No voice, no choice: barriers to the exercise of choice by ‘marginalised’ women (part two)

Midwives online Dec 2008/Jan 2009



This paper will examine how ‘marginalised’ communities perceive the notion of choice in their access and engagement with maternity services. The article offers the voice of people consulted in the development of the Maternity Access and Advocacy Pack (MAAP), a pre-clinical information resource funded by the Department of Health through the charity Medact. The artist for the project, Heidi Cutts worked collaboratively throughout the creation and design of the tool, up to the piloting stage, which was developed with and for the community to enhance social capital.

The article begins with a brief outline of the MAAP before providing an insight into some of the perspectives given by the 400 people who helped in the development of the pack. The article is the second in a series, which expands on a presentation given by the authors at the RCM annual conference in Brighton (2007).

Background

The MAAP is a discursive picture-based resource aimed at increasing the choice agenda for users of maternity services. In particular, it aims to help people who find it more difficult to access and engage with care. This includes asylum-seekers and refugees, migrants and people with insecure immigration status, homeless people, women with mental health problems and/or problematic addiction, black and minority ethnic women who do not speak English and women recently discharged from prison services. However, the above list is not exhaustive and the MAAP has also proven to be beneficial for men, partly because of its whimsical nature, but more importantly, because there is nothing depicted that could be construed as offensive or embarrassing.

The MAAP was made in response to initial consultations, which revealed that people wanted something to look at about maternity services and someone they trusted to talk to before they used them. It was developed as a piece of action research that involved a number of individuals and groups longitudinally over the whole project. This was interspersed with information gained from a diverse number of groups, who were presented with the project on one-off occasions for comment. The MAAP was funded by the Department of Health (DH) with a project remit of producing a ‘tool’ that hard-to-reach communities would find useful in enabling them to access and use maternity services. The emphasis was therefore to produce something that was guided by policy, but importantly that the users would find acceptable. The ‘tool’ also needed to reflect their need for information rather than something experts thought the community should know. The participants guided the shaping of the resource, they stipulated that they wanted to include common expressions and words used in maternity services and that the text should not be over-simplified. They also asked that the postnatal storyboard be called ‘Becoming a parent’ as this was perceived to be more positive and inclusive to the father. The term ‘postnatal’ was perceived by a number of women to be too medicalised. In the development of the MAAP, participants’ choices were therefore paramount. Primary issues included the need for the ‘tool’ to be discursive rather than instructive. Communities were adamant that they did not want a step-by-step guide to what would happen. They wanted to be able to talk within their communities about choice, about informed consent and about partnership working.

The MAAP consists of storyboards in line with National Institute for Health and Clinical Excellence guidance about pathways of care through pregnancy, labour and becoming a parent. An accompanying booklet written by the authors, expands on the information available and includes photographs of those involved in the consultations. The booklet addresses issues and concerns raised in the consultation with users, for example, how to access services, how to ‘feedback’ to services, domestic abuse, the role of social services, child protection and a glossary of terms used in maternity services.

The development of the MAAP was conducted over 18 months, mostly in London but ‘one-off’ consultations, workshops and interviews were also conducted in Dover, Durham, Manchester, Leicester, Liverpool and Blackburn. The consultations took the form of semi-structured individual interviews and engagement with a number of focus groups. A number of workshops were also conducted with professionals, advocates, midwives and providers of mental health services. The groups included Southwark Refugee Forum, the Maya project for problematic addiction, Camden Women’s Aid, Birth and Breastfeeding Support, Lifeline (a church-based national support service), South London and Maudsley Mental Health Services and the East London Mosque. Action research in the creation and development stage meant that ideas and input from a central group were checked regularly by one-off sessions with different groups of men and women who were not familiar with the project.

Developing the MAAP produced a plethora of information and insights into public understanding, experience and evaluation of maternity services. Recognising a need to increase awareness of the choice agenda led to the inclusion of a symbol for choice being created. This was prominent on the storyboards with two other symbols created for ‘ask for an interpreter’ and ‘talk about your feelings’. Superficially viewed, the illustrations depict a gentleness of pace, time for cups of tea and talking, thus reiterating the main message to ask your midwife questions and talk about your feelings. These were the central messages people wanted and not a prescriptive ‘conveyor belt’ approach – ‘this will happen, followed be this, and then this…’, but a strong subliminal message that the healthcare provider was a source of information to help you make your choices.

Policy recommendations

Standard 11 of the National Service Framework (Department of Health, 2004b) aimed to promote choice and control to women in using the service. The standard sought to improve equity of access to maternity services, in order to increase the survival rates and life chances of children born to disadvantaged backgrounds. More recently, Maternity matters (Department of Health, 2007) and Making it better for mother and baby (Shribman, 2007) have highlighted the importance of partnership working, of sharing information and concerns as a two-way process between providers and women. Undoubtedly antenatal care, particularly continuity of care has been highlighted as pivotal in building trust and empowering women to make informed choices about themselves and the wellbeing of their babies (Bentham, 2003).

Voices from the community

One of the first choices a woman has to make is whether to access services or not. In order to make this decision, she will need to be aware of what accessing services means. In research conducted as part of the MAAP development, one informant framed this issue well by stating:

‘When you are new to this country, even when language is not a problem… I could speak English when I arrived, there is no information about what to do if you find yourself pregnant. It is easier to find out about getting a new kitchen…’
(asylum-seeker from the Democratic Republic of Congo).

The consultation process revealed that maternity services were opaque and difficult to access, especially if you were not integrated into the community and were transient in the neighbourhood, for example travellers, asylum-seekers and refugees, and women fleeing domestic abuse. Participants from the community including advocates and community workers felt a level of confidence in being able to help someone in their local area – what was more problematic was advising someone who had travelled across the city to attend an activity or advice session. Where women encountered racism and prejudice, further attempts to access maternity services were dependent on finding someone to help them.

‘If you know how the system works, you are more confident and that changes everything’ (Chinese advocate).

‘Different places have different policies, I did not understand what I was supposed to do so I did not go’ (woman from Egypt).

‘Sometimes it feels as though you are a disappointment. Some people do not even give you the basic care and some are very rude’ (woman from Somalia).

‘If you do not know, you do not ask and then you get a rawer deal’ (Irish traveller).

A change in legislation concerning ‘failed’ asylum-seekers has added a further layer of confusion and dissuasion to access maternity services for some vulnerable groups (Gaudion et al, 2007, 2006). The amendments were intended to tackle a perceived problem of health tourism, which is where people come to the UK with the primary purpose of making use of ‘free’ NHS services.

During the MAAP consultations, insights into the lived reality and unintended confusions created by the legislation were occasionally revealed:

‘I mean where people come from, there is no NHS, it is just pay, pay, pay… they do not know about free antenatal care, but they are frightened at the same time about people asking too many questions, about immigration and if it’s not their first baby, why do you need to go?’ (woman from Rwanda).

An advocate from the Latin American Community Organisation said:

‘When you should be enjoying the arrival of your baby, it is terrible to be hounded about money. It’s like psychological warfare – if you do not have the money, how can you pay?’

and:

‘For some undocumented migrants or people who have overstayed their visa, the issue is not the money, one can borrow a little bit here and there to make the £3000. It is the status issue, the fear of being reported… One woman recently who was eight months pregnant, she was too frightened to go for antenatal care, because of her status, her passport had expired and she was frightened that she would be deported.’

Stigmatising labels

Many of the people involved in the action research felt that their particular stigmatising label, for example, mental health problems, problematic addiction or immigration status became their main identity within maternity. Women talked of midwives who in their endeavour to ‘sort out’ the problem, for example, making a referral to other agencies such as social services or mental health services forgot to talk to the woman about their pregnancy. Women felt that they had missed out on basic information such as screening and breastfeeding, they felt shunned and unwelcome in the service:

 ‘I put it off, going I mean till I was eight months gone. It was their attitude, therefore I put it off… It makes you afraid… They did not want to know… I mean the organic women, you know those ladies with partners and flowers and a bag packed, they get treated differently, they get asked not told’ (woman with problematic addiction).

In the recent publication of the survey of experience of maternity care by the National Perinatal Epidemiology Unit (NPEU, 2007), one of the stated cross-cutting themes was that of choice and the options that women have available to them in their maternity care. The report states that:

‘The most disadvantaged women were more likely to feel that staff had not communicated with them in a way they could understand during all phases of perinatal care and did not always feel they were treated with respect or as individuals’ (NPEU, 2007: 71).

The report added:

‘Fewer options were available to this group and access to information was more limited’ (NPEU, 2007: 72).


Conclusion

The MAAP paints a picture of maternity services as offering the opportunity to ask questions. The storyboards present ethnic diversity within care provider and receiver in a caring, listening maternity services, but it is not the solution. This is simply because it is not intended to give the answers, but to provoke questions. It is for maternity services to be sensitive to the different cultural, social and intellectual needs of women in regards to access to appropriate information. This needs to be in the appropriate language and format, for example, text, film, audio and pictures. Appropriate use of interpreters and advocates is central, and ‘making do’ or ‘muddling along’ is no excuse for substandard care. Both the Professional Code of Conduct (NMC, 2008) and Rule 6 of the Midwives’ rules and standards (NMC, 2004) obliges the midwife to respect the woman as an individual and to work ‘in partnership’ with her to enable her to participate fully in decisions about care. Only when there is equity of information can women and their families begin to be partners in care and to make the best choices according to their individual needs.

The MAAP aims to encourage women and their families to ask questions around the taxonomies of childbirth, but it is for maternity services to look at their practices and actively listen to their women’s voices. The central themes ‘ask about your choices’, ‘ask for an interpreter’ and ‘talk about how you are feeling’ may help to facilitate some women or an advocate to slow down the system enough to enable available choices to be explained subsequently enabling personal informed choices. In the development of the MAAP, it was demonstrated that a wealth of information already exists in the community, which was stimulated by the pictures in the storyboards. Social capital enhanced within communities and actively encouraged advocacy in all its forms can only help women and their families to be more confident in their questioning and ultimately their choices. The risk remains that the MAAP may be delivered in an instructive way rather than letting the pictures ‘do the talking’, but the central message ‘Ask about your choices’ may be enough for a woman to enquire: What are my choices? And what does it mean for me?


In summary

‘Communities are wise, if you give us a choice and include and embrace our voices, allow us to bring forward our experiences and visions, we can become doorways rather than divisions’  (woman from Uganda).


References

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Department of Health. (2004b) National Service Framework for children, young people and maternity services (standard 11). HMSO: London.

Department of Health. (2007) Maternity matters: choice, access and continuity of care in a safe service. HMSO: London.

Gaudion A. (2007) The development of the Maternity Access and Advocacy Pack (MAAP). See: www.medact.org/content/maap/finalreportdeveloppilotmaap.pdf (accessed 30 October 2008).

Gaudion A. (2006) The Reaching Out Project: report on the preliminary consultations: May to July 2005. See: www.medact.org/content/reaching_out/report%20preliminary%20consultations.doc (accessed 30 October 2008).

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