This chapter will describe user involvement within the context and provision of maternity services. This setting was similar to gynaecological oncology services in providing an opportunity to explore women’s participation in user involvement, as maternity users are exclusively female. Nevertheless, men do have a role in maternity services. Services have adopted a partnership model that seeks to include men in their role as the partners of pregnant women and as carers from within the woman’s wider family (Pope et al 2001; Royal College of Midwives 2001). However, maternity services differ from
gynaecological oncology services in that its users are not ill and being a service user has a positive outcome for most women in the form of a healthy baby. This is illustrated by the one of the leading user organisations in maternity, The National Childbirth Trust, who have argued that maternity is different from other services that are:
“…life and death, fascinating, with lots of research, cardiology, heart transplants. Maternity is different. This is all about normal people having an everyday but very special life event” (Health Select Committee, 2003)
Maternity services also differ in that there is an existing social model ethos and convention to maternity care that is less evident in the traditional medically dominated cancer services. The prevailing philosophy within maternity services is that women expect to have a
relationship with their health professionals that, unless there is a crisis, is characterised by partnership (Pope et al 2001; Royal College of Midwives 2001). As a result, the term ‘user’ rather than ‘patient’ is used to describe the receiver of services. A further difference between the settings is that maternity has a substantial history of user involvement that has led to an explicit commitment to the participation of users in the development of services.
“Public and professional consultation should be fundamental to the planning, development and provision of local maternity services” (Scottish Executive, 2001)
This chapter will explore how the history and ethos of maternity services has influenced the development of user involvement. It will begin by describing the context and provision of services before going on to describe the history of user involvement in maternity and then how this has been implemented at the three levels of individual care and treatment, examining services and strategic planning.
The Context and Provision of Maternity Services
In Scotland maternity services provide a formal programme of maternity care for women and their babies that includes antenatal (before the birth), intrapartum (during the birth) and postpartum (after the birth) care. Maternity care is a complex, multi-dimensional, dynamic process of providing safe, skilled and individualised care. It responds to the physical,
emotional and psycho-social needs of women and their families. For most women pregnancy progresses smoothly to the birth of a healthy, much welcomed baby supported by family and friends. However, for some, pregnancy may be unplanned or unwanted and complications or adverse social circumstances may occur. The birth itself may be difficult and the outcome unexpected (Public Health Agency of Canada, 2002).
The origins of maternity care, as we see it today, can be traced to the 1920s when it became increasingly accepted that the provision of antenatal care for all pregnant women would make a major contribution to improving maternal and child welfare. The
development of antenatal care also provides one of the earliest examples of women themselves lobbying for better maternity care. Following the women’s suffrage
movement’s successful campaign for the vote in 1918, the goal of antenatal care became the major issue for which women’s groups fought (Enkin & Chalmers, 1982). The
following ninety years have seen major developments in maternity services and significant change in maternal mortality, with maternal deaths now very rare. Confidential enquiries into maternal deaths were established in 1928, with reports being regularly produced for England and Wales, Northern Ireland and Scotland from 1952 onwards. However, since 1985–87 reports have covered the United Kingdom as a whole, as the small numbers of deaths meant that separate country reports were no longer feasible (MacFarlane, 2002). Changes in remit and classification mean that direct comparison of the data is not possible but in the 1920’s maternal deaths in England and Wales were put at 450 per 100,000. In comparison the most recent Confidential Enquiry into Maternal and Child Health 2000 – 2002 for the United Kingdom reported the total direct and indirect maternal deaths as 13.1 per 100,000 (Lewis & Drife, 2002).
Much of this change can be ascribed to clinical and technological advances in maternity care as well as to the development of in-patient facilities; professional clinical teams; obstetric training for general practitioners; developments in the education of midwives and the recognition of midwifery as a discipline separate from, but complementary to, nursing. The Midwives Code of Practice, defined by the United Kingdom Central Council for Nursing, Midwifery and Health Visiting in 1992 and renewed in 2004 defines the role, responsibilities and behaviours of midwives (Nursing & Midwifery Council, 2004) while obstetricians are guided by the Royal College of Obstetrics and Gynaecology (The Royal College of Obstetricians and Gynaecologists, 2006).
The United Kingdom introduced policies for maternity services reform in the early 1990s that aimed to make the planning and delivery of maternity care more responsive to
women’s own needs and wishes and to improve women’s ability to make informed choices about many aspects of their care. Three key reports, The House of Commons Report
(Winterton) (Department of Health, 1992), The Scottish Office Policy Review (Scottish Office, 1993) and the Cumberledge Report (Changing Childbirth) (Department of Health, 1993) all outlined key principles of choice, continuity and control and emphasised the need for women to be the focus of care. This led to a profound change in both the philosophy and delivery of maternity services.
The preparation of these reports included evidence gathered through representations from user organisations and user surveys. The Scottish Office Policy Review (Scottish Office, 1993), in particular, was derived from unprecedented consultation involving a series of national road shows and a study of Scottish maternity service users conducted through fifteen focus groups by Bostock. She concluded:
“Women want health professionals to acknowledge them as individuals with specific and different needs” Bostock (1993).
This consultation, and others, stated that the system of maternity care in the United Kingdom did not provide the type of care the majority of women wanted and advocated a system where the woman and her family were at the heart of maternity care (Reid, 1994). In addition to its influence on the philosophy of maternity care Changing Childbirth (Department of Health, 1993) also made a number of recommendations that anticipated the growing movement for user involvement (Lincoln, 2004). These included giving women the right to choose where they would like their baby to be born; every practical effort made to achieve the outcome the woman believes to be best for her baby and herself; to have every reasonable effort made to accommodate the wishes of women and their partners and the opportunity to be fully involved in their care (Department of Health, 1993).
The current vision and philosophy for maternity services in Scotland was set out in ‘A Framework for Maternity Services in Scotland’ (Scottish Executive Health Department, 2001). As with earlier policy documents it was seen as important that the framework was informed by women's perspective on maternity care. Research using focus groups and one-to-one interviews was conducted to ascertain the views of service users across Scotland. Although the women represented in the study reflected a wide range of
backgrounds, experiences and needs, a clear and consistent picture of what women wanted from maternity services emerged from the study. These findings were in keeping with other consumer studies (Scottish Executive Health Department, 2001). In the policy a model of care was described by mothers and health professionals that would provide a family centred, locally accessible, essentially midwife managed, comprehensive and clinically effective model of safe care before, during and after childbirth. This reflected a multi-disciplinary integrated approach to care. It stated that pregnancy and childbirth were a normal physiological process; that women should be involved and consulted in decision-
making; that care should be safe and evidence based; that risks should be discussed and agreed by all and that care should be provided within the community setting when appropriate. The attainment of a safe outcome for mother and baby was paramount. This model illustrates the debate that is central to user involvement in maternity services. Services have had to ensure that a safe service was paramount, but this has had to sit alongside the strongly held view that women should have the right to choose less technical levels of care with fewer clinical interventions. This debate has often been polarised as health professionals and user organisations hold opposing views on the safe level of
technological intervention in maternity care. At one end of the spectrum of views are those professionals who argue that confinement anywhere other than in a fully staffed obstetric unit carries unnecessary risks (Scottish Office, 1993). At the other end are women, user organisations and some doctors and midwives who have come to believe that a high proportion of women can be delivered in other, more homely and more convenient settings with no increased risk to either mother or child (Kitzinger 1984; Flint 1986; Tew 1990; Scottish Office 1993). In this well-rehearsed debate the arguments in favour of highly specialised obstetric provision were primarily about safety. The arguments against have largely stemmed from research, much of this completed in the 1970s and 1980s and often involving women researchers who were also users. These studies showed that women prioritised less specialised care in local hospitals, which have surroundings familiar to them and are convenient for their family and friends. As with earlier policy documents the Framework for Maternity Services in Scotland attempted to balance these competing arguments by proposing that any such local provision must include rapid access to
specialist medical cover when emergencies arise (Scottish Office 1993; Scottish Executive Health Department 2001).
There are a number of other Scottish policy statements on maternity services. The Deputy Minister for Health led an Expert Group on Acute Maternity Services (EGAMS), which reported in 2003 (Scottish Executive, 2003). In addition, the regular UK wide confidential enquiries into maternal deaths and recent English Department of Health work on a
National Service Framework for Children and Young People (Department of Health, 2004) have provided further policy direction. There is also a range of guidance available from professional organisations, including the Royal College of Obstetricians and
Gynaecologists (RCOG, 2006), the British Association of Paediatric Surgeons (2006) and the British Association of Perinatal Medicine (2006). Each of these acknowledges and promotes user involvement in the planning and delivery of maternity services.
Maternity services have had a longer history of user involvement than the other two settings in this study and, as a result, user movements have a substantial presence within
the field. Thus, before describing the opportunities for women to influence their maternity care it will be useful to describe the history of user involvement in maternity services and identify how this has helped to shape the structures and processes currently in place.
The Development of User Involvement in Maternity Services
Women had held considerable power to determine labour and delivery events as long as childbirth remained at home. Until the 1920s and 1930s birthing women surrounded themselves with a network of supportive women who they knew and trusted. Thus, women, in strength, negotiated with the various experts they invited in to help determine what would be done to their bodies. However, when childbirth moved to the hospital in the twentieth century, the medical profession became dominant (Leavitt, 1986) and as the levels of technological intervention, organisation and pattern of care became more complex and fragmented, so did disputes over who should manage childbirth and where (Currell 1990; House of Commons Health Committee 1992).
While the history of campaigning on issues such as antenatal care date back to the 1920’s, the roots of most maternity user organisations can be traced to the late 1960s and early 1970s when users spoke out against the trend towards inducements of convenience, the medicalisation of services and concerns about professional accountability (Stacey, 1988). Interestingly, two of the most prominent maternity user organisations have roots that predate the more recent debates. The National Childbirth Trust (NCT), originally the Natural Childbirth Association, dates back to the 1950s, while the Association for the Improvement of the Maternity Services (AIMS) was set up in 1960. Many more user organisations were set up in the 1970s including TAMBA (Twins and Multiple Births Association), established in 1977, the Maternity Alliance in 1980 while SATFA (Support around Termination for Abnormality) was set up in 1988 (Reid, 1997).
User organisations in maternity cover a wide spectrum of function and ethos. While some deal with specific conditions or problems, three of the most prominent are generic, tackling a wide range of issues. Easily the largest, the NCT is primarily concerned with education for parenthood. It has its own structure of antenatal classes and has played a major role in providing training and support to user representatives on one particular health planning group, the Maternity Service Liaison Committee. Another, AIMS, describes itself as a ‘campaigning pressure group’. It maintains a high profile within maternity services with local branches that spearhead local and national campaigns. AIMS focuses upon concerns over technology, the rights of mothers, and the availability of choice for women at all stages of pregnancy. The Maternity Alliance takes a wider remit, tackling issues such as maternity legislation, benefits and rights.
Other user organisations deal with problems, although the nature and type of the cause may vary. Many are concerned with difficult emotional and distressing situations, which Robinson and Henry (1977) proposed have been either poorly managed by the NHS or ignored. These would include the problems that arise around a termination for foetal abnormality (SATFA) or a stillbirth or infant death (SANDS - The Stillbirth and Neonatal Death Society). Some organisations deal with problems during pregnancy, others are concerned with circumstances that arise after childbirth such as postnatal depression (MAMA) or for those with twins or multiple births (TAMBA). The Health Select Committee - Second Maternity Services Inquiry (2003) recognised the value of such organisations when it identified the lack of specialised expertise of many health
professionals in providing maternity services for those from disadvantaged groups, those from different cultures or women with disabilities. They proposed that health
professionals, such as GPs, could not be expected to provide immediate advice in all cases but pointed to user organisations as valuable sources of the information required by prospective and new parents (Health Select Committee, 2003).
Typically, such organisations have a wide range of mutual-aid groups at local level, which serve two functions. First, they bring women together for information, education and support, and second they provide an extended local base for national organisations such as the NCT or AIMS. These rely heavily on their membership to raise with them the
important issues to be tackled. Frequent contact with an extended network of members is an important way of ascertaining the issues and concerns of the membership (Reid, 1997). The period from the early 1970s to the late 1980s stand out as the era of the user movement in maternity care. By 1980 the professionals providing maternity care had had to
assimilate a sustained attack on their expertise. Beginning as a protest against high induction rates, this had quickly generalised itself to become a complaint about the dominance of the medical model of childbirth, in which pregnancy required care by high- technology means (Oakley, 1993). This culminated in the 1990s, when user groups played a key part in securing major changes to the way maternity care was delivered in the UK (Garcia et al, 1998).
As discussed earlier, the 1990s saw the introduction of policies for maternity services reform that aimed to make the planning and delivery of maternity care more responsive to women’s own needs and wishes and to improve women’s ability to make informed choices about many aspects of their care. Three key policy reports mentioned earlier, The House of Commons Report (Winterton) (Department of Health, 1992), the Cumberledge Report (Changing Childbirth) (Department of Health, 1993) and the Scottish Office Policy Review (Scottish Office, 1993) all emphasised the need for women to be the focus of care leading
to a profound development in both the philosophy and delivery of maternity services. This contrasted sharply with earlier policy documents such as the Peel Report, Domiciliary, Midwifery and Maternity Bed Needs: Report of the Sub-committee (DHSS, 1970) and the Short Report, Second Report from the Social Services Committee Session 1979-80,
Perinatal and Neonatal Mortality, (Department of Health, 1980) that had promulgated the dominance of the medical model of childbirth with the Peel Report, in particular,
recommending the transfer of all births from home to hospital. However, the later reports not only represented a significant change in the underpinning philosophy of maternity services but also in the thinking on whose evaluations and expertise should be considered in their deliberations. In the earlier reports the evidence collected by the committees was, without exception, from representatives of Royal Colleges, professional associations, universities, the NHS and the civil service. The composition of both the Peel and Short committees reflected the reliance upon the expert, he or she being defined as pre-eminently the obstetrician (Stacey, 1988). However, by the 1990s maternity policy was being shaped by women’s evaluations and experiences of maternity care. The nature of women’s participation included representation drawn from user organisations and wide-ranging surveys of women who were or had been users of maternity services. These established the principle that the views of users were of importance to service providers.
Several social movements had converged to bring about this change in the status of user views and experiences. It was characteristic of the feminist movement of the late 1960s and early 1970s that some women began for the first time to criticise the way in which they were treated by the medical profession. Among the social developments responsible for the challenge to the hegemony of professionals were more education, greater familiarity in the mass media with social issues and the products of scientific and technological expertise (Oakley, 1984). The reactions of many women, not themselves feminists, to the
increasingly passive and subordinate role which the new obstetrics put upon, them fuelled these arguments. Unrest among women was expressed through existing user groups such as AIMS and the NCT (Stacey, 1988). There was also a large fund of social scientific research carried out by individuals such as Shelia Kitzinger and Jean Robinson, then Chair of the Patients Association, which was available for care providers anxious to understand the attitudes of mothers towards the maternity services (Oakley, 1984). The Peel and Short reports may also have contributed to women’s organisation. By barely acknowledging user groups and demoting women to the periphery of services they may have provided an impetus for women's groups to come together and lobby more effectively.
Users’ desire to control their experience of pregnancy and childbirth had long been expressed through research studies, where the issues of choice, better communication and
improved continuity of care had been recurrent themes (Reid, 1994) but the evidence gathering strategies of the Winterton Report (Department of Health, 1992), Changing Childbirth (Department of Health, 1993) and the Scottish Office Policy Review (Scottish Office, 1993) provided the opportunity for such issues to find influence within the policy- making arena rather than simply giving voice to women’s concerns. Thus, by the late