Users and user organisations are here to stay. The health service has an opportunity and a duty to learn how to make the best use of the time of those who are willing to commit themselves to helping the health service meet the needs of those having a baby.
The health service needs to know the user organisations and build a relationship with them, actively welcoming their representatives and consulting them before major changes are planned. These bodies may have publications that will help the health service understand what users want and how they think. They may well conduct market research or other surveys, which are made available publicly, for example, the NCT Choices, Access and Better Birth Environment surveys. The latter has influenced the health building notes for maternity units (Gready et al.
1995; Singh and Newburn 2000; Newburn and Singh 2003). They run conferences and training to help the health service understand the wants and needs of users.
Increasingly, the user bodies work closely with the policy makers at the government level and with the Royal Colleges to present a single view to governments and assemblies. They are powerful and influential and those in the health service can make use of their voice to bring about change by keeping them informed of situations where the users and health service personnel want to develop the service, but policy or other constraints prevent them.
Since 1998, service users (consumers) have been involved in the NHS Health Technology Assessment (HTA) Programme. A pilot study found that consumers made unique contributions to the HTA Programme (Royle and Oliver 2004).
Consumers tended to highlight issues about patients’ views, social contexts,
information and support needs and long-term outcomes. Their involvement exposed processes that needed further thought and development.
In other health fields, there are examples of where input from service users has changed and improved research protocols. INVOLVE (formerly Consumers in NHS Research) has produced briefing notes for researchers involving the public in the NHS, public health and social care research ( www.invo.org.uk).
Conclusion
Without organisations such as the NCT, the risk is that maternity services would still be run on paternalistic lines with decisions being taken for the convenience of the service, and in response to diktats from those at a great distance from the parents-to-be, who actually use the service.
Services for those taking the magical journey into parenthood are much more likely to meet the needs of those parents now than ever before. The health service, the users and the bodies that support and strengthen them are needed as much as ever, because the pressure of commercialism and the desire for efficiency, cost reduction and order are always in danger of driving back personal, family-centred services.
The benefits of users and users groups for the health service can best be summed up by Elisabeth Manero’s talk on the community context for the development of the Edgware Birth Centre at the Modernising Maternity conference held in March 2000. Barnet MSLC’s approach to turning ‘no’ into ‘yes’ on the request for a stand-alone midwife-led unit at Edgware was to insist on evidence as the universal language of decision-making, and that women’s views on what they want from childbirth must count. Slowly but surely, national developments on childbirth were allowing women’s perspectives to infiltrate NHS policy. Locally, professional opinion eventually supported the unit. Those who have delivered there speak of a very different kind of birth experience. If the NHS asks its users what sort of service they want, the NHS is more likely to be successful in meeting user’s expectations (Manero 2000).
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