Theme 1: Construction of the problem of access to health care by children

developments and interventions to improve access for people of minority ethnicity

Section 5 Childhood and acess to health care

5.2 Lines-of-Argument synthesis

5.2.1 Theme 1: Construction of the problem of access to health care by children

In the groups we have looked at so far in this review – people who are socio-economically disadvantaged and people of minority ethnicity – the ‘problem’ of access has been assessed primarily by examining the extent to which utilisation of services compares with apparently privileged ‘standard’ reference groups, such as middle-class white people. For children, there is no obvious standard comparison group.

The problem of access by children has been largely rendered through a focus on supply, and particularly a supply of services that are especially designed for children. The issues of ‘need’ are therefore much more prominent in this literature.

‘Need’ has often focused on the need for separate, specialised

provision of services for children, and, more recently, for adolescents.

We analysed papers that addressed issues of availability, sometimes in terms of closely related issues such as flexibility in the way services are offered and the appropriateness of particular forms of care. Our synthesis is organised around the following themes generated by our analysis of the evidence:

• Primary Care.

• Specialist Care.

• Use of A&E, out-of-hours services and emergency admissions.

• Preventive services.

• Young people.

Primary Care

The evidence on the availability of GPs has been summarised earlier in this report. A recent theme in the discussion of primary care services has been the re-emergence of an argument in favour of specialist GP paediatricians, but this has yet to achieve widespread uptake (Peile, 2004). While generally registration of children with a GP is very high, some groups, such as refugees and asylum seekers, may have more difficulties. A study by Anderson et al. (1997) reported that over half of the travellers studied did not have a GP they could name and many were registered with GPs significant distances from where they were currently living. Similarly, Feder et al. (1993) found that only 17 per cent (four out of 24) of traveller gypsy children could name their GP compared to 90 per cent (35 out of 39) among a group of control children.

Studies have consistently found high rates of GP consultation among younger children. Rogers et al. (1999b) report that the highest consultation rates are found among children aged up to four years (and among people aged over 75 years). Saxena et al. (2002) found that the proportion of children and young adults aged up to 20 years consulting their General Practitioner in the preceding fortnight was 8.7 per cent (equivalent to 2.3 consultations per person, per year). After adjusting for age, social class, and chronic health status, Indian and Pakistani children were more likely to have seen their general practitioner in the preceding fortnight (though less likely to have attended outpatient departments in the preceding three months). Self-reported health status, rather than socio-economic status or ethnicity, was the best predictor of use of primary and secondary care services:

children who had long standing illnesses were more likely to have seen their general practitioner, and more than twice as likely to have

attended hospital as an outpatient or inpatient in the preceding year.

Goddard and Smith’s (1998) review noted that most studies have found that children living with single mothers are more likely to consult GPs, though one study (Carr-Hill et al, 1986) reported having asole parent was found to be significant for girls only, thedirection being towards less frequent attendance at the surgery.

Specialist Care

The debate in specialist care has, in the last 20 years, focused on the need for a distinct paediatric service, including children within adult

sufficient capacity in specialised services to match children and young people’s ‘needs’, and whether they are appropriately configured, particularly geographically, is not easy to determine, in part because of the methodological and theoretical issues discussed in the preceding sections. Variations in the availability of specialist care for children are frequently asserted in policy documents and statements by child health organisations. Most of the evidence centres on a small selection of clinical specialities, much of it from a series of reports during the 1990s by the, now disbanded, Clinical Standards Advisory Group (CSAG). The reports from the CSAG did point to substantial variations in the availability and quality of specialist care for children in the selection of conditions on which they conducted reviews, though it is difficult to assess the currency of the data, and difficult to interpret the extent to which findings in these specific areas can be generalised to other areas of child health. For example, a 1994 CSAG report on provision of services for cleft lip and palate identified serious problems of fragmented services with low volume operators, but was followed by the drawing up of national guidelines and co-ordinated

improvements in services (Williams et al., 1995).

For epilepsy, the CSAG (1999b) reported that there were too few neurological staff to meet the demand on hospital services. Most children were seen in general paediatric clinics, but most of these lacked staff with specialist interests and qualifications in epilepsy, and there was general agreement that clinics specialising in epilepsy could provide better care. Access to and facilities for children in paediatric clinics were considered to be better than adult neurology clinics. This report also identified the limitations of a ‘hub and spoke’ model of neurology services, arguing that the centripetal momentum inhibits the development of local services that are more geographically accessible.

A report on cystic fibrosis revisiting the early 1990s CSAG

investigation (www.cfstudy.com/sara/csag2.pdf) identified continuing regional variations in access to specialist clinics [CSAG investigation (www.cfstudy.com/ sara/csag2.pdf)]. Access for children remained good in three areas, and improved in three other areas, but in the South Western region it was poor and had shown no improvement.

Access to specialist care remained lower for adults than for children, and was very low in some regions. Most cystic fibrosis units had

experienced increases in staffing, but this was insufficient to cope with increasing workload, resulting in a real deterioration in staffing levels.

The Clinical Standards Advisory Group on Outpatients (1999a) reported a steady increase over time in the number of hospital consultants in paediatrics, from 630 in 1987 to 1,190 in 1997. This represented an average annual change in the number of consultants of over eight per cent: higher than for any of the adult specialities. Over the period 1992 - 97, there was an average annual increase in

232,000 to 355,000 new attendances and from 941,000 to 1,030,000 subsequent attendances during the period 1992 - 98. Referral rates were reported to be higher to surgical specialities than to paediatric medicine (86.5 per 1000 versus 61.3 per 1,000). However, concern has persistently been expressed about long waiting times for some paediatric appointments. Stern and Brown (1994) reported under-capacity and lengthy waiting lists for a child and family clinic . More recently, Jefferson et al. (2003) reported that no national register of children with diabetes existed and there was no list of paediatricians with special responsibility for children with diabetes. The findings of their survey were focused on aspects of provision, including quality of provision. They found improvement in a number of aspects of paediatric diabetes care: fewer consultants look after an

appropriately small number of children, and substantially more run designated diabetes clinics. The provision of paediatric diabetes specialist nurses and paediatric dieticians had increased since the previous survey. However, 26 per cent of consultants had clinic populations of fewer than 40 children, and where there was not a paediatrician with a specialist interest in diabetes, 26 per cent did not measure glycosolated haemoglobin (the only evidence-based

measurement related to long term microvascular complications).

Routine annual complication screening has also not been universally adopted. Many of the diabetes nurses had to cover other

sub-specialties, or were part of adult diabetes services, and almost half had not been trained as children’s nurses. Finally, 35 per cent of clinics did not have a paediatric dietician and 78 per cent did not have access to psychological counselling services.

The availability of specialists was identified as important by parents in many of the studies that we analysed. Gibb et al., (1997) in their study of the role of family clinics in the provision of care to children infected with HIV, found that the acceptability of the service for parents was couched in terms of the availability of paediatric nurses, paediatricians specialising in infectious diseases, and so on. Similarly, Haylock et aI. (1993), in their study of community care for children with motor disabilities, found that parents would have liked more access to physiotherapy, speech therapy and occupational therapy services. The importance of access to specialists is also acknowledged by health professionals themselves; Bryce and Gordon (2000)

surveyed GPs in Scotland and found that although 57.5 per cent of GPs said that they felt that child and adolescent mental health service (CAMHS) were in accessible locations (referring to geography), only 31.3 per cent of GPs felt that they were actually easy to access because of other problems. 81.8 per cent said that waiting times influenced their decision- making. The importance of this combination of the availability of specialists in an accessible location was also reported by Robinshaw and Evans (2001), who found that parents felt

children improved when professionals from different disciplines and agencies worked from the same location. This may be particularly important for children and young people with complex and chronic conditions, where effective management depends on the involvement of a number of specialists.

The special issues in providing services for rare or complex conditions in childhood raise the familiar tensions between centralisation / quality of services and local accessibility (Arul and Spicer, 1998). The benefits of centralisation include concentration of expertise, more appropriate consultant on-call commitment, development of support services, and junior doctor training. The disadvantages include children and their families having to travel long distances for care, and loss of expertise at local level.

Whatever the shortcomings in capacity in various areas, there appears to be little doubt that children are heavy users of hospitals for

paediatric and surgical inpatient care, with up to half of infants aged under 12 months and one quarter of older children attending an A&E department in any given year, one in 11 children referred to hospital outpatients clinic, and one in ten to 15 admitted to hospital

(Department of Health, 2003). However, the inclusion of healthy new-borns staying in hospital after birth distorts the official figures to some extent, and there are variations between health authorities (MacFaul and Wernecke, 2001). More than twice as many children are now admitted to hospital compared with 30 years ago, but they stay one quarter as long as they used to (Royal College of Paediatrics and Child Health, 2002). MacFaul and Wernecke (2001) report that the majority (85 per cent) of admissions to hospital involve an average length of stay of 2.6 days, equating to about four to five per cent of children age 0 - 14 years being admitted for care by a paediatrician in any given year. The majority of children stay only one night in hospital (Department of Health, 2003). MacFaul and Wernecke (2001) report that over half of all admissions for children are for surgery and, of these, half are emergencies. There is some evidence of social class effects: MacFaul and Wernecke (2001) and Hull et al. (2000)

summarise evidence suggesting that 7.2 per cent of the most deprived children were admitted to hospital each year compared with 5.5 per cent of the most advantaged, and admission rates for children aged up to four years ranged from 33.4 per 1000 for the most affluent to 67 per 1000 for the most deprived, with similar patterns affecting

respiratory admissions. Other factors influencing hospital utilisation by children include proximity to hospital, degree of urbanisation, and different clinical practices resulting in different pathways to hospital.

Saxena et al. (2002), however, found that associations between social class and use of health services were non-significant and also found that girls were less likely to have attended outpatient clinics than boys (odds ration 0.78; CI 0.66 to 0.93).

NCCSDO © 2005 177 Use of A&E, out-of-hours services and emergency admissions There is good evidence that paediatric attendances at A&E, and paediatric emergency admissions to hospital, are rising (Armon et al., 2001; MacFaul and Wernecke, 2001; Stewart et al., 1998). Stewart et al. (1998) conducted a questionnaire-based study of 887 consecutive emergency general paediatric admissions to five Yorkshire hospitals during two separate three week periods in summer and winter. Most children admitted to hospital during the study were very young; most were less than two years of age. Over half (53 per cent) were

admitted in the evening and at night, and most (61 per cent) stayed one night or less. Most had minor illness, but serious illness was found in 13 per cent and could not be predicted from the presenting

problem. Self-referral to A&E departments was common, and resulted in admission in one third of cases. These admissions were more often seen in children over 12 months of age for illnesses of short duration and for fits. Stewart et al. (1998) suggest that one possible

explanation for the rise in emergency paediatric admissions is the gradual change in the function of hospitals from places solely of diagnosis and treatment to places where observation and monitoring may be provided. In their study, young children made up half the admissions and were often admitted for observation only. Stewart et al. (1998) also note that the spectrum of illness, age distribution, and the time of presentation were similar in children with different

deprivation scores, but children with a high deprivation score were more likely to use A&E departments as a source of health care. As we suggested in our analysis of the effects of disadvantage on access to health care, this may reflect a tendency to manage health as a series of crises and to default to the most porous service among more socio-economically deprived people.

Three studies in our sample appear to provide further evidence for this effect for children (Shipman et al., 1997; Bowling et al., 1987; Hull et al., 2000). Shipman et al. (1997) studied the relationship between the use of out-of hours GP services and accident and emergency services and found that people using the latter had tried to access GP services, but had found them either unavailable or inappropriate in some way (such as the unavailability of diagnostic equipment and the delay involved). Similarly, Bowling and colleagues (1987) listed a number of reasons cited for using A&E services, including the GP surgery being closed and the appointment system in primary care involving

unacceptable delay. Conversely, Hull and colleagues (2000), in their study of the impact of practice-based preventive child health services on hospital use, found inverse associations between the amount of health visiting support available to practices, and patterns of emergency admissions and outpatients referrals.

Peile (2004) suggests that there are significantly higher consultation rates in children from socially disadvantaged families for minor to serious illnesses, but these families also have lower rates of child health and preventive consultations (Saxena et al., 2002). Preventive services for children include immunisation and screening programmes.

Goddard and Smith (1998) summarised evidence suggesting lower rates of immunisation in areas of high levels of socio-economic deprivation. Children living with a lone parent were less likely to be vaccinated; high mobility, and families of larger size were also associated with non-uptake of immunisation. Reading et al. (1993) found that the percentage of children not screened at six weeks was significantly higher among the most deprived decile (6.8 per cent) compared with the most affluent (five per cent) and at 18 months, 21 per cent of the most deprived had not been screened compared with 13.6 per cent of the most affluent (Reading et al., 1993). Research from the early 1990s seemed to suggest lower uptake of immunisation among more deprived groups (Reading et al., 1993), but some have speculated that the MMR vaccine may have depressed middle class uptake of immunisation. Nonetheless, Middleton and Baker (2003) found that mean coverage levels were two percentage points higher in the affluent areas compared with the deprived areas.

As we mentioned in previous sections, there is some evidence that uptake of preventive services for children varies by ethnicity and deprivation. Streetly et al. (1994) found that coverage of the neonatal (Guthrie) screening programme was incomplete in children of African ethnic groups. These infants were more than twice as likely as the African Caribbean infants not to have a result.

Young people

Young people (broadly defined as those aged 12-18) form a distinctive group in terms of health service use. Patterns of use of GP services appear to change over the course of childhood and adolescence, and to differ between sexes. Over half of young people attend GPs on their own by the age of 15, and this appears to coincide with a drop in use of services. Sweeting’s (1995) analysis suggests that the average number of consultations per person per year falls from seven in the up to four years age group to three per year in the five - 15 age group.

The ratio of male to female GP consultation was somewhat greater for males in the up to four years age group, but this was reversed in the five - 15 age group. Among 16-44 year olds, the proportion of females consulting their GPs was double that of males. Some evidence points to poorer health-maintaining behaviours among young people, signalled by lower levels of attendance at review appointments for long-term illnesses. McCarlie et al. (2002), using data from a diabetes register, identify young people as a group at high risk of missing fundoscopy and glycosolated haemoglobin measurements. Stephen et

NCCSDO © 2005 179 al. (2003) similarly show that adolescents with epilepsy are at risk of non-attendance at specialist clinics and non-adherence with treatment regimens, leading to poorer clinical outcomes.

Sweeting (1995) proposes that one explanation of the apparently lower use of health care by male adolescents lies in the onset of

‘independent’ use of services. She suggests that the male excess in medical consultations in early childhood may be a reflection of bias – parents may be more likely to take male children to see the doctor, though we did not find any direct evidence of this, and it may well be the case that males have an excess of injuries that would explain their higher attendance.

Much of the evidence about young people and access to health care has focused on access to reproductive health services, where there is a large literature, much of it summarised by Jolley (2001), and Walker and Townsend (1999). This points to inadequacies in contraceptive and sexually transmitted infections services for young people. More generally, as Walker and Townsend (1999) summarise, there has been a tendency in the literature to pathologise aspects of adolescent

behaviour, including smoking, diet, sexual behaviour, and exercise, and to see health services as having a correctional role. This may account for findings of much higher levels of dissatisfaction with primary care services among young people (Jacobson et al., 1998).

For young people diagnosed with serious illness there has been persistent concern about the quality and suitability of hospital

services, which tend to be oriented around the needs either of adults

In document Vulnerable groups and access to health care: a critical interpretive review (Page 172-180)