Summary Report on Consumer, Carer, and Stakeholder Perspectives on Maternity Care in Regional, Rural and Remote Queensland: June 2010 Written and submitted by: Sue Kruske and Rachelle Jones Queensland Centre for Mothers & Babies prepared for: Kerry Ann Ungerer Manager, Maternity Unit Primary, Community & Extended Care Branch Queensland Health 6ummary 5eport RIFonsumer, Farer, Dnd Vtakeholder Serspectives on Maternity Care in Regional, Rural and Remote Queensland June 2010 Written and submitted by: Sue Kruske and Rachelle Jones Queensland Centre for Mothers & Babies Introduction As part of the Review of Maternity Services in Queensland, Hirst (2005) undertook a comprehensive review of maternity services in Queensland, which led to a number of initiatives being implemented by Queensland Health. This report builds on the culminating Re-Birthing report by ensuring representation from previously under-represented groups including Indigenous consumers and their care providers as well as rural and remote consumers and maternity care providers. Between March and June 2010 representatives from the Queensland Centre for Mothers & Babies travelled throughout regional, rural and remote Queensland to explore the maternity care experiences of these groups. The following is an overview of the consultations that were undertaken during this time, including recommendations based on our findings. Aim The aim of the „Roadshow‟ was to seek representation from previously under-represented groups of maternity care stakeholders in Queensland. In addition to this we sought to meet the following objectives: To promote the activities of the Queensland Centre for Mothers & Babies (QCMB) To access and develop relationships with particular target audiences (i.e., rural, remote and Indigenous consumers, maternity care providers and broader stakeholder representatives) To encourage feedback on stakeholders needs and expectations of the QCMB To enable a mapping of consumers‟ and clinicians‟ maternity care needs To identify sites for future potential collaborative research projects and activities Towns visited A total of 31 towns and 37 facilities were visited, 27 of which offered birthing services. Roadshow1: Cairns Innisfail Mareeba Tully Georgetown Hughenden Atherton Croydon Richmond Charters Towers Townsville 1. Roadshow2: 2. Mt Isa Cloncurry 3. Barcaldine 4. Woorabinda Blackall Biloela Longreach Emerald Winton Blackwater Mackay Rockhampton Proserpine 5. Roadshow3: 6. Millmerran Toowoomba Dalby 7. St George Goondiwindi Roma Miles 33 Sample/Target groups Representation from all maternity care consumers and providers were sought. These included: „Mainstream‟ pregnant, or recently pregnant, women Indigenous pregnant, or recently pregnant, women „Special-focus‟ women (e.g. culturally and linguistically diverse women, women who experience perinatal loss, young women, women with low income, women with multiple births) Community and non-government organisations Maternity care providers and managers Community child and family health services General Practitioners (GPs) Retrieval and outreach health care professionals Aboriginal Medical Services (where appropriate) Resources used Factsheets: 2010 Road show and overview of QCMB Survey Website Birthplace Pregnancy book QCMB Consumer Leaflet QCMB Introductory Brochure HABIQ Book topic checklists HABIQ Pilot Survey QCMB Sign-up forms for consumers and carers/stakeholders QCMB Thank you cards Powerpoint presentation (electronic and via Flipchart) Methodology In response to local community needs, consultations occurred in a variety of different ways. Attempts were made to identify a local consumer „champion‟ through consumer networks (e.g., Maternity Coalition, Australian Breastfeeding Association) or local organisations (e.g., Playgroups, Child Care Centres, Community Child Health). These groups proved invaluable in the marketing of the consultations and advising on venue, caterers and other local requirements. In addition to conducting pre-organised consumer consultations, informal discussions were held with women in parks, coffee shops and supermarkets. Having two to three „out of towners‟ 34 wearing „Queensland Centre for Mothers & Babies‟ t-shirts with „www.havingababy.org.au‟ on the back prompted many interested responses and QCMB staff responded to this interest by striking up conversations, explaining the purpose of being in town, and enquiring about their own or their families experiences of maternity care. These impromptu consultations provided us with a rich mix of information from consumers who may not traditionally present to preorganised consultations. Consultations with maternity care providers were arranged through the local hospital, community child and family health centre and local medical centre/s. Hospital consultations were arranged to coincide with handovers between the morning and afternoon shift to maximise access to clinical midwives. Lunchtime was identified as the best time to try to see General Practitioners and Community Child health nurses, who either attended the hospital session or nominated an additional time and venue that suited the staff. Consumer consultations were held in a range of child friendly venues such as parks, to community halls, churches and government or non-government buildings. Information from the consultations were recorded by hand as field notes and transcribed onto a computer at the end of each day. Individual reports from each consultation were sent back to QCMB each evening to inform the development of activities such as the Having a Baby in Queensland (HABIQ) Survey, Website and Book. Data were analysed using thematic analysis and are presented under the following 12 categories. Perceived benefits of Birthing in a rural facilities Information sharing Transfer and referral Midwifery care Pregnancy care Labour and birth care Postnatal care Attitudes of staff Care for Aboriginal and Torres Strait Islander women Travelling away for birth Collaboration and integration of care Private facilities Results The following table provides a breakdown of consultations Consumer/stakeholder consultations Mainstream women „Special-focus‟ women Culturally & Linguistically Diverse Indigenous Young Men (fathers) Grandparents Stakeholders (e.g. ABA, SANDS, Maternity Coalition, doulas) Support Workers (including Indigenous) Expos – Cairns, Millmerran Shopping Centres – Mackay, Townsville TOTAL Carer consultations: Midwives Obstetricians: General Practitioners 37 285 23 21 20 8 6 40 29 120 55 605 86 156 11 24 35 Child Health Nurses Registered Nurses Enrolled Nurses Indigenous health workers Managers General health staff Specialists Allied Health RFDS Other (nurse educator etc) TOTAL 45 25 8 26 34 11 2 5 3 3 353 TOTAL consultations events: 123 TOTAL individuals consulted: 958 Findings Perceived benefits of birthing in a rural hospital Women reported: That they could often stay longer postnatally in rural and remote facilities compared to regional or urban hospitals. Women considered the care in rural facilities less “factory-like”. The care is seen as much more informal – visiting hours more flexible, sometimes husbands can stay over. Staff are seen as more supportive of breastfeeding and promoting close contact between the mother and her baby („they let me fall asleep with my baby‟) The food is fresh, not prepacked! More freedom to walk around with their babies, go outside, breath fresh air. Women reported being surprised when they or their friends birthed in regional facilities and told they were not „allowed‟ to take their baby outside or off the ward. In general, women reported that they felt supported by their community and care providers and valued being able to share information about being pregnant and caring for a newborn within their small community. However, other women felt they lacked confidentiality and were uncomfortable sharing information about themselves because they feared local gossip Pregnant women are known in the community and there is a general feeling that everyone helps new mothers– “they hand over baby stuff and say, come and drop by, I‟ve got a bassinet for you”. The reviewer reported: There are some rural facilities with a very active maternity workforce and this is evident in the experiences women have. The consultations in towns that had continuity of midwifery care models were well attended and women reported extremely high satisfaction with these services. In other services where more traditional, fragmented models were offered midwives appeared to be lack confidence and feared birth. Such attitudes in staff were reported by women who either reported dissatisfaction with the service in their home-town or had by-passed these systems and travelled away to give birth. There were some examples of models (e.g., Toowoomba) that provide support for private midwifery and private midwives in the community more explicitly. Toowoomba and Dalby both reported the existence of transfer policies and collaborative case review processes between hospital staff and private midwives. They were also actively preparing for the November rollout of MBS access to midwifery care and its potential impact on public health services. 36 Information Sharing Information sharing across and within agencies is variable, though generally limited. Women reported being frustrated when information was not shared between facilities. Some women reported having to have bloods retaken and commented on the waste of public money to do this (as well as the discomfort of having unnecessary painful procedures) because one provider did not share information (e.g., blood results) with another. The hand-held antenatal record (HHR) is not being used consistently by health care providers in rural or regional Queensland. One woman reported „the hospital midwives gave me one (a HHR) and when I gave it to my GP to fill out he tore it up in front of me!‟ Women who had access to the HHR highly valued it. The reviewer reported: The content of the discharge summaries is generally insufficient and could be easily improved. Largely the information provided consists of key medical information (e.g., mode of birth, date of birth, birth weight). Minimal information is provided about the woman‟s psycho-social situation, including EPDS scores, history of previous depression or other social risk factors. Consistency in the provision of discharge summaries is also problematic. Most of the public hospitals attempt to provide discharge summaries but this is generally only provided to GPs or community child health services, and not to non-government agencies (NGOs) such as Aboriginal Medical Services (AMSs) or Family Support services. This is problematic as it is these agencies that tend to provide care for some of the most socially disadvantaged women. The universal postnatal contact has funded midwifery positions in some communities. Many hospitals reported sending information through to the midwife providing the universal postnatal contact, but not the local child health service. This makes it difficult for child health services to continue care. Many public facilities provided discharge summaries/referrals for „high risk‟ women only. Child health services expressed a desire to have discharge summaries on all women. Private facilities provided no discharge summaries and were frequently criticised by health staff for not providing any information to community health, GPs or NGOs. Many health providers in rural areas reported not being aware that their clients had returned to their communities until they either drop in or they „see them at the shops‟ There is minimal evidence of case conferencing across agencies to support families with complex needs. Where case conferencing is implemented (e.g. between Mareeba hospital and the AMS), staff report these discussions are highly valuable and result in more women remaining engaged in the system and fewer women „falling between the cracks‟. The women reported Women who have previously had a stillborn baby or miscarriage(s) reported needing to re-tell each of their carers their maternity history because this information was not recorded on their hand held record. Not all women are being offered a copy of the hand held record when they surrender the original when admitted in labour. Many women were not aware that they were entitled to receive a copy. Furthermore, of those women who 37 were aware and wished to receive a copy, some were refused a copy when they requested it. Recommendations: Develop guidelines around comprehensive discharge summaries that are provided to all Community child health centres, GPs (where appropriate) and AMSs (as appropriate) for all women. Discussions with private facilities will be required to facilitate this within the private sector. Case conferencing should be established in all facilities and involve GPs, midwives, OBs child health nurses, allied health, AMS staff (where appropriate). All women should be offered a copy of their hand held records on discharge from maternity services. This is mentioned in the HHR brochure and should result in women asking for a copy. There needs to be a way of indicating previous perinatal loss on the hand held record eg use of a tear drop sticker used previously Transfer and Referral Women and staff reported: There are variations on what services use to guide referral of women to higher level services: some use locally developed protocols, others use the Australian College of Midwives Consultation and Referral Guidelines. For other women, the nature of the referral process is at the discretion of the obstetrician at the time. Many public hospitals insist on a referral from the GP to „book in‟. For example, in Hughenden women can self refer to the hospital for antenatal care. Women are required to travel to Townsville to birth and generally „book in‟ to one of the Townsville hospitals around 20 weeks. The Hughenden midwives are not able to provide the referral nor can the women self refer. Instead the woman must make an appointment to see the only GP in town, and pay a consultation fee to get the required referral. This results in inefficiencies of time and money for women and undermines the local midwifery staff. Palm Island women however, can be referred for booking in by the Palm Island midwife, to the same hospital in Townsville that the Hughenden women cannot. In some rural towns, the midwives are not able to order blood tests or scans and instead must refer the woman to the GP to do this. In other towns, midwives can use request forms as standing orders or pre-signed by the doctors. Nurses and midwives in some rural areas have reported resistance or refusal by GP‟s to sign pathology or ultrasound request forms. Facilities that did not have consistent medical backup appeared significantly disruptive for women and many women reported avoiding the local facility altogether because they could not rely on them being open if they needed them. Gestational age at booking in was inconsistent across facilities. Some facilities (e.g., Innisfail, St George) encourage booking in early (by the end of the first trimester) so that women could be offered psycho-social assessment (e.g., the „Safe Start program‟) and access midwifery care. Other facilities (e.g., Cairns) do not typically accept women until after 20 weeks gestation. In some cases, variability in timing of booking in visit appeared to be attributable to the preferences or practices of the local GP. Women and hospitals reported that some GPs fail to inform women they can receive pregnancy care at the local hospital. Rather women reporting being „told‟ to continue coming to the GP until as late as 30 weeks gestation. 38 There are resource implications if women book in early. For example, women who book into the hospital before 18 weeks may choose to have ultrasound scanning that would have otherwise been sought through the private sector. Similarly, if the 18 week scan diagnoses a fetal abnormality, counselling services would be provided through the public facility, again at additional cost. In many towns, ultrasound and pathology services are only provided by private services. This lack of publically funded services disadvantages women who are unable to afford private services. Some of these women report not having any tests or scans, while others report travelling (sometimes at their own expense) to bigger cities to access these services. There are also variations on how much women pay for maternity care. One woman reported not presenting to her GP for pregnancy care until after 20 weeks because she couldn‟t afford the consultation fee. Some GPs bulk-billed but most did not. Many women were not aware that they could receive maternity care at the local hospital and paid for care at the local GP. Some women reported high levels of dissatisfaction with processes when babies are transferred for higher level care. For example, one woman we spoke with birthed twins in a rural facility at 33 weeks gestation. Her babies were transferred by RDFS but the mother reported not being „allowed‟ to accompany them. Her husband reported being very stressed driving her to the regional town a few hours after birth after neither had slept all night. When they arrived at the referral hospital they were told the mother could not have a bed as she was „not admitted‟. As she was initially meant to be a private patient she was admitted to the private hospital but had to travel by taxi each day to the public hospital to see her babies, as her husband had to take the car home to care for his two other daughters and manage his cattle station. Recommendations: Support early booking in to hospitals to give women access to psycho-social assessment and access to midwifery care. Women should be able to self refer to hospitals In rural areas nurses and midwives should be supported to order bloods, tests and scans AND refer women directly to birthing facilities. Develop strategies to ensure rural women are not financially disadvantaged for routine components of care (blood tests and scans). Standardise the use of Consultation and Referral Guidelines such as the ACM ones (though new ones are being developed through NHMRC so maybe wait for those ones to be developed before making a policy). Midwifery care The women and staff reported Some facilities had not heard of the Rural Maternity Initiative (RMI) or thought that was only for facilities that provided birthing services. There are many opportunities for midwifery care to be strengthened during pregnancy and post birth in non-birthing facilities Resistance or a lack of interest from middle managers and DONs were often reported to be barriers to the implementation of innovative midwifery models. The most noted comment from people in these positions was that “midwives are required for general nursing duties”. In some rural/regional facilities doctors are called in to be present at all births, a practice that differs from the practice in other rural or urban centres. Some 39 women/midwives/doctors raised concerns that this practice was unnecessary, and was an inappropriate use of resources. Private women also lack access to information around pain relief in labour etc. Some private obstetricians employ midwives in their rooms, and women receiving care in this way report it to be highly valuable. The trend towards private obstetricians employing midwives can be expected to increase following rollout of the MBS rebate for midwifery care from November 1st. Some hospital staff reported that some GPs tend to act as the gatekeeper of maternity care, and appear to have a lot of influence on women‟s access to midwifery care and other services. Women frequently reported not being told by GPs that they can access midwifery support at the local hospital, or that there is a caseload model available at the next town. We were unable to ascertain whether GPs lack knowledge themselves about these services, lack time to share this information with women, or actively choose not to share this information with women. Early discharge programs are largely unavailable to women in rural and remote areas. Women either stay in the hospital until four or five days post partum or they are discharged home without any professional support. In the communities that did not have well resourced child and family health services, women reported this was particularly stressful, particularly women having their first baby and women living out of town on stations. Many facilities supported the implementation of midwifery and caseload models of care but said they could not implement such models themselves within existing budgets. This contrasts with other facilities (e.g., the Mater Hospital) who have implemented such models without additional funding. Services for women in rural and regional centres where continuity of midwifery care was available were highly praised and highly valued. These women reported getting the „Rolls Royce‟ treatment, in contrast to what they believed was the lower quality, more fragmented models that most women experienced. The reviewer reported Rural and remote women are significantly disadvantaged with regards to a lack of access to midwifery care and the social and emotional assessment and support that usually accompanies that care. In remote areas, the RFDS provides outreach services of doctors who provide pregnancy care but this appeared to be very clinical in nature with only physical checks offered. The RFDS also provides outreach child and family health nursing services that provide some support in the postnatal period, though this seems focused on the child and also limited to „baby weighs‟ and immunisation services. The RFDS currently do not provide any midwifery outreach service with the exception of Cairns but these midwives are provided from the hospital, not RFDS. Rural women are even more disadvantaged because they do not receive RFDS services and may only have the option of one GP to provide all care through pregnancy and the postnatal period. There are some cases of innovative models of midwifery care. For example, Hughenden Hospital have recently commenced offering women care from a known midwife during pregnancy and in the postnatal period, regardless of where they go to have their baby (e.g., public or private facilities). . Some facilities with RMI funding clearly did not have the infrastructure, leadership or stability to implement new midwifery models effectively. Some project officers did not have the necessary skills or experience to effectively implement midwifery models. 40 Whilst it is important to acknowledge the difficulties managers have in filling nursing positions, midwifery care will continue to be compromised when midwives are rostered on as general nurses. For many years midwives have been restricted to bio-physical care in the antenatal, birth and immediate (2-5 days) postnatal period. Currently, service planning does not appear to take full advantage of midwives‟ capacity to effectively support women‟s broader social and emotional wellbeing across the full perinatal period. Many of the midwives who were not involved in birthing appeared to have negative perceptions of birthing women – one midwife reported that „women need to know that birth is dangerous‟. The confidence and knowledge of many of the midwives in the rural facilities would benefit from further development. Recommendations: All women in Queensland should have access to midwifery care – this could be through the local hospital, outreach services or telephone/video conferencing support. Include continuity of care models for rural women who must travel away to birth (eg based on the Hughenden model). This involves share-care with the regional hospital where local care is provided by a known midwife and is then referred to either a private doctor or a known midwife at the referral hospital. Postnatal care could then be continued through the same midwife back at the local service. Rural midwives should be offered professional development and up-skilling through programs such as MIDUS through CRANAplus. Senior midwives with experience in implementing midwifery models are necessary to assist facilities funded through the RMI. This needs to be onsite initially (through RMI funding) but also continued through „Clinical Midwifery Consultant‟ type positions who would be located in regional centres such as Townsville or Mackay but offer clinical leadership and support across the district. Regional hospitals should become more involved in the support of rural midwives or the provision of outreach midwifery care to rural and remote centres. Cairns currently provides this service to some remote communities in Cape York, whereas most referral facilities do not. Regional staff could also provide mentoring or telephone support to smaller facilities. There is also the opportunity to offer women care by a known midwife when they travel into the regional centre to await birth. This model is currently being offered in the Northern Territory for remote Aboriginal women and is being positively evaluated. Where midwifery care is available community marketing and promotion of the service (both locally and state wide) would improve access for women in rural areas. Develop guidelines to introduce caseload models within existing budgets. It is timely for Queensland Health to consider the potential increase of demand on midwifery st care post Nov 1 , given the rollout of the MBS rebates for midwifery care at this time. It is believed that private women currently accessing care from a private obstetrician because of continuity may change to access private midwifery care – this care will result in an increase in public hospital births, and will put increased demand on public facilities Pregnancy care The women and staff reported: There is inconsistent ordering of antenatal tests based on individual doctors, with women and midwives reporting that some GPs do not offer women all the tests Queensland Health recommends. Similarly there is duplication of tests when 41 public facilities repeat blood tests when pathology results are not provided by the private provider. Very few rural and remote women have access to ultrasound scan for nuchal fold measurement. This was mainly due to the lack of scanning services locally and the costs incurred to travel to the regional facility to access it. Many women, however, were not told about the test. There appeared to be an assumption on behalf of care providers that difficulties for women in accessing the test precluded providing information about the test. There is a lack of consistency in the availability and quality of antenatal classes across Queensland. Many women were not offered any form of structured antenatal education. Others accessed education but complained they were „old fashioned‟ and not useful. Women who were offered a tour of the maternity ward highly valued this opportunity to know where they would be having their baby. Some of the practice nurses (who are not midwives) are providing pregnancy care as per Medicare Item 16400 (“Antenatal Service Provided by a Nurse, Midwife or a Registered Aboriginal Health Worker”). Many of these nurses expressed a lack of confidence providing this service care due to lacking the skills and knowledge to do so properly. The provision and promotion of local midwifery services would go some way to addressing this. The reviewer reported: Women receive pregnancy care from a range of providers including: public midwifery via the hospital; GP/RFDS doctor with travel to the regional facility for scans and birth; shared care between the local GP and the local hospital; and, shared care between the local GP/midwife and the private obstetrician at the regional facility. Communication between these providers and facilities is generally poor (though may improve following the distribution of the statewide Pregnancy Health Record). There is a lack of consistency in the use of psycho-social and depression screening tools (including the EPDS) across rural areas. Some women are not being offered the EPDS at all, and many women are being offered no social and emotional assessment or support during pregnancy or early parenting. Some sites are yet to implement the Safe Start Program. Other sites have implemented the Safe Start Program but are not universally applying it as it is designed to be used. Recommendations: Facilities should be supported to fully implement Safe Start and ensure all women are offered psycho-social assessment. Antenatal education guidelines should be developed to support evidenced based and effective programs are available to all women. Opportunities for outreach ultrasound facilities should be explored with private providers. Labour and birth care The women and staff reported: There were many requests from women and midwives to have a large bath or pool available for either labouring and/or birth. Very few rural facilities offer women water immersion as a form of non-pharmacological pain relief, despite good evidence to support its use. Concern among many doctors and some midwives related to the use of water immersion during labour was due to beliefs that 42 offering water immersion for labour may lead women to want water immersion for birth. Rockhampton is currently designing new birthing rooms and it was reported that „the doctors are not allowing baths to be included‟. Attitudes of midwifery staff, both positive and negative, was the most commonly mentioned aspect of care in labour and birth mentioned by women (see Section 8 below). Most women accepted that there were limited services in rural and remote areas. Where birthing services were provided, the inconsistencies in medical support were problematic and many women (e.g., in towns like Charters Towers) were unaware that the local hospital provided low risk birthing services. Caseload midwifery models, such as Mareeba and Goondiwindi, were highly valued by both women and midwives. Women who experienced care from a primary midwife across the perinatal spectrum praised the dedication of the midwives and reported high levels of satisfaction in all aspects of their care. They reported the care was „individualized‟, „professional‟, „rewarding‟ and „empowering‟. Most facilities did not believe it would ever be possible to offer birthing services based on midwifery care alone (ie without the presence of medical backup). Staff reported that without medical backup and the capacity of the service to deliver babies by caesarean sections, facilities could not allow women to birth there. Lack of provision of VBAC in low risk facilities (where OT facilities are available) is resulting in many women choosing to have an elective Caesarean Section because this was available in their local facility, and negated the need to travel to a regional hospital to attempt VBAC. The reason given to women is lack of pathology services – however elective caesarean sections in the local facilities are possible. (Reviewers comment: It could be argued that recurrent uterine scarring through repeat c/sections carry a much greater risk to the woman than providing VBAC services in low risk facilities). Some facilities do routine CTGs on all new admissions, despite current evidence and statewide policies to the contrary – midwives appeared to support this practice and reported this was because they are „in the country, not the city‟. Midwives reported that some doctors (both GPs and QHealth doctors) commonly undermined their attempts to practice using evidence. For example one midwife told of a local doctor who does not do fetal hearts in second stage of labour – when the midwives try to (to listen to the fetal heart) he says to the midwives, in front of the women, „don‟t do that‟ and says to the women „they get that out of nursing textbooks‟. There were other reports of doctors rupturing membranes in their rooms and sending the women to the hospital and other doctors doing unnecessary interventions such as social inductions at 37 weeks. Women reported being told a range of information around the „safe‟ number of Caesarean sections they could have. One woman said her doctor told her she couldn‟t have more than two Caesarean sections. Another woman was told „none after 3‟ whilst a third woman was having her fourth caesarean section at her local low risk facility and when asked what information she was provided about her impending operation, she replied „none‟. Many women reported their wish to have their partners stay with them in hospital. This was the most important aspect of care. Most places did not allow partners to stay over, with shared rooms being given as the most common reason. In the facilities that could offer partners overnight accommodation, this was highly valued by women and their partners. The reviewer reported: Some facilities do not practice evidence based care. For example in one facility, midwives are doing second hourly Vaginal Examinations, and two midwives 43 must be on site for all women once they are 5cms dilated. The staff reported that this was at the insistence of the local GPs in response to two adverse events that occurred the year before. However there is no evidence that either of these two policies will reduce the likelihood of another adverse event and staff could not explain the rationale behind the practice other than to say the „doctors were insisting‟. Recommendations: VBAC should be offered to appropriately assessed women in low risk facilities. Birthing services should be offered/tested in primary care units (with no available surgical services) supported by established transfer and referral pathways. Water immersion should be offered to women in labour, particularly in new or renovated facilities. Facilities should be supported to develop protocols based on evidence. For example, two hour Vaginal Examinations is not supported by the evidence. Upskilling should be provided for rural midwives through short courses (eg CRANAplus MIDUS, MaCRM, ALSO). Postnatal care The women and staff reported: Rural facilities are generally much more flexible with how long women can stay in hospital after birth compared to the larger regional facilities. Midwives reported the women can stay „as long as they want‟ – they believe if a bed is empty it costs the service no extra to have a postnatal woman occupy it. Some of the postnatal beds were poorly positioned (eg close to the „nurses‟ station‟ or alongside mental health patients). In these instances women and staff requested capital funding to provide more appropriate postnatal space for women. Women reported inconsistencies across facilities regarding the level of freedom they had to take their babies out of the ward area. In regional facilities, staff did not permit the women to walk around hospital gardens or take baby out of hospital building. Women who birth away at the regional facilities have the option of coming back to the local hospital for postnatal care but most women do not take this option. This is because many of the local facilities don‟t promote the service or women prefer to go home. Unfortunately many women go home with minimal support and then struggle with breastfeeding and parenting skills. Many women reported that they did not have a 6-week check, with some women saying that they did not know they should have had one. Others went to their GPs but reported that sometimes this was not appropriate due to gender and other issues. Of the women who went to the GP for postnatal support they reported this was purely physical with no opportunity to discuss social or emotional needs. Many women reported it was „not the doctors job‟ to listen to their problems. When asked whose „job‟ it was, some replied their husbands, and others reported their midwife or child health nurse filled this role. Child health services are extremely variable across the state with some services reporting that they see women „weekly for eight weeks‟ and other women being told on discharge from the hospital to book in for their 8 week immunisation as soon as they get home as the waiting list is eight weeks long. 44 These women therefore are not offered professional help around breastfeeding or sleep and settling issues in the first weeks of parenting. Many child health services report no increase in human resources in many years, in spite of increasing population numbers and the greatly expanding role of the child and family health nurse. Parent/mothers groups that are offered are usually structured with „special‟ topics each week. Women reported that often the topic is not relevant to them at that time (eg introduction to solids when their baby is 2 months old) and requested more flexible groups or topics that are more age appropriate. Psycho-social assessment is not universally offered to women in the postnatal period. Immunisation services are provided by some child health services but not others. In child health services where immunisations were offered, both the women and the child health nurses spoke of the benefits of having one provider provide immunisation as well as checking the infant‟s development and supporting the parenting skills and social and emotional well being of the mother and wider family. Practice nurses in GP clinics frequently commented on the lack of postnatal services for mothers, particularly in the Central West district. One nurse (who was not a midwife or a child health nurse) reported „they come in very distressed – I try to help them but I only really can do that as a mother myself, not as a health professional‟. This nurse was not aware of resources such as 13Health or the Raising Children Website. There is a common perception that rural towns are supposed to be friendly close communities but many women and service providers reported some women are very socially isolated. Women such as miners‟ wives and station-workers‟ („ringers‟) wives had a lot of problems meeting other mothers and receiving social support. Some of these women are quiet transitory due to their partners work. 13Health was reported to be widely used by women and families. Some women said it was very useful, others said the Brisbane based nurses did not understand the issues for rural and remote women. Others said it was too medically focus and they wanted to talk to someone about breastfeeding and sleep and settling. Some women rang at night and said there were no child health nurses available, only nurses wanting to know if the child was sick. . Women and health staff reported the widespread lack of breastfeeding support for women in most rural areas. There are very few lactation consultants or breastfeeding counsellors available. Women, midwives and child health nurses believed that many women give up breastfeeding in the first few weeks and months of life because they cannot access this type of support. There was also no evidence of Family Support funding in many rural facilities. This is in spite of high levels of disadvantage in some areas (eg Tara) where many families live in rural blocks with no town water or electricity. Local child health services reported they were not staffed adequately to offer support to these vulnerable families, even though many of the families are known to child protection agencies. The reviewer reported: Postnatal care is another area where rural and remote women are disadvantaged. The mean discharge time at Townsville hospital is 1.6 days for women having a vaginal birth and 2.3 days for women experiencing caesarean sections. These women are sent home to their home towns or properties, often without the local hospital or child health centre being informed. 45 Universal postnatal contact funding appears to be working very well in some areas and not at all in others. In some places the funding has gone to the hospital and the midwives provide the service, other places a midwife sits in the child health facility and others again where midwives and child health nurses work in collaborative models. In some consultations, child health nurses reported that the midwives were supposed to be seeing women until 6 weeks but they didn‟t have the time or the skills and the child health staff felt like they were being excluded and found it hard to engage the women after 6 weeks Parent/mothers groups are not universally available to rural or remote women and are frequently requested by women who cannot access them (and highly valued by women who could). The Child Health services who did offer them tended to offer them after 2-3 months of age, despite good evidence that women need support the most in the first few months of parenthood. There appeared to be little opportunity for women to talk to other women in postnatal wards across Queensland. In the larger regional hospitals women lie in bed behind drawn curtains. Models to promote mobilization and peer support could be encouraged by communal dining rooms. This is successfully done in interstate maternity facilities such as the Royal Prince Alfred in Sydney. Developmental assessment checks are not standardized and the checklist used on the QHealth forms is not known to be evidence-based (ie minimum specificity and sensitivity of 70% as recommended by NHMRC). Very few of the professional staff knew about developmental assessment tools that incorporate parent-elicited concerns eg PEDS or Ages and Stages. These tools are well known and used in all other states and territories in Australia The quality of postnatal care varied – few mothers, child health nurses or midwives reported discussing concepts such as infant attachment (using tools such as Circle of Security etc), infant cues and communication methods. Rather, in general the focus was on traditional weighing, measuring, and developmental checks. Some of the child health nurses reported that they had not had the opportunity to undertake professional development updates on child health topics. Others believed the current child health courses available in Queensland (graduate certificate in child and youth health) did not suitably prepare nurses and midwives to practice effectively. Recommendations: A formula or index needs to be established to determine what is the appropriate level of service per birthing population weighted by vulnerability and isolation. Parenting groups such as the EarlyBird program currently offered to women in NSW should be made available to women in Queensland. This program is offered to women from birth to 8 weeks, is unstructured and promotes peer support and knowledge sharing amongst women. Psycho-social assessment (and the EPDS) should be offered to all women antenatally and at 6 weeks post-birth as per national (beyondblue) guidelines. The educational preparation of child health nurses requires review. Communal dining rooms should be provided in postnatal wards to encourage women to get out of bed and talk to other women. 13Health should be staffed by qualified child health nurses 24/7 Support from Lactation Consultants via videoconferencing should be trialled Child health and midwifery services should offer education around attachment, infant cues, influences on stress on the developing fetus and infant etc. 46 Attitudes of staff The women and staff reported: Poor staff attitudes were mentioned in all consultations with women across all towns. Women referred to the „lottery‟ of whether they would get one of the „nice‟ or „good ones‟. In one small town we were told of the „dragon nurse who bragged that people are scared of her‟. Another woman told us the midwife made her feel so inadequate when she asked questions in early pregnancy that she did not return, had no antenatal care and birthed in New South Wales where she had family support. In another town women reported receiving a very unsatisfactory level of service through the town‟s only GP who had been there a long time and was very „old fashioned‟. One father described a midwife who „went off her tits‟ when his labouring wife with 33 week twins presented at the local facility. This facility provided low risk birthing services and was staffed by midwives and had medical back up available. Many women reported conflicting advice from the midwives. Some midwives were considered helpful in providing information, others seemed to explicitly avoid providing information/options/explanations or enforcing their own value systems. The reviewer reported: Staff at the facilities who did not provide birthing services were very fearful of labouring women „appearing‟ at their hospital. They showed no empathy for women who either avoided transfer out for birth or who presented in premature labour. These women reported being „treated like children‟, being shown no respect or being victims of racism and prejudice (see Section 9 below). Recommendations: Strategies should be developed to address poor staff attitudes Care for Aboriginal and Torres Strait Islander women and their families The women and staff reported: Lack of models where Aboriginal women can be cared for by AMS staff in labour and birth Indigenous specific Medicare items (eg children‟s checks, adult checks, antenatal checks and postnatal checks) are perceived by some mainstream services to be a „revenue raising activity‟ for Aboriginal medical services. Some hospital staff believe that the AMS „keeps‟ women going to the AMS and not the hospital because of this. This leads to women not being referred to the hospital for booking in and reduced opportunities for Aboriginal women to access midwifery care when this is not available at the AMS. There is also concern that some women are being over serviced because of „double dipping‟ with different services doing the same activity. Most Aboriginal women do not appear to get offered the hand held records (HHR) – AMS staff believed the hospital did not give Indigenous women the hand held record– though one AMS midwife admitted she had a „drawer full of them‟ but did not give them out. None of the Aboriginal women we spoke to had been offered the HHR. Aboriginal women are commonly excluded from continuity of care or midwifery models because of their risk status. This further excludes them from the 47 benefits of developing relationships and trust with providers and experiencing intrapartum care from a known provider. Women with medical complications during pregnancy must travel to the regional centre for obstetric care. One obstetrician in Rockhampton highly valued his previous role of travelling monthly to a remote Aboriginal community to provide outreach care. He believed it provided better care to women but also gave him the opportunity to learn from and understand the wider social and environmental issues experienced by the women under his care. There were many reports of Racism in QHealth facilities. There was a common perception by Aboriginal people that mainstream health staff look down on the Aboriginal women. The Aboriginal women recognise this and reported dissatisfaction in going to the hospital. Similarly non-Indigenous families described perceived inequities between what they were offered compared to Aboriginal women and families. Several women and men reported „if we were black we would have been flown out in a helicopter‟ or „the Aboriginal women get five star hostel services, but we get don‟t get anything‟. Aboriginal services and women reported that mainstream facilities just didn‟t understand or respect the different ways Aboriginal people do things or the environment to which they are being discharged. For example, in Rockhampton Aboriginal women who live at Woorabinda can get discharged on a Friday night with no transport arranged to take them home and no communication with the Woorabinda health centre of their impending arrival back at the community. Aboriginal women repeatedly reported their distress of having to travel away to give birth and their desire to birth in their local communities. Barriers to birthing in poorly resourced rural and remote areas were noted by QCMB staff. However, there are several sites in Queensland that would be appropriate „test‟ sites for a „birthing on country‟ project. Accommodation is a significant issue for Aboriginal women – there are some good examples of Aboriginal hostels (eg Mookai Rosie‟s in Cairns) but in many other regional centres the women are not well supported when waiting in the regional towns to have their babies. This is not only an issue for Aboriginal women but the Aboriginal population is more significantly affected. See Section 10 below for more details. Women who „hide‟ from the system and end up birthing at the local birth centre are commonly still transferred in after birth, even in the absence of complications or risk factors. This is perceived by the Aboriginal women as „punishment‟ for not relocating to the regional centres when they were supposed to. The reviewer reported: Aboriginal women continue to be the most disadvantaged group of women accessing maternity care. There are increasing opportunities for national programs being made available and taken up by Aboriginal Medical Services (AMSs) but this does not include care in labour or birth and there is little communication between the services offering these nationally funded programs and the local public health facility. Nationally models exist where staff from Aboriginal medical services have developed memorandum of understanding (MOUs) with the local hospital where AMS midwives can accompany Aboriginal women into the hospital to labour and birth. (eg Congress Alukura in Alice Springs). This model is not currently available in any Queensland facility. 48 Recommendations: Programs should be developed that provide continuity of midwifery care models that include intrapartum care (eg Indigenous specific Midwifery Group Practices) MOUs should be established between AMSs and public facilities to allow Aboriginal women to receive intrapartum care from a known AMS-employed midwife. Strategies should be developed that promote communication between AMS staff and QHealth maternity services. Racism in QHealth facilities should be addressed through Cultural Competence and Racism awareness education programs (eg Dealing with Difference). Services should explore opportunities to provide outreach care outside the hospital in venues or facilities the women find more acceptable. Services should explore avenues of federal funding to employ Aboriginal health workers, and liaison officers to support Indigenous clients. Opportunities should be explored to support Indigenous doulas. Discharge planning should be done by people who understand where women are being discharged to. More thoughtful discharge planning is required. Case load models should include women of all risk levels. Continuity of care models should also include dedicated medical staff on each team. Birthing on Country projects should be tested and rigorously evaluated. There should be a policy that women and babies born in small (non birthing) facilities who do not have medical indications should not have to be transferred to the regional facility routinely. Travelling away for birth The women and staff reported: Accommodation availability is rare and costs are high for rural women and their families who are required to transfer to larger centres to have their babies. These women are entitled to PATS (Patient Assisted Travel Scheme) funding but the difference in the actual cost of travelling away to birth and the reimbursement received is significant. There were also variations on who could (or would) assist women to find and secure accommodation. Some hospital midwives offered this service; at other facilities women had to arrange their own accommodation. One woman reported having to change motels six times in the four weeks she was in Cairns because she could not find a place that had vacancies for the whole time she needed it (and she didn‟t know how long she needed it and many places wanted definite dates). There were frequent requests for a government sponsored maternity specific hostel in each of the larger regional and urban cities that women and their families could stay for at a subsidised price. Women resent when the staff “make you go to XXXX” and “get up you” if they choose to stay at home or go home while at temporary accommodation. The women also reported being legally threatened to travel away to have baby – “I‟ve been told to go to Longreach at 37 weeks otherwise you get fined”. Staff believe the women were being offered various „incentives‟ (seen by some women as „punishment‟ if they don‟t take the incentive) to leave town. For example, in Barcaldine, women are told if they go to Longreach (their local referral facility that is only 110 kms away) by 37 weeks they get free accommodation, if they go after 37 weeks they have to pay. Many women are expected to move to the regional town at 36-37 weeks even when the town was less than one hour away (particularly in Central District – ie Blackwater to Emerald, 70kms). 49 The reviewer reported: Women are being sent out of their home towns at varying times between 34 – 38 weeks gestation. The gestation point at which they are sent appears to be provider-dependent with the most disadvantaged women being sent by facilities who don‟t have midwifery staff (e.g. Richmond). The nursing staff instruct women that they must go as early as 34 weeks when there are no clinical indications for early transfer. These decisions appear to be driven by fear. Nurses with no midwifery qualifications report being stressed and frustrated when women refuse to leave town at 34 weeks gestation. Evidenced based testing such as fetal fibronectin does not appear to be used in rural facilities in Queensland. When used on women less than 37 weeks gestation, a negative result is highly predictive that the woman will not go into labour within the next seven days. Recommendations: Guidelines should be developed regarding what gestation women should routinely transfer to the regional town (eg 38 weeks unless clinically indicated). Non-midwives should be offered professional development programs such as the Maternity Emergency Course for Non-Midwives offered through CRANAplus. Fetal Fibronectin testing should be made more available to rural facilities. Collaboration and integration of care for rural and remote women The reviewer reported: Relationships between the various agencies and workforces were extremely variable. Generally speaking relationships between midwifery and medical staff were good in the rural areas. However there were small isolated examples of problems between midwives, GPs and other medical staff. Women are aware of these conflicts, making comments like “[doctor x] is okay but the midwives don‟t like him‟. Or „some of the doctors are so rude to the midwives, I felt really humiliated for them‟. One GP observed the main aspect of collaboration was the building of a relationship with the midwives – „you can‟t trust someone who you don‟t know‟. He believed all of the problems with his local hospital were with new midwives who didn‟t know the GPs. Another major problem that was perceived by the midwives is the inconsistency in ideas, opinions and attitudes of different obstetricians working within the same facility, and the blatant dismissal by some doctors of clinical guidelines. Some rural towns providers and women reported positive working relationships between GPs and midwives owing to a shared care model where each workforce genuinely respected each other‟s contribution to the woman‟s care and the right of woman to choose which model of care best suited her. Private Facilities The women and staff reported Many of the private facilities reported activities that are not supported by evidence, particularly around breastfeeding. Midwives in one private hospital midwives reported that they were very „women centred‟ because they took the babies off the women at night („they need all the rest they can get. They will learn soon enough when they get home‟). They also offered to give their babies formula to give the women a rest. These practices are not supported by state, national or international guidelines. 50 There were reports by women of private facilities giving formula without consent. One woman travelled to the Mater in Rockhampton to have her first baby (she said her GP recommended this because of her age, which was 38). She reported that her wishes as a mother were not respected - her baby was given formula and pacifier without her consent, the first bath was done without her knowledge, and she and other women were not woken to feed their babies despite requesting that they would be. Other mothers reported midwives „insisting‟ to remove baby from mother‟s room; or made woman feel inadequate. One woman said „a midwife said “your baby has flaky skin because your placenta was inadequate” and [to the baby after a breastfeed] “that‟s all your mother has got for you”. Many women in rural towns who were booked in to birth at the regional facility reported not having access to information both antenatally and postnatally. Access to information was generally insufficient for woman accessing both private and public maternity care. However, for private women this was reported to be a much bigger issue. There was minimal use of hand held records by private health care providers. Many private health staff said the women didn‟t want them, but most women we spoke to did not know they could have them and when we discussed what they were, they believed they would have been very useful. Women who accessed private care by medical practitioners (GPs or private obstetricians) reported the information they received was inconsistent or not provided. Most were not satisfied with the information they received and they often had to ask for more information or access it through other avenues such as books or the internet. Most women reported that GPs did not provide any information to women at their visits. When we asked GPs or their practice nurses to show us what information they gave to women on the first visit, the majority had nothing to show us, or they pulled out a folder with a collection of very old brochures or typed A4 information sheets. Some women reported that the GPs assumed the women did not need antenatal support/information for subsequent births. As one woman said “the doctor said „well, you‟ve had one before, you know what to do‟. Other women spoke highly of their service and relationship with their GP. Some women had known their GP for many years and valued the personal relationship they had with them and the knowledge that they would continue to care for their babies as they grew up. Women told us they choose to go private for the following reasons: Their GPs recommended it Because they believed it would be better care They had private health insurance and they may as well use it on something because they don‟t use it for much else. Because that is „what you do‟ Because they wanted to know the person who delivered their baby Because they didn‟t trust the local public hospital Because of confidentiality issues of being known in a small town and going through the local hospital Because they wanted control over induction/caesarean Because they wanted to choose their care provider Potential Future Collaborative Projects with QCMB Postnatal support How information is shared between stakeholders/how to engage private providers. 51 How to implement midwifery models that build on resources already developed by OCNO How we can support the MANY women who have unresolved birth issues. Explore or evaluate models where private obstetricians provide midwifery care such as the NKC Obstetric Service in Cairns. Developing capacity in consumers to fulfil their role as consumer representatives. Determine a formula of staff to client ratio of child health services weighted by vulnerability. Test an Indigenous case-load model where AMS midwives take AMS women to the hospital for labour and birth. Base this on the Alukura model in Alice Springs. The Rural Birth Index. Test a model of outreach midwifery support through video conferencing. Potential consequences of improved access to services for women Once private women are aware of the outcomes of midwifery care there could be increased demand on already under-resourced midwifery models. This is currently seen in the high demand on Birth Centre and other midwifery models as “word spreads” of the women‟s‟ experiences of midwifery care. This in turn will further disadvantage vulnerable women as caseload allocations get booked out before 12 weeks and vulnerable women tend not to access antenatal care early on in their pregnancy. Summary Women living in rural and remote areas continue to be significantly disadvantaged compared to their urban counterparts in all aspects of maternity care. Women in these areas do recognise and appreciate the benefits of birthing at rural facilities and some rural facilities are balancing the provision of safe care with the provision of care that is aligned with women‟s needs and preferences. In towns where women were able to access midwifery care there was much greater satisfaction with the service. Women who were receiving postnatal care from the child health nurses, GPs and/or local midwives were very grateful for the service and felt that having access to these services made a significant difference for them in their transition to parenthood (at all levels: physically, socially and emotionally). In response to this situation, access to midwifery care and postnatal support (both professional and peer) are areas requiring urgent attention at a facility and State-wide level. The Queensland Centre for Mothers and Babies and many of the stakeholders we consulted recognise the significant attempts Queensland Health has made to improve care for women in rural and remote areas through initiatives such as the Universal Postnatal Contact Visit and the Rural Maternity Initiative Funding. These initiatives can be further enhanced by engaging the support of regional referral centres and the provision of clinical leadership positions such as regional Clinical Midwifery Consultants. 52
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