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Pregnancy and complex social factors

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1 Pregnancy and complex social factors
Implementing NICE guidance ABOUT THIS PRESENTATION: This presentation has been written to help you raise awareness of the NICE clinical guideline ‘A model for service provision for pregnant women with complex social factors’. This guideline has been developed in collaboration with the Social Care Institute for Excellence. It is for professional groups who are routinely involved in the care of pregnant women, including midwives, GPs and primary care professionals who may encounter pregnant women with complex social factors in the course of their professional duties. It is also for those who are responsible for commissioning and planning healthcare and social services. In addition, the guideline will be of relevance to professionals working in social services and education/childcare settings, for example school nurses, substance misuse service workers, reception centre workers and domestic abuse support workers. The guideline is available in a number of formats, including a quick reference guide. NICE recommends that you hand out copies of the quick reference guide at your presentation so that your audience can refer to it. See the end of the presentation for ordering details. You can add your own organisation’s logo alongside the NICE logo. We have included notes for presenters, broken down into ‘key points to raise’, which you can highlight in your presentation, and ‘additional information’ that you may want to draw on, such as a rationale or an explanation of the evidence for a recommendation. Where necessary, the recommendation will be given in full. DISCLAIMER This slide set is an implementation tool and should be used alongside the published guidance. This information does not supersede or replace the guidance itself. PROMOTING EQUALITY Implementation of this guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement the guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have regard to promoting equality of opportunity. Nothing in this guidance should be interpreted in a way which would be inconsistent with compliance with those duties. 2010 NICE clinical guideline 110

2 What this presentation covers
Background Scope Key priorities for implementation Costs and savings Discussion Find out more NOTES FOR PRESENTERS: In this presentation we will start by providing some background to the guideline and why it is important. We will then present the key priorities for implementation. The NICE guideline contains 14 key priorities for implementation, which you can find on page 16 to 18 of your quick reference guide. Next, we will summarise the costs and savings that are likely to be incurred in implementing the guideline. Then we will open the meeting up with a list of questions to help prompt a discussion on local issues for incorporating the guidance into practice. Finally, we will end the presentation with further information about the support provided by NICE.

3 Background Women with complex social factors are at higher risk of death during or after pregnancy than other women. They are less likely to access antenatal care or stay in regular contact with maternity services. Providing antenatal services in a more flexible way may encourage more women to attend and receive appropriate care and referrals. NOTES FOR PRESENTERS: Key points to raise: This guidance has been developed in response to an acknowledgement of unaddressed problems in pregnant women with complex social factors, that is, women whose social situation may impact adversely on pregnancy outcomes for them and their babies. Examples of complex social factors in pregnancy include: poverty; homelessness; substance misuse; recent arrival as a migrant; asylum seeker or refugee status; difficulty speaking or understanding English; age under 20; domestic abuse. Complex social factors may vary, both in type and prevalence, across different local populations. ‘Saving mothers’ lives’ (2007) highlighted that late booking for antenatal care was a feature in 17% of women who died from direct or indirect causes, compared with 2% of the general population. [Bullet 1] Access to care has two components – physical and cognitive/mental. The former relates to uptake of services, whereas the latter is an additional component that requires physical access but underlines the fact that physical access in itself is not enough. The cognitive component relies on effective communication between women and care providers. [Bullet 2] Additional information: The NICE guideline ‘Antenatal care: routine care for the healthy pregnant woman’(clinical guideline 62 [2008] available from outlines the care that women should expect to be offered during pregnancy. However, women with complex social factors may have additional needs. This guideline sets out what individual healthcare professionals and antenatal services can do to address these needs and improve outcomes in this group of women. If women have additional health problems complicating pregnancy (for example hypertension, diabetes) in addition to social problems, the relevant NICE guideline should also be consulted to effectively direct clinical care.

4 Barriers to accessing care
Barriers may include: unfamiliarity with antenatal care services difficulty communicating with healthcare staff attitudes of healthcare staff practical problems attending antenatal appointments involvement of multiple agencies. NOTES FOR PRESENTERS: In addition to the information contained within this slide set, the quick reference guide contains an algorithm detailing the reasons why some pregnant women with complex social factors are discouraged from using antenatal care services and what can be done to overcome these problems (page 5). You may wish to highlight this to your audience as a tool to support the planning of care and organisation of services. Key points to raise: This may be a particular problem for women who are recent migrants, refugees, asylum seekers or for women with little or no English. If women do not know their rights with regards to maternity services or how antenatal services are structured this may be a significant barrier to accessing care. [Bullet 1] Communication may be an issue in terms of language barriers. However, this may also be related to the way in which healthcare staff communicate with women. The need for professionals to communicate sensitively and with respect for women’s concerns is addressed in the guideline. [Bullet 2] Insensitive attitudes, ignorance or a lack of understanding among healthcare staff can discourage women from attending for antenatal care or from discussing sensitive issues with professionals. [Bullet 3] Lack of transport may be a physical barrier to accessing care. There may be other practical problems with attending for appointments, such as appointments not being available at suitable times (for young women under 20 who may still be at school, for example). Women who experience domestic abuse may be prevented from accessing care by their partners. Designing services to meet the needs of these women may improve access to care. [Bullet 4] Some women may find this involvement overwhelming. In particular women who misuse substances or women who experience domestic abuse may be concerned about the involvement of social services and fear that their child may be taken away. It is important that the role of the multi-agency team is explained to the woman and that women are aware of when and how information will be shared to improve and support their antenatal care and any needs identified. [Bullet 5]

5 Scope Antenatal care of all women with complex social factors.
Four exemplar populations. Provides recommendations for service provision at a service/organisational level and at an individual healthcare provider level. NOTES FOR PRESENTERS: Key points to raise: The guideline describes how access to care can be improved, how contact with antenatal carers can be maintained, what additional consultations and support is required and what additional information should be provided for all pregnant women with complex social factors. [Bullet 1] For the purpose of developing this guidance, four exemplar populations were used to represent women with complex social factors that might impact on their health during pregnancy as well as pregnancy outcomes. Those population groups are:  Women who misuse substances (including drugs and/or alcohol)  Recent migrants, refugees, asylum seekers and women with little or no English  Young women aged under 20  Women experiencing domestic abuse Because there are differences in the barriers to care and particular needs of these four groups, specific recommendations have been made for each. However, there are many different kinds of social complications and the general principles will apply to women with any complex social need, or combination thereof. [Bullet 2] Additional information The population groups were chosen from those highlighted in the Confidential Enquiry into Maternal and Child Health as having poorer pregnancy outcomes than the general population. Specific issues addressed in the guideline include: the most appropriate healthcare setting for antenatal care provision; practice models for overcoming barriers and facilitating access, including access to interpreting services and all necessary care; and ways of communicating information to women so that they can make appropriate choices and optimisation of resources.

6 Key priorities for implementation
The areas identified as key priorities for implementation are: Service organisation - actions for commissioners and service organisers Information and support for women Care provision NOTES FOR PRESENTERS: The NICE guideline contains lots of recommendations about how care can be improved, but the experts who wrote the guideline have chosen key recommendations that they think will have the greatest impact on care and are the most important priorities for implementation. They are divided into four areas of key priority and within these there are 14 recommendations that we will consider in turn. Key points to raise: The service organisation recommendations are actions for commissioners as outlined in the following 7 slides. The first three relate to all women with complex social factors, followed by specific recommendations for exemplar groups. [Bullet 1]

7 All women with complex social factors
Define populations locally by ensuring data collection for: the number of women presenting for antenatal care with any complex social factor the number of women within each complex social factor grouping identified locally. NOTES FOR PRESENTERS: This slide and the following six slides cover service organisation level recommendations which are primarily aimed at healthcare commissioners and individuals responsible for the organisation of local antenatal services. Key points to raise: [Bullets 1 and 2] Examples of complex social factors in pregnancy include: poverty; homelessness; substance misuse; recent arrival as a migrant; asylum seeker or refugee status; difficulty speaking or understanding English; age under 20; domestic abuse. Complex social factors may vary, both in type and prevalence, across different local populations. Once data are available that inform mapping of the local population in terms of level of need and prevalence of particular vulnerable populations, services can be organised to better meet those needs. By recording the vulnerable group that each woman falls into, the level of need for each type of supportive service can also be measured. Recommendation in full: In order to inform mapping of their local population to guide service provision, commissioners should ensure that the following are recorded: The number of women presenting for antenatal care with any complex social factor. The number of women within each complex social factor grouping identified locally. [1.1.1]

8 All women with complex social factors
Ensure that specific data are recorded for each complex social factor grouping relating to: gestation at booking attendance and non-attendance at scheduled appointments maternal and infant mortality or significant morbidity. NOTES FOR PRESENTERS: Key points to raise: Data on gestation at booking should be collected for women who book by 10 weeks, 12 weeks and 6 days and by 20 weeks. The 10 week target is set out in the NICE ‘Antenatal Care’ guideline, and will give women the opportunity to access screening and a full health and social needs assessment at an early stage. This may be a difficult target to achieve for women in vulnerable groups. 12 weeks and 6 days reflects the target that is already recognised within maternity services for early booking. The final target, for 20 weeks is associated with the upper limit for carrying out serum screening for Down’s syndrome and anomaly screening using ultrasound. [Bullet 1] The number of antenatal appointments recommended for routine antenatal care is detailed in the NICE ‘Antenatal Care’ guideline. However, women with complex social needs may require additional appointments. Data collection should also include additional appointments that are scheduled for each woman, and also how many of the planned appointments are missed. [Bullet 2] Significant morbidity is morbidity that has a lasting impact on either the mother or the child. [Bullet 3] Recommendation in full: Commissioners should ensure that the following are recorded separately for each complex social factor grouping. The number of women who: attend for booking by 10, 12+6 and 20 weeks attend for the recommended number of antenatal appointments, in line with national guidance. experience, or have babies who experience, mortality or significant morbidity. The number of appointments that each woman attends. The number of scheduled appointments each woman does not attend. [1.1.2]

9 All women with complex social factors
Involve women in service development: ensure that women are asked about their satisfaction with services ensure that this information is recorded, monitored, and used to guide service development. NOTES FOR PRESENTERS: Key points to raise: [Bullets 1 and 2] Different models of service provision may be needed for different vulnerable groups. Feedback from service users will assist with the evaluation of whether the service model used is meeting the needs of the population. For example, young women aged under 20 may prefer dedicated services with age-specific content. Recent migrants, refugees and asylum seekers may need additional support to keep in touch with services and communicate their whereabouts effectively between service providers. Recommendation in full: Commissioners should ensure that women with complex social factors presenting for antenatal care are asked about their satisfaction with the services provided; and the women’s responses are: • Recorded and monitored • Used to guide service development. [1.1.3]

10 Women who misuse substances
Work with local agencies to: co-locate services develop inter agency care plans which include information about opiate replacement therapy offer women information about other services. Provide training for healthcare professionals on the social and psychological needs of women who misuse substances. NOTES FOR PRESENTERS: Key points to raise: Healthcare commissioners and service organisers should work in partnership with other local agencies that provide substance misuse services to coordinate antenatal care. Joint-commissioning of services and joint provision of care can maximise limited resources and facilitate good communication between those involved in the provision of care. [Bullet 1] Due to the unpredictable nature of some women’s lives, access to drug treatment and antenatal care in the same location may encourage attendance at antenatal visits. [Bullet 3] Training should include non-clinical staff such as receptionists and include training on how to communicate sensitively. - Professionals may not be comfortable exploring the issue of substance misuse and may be unaware of support services available. The evidence suggests that women with a substance misuse problem value staff with non- judgmental attitudes, reassurance about confidentiality and child protection processes, consistency of staff, information and a high level of support in terms of number of visits and time given at each appointment. Many of these women may not have direct contact with antenatal services. It is important that non-midwifery services also receive training in sensitive communication with this population group, and about how to make opportunistic referrals for maternity care. Additional information: For this population group, early access to antenatal care provides an opportunity for women to receive addiction treatment earlier in pregnancy. Of the 295 maternal deaths identified in the 2003–2005 triennium, 93 were in women who had problems with substance misuse. Seven women died in early pregnancy before they accessed antenatal care. Of all substance abuse related deaths, the majority took place after 42 days of birth. Offering support and preventive interventions antenatally is therefore crucial in planning care for this population. Recommendation in full: You may wish to refer your audience to pages 8 and 9 of the quick reference guide for an overview of the key recommendations for this population group.

11 Women aged under 20 Consider commissioning a specialist antenatal service for women aged under 20 using a flexible model of care tailored to local need This may include provision of education and care in peer group settings such as GP surgeries, children’s centres and schools NOTES FOR PRESENTERS: Pages 12 and 13 of the quick reference guide give an overview of the key recommendations for this population group. You may wish to refer your audience to these pages while discussing this slide. Key points to raise: Care should be individualised for each woman, but young women aged under 20 may benefit from receiving information and services tailored to their age group. [Bullet 1] Specialist antenatal services for young women aged under 20 may encourage improved contact with antenatal care. [Bullet 1] Components may include antenatal care in peer groups in a variety of settings, such as GP surgeries, children’s centres and schools. Antenatal education could be offered at the same time as antenatal appointments, and at the same location, such as a “one-stop shop” on a Saturday. [Bullet 2] Additional information: Although women aged under 20 have one of the lowest rates of maternal mortality of all age groups, the most recent perinatal mortality report showed that babies of women aged under 20 are at risk of higher rates of stillbirths, perinatal deaths and neonatal deaths than women aged 20–34. The infant mortality rate for babies born at term/post term was almost twice that of babies born to mothers aged 30–34. Recommendation in full: • Commissioners should consider commissioning a specialist antenatal service for young women aged under 20, using a flexible model of care tailored to the needs of the local population. Components may include: antenatal care and education in peer groups in a variety of settings, such as GP surgeries, children’s centres and schools antenatal education in peer groups offered at the same time as antenatal appointments and at the same location, such as a ‘one-stop shop’ (where a range of services can be accessed at the same time). [1.4.3]

12 Women who experience domestic abuse
Develop a joint protocol with social care providers, the police and third sector agencies. This should include: clear referral pathways which set out how information and care will be provided latest government guidance sources of support and safety information plans for follow-up care recording of contact information for both the woman and others involved in her care. NOTES FOR PRESENTERS: Pages 14 and 15 of the quick reference guide give an overview of the key recommendations for this population group. You may wish to refer your audience to these pages while discussing this slide. Key points to raise: A key healthcare professional with a special interest in domestic abuse should be identified to write a local protocol, but it should be developed jointly with social care providers, the police and third sector agencies. Continuity of carer is an important element in encouraging this population group to maintain contact with antenatal services. However, healthcare professionals should be able to refer to, or work jointly with, other staff. This may include third sector agencies such as domestic abuse support workers. [Bullet 1] This information can be found on the Department of Health website at [Bullet 2] Allowing extra time for antenatal appointments and potentially additional consultations may be necessary. The importance of providing women the opportunity to see the health professional alone should also be highlighted. [Bullet 4] Additional information: This recommendation and the others in this guideline relate to women who have disclosed domestic abuse. Routine enquiry about domestic abuse in maternity settings is accepted by women, providing it is conducted in a safe confidential environment. The NICE ‘Antenatal care’ guideline contains evidence and recommendations on screening for domestic abuse. Of the 295 maternal deaths across the UK reported in the 2003–2005 triennium 70 occurred in women who had experienced domestic abuse. 19 of those women were murdered. Identifying women who are experiencing domestic abuse and supporting them to engage with and maintain contact with the appropriate services is therefore crucial. Recommendation in full: The full recommendation can be found on page 18 of the quick reference guide.

13 Recent migrants, asylum seekers and refugees
Provide information about pregnancy and antenatal services in a variety of: formats settings languages NOTES FOR PRESENTERS: Pages 10 and 11 of the quick reference guide give an overview of the key recommendations for this population group. You may wish to refer your audience to these pages while discussing this slide. Key points to raise: Poor outcomes are thought to be related specifically to difficulty accessing services due to language barriers and a lack of knowledge and understanding about how the health and social care system works. [Bullet 1] For some women attendance at antenatal appointments may not be an issue, but for many women with little or no English there is difficulty accessing knowledge and information when they do attend due to a lack of interpreters and of information in an easily understandable form. [Bullet 1] Additional information: The last three triennial reports show a tripling of direct and indirect maternal deaths of women who were refugees and asylum seekers. Of the maternal deaths reported in the triennium 2003–2005, 10% of them were in women who could not speak English. 23% of these were late bookers or had missed more than 4 visits, and 12% not receiving any antenatal care at all. This data suggests that women who accessed antenatal care at some point experienced barriers that prevented them from receiving full care or benefitting from the care they received. Recommendation in full: • Those responsible for the organisation of local antenatal services should provide information about pregnancy and antenatal services, including how to find and use antenatal services, in a variety of: formats, such as posters, notices, leaflets, photographs, drawings/diagrams, online video clips, audio clips and DVDs settings, including pharmacies, community centres, faith groups and centres, GP surgeries, family planning clinics, children’s centres, reception centres and hostels languages. [1.3.5]

14 All women with complex social factors: information and support
At her first contact with any healthcare professional: Discuss the need for antenatal care. Offer a booking appointment in the first trimester if she wishes to continue the pregnancy. Offer referral to sexual health services if she is considering termination of pregnancy. During antenatal care: Provide each woman with a one-to-one consultation on at least one occasion. NOTES FOR PRESENTERS: Key points to raise: It is important that women are offered the opportunity to attend for antenatal care as early as possible in pregnancy. Early assessment of needs and screening are likely to result in more appropriate antenatal care, and associated improved pregnancy outcomes. [Bullet 1] Health and social care professionals should refer pregnant women to a midwife or antenatal clinic as soon as pregnancy is disclosed. [Bullet 1] At an early stage, discussion of termination of pregnancy and referral to sexual health services may be appropriate if a woman is considering this. [Bullet 1] To facilitate discussion of sensitive issues all women should be given at least one opportunity to have a one-to-one consultation with a healthcare professional with no other person present. If an interpreter is required for this consultation, this should not be a partner, friend, legal guardian or family member. [Bullet 2] Recommendation in full: For women who do not have a booking appointment, at first contact with any healthcare professional: discuss the need for antenatal care offer the woman a booking appointment in the first trimester, ideally before 10 weeks if she wishes to continue the pregnancy, or offer referral to sexual health services if she is considering termination of the pregnancy. [1.1.11] Consider initiating a multi-agency needs assessment, including safeguarding issues so that the woman has a coordinated care plan. [1.1.7]

15 All women with complex social factors: care provision
Co-ordinate care and communicate sensitively. Consider initiating a multi-agency needs assessment. Discuss the woman’s fears in a non-judgmental manner, respecting her right to confidentiality. Explain why and when information may need to be shared with other agencies. NOTES FOR PRESENTERS: Key points to raise: Where women have complex social problems, their needs may be best met through coordinated support from multiple statutory or third sector agencies. [Bullet 1] A multi-agency needs assessment, including safeguarding issues may be appropriate to develop a coordinated care plan. This may involve use of the ‘Common assessment framework’. [Bullet 1] One of the barriers that women may face in accessing antenatal care is anxiety about the attitudes of healthcare staff. Healthcare professionals should respect women’s rights to confidentiality and discuss any concerns sensitively. [Bullet 2] Evidence suggests that disclosure of personal circumstances (for example substance misuse, migrant status and domestic abuse) is a barrier to women accessing antenatal care. Healthcare professionals should explain why information is needed to plan care, and who these details may be shared with. [Bullet 3] Recommendation in full: Consider initiating a multi-agency needs assessment, including safeguarding issues so that the woman has a coordinated care plan. [1.1.7] Respect the woman’s right to confidentiality and sensitively discuss her fears in a non- judgemental manner. [1.1.8] Tell the woman why and when information about her pregnancy may need to be shared with other agencies. [1.1.9]

16 Costs and savings The guideline is unlikely to result in a significant change in resource use in the NHS. However, the following may result in additional costs or savings, depending on local circumstances: Offering a named midwife or doctor with specialised knowledge of, and experience in, the care of women who misuse substances. Antenatal care and education for women under 20. Potential savings around the packaging of services and improving pregnancy outcomes. NOTES FOR PRESENTERS: Key points to raise Where a named midwife or doctor is not currently being provided, the cost per woman who misuses substances ranges from around £350 to around £420. These costs are based on Agenda for Change 2009/10, include employers’ costs such as national insurance contributions and superannuation, and assumes a midwife can see around 100 women who misuse substances each year. However, this may not necessarily be an additional cost as consideration should be given to redirection of existing staff resources to this area. [Bullet 1] It is estimated that the staff cost of providing a ‘one-stop shop’ (where a range of services can be accessed at the same time) for one afternoon a week is around £5500 per year. This is based on 0.1 whole time equivalent (WTE) band 6 (midpoint) midwife, supported by 0.1 WTE band 4 support staff. [Bullet 2] in view of the overlapping nature of the different groups of pregnant women with complex social factors, the consolidation of services and training programmes may lead to savings. It is also considered that by improving access and care provided to women with socially complex pregnancies, mortality and morbidity for both the mother and the baby could be reduced. [Bullet 3] Recommendations in full: Women who misuse substances (alcohol and/or drugs): Service organisation Offer the woman a named midwife or doctor who has specialised knowledge of, and experience in, the care of women who misuse substances, and provide a direct-line telephone number for the named midwife or doctor. [1.2.4] Young women aged under 20: Service organisation Commissioners should consider commissioning a specialist antenatal service for young women aged under 20, using a flexible model of care tailored to the needs of the local population. Components may include: antenatal care and education in peer groups in a variety of settings, such as GP surgeries, children’s centres and schools antenatal education in peer groups offered at the same time as antenatal appointments and at the same location, such as a ‘one-stop shop’ (where a range of services can be accessed at the same time). [1.4.3]

17 Discussion What local processes are in place to ensure that data are collected regarding women with complex social factors? What sources of information are available for women, and do they meet the needs of the population group for which they are intended? What processes are in place to support joint working? NOTES FOR PRESENTERS: These questions are suggestions that have been developed to help provide a prompt for a discussion at the end of your presentation – please edit and adapt these to suit your local situation. Additional questions: What groups of women with socially complex pregnancies are represented in the local population? What training is in place to support healthcare professionals in delivering care to women with socially complex pregnancies? What training could be provided to staff who work with women who misuse substances?

18 Find out more Visit www.nice.org.uk/guidance/CG110 for: the guideline
the quick reference guide ‘Understanding NICE guidance’ a costing statement audit support baseline assessment tool a guide to resources examples from practice NOTES FOR PRESENTERS: You can download the guidance documents from the NICE website. The NICE guideline – all the recommendations. A quick reference guide – a summary of the recommendations for healthcare professionals. ‘Understanding NICE guidance’ – information for patients and carers. The full guideline – all the recommendations, details of how they were developed, and reviews of the evidence they were based on. For printed copies of the quick reference guide or ‘Understanding NICE guidance’, phone NICE publications on or and quote reference numbers N2290 (quick reference guide) and/or N2291 (‘Understanding NICE guidance’). NICE has developed tools to help organisations implement this guideline, which can be found on the NICE website: A costing statement – details of the likely costs and savings when the cost impact of the guideline is not considered to be significant. Audit support – for monitoring local practice. Baseline assessment tool - an excel spreadsheet that can be used to help review current practice and plan activity needed to meet recommendations A guide to resources – signposts to practical resources Examples from practice – a compendium of service descriptions taken from the full guideline


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