on choice, younger, more highly educated, higher income, and employed groups were statistically significantly more likely to express willingness to choose another hospital. However, most of these differences disappeared (the exception was for employment status) when the evaluation looked at the actual choices made by those involved in the pilot scheme. So when actually offered a real choice, people who previously expressed unwillingness did in fact choose an alternative provider (Coulter et al., Reference Coulter, Le Maistre and Henderson2005).

These results are therefore often presented as evidence that choice is not taken up unequally between groups, but is attractive to all and that choice policies are therefore compatible with equity and will improve access for all. It was also the case that waiting times were reduced for all patients, not just those at the hospitals in the pilot, suggesting that equity was improved across the board (Dawson et al., Reference Dawson, Jacobs, Martin and Smith2004).

However, this is misleading because the LPC pilot scheme is not the same as the scheme which is being rolled out (Choose and Book) which requires choices to be made much earlier in the care process (at first referral to specialist out-patient clinic). Moreover, some of the key differences are those that are most likely to affect groups differentially. First, the LPC scheme involved patient care advisers to support the decision-making and explain the process, and even in these circumstances, a third of patients said they had insufficient information to make informed choices. Second, free transport to and from the hospital for patients (and carers in some hospitals) for treatment and for one follow-up appointment, was also provided and almost half opted for a taxi paid for by the hospital. The transport was one of the most popular features of the scheme. Choose and Book will not have either of these features – GPs will be responsible for assisting with the choice decision and transport arrangements are to be left for local determination. Moreover, it requires people to make choices before they know whether they require repeated series of outpatient appointments rather than a one-off surgical procedure. This is likely to make those worried about accessing distant providers more conservative in their judgements about those providers. The choice of an alternative is therefore likely to be far less attractive to people who find the information required to make choices difficult to handle, and who also lack the resources to allow them and their family to travel to more distant providers. The latter is likely to be quite significant outside London where hospitals will not be so closely located to each other. The LPC evaluation explored the reasons for decision making and found that the location of the hospital and how to get there was the prime information need cited by respondents, thus indicating the importance of practical issues. If GPs are not able to communicate the choice concept effectively or do not allow extra consultation time for the task of explaining choice, there is every possibility that the ability of patients from different groups to take in and understand the information explained to them will vary, and thus choices may not in fact be equally available to all.

It has been argued that tweaking the Choose and Book scheme into ‘supported choice’ – providing a key worker to help decision-making and also covering transport costs – would allow the choice policy to enhance equity by allowing those in disadvantaged circumstances the opportunity to make their voice heard (Dixon and Le Grand, 2006). Although this seems a reasonable suggestion, it would have to be carefully tailored and would require considerable investment of resources which begs the question of whether it is necessarily the most effective way of improving access. Moreover, it is important to bear in mind that the LPC pilot scheme involved a highly selected group of patients because only 32% of those apparently eligible for the scheme were actually offered the opportunity to participate. There were big variations in the proportion of patients names submitted to the scheme by geographical area and by waiting list (Coulter et al., Reference Coulter, Le Maistre and Henderson2005). Whilst no clear explanation for the variation emerged, it is possible that the notion of candidacy played an important role. Health professionals were responsible for deciding whether to submit patients to the scheme in the first instance and it is likely that they held a view about the characteristics of the ‘ideal’ participant. It is possible therefore that they excluded those they perceived as not being willing or able to make choices or to travel. Whilst the Choose and Book policy will require choices to be offered to all patients, GPs are very likely to allow their own definitions of candidacy to influence the degree of effort they make to help patients of different types to make these choices effectively.

Whilst the choice policy may indeed achieve many of its multiple aims, there appears to be significant potential for it to have an adverse impact on equity of access, especially in its current form.