House of Commons - Health

Select Committee on Health Eighth Report

3. What are the barriers to access for disadvantaged women and their babies?

47. The latest Census found that the minority ethnic population of the United Kingdom in 2001 was 4.6 million (7.9% of the total population). Access to and use of public services by this group is an increasingly important consideration for service providers and policy makers. The Department identified access to maternity services as a particular problem for minority ethnic groups, given the CEMD findings that women from minority ethnic communities were more likely than white women to contact maternity services late in pregnancy, and to miss routine antenatal appointments.[41]

48. In 1994 the Commission for Racial Equality (CRE) launched the Race Relations Code of Practice in Maternity Services which explained how the Race Relations Act 1976 applied to maternity services, offered guidance on how to eliminate racial discrimination from the provision of services, and provided examples of good practice.

49. The evidence we have heard suggests that guidance and training for midwifery staff can vary a great deal between, and even within, maternity care teams. Diane Jones told us that staff took part in a "trustwide diversity programme" but that there was no special training for the maternity care team, and that "policing who has attended and who has not and has it made any difference to the way they practise is very difficult to evaluate."[42]

50. The RCOG argued that the underlying problems in relation to access to maternity care for ethnic minority groups were lack of understanding of cultural differences and barriers to communication.[43] The RCM identified the following factors as obstacles to progress:

institutionalised racism
a reluctance on the part of young women from ethnic minority groups to become midwives [partly owing to the poor experiences of older midwives from minority ethnic communities]
complacency in areas with small ethnic minority populations
a general reluctance to address the sensitive issue of race.[44]

51. Awareness of, and sensitivity to, cultural differences, are key elements in the provision of appropriate maternity care for women from minority ethnic communities. There may be fundamental differences between the kind of maternity care or birth a woman could expect to have according to the traditions of her community, and that which she is likely to have in this country.

52. Diane Jones from Newham Healthcare NHS Trust told us that women from some minority ethnic communities were unaware of the fact that a home birth would be attended by a midwife, who would then record that the birth had taken place. This, Ms Jones explained, could seem "very alien". In some cases, even when explanations were attempted, the process was seen as:

an authority coming in wanting to take the baby away … it was misconstrued as something terrible that we wanted to do which pushed them further away from us.[45]

53. This kind of gap in understanding and communication between some minority ethnic groups and the maternity services, which creates anxiety and fear, is likely to have a profoundly detrimental effect on women's experiences of pregnancy, labour and of the postnatal period. All of our witnesses called for stronger lines of communication between disadvantaged women and the maternity services to be established. Two proposed strategies for enhancing these lines of communication were: to recruit women from ethnic minority communities into the maternity services; and to ensure that women from ethnic minority communities who used the maternity services were properly consulted.

54. However, our witnesses told us of difficulties in recruiting women from minority ethnic communities into the maternity services. Maggie Elliot, Head of Midwifery and General Manager at Queen Charlotte's and Chelsea Hospital, described this difficulty in terms of increasing minority ethnic representation in all aspects of maternity services:

We have a high Somali population and from that group of women it is hard even to get representation on things like the Maternity Services Liaison Committees, let alone to encourage those women to go and do midwifery training.[46]

55. The Royal College of Midwives (RCM) noted the finding of a survey, carried out in 1998 by Maternity Alliance and the CRE, that a quarter of maternity units had no formal channels for consultation with minority ethnic groups.[47]

56. We recommend that the Government investigate the RCM's concerns relating to the recruitment of midwives from minority ethnic communities. Action to promote the recruitment of midwives from ethnic minority communities could include the identification of 'champions' from minority ethnic communities which may help to inspire some younger people from these communities to pursue careers in maternity services.

Refugees and asylum seekers

57. In 2002 there were 85,865 applications for asylum in the UK and by March 2003, 92,685 asylum seekers were receiving assistance from the National Asylum Support Service. In the first quarter of 2003, the main countries of origin for those seeking asylum were Iraq, Somalia, Zimbabwe and Afghanistan.[48] Asylum seekers constitute a diverse group and patterns of migration shift frequently.

58. In its evidence on access to maternity services for refugees and asylum seekers, the Department stated that anyone with an outstanding application for asylum in the UK was entitled to full use of the NHS, including maternity services, without charge. However, the Department also acknowledged that "pregnant asylum applicants may be in a particularly vulnerable condition." Several of the reasons given by the Department for this vulnerability also represent factors which prevent asylum seekers from making contact with maternity services: their future in the UK will not be certain, they are unlikely to have family or friends around them for support, and they may not be able to speak English.[49]

59. As My Diep, a Community Health Worker from Women's Health and Family Services explained, women who are recently arrived "have very little knowledge about the health services in this country compared to … their own country."[50] She also pointed to cultural and religious differences which had to be taken into account.

60. Research undertaken by the Maternity Alliance identified some of the particular problems encountered by asylum seekers in gaining access to, and in making full use of, maternity services. A great many of the women surveyed by the Maternity Alliance had not been given any information about the kinds of services and support available to them. While most women who did gain access to maternity care were satisfied with their antenatal care, and while half told the Maternity Alliance that their experiences in hospital were positive, half of the women surveyed were subject to "indifference, rudeness and racism." Owing to their circumstances, these women "felt powerless to challenge hostile attitudes and fearful of the consequences if they attempted to do so."[51]

61. We were concerned in particular for those asylum seekers whose future in the UK is uncertain, and who are detained pending decisions on their applications. In a written answer to a parliamentary question, the Minister of State for Citizenship, Immigration and Community Cohesion outlined the Government's policy on detention of pregnant women seeking asylum:

Pregnant women are not normally considered suitable for detention under the Immigration Acts unless there is a clear prospect of early removal from the UK and medical advice suggests no question of confinement prior to this. In addition, women in the early stages of pregnancy may be detained briefly at Oakington Reception Centre as part of the fast track asylum process. Statistics for the number of pregnant women detained under the Immigration Act powers are not available.[52]

62. However, we have heard evidence that some asylum seekers have been unable to gain access to maternity care as a direct result of detention. The Maternity Alliance told us of interviews conducted with four women who were detained while pregnant or with a young baby. The Maternity Alliance concluded from these interviews that the health care centres within detention centres did not provide care to meet the needs or wishes of pregnant women. Where hospital care was needed, detention centres were responsible for escorting women to appointments but the Maternity Alliance identified one instance where a detention centre did not provide this service. Movement between detention centres disrupted women's care, and in one case a detention centre did not forward blood test results to a pregnant woman who had been released.[53] Jenny McLeish from Maternity Alliance told us that although midwives visited detention centres, they did so without interpreters, and that detention centres did not provide interpreting services.[54]

63. Dispersal of asylum seekers constitutes another barrier to access to care. Jenny McLeish told us that dispersal could happen at very short notice, interrupting maternity care:

the agency responsible for dispersal will not give details to external agencies such as the health services of where people are going. So, it is very much down to the individual to try and contact the health service, if they can speak the right language, to tell them that this is happening and for notes to be passed on.[55]

64. Pregnant asylum seekers are at a particular disadvantage when seeking access to maternity services if those services are not aware of their needs, or even aware that asylum seekers have been dispersed to the area. Health professionals who see pregnant asylum seekers for the first time at very short notice and who are not equipped with adequate information or resources, can themselves find the experience upsetting and frustrating. Jo Garcia from the NPEU told us:

In relation to asylum seekers if there is a sudden change in the need in a town, in some cases, the maternity services will pick it up very fast … and will be prepared … in other cases, the midwife may find herself face-to-face with someone without the warning and knowledge.[56]

65. Any support system for asylum seekers should provide specifically for the needs of pregnant asylum seekers, new mothers and their babies. We recommend that the Government take steps to ensure that pregnant women and new mothers should not be detained for any prolonged period, and that accommodation centres should provide a gateway to maternity services for pregnant asylum seekers.

66. Better communication between maternity and child health services and accommodation providers during dispersal is needed to ensure that members of maternity care teams are forewarned of the arrival of asylum seekers who will need their services and that their test results and notes are forwarded.

67. In considering asylum seekers for dispersal special attention should be paid to the support needs of pregnant women and new mothers since separating them from any support network at this time could be especially detrimental to families.

Those who do not speak English as their first language

68. People who do not speak English as their first language need advocacy and interpreting services to help them to understand what services are available to them, and to help them to participate in decisions about their care. We noted a broad agreement amongst contributors to our inquiry that interpreting services should be provided by specialist staff. Informal interpreters, such as the woman's partner, relatives or friends, or bilingual but untrained NHS staff may not be able to interpret what a woman wants to say or describe to a midwife or obstetrician (and vice versa) and a woman cannot maintain a confidential relationship with her carers under these circumstances. Both of these factors may prevent women from gaining access to the maternity care that they need.

69. However, we heard that lack of resources often limited the interpreting services available to pregnant women and that hospitals kept in-house lists of bilingual staff, or asked women's relatives or friends to interpret as a substitute for professional services. Drawing on the results of the Maternity Alliance/CRE survey which found that over one fifth of maternity units provided information only in English, and that two out of every five units relied on friends and family to interpret (even when consent for a medical procedure was required), the RCM told us that in relation to facilitating access to services for those who do not speak English, "these challenges are not being met by maternity services as currently configured."[57]

70. The Maternity Alliance reported that there was no recognised pay structure for interpreting work within the health service, nor was there any national organisation to represent and co-ordinate the activities of language support service providers. Language support services were often funded on a short-term basis, through schemes to support ethnic minority groups.

71. Language Line Limited is a private sector interpretation service used by public sector organisations such as NHS Direct, the UK Immigration Service, and the National Asylum Support Service, and by various NHS trusts and PCTs across the country. In its written submission to our inquiry, Language Line emphasised the role of professional interpretation services in improving access to maternity services, and in the provision of appropriate care. Language Line told us that language services could be used alongside advocacy services, with "an impartial, vetted interpreter" who would guarantee confidentiality and accuracy. Language Line also told us that it accumulated a body of knowledge about the cultural attitudes of different communities in relation to health services, and that language service providers could "prove invaluable in conveying to ethnic minority customers concepts which do not necessarily exist in their cultures, for example, national health numbers or the NHS itself."[58]

72. Throughout our inquiry, we heard evidence of problems with using Language Line as a means of communicating with pregnant women who did not speak English. In some instances, staff members were discouraged from using the service on the grounds of cost.[59] Language Line itself noted inconsistency in use of language services and stated that it was:

essential that all frontline staff who come into contact with health service users should be educated about when it is appropriate to utilise language services and how to maximise the benefits to both the recipient and provider of the service.[60]

73. Jenny McLeish from Maternity Alliance told us that maternity care supported by "Language Line with a man [at the end of a telephone line] in Australia" could be "quite an appalling prospect for some women" and that in some cases women chose their own partners to act as interpreters.[61] City University argued that telephone translation was inappropriate in acute situations.[62]

74. Although services for pregnant women and mothers who do not speak English as their first language can be inconsistent and inadequate, we heard that most maternity units were "reasonably good at getting some kind of communication going in the hospital and at antenatal clinics." Hospitals in some areas drew up lists of bilingual or multilingual staff who might be called upon to help women when specialist services were not available. However, Jenny McLeish told us that "in the community there is very rarely access to interpreting services so, when the midwives go for their postnatal visits, they are left with sign language and trying to write things down."[63] Where advocacy and interpreting services are available in the community, it may be the case that a woman will lose access to them, and to the benefits of continuity of care, if she goes into a maternity unit. For example, the advocates from Women's Health and Family Services in East London work exclusively in primary care and cannot follow women into hospital.

75. Lesley Spires, from Queen Charlotte's and Chelsea Hospital, confirmed that maternity care provided in the community involved using family members as interpreters. She said that the caseload approach to maternity care, where a midwife would get to know women and families in their own homes and ascertain "the relationship between the family members and the dynamics within the family", helped to ensure that this did not compromise a woman's ability to make herself understood or to ask questions.[64]

76. Pregnant women and mothers who do not speak English as their first language are rarely represented on Maternity Services Liaison Committees or on policy making bodies inside the maternity services, and so as the Maternity Alliance told us, "linguistic minority communities still face difficulties in raising these issues and in lobbying for resources."[65] We examine the issues of how representative MSLCs are below at Chapter Four.

77. Given the high incidence of domestic violence in pregnancy, relying on relatives to interpret for women can be extremely dangerous. All maternity services should ensure that the use of relatives as interpreters does not deny women the opportunity that maternity care provides to report domestic violence or to discuss other concerns such as mental health.[66]

78. Interpreting and advocacy services are a vital component of appropriate maternity care for women who do not speak English as their first language. However, we are concerned that local service planners do not recognise this in their budgets, and in particular that there is so little provision for need in the community and out-of-hours in hospital-based units. We recommend that local maternity services take steps to ensure the development of on-site out-of-hours interpreting and advocacy services and that better use is made of telephone interpreting services. We further recommend that staff running antenatal classes and undertaking postnatal visits should have access to advocacy and interpreting services.

79. Ideally, interpreting services should be provided, in the community and in the hospital, by specialist interpreters and advocates, rather than by family members, friends, or by other staff. However, we endorse the attempts made by maternity care staff to find interpreters when specialist services are not available. Bilingual and multilingual staff working in PCTs and acute trusts should have the opportunity to develop their interpreting skills. We recommend that the Department commission work to develop appropriate training courses and qualifications in interpreting for non-specialist staff.

Those who live in poverty, and those who are homeless

80. Women living in poverty have poorer health outcomes than others. Babies born to women in manual social classes are one and a third times more likely to be born with a lower birth weight than babies born to women in non-manual social classes.[67] Children born into poor families will also suffer from a higher infant mortality rate and generally have poorer health.[68]

81. Attending antenatal appointments and classes may be costly and difficult for women who live in poverty where affordable and convenient public transport is lacking. The NCT argued that "this discourages those who would most benefit from being seen by health professionals attending appointments."[69]

82. We also heard of the financial difficulties facing those who had to travel long distances to be with their babies in Special Care Baby Units. The extra financial burden on low-income families might pose particular difficulties at this time. Currently help with the expense of visiting is restricted to people who receive income support or job seeker's allowance.

83. Christine Gowdridge, Director of Maternity Alliance, told us that in some areas health visitors were not pro-active enough in providing support for women and babies living in poverty—their approach to care was to say "Get in touch if you have a problem."[70]

84. Access to health service provision for women and families who have become homeless and who are living in temporary accommodation can be fraught with difficulty, not least because it can vary dramatically between different areas. The Maternity Alliance found that:

The services a family received were generally determined less by need and more by luck with respect to the level and quality of what was available in the locality in which they were living.[71]

85. In our last inquiry, into provision of maternity services, we heard that most women gained access to maternity services through their GP. However, a great many women who are homeless struggle to gain access to GP services. The Maternity Alliance told us that over half of the women they surveyed did not have a GP in the area where they were temporarily housed, because they had chosen to remain registered with a GP in the area where they had last been securely housed. Seeing a GP could then involve substantial travel and expenditure.

86. Without access to maternity care through a GP in the community, most homeless women tend to receive their maternity care at hospitals. Jenny McLeish from Maternity Alliance told us that:

They do not get the community care because they never get through that route to the community midwives, who are probably better placed to form relationships and give them support … so they are really disadvantaged.[72]

87. The Maternity Alliance found that women's expectations of antenatal care were low, but that while they did not expect any social support or maternity care designed to cater to their particular needs, "their concerns for their pregnancy all related to their social circumstances."[73]

88. Access to care after the birth of a baby can also be problematic for homeless women, as a hospital midwife told the Maternity Alliance. She described the "frustrations and anxieties" of hospital staff who discharged women into the care of local Homeless Persons Units (HPUs) but who then had great difficulty finding out from HPUs where the women and their babies were living.[74]

89. This difficulty in maintaining contact with women who move from place to place can be compounded by lack of communication between social services in different areas.[75] Lesley Spires told us that:

we do have a lot of problems about going across social services boundaries. If you need to be in contact with social services then once a woman moves out of one area into another that [contact] seems to break down. Unless the midwife is following that woman through, the other services do not seem to do that … you are going to lose women if they do not have the confidence to keep in touch with the midwife or the services they are getting.[76]

90. We were also concerned to hear of individual social workers giving mothers the general impression that it would be easier to take a baby away and care for him or her, rather than work with the family to keep them together. We recognise that in extreme cases social workers do have to recommend that babies are taken away from parents but this experience suggests that more needs to be done to ensure that social workers are trained to understand and respect the sensitivities of homeless and disadvantaged families so that it is clear that families will be kept together where this is possible.

91. Although there are ways in which maternity services, and social services, can be adapted to meet some of the needs of pregnant women and mothers living in poverty, the RCM argued that:

The problems lie beyond the maternity unit and helping to give the children of women who live in poverty a better start in life must be about the wider anti-poverty agenda and helping the financial circumstances of the mother.[77]

92. Those responsible for rehousing pregnant women and women with young babies should be able to pass information on to maternity and health visitor services where women wish for these services to be provided. Currently methods of passing on information are inadequate and the situation needs to be improved. We recommend that the Department should assess the difficulties faced by low-income families who have to spend long periods visiting their babies in Special Care Baby Units and that the Department should then take steps to ensure that sufficient financial support is provided so that these families can meet travel and other costs.

Those from the travelling community

93. Women from the travelling community may not gain full access to maternity services for a variety of reasons. Those who move from one official stopping place to another have little chance of receiving continuous antenatal or postnatal care. Every move means that a woman has to seek out local health services where professionals might not have access to her medical records. Travellers who reside in the same place throughout their pregnancy and the postnatal period may face hostility from the local population and from some health professionals when they seek maternity care.[78]

94. Jenny McLeish from Maternity Alliance told us that the travelling community was "unpopular … seen as resistant to services" and Christine Gowdridge reported that when the Maternity Alliance sought funding for an initiative designed to improve services for travellers, one potential funder responded by saying that the project was "a waste of money."[79] She went on to illustrate the need for funding and for specific projects to help women and families from the travelling community as she told us of the results of a survey of the provisions maternity services made for women from the travelling community. The response from one unit was "we rent out car seats."[80]

95. Lesley Spires from Queen Charlotte's and Chelsea Hospital, London identified women from the travelling community as a group "who traditionally do not attend for antenatal care." She went on to cite as a reason for this non-attendance "that barrier where women feel they cannot trust the professionals."[81] We are concerned that prejudice on the part of health service staff has perpetuated this mistrust.

96. The Department assured us that the Children's NSF would examine how to make services more accessible for travellers, and that it was funding the Maternity Alliance project which would involve consultation with women and with health professionals to produce guidance on service delivery and provision of information.[82]

Those who live under threat of domestic violence

97. Some 12% of the women whose deaths were reported in the latest CEMD had disclosed that they were subject to domestic violence. All of the evidence we received on this aspect of our inquiry stated that domestic violence often starts or intensifies when a woman is pregnant.

98. Violence during pregnancy is associated with premature birth, low birth weight, fetal injuries to limbs and organs, placental abruption[83] and premature spontaneous rupture of the membranes.[84] However, women who are subject to domestic violence may be reluctant to come forward for care, may have a partner who prevents them from attending, or prevents them from participating fully in discussions at antenatal appointments. They may be reluctant to disclose abuse if they have fears about confidentiality. It was also pointed out to us that it was no good for staff to identify domestic violence if nothing could be done to help women facing this problem.

99. We believe that domestic violence is substantially under-reported and that the true scale of the problem remains unknown. We endorse the RCOG's call for further research into the prevalence of domestic violence, and into effective models of intervention. All maternity services need to have access to support services, to which they can refer those who are suffering from domestic violence. All women should have ready access women's refuges so that maternity services can protect women who disclose domestic violence from further abuse.[85]

Those with severe mental health problems

100. Why Mothers Die provides worrying evidence that some women with mental health problems do not gain access to appropriate maternity care. In working with the Office for National Statistics to identify deaths that previously would have passed unrecognised by the Enquiry, CEMD found that information on maternal deaths from mental illness had been subject to "a large degree of under-ascertainment". However, in terms of the deaths which were recognised, when all deaths up to one year from delivery were taken into account, suicide was the leading cause of 'indirect' death (death from a medical condition exacerbated by pregnancy) and also the leading cause of maternal deaths overall.[86]

101. The RCM told us that access to maternity care for women with severe mental health problems was compromised by a "lack of specialist practitioners available to childbearing women with mental illness" and by a lack of co-operation between mental health and maternity services, which meant that pregnant women with mental health problems might be cared for by general psychiatrists, without support or care from midwives.[87]

102. The RCM cited a lack of specialist facilities as one of the main barriers to access to appropriate maternity care for women with severe mental health problems:

There are entire counties without mother and baby units, requiring midwives and mental health professionals to refer to larger cities some distance away. This compromises care, safety, and the well-being of mothers and babies. Where there is no alternative to separation, subsequent maternal and infant bonding can be compromised.[88]

103. We also heard a disturbing account of how lack of communication and co-operation between mental health services and maternity services could jeopardise short and long term health outcomes for mother and baby:

Most mental health teams do not recognise postnatal depression at all … if a woman displays some bizarre behaviour she cannot go to the mother and baby unit, so she is separated from the baby and admitted to a mental health hospital, which is going to exacerbate her problem because she is not with the baby.[89]

104. Carolyn Roth from Women's Health and Family Services said that, along with colleagues at City University, she had identified access to maternity services for women with mental health problems as an area requiring further research and sharing of good practice: "at the moment we do not know what midwives are doing with respect to the social and mental health needs of women, we do not know what they ought to be doing."[90]

105. All trusts should ensure that maternity and mental health services work together to provide proper support for women during pregnancy and the postnatal period. We believe that the Department should give high priority to addressing the problem of inadequate provision of mother and baby units in some parts of the country. Mental health trusts should appoint lead practitioners to ensure that care for these women is properly co-ordinated.

Those with severe disabilities

106. Women who have physical or mental disabilities or impairments, face barriers to access to appropriate care even before they or their partners become pregnant, because they are not seen as prospective parents by those around them. During a consultation with 150 parents with disabilities (which was funded by the Department), the Disabled Parents Network (DPN) gathered evidence of the effect of this attitude on parents' ability to gain access to services. One parent said "I had no sense that support and acceptance would be available" and another reported:

The message coming to me since I was a baby was, you can't do and you can't be … I never thought that I would be a parent. It meant that when I did get pregnant I had no idea what was going on.[91]

107. The Maternity Alliance portrayed a particularly bleak situation for women with learning disabilities:

the possibility of motherhood is often discouraged, active decisions to become a parent are unsupported and resources to prepare and support the future parents are unavailable.[92]

108. In its written submission to our inquiry, the Department recognised that "disabled people, when choosing to become parents, often face negative attitudes, an inaccessible environment and support which is inappropriate."[93] The RCOG further acknowledged that in terms of maternity services, "ensuring that people with learning disabilities have equal rights … is a particular challenge."[94]

109. Prospective parents with physical disabilities have particular need of specialist maternity care. A woman's pregnancy may be affected by her impairment, or her impairment by her pregnancy. However, just as pregnant women and mothers with mental health problems may receive care from two discrete groups of health professionals, disabled people often struggle to negotiate a package of care which takes into account all of their circumstances.

110. Providing this package of specialised care for a woman can be a difficult task for maternity care staff. The RCOG told us that:

Obstetricians and midwives are at a disadvantage because they may only encounter women with a particular disability infrequently and do not have the chance to become an expert in management of the particular problem nor the resources to provide optimum care.[95]

111. Although we fully understand that obstetricians and midwives and indeed GPs and health visitors cannot hope to have ready knowledge of all disabilities and their implications for pregnancy, we were dismayed to hear that some women with disabilities are denied any sort of continuity of care because health professionals are so eager to refer them to others. Simone Baker, Vice-Chair of the DPN confirmed that lack of expertise on the part of health professionals could reinforce barriers to access to care in that "everybody washes their hands of their responsibility and the person who pays the price is the disabled mother-to-be."[96]

112. The DPN cited examples of instances where maternity services might easily fail mothers with disabilities and their babies, and where barriers to access were simple but fundamental. These included reports of visually impaired women struggling with feelings of disorientation at antenatal clinics because staff did not take account of their disability, and of deaf mothers, family members and friends who were unable to gain access to maternity wards or units which operated intercom systems.[97]

113. As an active member of her local MSLC Simone Baker (along with the lay chair of the committee) overcame a fundamental barrier to access to appropriate maternity care by securing the purchase of height-variable cribs so that women with disabilities could reach their babies by themselves. However, the cost of the cribs was met by a private company rather than by the trust, and Mrs Baker was not aware that this example of good practice in providing appropriate care for disabled parents and their babies had been spread beyond her local area.[98] The height-variable cribs were not much more expensive than other cots and they were also of benefit to mothers who suffered from back pain, and to those recovering from surgery.

114. Although women may require care specific to their particular disability or impairment, women with all kinds of disabilities may encounter the same barriers to access. The DPN told us that:

It is usually structural and attitudinal barriers that 'disable' women during their contact with maternity services and these are often generic regardless of the nature of an individual's impairment (lack of physical access, lack of information in accessible formats, negative attitudes of staff, lack of adaptive baby equipment, lack of appropriate means of communication etc.).[99]

115. The DPN told us that in particular, disabled parents (most notably those with learning difficulties) appear to have very limited access to, or even knowledge of, antenatal education and postnatal support groups. One mother described the first 18 months of her baby's life to the DPN as "a nightmare … I have lurched from one crisis to the next."[100]

116. Information that is provided to expectant parents should be made fully accessible to all groups of people with disabilities, including those with physical or sensory impairments, people with learning difficulties or long-term illnesses and people with mental health problems.

117. Maternity units and services should be made accessible to all groups of people with disabilities. We recommend that the Department set up systems for best practice to be shared so that people with disabilities do not have to struggle to make their views known in every area before improvements are made. For example, the obvious success of height-variable cots in one area should automatically be picked up by other units. We have little confidence that this happens now.

41 Ev 47 Back

42 Q 167 Back

43 Ev 58 Back

44 Ev 64 Back

45 Q 174 Back

46 Q 128 Back

47 Ev 63 Back

48 Quarterly Asylum Statistics, Home Office, March 2003. http://www.homeoffice.gov.uk Back

49 Ev 47 Back

50 Q 169 Back

51 Ev 3 Back

52 24 October 2002 416W (Anne Campbell MP) Back