Royal Society of Medicine Forum: Inequality in maternity care. Where have we got to?

This is a report of an all-day meeting of the Forum on Maternity and the Newborn of the Royal Society of Medicine, held on Wednesday 24th April 2002. The meeting was chaired by Professor Wendy Savage and, in the second session, by Professor Vivette Glover.

This report first appeared in the RCM Midwives Journal.

Never too early. The Sure Start contribution to maternity care.
From Naomi Eisenstadt, Director of the SureStart Unit.

One third of children under 4 years of age in England live in poverty, and public sector services have been failing the poorest. This is the reason for Sure Start's existence and provides its purpose. We work by setting up programmes in areas defined as within "pram pushing distance" - sub-district areas such as two or three estates or three or four streets; these will each house about 700 under-4s. We have 500 such programmes running new services or building on existing services, and we are funded to the extent of £1.4 billion over five years. To generate such resources we have used data on the effects of poverty such as crime, teenage pregnancy, and lack of qualifications, avoiding aggravation of the stigma; in fact the numbers in such categories are small.

To what degree are we glue - linking services to make the whole greater than the sum of the parts - to what extent PolyFilla - filling the gaps in the services? We are both. The proportion depends on current provision, which varies greatly. Local parents are involved in our planning and delivery. For example, when asked parents don't say they want more midwives, but clean play space; accordingly our strategy is to make early and visible changes in the physical environment so that the people see that something is being done. Capital spend has to be undertaken with speed, with prompt refurbishment of playgrounds and drop-in centres
and so on, combining consultation with action to avoid delay.

We have defined objectives and targets. The objective of improving social and emotional development is linked to the target of reducing the numbers of registrations on child protection registers (usually 2 or 3 in 700); the health objective is linked to reducing the number of women who smoke when pregnant - very difficult, but important for both health and education outcomes. Ability to learn is linked to child language and foundation stage measures, and strengthening families and communities is linked to reducing the number of workless households. We believe that the employment programme, particularly for one-parent families and vitally associated with buildings which provide child care, is key to the ending of child poverty.

Connecting with women when pregnant makes it more likely that they will accept ongoing support in the first weeks after a birth. The approach to pre-birth disadvantage has to be made early, with diet, smoking, and postnatal depression targeted. Cultural sensitivity is vital; antenatal and postnatal services must be delivered in a way which makes people comfortable using them. Expectations differ as between mothers and fathers; the outcomes for children depend importantly on the way in which fathers are involved. Here are a number of Sure Start initiatives around pregnancy: In Corby the Edinburgh postnatal depression scale is being used; Oxford has an Asian support worker; in some rural areas (where poverty and deprivation have been increasing) antenatal screening by hand-held ultrasound equipment linked by modem and telephone line to remote specialist centres is being trialled; Sheffield Foxhill has a rapid response worker for families with early difficulties after a birth; Sunderland has a service promoting mother-baby attachment. Specialist support is being provided for the teenage pregnant, making it friendly for them and allowing them to support each other. Sure Start uses National Childbirth Trust (NCT) and Lalèche League trainers for local women, challenging these organisations to widen the social class scope of their work.

Some Primary Care Trusts (PCTs) are encouraging Sure Start to become involved in the structures they are beginning to set up, but others say "Come back in two years when we are organised" - when it is too late. It is particularly difficult to work with structures and systems which are changing, as has been the case in recent years; it is also difficult where education, health, and social services don't all work well together, which is unfortunately the rule. Health agencies in general vary a lot in their willingness to engage with Sure Start, the success of whose programmes and their outcomes for children depend on the three services working together. Positive influence on environmental health, housing, street traffic and transport carry huge weight; a professional whose attitude to non-attenders is "They can't love their child" is likely to be unaware of the causes: transport difficulties, the pram which won't go on the bus, other children. Particularly in rural areas the siting of nurseries, building the delivery of child care onto existing services, and the provision of play buses are possible and desirable future developments.

Midwives and health visitors are keen to work for Sure Start, because they can deliver services flexibly; this flexibility needs to infect mainstream services also, making the Sure Start way of working available to families everywhere. People want, need, "joined up" service, where one person can put them in touch with all the required services (something the best workers have always done, on the quiet); middle management does not at present support such flexibility. Why can't a worker actually hand out cash to enable a parent to keep an appointment? It is the sort of thing, done now, which increases the future willingness of people to listen to advice, on important matters such as behaviour and parenting.

We need to think of inequality across the life cycle. As has been said in this context: "I wanted lunch yesterday, and I want lunch today too".

Are politicians delivering?
From Sandra Gidley MP, member of the All Party Parliamentary Group on Maternity.

Ms. Gidley spoke with the experiences of a mother and qualified NCT antenatal teacher. The parliamentary group has input from numerous organisations, including the NCT, the Association for Improvement in the Maternity Services (AIMS) , the Maternity Alliance , the Royal College of Obstetricians and Gynaecologists, the Independent Midwives Association , London Health Link , the Association of Community Health Councils , and the National Society for the Prevention of Cruelty to Children. Individuals contributing have included Yvette Cooper, the minister for public health, and Baroness Cumberlege.

The maternity services are accessed by 700,000 mothers annually. Health inequalities start before birth, and the need is greatest in rural areas. The group has taken a major interest in the issues of postnatal support, caesarian section (CS) rates (the Sentinel report), and CS on demand, a regrettable trend given public prominence by the famous, such as Victoria Beckham.

Members of Parliament tend to have old fashioned attitudes, and to take little interest in health issues. The parliamentary group plans to lobby ministers on a range of issues, including midwife numbers, choice in childbirth, rising CS rates, public health problems and inequalities, social services, housing and education as well as health in general. The Department of Health needs to promote a multi-agency approach across health areas such as PCTs and local councils, devolving more resources and power to them. Midwives need to have the influence on policy making which obstetricians have always enjoyed; they are more likely than the doctors to promote normal birth (too rarely witnessed by obstetricians), and they are well qualified to undertake total care in most if not all pregnancies. A midwife could, with the mother's agreement, undertake such care, and refer for the further opinion of a GP or consultant as required.

The National Institute for Clinical Evidence (NICE) , in its guidelines, confirms that there is no evidence that electronic fetal monitoring, now often carried out on a mother's arrival in a maternity unit, is either necessary or good, and it may lead to unnecessary interventions. Aside from such guidelines, informed choice for all women is pivotal, and should be a prime motivation in the NHS framework. As a woman all I want to know is that the staff are on my side, and that expert help is available if needed.

Despite promises of increased spending on health the proportion of gross domestic product (GDP) spent by the first Labour government was less than in the Major years. How is new money to be spent? Although the number of midwives has increased, fewer work full time. Staff shortages have led to a decline in team midwifery and to the employment of more midwives in large units - inevitably resulting in increased CS rates, midwives caring for more than one woman at a time, overwork, unhappy mothers, and a loss of staff from the profession. The option for obstetricians to work shorter hours can only lead to a diminished experience (especially for trainees) of both normal and abnormal birth. And Hansard reports that the maternity services are rarely the subject of speeches in the House.

What is the solution for these problems? I believe that our group (which has no political axe to grind), with the close co-operation of the professions, must pursue these aims: women to have the birth they want in the place where they want it, and all women and children to have access to support. Health professionals and politicians need to ensure that women are central in their concerns.

Equality in maternity care.
From Dr. Jean Chapple, Consultant in public health medicine and perinatal epidemiology, Kensington, Chelsea and Westminster Health Authority.

Outcomes by inequality for mothers and babies have deteriorated since 1914. In the 1940s Titmus wrote: "Babies - beware poor parents".

Some things - age, sex, genes - cannot be changed; some things can, but less so when government is running agriculture, food production, education, the work environment, unemployment, water, sanitation, health care, and housing. Here inequality becomes more of an issue. If housing costs are not allowed for, one quarter of our children are living in poverty; this rises to one third when allowing for housing costs. What is poverty? A lack of resources for an individual or group affecting wellbeing. Such resources are not just money or material possessions, but also others: emotional and psychological support, protection for the environment, education, opportunities, shelter, housing and information. The information gap is widening. People dislike questions about money, and it can be difficult to get information about poverty of opportunity for example. In the United Kingdom there is little absolute poverty (a lack of essential resources). When comparing individuals or groups with the national norms we find relative poverty - comparing what is with what might be. Here is the potential for improvement. There is a significant difference between being poor among the poor or among the rich, which in a city like London can vary from street to street. Even the wealthy may be poor in some respects, for example in emotional and psychological support.

When we look at outcomes for mothers over the last three years there have been less than 10 maternal deaths in 100,000 maternities; this seems good, but the group labelled "unoccupied", that is not seeking paid work, are disproportionately affected. Among the ethnic groups Asians had double the rate of maternal death of white women, and this must be echoed in the morbidity figures also. In the last confidential report on maternal deaths suicide was the leading cause. Social factors have become the most prominent, above clinical care, which of course remains important. Women in the most disadvantaged groups are 20 times more likely to die than those in the highest twol social classes. 12 per cent of women indicated that they were subjected to domestic violence, but the incidence of this will be inaccurate if family members are used to to interpret for the ethnic. Travellers (gypsies) become elusive as they move on, but they have a relatively high incidence of maternal death.

Some women are reluctant to accept home visits for booking for maternity care if they are ashamed, for example in hostels for the homeless; missing antenatal care in this way increased mortality. Those with previous mental illness were worse affected, as were those with multiple pregnancies and those who conceived by IVF. Five girls aged 16 or less and 14 under 18 years died, an especially worrying feature of the report.A quarter of the deaths had booked after 20 weeks or missed four or more appointments. Poor follow-up of missed appointments, a lack of English or of adequate interpretation, and a dismissive staff attitude, especially towards travellers and poor linguists, were regarded as negative features. Drug users are liable to default in the antenatal period and midwives need to be involved in drug programmes. The integration of health and social services is very important.

The analysis of perinatal deaths is based on the total of live births by social class. Class 5, those who have no qualifications, represent only five per cent of the total 600,000 births annually. The number of registrations of birth by lone mothers has doubled in the last decade; only 14 per cent of the babies were born to women who themselves were not born in the UK, but one third of London and only five per cent of Merseyside births were to women who were not born in the UK. There has been no change in the perinatal mortality rates by social class in the past 20 years. Sole registrations have higher rates, married ones lower rates - a concern if marriage is itself becoming less frequent. The organisation Relate predicts a zero rate of marriage by 2030! Low birth weight, whether from prematurity or dysmaturity, is entirely related to social class and ethnicity.

To be equal requires control of and the ability to benefit from social services, not just material welfare. Epidemiology needs to be flexible, must not make assumptions, and must measure the success or otherwise of the endeavour to improve outcomes.

Maternity experiences of asylum seekers.
From Jenny McLeish, Researcher, The Maternity Alliance.

The core mission of the Maternity Alliance, a campaigning, research and information group, is to end inequality and to promote the well-being of pregnant women, new parents and their babies. This is a report of one year's research looking at 33 asylum seekers (those who have applied for refugee status). These women are having to wait months or years for Home Office decisions. Although the women have reached the United Kingdom and safety they have lived with uncertainty as to their futures. This was a small qualitative study based on semi-structured interviews around the United Kingdom, ranging from teenagers to the over 40s, from 19 different countries, who had been here from three weeks to two years without answers to their applications. They had variable ability to speak English. One half are here with their husbands, the other half are unaccompanied. Nine had other children, and eight had left other children behind, and this was very important to them. Some are living in absolute poverty, unable to afford enough food for themselves or their babies and were in inadequate housing. They exist in a system designed for single men, intentionally uncomfortable to deter asylum seekers. One woman said she felt she was being treated "like the air, invisible". Their special needs as asylum-seekers were largely ignored by the maternity services; one half reported experiencing indifference, rudeness or outright racism from the maternity and primary health care services.

Asylum seekers are entitled to the National Health Service in full, and this includes maternity care; they are also entitled to permanent registration with general practitioners, although this is difficult to access, chiefly because of the language issue. Prescriptions are free to them although this is not widely known among them. They are not entitled to social security benefits, or milk tokens, as would anyone on benefits. However, most were very satisfied with their antenatal care, although they would only learn of its availability by word of mouth rather than from targeted information. The only responsibility of staff in their accommodation (mostly in large hotels) was to call an ambulance, usually when they went into labour.

The care contrasted with the complete absence of care, or care of a very different kind, in their countries of origin. They were delighted with the technical aspects such as scans and monitoring, and keen to attend at whatever cost. Poor continuity resulted in their having to repeat their often painful personal histories again and again, and because of lack of interpreters antenatal classes were not available to them, causing problems especially for first time mothers in labour. One half were positive about their postnatal care in hospital, having had very low expectations. Expressions of warmth by doctors or midwives were particularly appreciated, and remembered months later. This was especially true for those who missed their mothers and the close relatives who would normally have been around them. Midwives would frequently delay their discharge from hospital, learning that they had no-one to go to for care, and would give them the close attention due to a first time mother, being aware of their lack of familiarity with the system here. The other half of the group sadly encountered neglect, disrespect, and racism from those supposed to be caring for them. This is remote from the standard of cultural sensitivity mentioned by Naomi Eisenstadt. One midwife whose hand was grasped by a woman in pain said "Don't touch me!"; another remarked "These Africans just take advantage", when an HIV positive mother with a wound infection and fever described her symptoms. The mothers, sensing hostility and fearing that the professionals would abuse their power, tried to placate them; trust was absent. None complained.

Where complications such as high blood pressure or the need for CS arose the women felt coerced into hospitalisation or surgery, particularly when they had had no antenatal preparation, or when no interpreter was at hand. Language deficiency was at times presumed by the staff even where it did not exist; one woman, a doctor with good English, reported that a midwife would communicate with her only in mime. In a similar case this assumption led to midwives speaking to each other in derogatory terms across the woman, and wrongly saying that her baby was dead. The women said "You're better off not knowing what these midwives say". Even in the postnatal ward some mothers felt alone and abandoned, although quite likely receiving a normal standard of care; they lacked the knowledge that this was so.

Most of the women were pleased with postnatal visiting by midwives and health visitors, but key health messages were often not conveyed for lack of interpreters. One mother was outraged when told that her baby's umbilical hernia would not be treated because she is black, a clear case of unresolved misunderstanding. Practical help when given, such as the provision of baby clothes, was greatly appreciated; on the other hand some professionals brought their prejudices with them or betrayed ignorance of the poor conditions in which the mothers lived.

For many having the baby was the least of their problems. If destitute, a woman can apply to the National Asylum Support Service (NASS). While an application to NASS is processed she is placed in emergency accommodation, usually a full board hotel, which is supposed to be a short term arrangement. However one of the women in this study were still in such accommodation after five months.

In the full board hotels the rooms and bathrooms are filthy; the women have to share them with many strangers, mostly men who might sexually harass them, so that they became too frightened to use the facilities for fear of disease. They would then use them during the night. The poorly prepared and unnutritious and repetitive meals disgusted them, which conflicted with their awareness of the need for good nutrition in pregnancy. All of them regularly missed meals if out for antenatal appointments or tied up in their rooms with their babies; there was no flexibility in the meal times. No formula milk was provided; one HIV positive mother had to give her baby cow's milk. No provision whatsoever was made for baby food; mothers had to mash up their own food (inevitably fish and chips); some women ran away, feeling their babies could not survive.

The next stage is dispersal, designed to move asylum seekers away from London and the South East, to relieve local authorities of the increasing expense which fell upon their budgets. By law no personal preferences can be taken into account; families are routinely split up as they are moved on with only two days' notice. On arrival they are given vouchers which can thankfully now be exchanged for cash.The guidelines for dispersal were applied inconsistently, almost at random. Women desperate to get out of emergency accommodation refused dispersal, while others were dispersed away from their friends in late pregnancy, one while actually in labour. Repeated dispersal was not unusual. The temporary accommodation now provided was often in condemned high rise council buildings in very poor condition, with severe damp and restricted space. Some women felt lost, in circumstances where they and their babies (one of whom had lost weight from eight to six kilos) failed to thrive.

The level of financial support is 70 per cent of those on income support, so women go without food and clothes for themselves and their babies. Sometimes they were left without vouchers as a result of administrative blunders; one woman told how she coped for three weeks without vouchers when five months pregnant: "I drank a lot of water, and I slept a lot". she said. The maternity grant of £300 has to be applied for from two weeks before the baby is due and up to two weeks after; many receive it late if at all, and are liable to arrive in hospital empty handed. One mother was told by midwives to go and beg when, penniless, she asked for a nappy; she did so, from other mothers in the hospital. In response to this report the Home Office now provide a pack of value £50 for mothers who have not received the grant - hardly adequate for women in absolute poverty. Crucial for all these women is the emotional trauma to which they have been subjected in their own countries, from the multiple bereavements (country, culture, family), aggravated in many cases by the harshness of their treatment here, and resulting in the present grief; all describe sitting alone, in tears. None had received support targeted at postnatal depression. Many will be here for the rest of their lives; we are failing them by giving them and their babies a bad start, when what they need and deserve is to be treated with dignity, humanity, and respect.

A 2003 parliamentary report on inequality of maternity care.

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