West Midlands Maternity and Children s Strategic Clinical Network Maternity Bereavement Services Audit Alison Davies, Quality Improvement Lead March 2015
Contents Page Background 3 Aim 3 Approach 3 Audit Results 4 Introduction and overview 4 Section 1: Training and staff support 5 Section 2: Labour and after birth 8 Section 3: Communications & Arrangements 9 Section 4: Postnatal and onwards, including process and review 13 Additional areas of discussion 15 Conclusion 15 Further Actions 16 List of Figures Fig1: CTG audit submissions received 3 3 Fig 2: Bereavement Lead meeting attendance 4 4 Fig 3: SANDS audit tool completion 5 5 Fig 4: Areas of good practice and improvement as highlighted by the SANDS tool 5 5 Fig 5: SANDS bereavement standard 1.2 p6 6 Fig 6: Training identified and comments received 7 Fig 7: How care of the caregiver is managed within West Midlands maternity units 7 7 Fig 8: SANDS Bereavement Standards 6.1 7.2 p9 9 Fig 9: SANDS bereavement standards 4.1 5.1 p10 10 Fig 10: SANDS bereavement standards 10.1 11.12 p11 11 Fig 11: SANDS bereavement standards 9.1 9.7 p12 12 Fig 12: Locations of post mortem results meetings p13 13 Fig 13: SANDS bereavement standards 12.4 18.2 p14 14 Fig 14: Additional discussion information p15 15
Background The West Midlands Strategic Clinical Network highlighted a number of areas for attention in maternity and newborn services, driven from both the work towards a stillbirth national care bundle; and also from the outputs of an SCN Maternity Gap Analysis project during 2014. During the Maternity Gap Analysis, the SCN interviewed a number of bereaved parents, who had suffered a loss within the last 5 years, either through stillbirth or early neonatal death; and whose care was managed within a West Midlands unit. This involvement of parents highlighted an apparent variation in the provision of dedicated bereavement services across the various units. As such, one of the recommendations of the gap analysis was for the SCN to complete a short and concise scoping exercise of bereavement care, by April 2015. Aim The aim of this work was to explore the provision of bereavement services across the West Midlands; exploring variation and exposing both areas of good practice and opportunities for development. The purpose of this report is to provide intelligence to Bereavement Leads, Heads of Midwifery and Operational Delivery Networks to enable them to identify gaps in service provision and best practice which may be appropriate for spread. Approach Utilising standards taken from the SANDS bereavement audit tool 2011, a regional audit was designed and distributed to all Bereavement Leads for completion. Audit submissions were received from the following organisations listed within Figure 1, by Operational Delivery network geography. These organisations are abbreviated, as indicated, later in this report. Fig1: CTG audit submissions received Southern West Midlands Maternity & Newborn Network (SWMMNN) Heart of England Foundation Trust (HEFT) Wye Valley Hospital (WV) Worcestershire Acute (WA) Sandwell and West Birmingham (SWBH) Birmingham Women's Hospital (BWH) Staffordshire, Shropshire & Black Country Maternity & Newborn Network (SSBCMNN) Royal Wolverhampton Hospital (RWH) Dudley Group of Hospitals (DGOH) Shrewsbury & Telford Hospitals (SATH) University Hospital of North Midlands (UHNM) Central Newborn Network (CNN) University Hospital of Coventry & Warwick (UHCW)
George Eliot Hospital (GEH) Queens Hospital, Burton (QHB) South Warwickshire Hospital (SWar) A total of 13 full submissions were received, with 1 omission within the timescale (Walsall Healthcare Trust). Results from the audit were presented and discussed at a Bereavement Leads meeting on 24 th February 2015. The meeting was attended by 11 of the 14 West Midlands Trusts (see Figure 2), along with a SANDS representative, 4 bereaved parents and representatives from the SCN and all 3 operational delivery networks. Fig 2: Bereavement Lead meeting attendance SWMMNN 5/5 Heart of England Foundation Trust Wye Valley Hospital Worcestershire Acute Sandwell and West Birmingham Birmingham Women's Hospital SSBCMNN 3/5 Royal Wolverhampton Hospital Dudley Group of Hospitals Shrewsbury & Telford Hospitals University Hospital of North Midlands Walsall Healthcare Trust CNN 3/4 University Hospital of Coventry & Warwick George Eliot Hospital Burton Hospital South Warwickshire Hospital The meeting gave opportunity for further detail to be gained in relation to the areas investigated under the audit, for areas of best practice to be shared and for an action plan to be created for continuing improvement as a group. Further details on this can be found on page 16 of this report. Audit Results Results for the high level audit are detailed below: Introduction and overview: The SCN sought to understand how many units had already completed the SANDS bereavement audit tool, and if they had how recently this had been completed and what had been learnt from it. As can be seen in Figure 3, 38% of the units have completed the full SANDS audit, one further unit who selected no commented that
they were currently in the process of completing; and 2 further units had completed sections of it but on an informal basis. Fig 3: SANDS audit tool completion The 5 units that had completed the SANDS tool informed the audit of areas that had been highlighted as good practice within their own unit; and areas for improvement. Figure 4 depicts some of the areas listed. It is evident that both best practice and service gaps are varied across these units, with training and education, support for staff and post mortems appearing on both end of the lists; indicating there exists real scope for sharing and learning across the region. Fig 4: Areas of good practice and improvement as highlighted by the SANDS tool Section 1: Training and staff support Section 1 of the SCN audit focused on staff establishment, staff support and training and education.
Results inform us that 11 of the 13 units have dedicated bereavement midwives in post, with no dedicated hours for bereavement at Wye Valley or George Eliot Hospitals. Dedicated hours at the 11 units are widely varied, largely covering only core hours with a variety of ways of adopting bereavement cover out of hours, including training bereavement link workers, utilising chaplaincy support and also providing additional training to senior midwives. Figure 5 outlines the responses to SANDS bereavement standard 1.2: All staff have had training and support to enable them to care sensitively and confidently for parents whose baby is dying or has died. Fig 5: SANDS bereavement standard 1.2 SWMMNN 1/5 Heart of England Foundation Trust Wye Valley Hospital Worcestershire Acute Sandwell and West Birmingham Birmingham Women's Hospital SSBCMNN 1/4 Royal Wolverhampton Hospital Dudley Group of Hospitals Shrewsbury & Telford Hospitals University Hospital of North Midlands CNN 2/4 University Hospital of Coventry & Warwick George Eliot Hospital Burton Hospital South Warwickshire Hospital A presentation on 24 th February by Heart of England Foundation Trust s Bereavement Lead provided details of a 24/7 link bereavement midwife service they have established within Heartlands Hospital, in order to maximise on bereavement support outside of core hours. It sees to provide a baseline for best practice within this area improving access to specialised services within the given envelope of staff resource, whilst developing staff skills and capabilities. The audit went on to establish what training is provided around bereavement; and for which professionals. Figure 6 depicts the spread of training which is accessed across the region. Many of the comments suggested that in the main, training is designed and delivered by the bereavement leads, using a hybrid of various training they have attended. In addition to these training options, additional training has been received in bereavement photography, which has been received well by midwives and families. Fig 6: Training identified and comments received
Thirdly, this section of the audit went on to explore how Care of the Caregiver is managed within the organisation, asking units to outline what support is in place for staff dealing with emotional strain of handling bereavement, including handling of clinical governance investigations. Results show that there are large and varied options being used (see Figure 7). Workshop sessions at the Bereavement Lead meeting suggested that much of this support falls to the Bereavement Leads themselves, with little formal training available for them in how to support their colleagues in this way. Fig 7: How care of the caregiver is managed within West Midlands maternity units
During the stakeholder meeting, a number of recommendations, suggestions and requirements were made by the group around 24/7 cover, training, education and staff support, with a few key themes as outlined below: 1. A consistent approach is required to training, with standard methods of e- learning and a West Midlands wide recommendation on what training and education should be followed; to cover all roles who come into contact with bereaved families 2. Shared training is required for all Bereavement Leads in how to effectively support staff who are dealing with bereavement 3. Training could be improved by asking bereaved parents to be involved and share their stories with professionals 4. All units could benefit from assessing the 24/7 cover they provide and how they can utilise and develop existing staff/ roles to provide out of hours specialised bereavement support Section 2: Labour and after birth The results of the 2014 SCN Maternity Gap Analysis highlighted that location of care was one of the factors greatly affecting the experience of parents during labour and after birth. The bereavement audit asked units to outline where families are placed during this time and whether the facilities available were sufficient. Additionally, a number of other relevant standards were assessed in relation to the period of labour and after birth. Figure 8 shows the units responses to the following SANDS standards: 6.1 When there is time, parents are always offered opportunities to plan the birth and how they would like it to be handled. 6.2 Once she is in established labour, every woman has an experienced midwife who looks after her throughout her labour and birth. 6.3 Less experienced midwives are given opportunities to care for women alongside experienced midwives in order to develop their skills and confidence. 6.6 There are one or more dedicated rooms on the labour ward with en suite toilets and showers for mothers whose baby has died or will die, where they cannot hear other mothers and babies. 6.8 There are enough of these dedicated rooms for the number of late miscarriages, stillbirths and neonatal deaths in this unit. 6.10 All staff are able to offer parents opportunities to see and hold their baby and to create memories. 6.18 Partners and other family members are always able to get food and hot drinks (even if only from a machine) 24 hours a day. 6.19 There are toilets and washing facilities for both male and female partners and other family members near the labour ward. 7.2 Each dedicated room has a double bed (or an extra single bed) so that the mother s partner or companion can stay overnight.
Fig 8: SANDS bereavement standards 6.1 7.2 6.1 6.2 6.3 6.6 6.8 6.10 6.18 6.19 7.2 SWMMNN 4/5 1/5 2/5 1/5 0/5 4/4 5/5 4/5 5/5 HEFT WV WA SWBH BWH SSBCMNN 4/4 2/3 3/3 3/4 1/4 4/4 4/4 3/3 3/4 RWH DGOH SATH UHNM CNN 4/4 3/4 3/4 2/4 2/4 4/4 3/4 4/4 3/4 UHCW GEH QHB SWar There were many comments received both within the audit and the meeting in relation to some of the areas highlighted above, in particular around the challenges of offering location of care where other labours or babies cannot be heard balancing this emotional trauma with clinical need to keep families close to the required professionals. Stakeholder discussions on this topic involved sharing how and where they care for bereaved families and how they look to overcome these challenges. Units discussed the benefits in continuing to network together; and to visit and view each other s bereavement rooms/ layout in order to share and learn. Section 3: Communications & Arrangements A further area of concern received by the families within the Maternity Gap Analysis was lack, or miscommunication, of information between healthcare professionals following a loss. Section 3 of the audit investigates the process units have established to ensure information is cascaded timely and efficiently to all who may come into contact with the family. The section tests against SANDS standards, as follows, with results illustrated in Figure 9: 5.1 The unit has a designated person who always ensures that the mother s GP and community midwife are accurately informed of what has happened within one working day: a) following the discovery of a serious problem or a fetal abnormality during pregnancy; b) following a late miscarriage c) following the diagnosis of an IUFD
d) following a stillbirth e) following a neonatal death in the maternity unit. 4.1 The antenatal clinic staff are always informed of the baby s death. 4.2 Any remaining antenatal appointments are always cancelled. 4.3 The maternity unit has a comprehensive list of other likely departments that may need to be informed that the baby has died. 4.4 All the relevant departments are always informed. Fig 9: SANDS bereavement standards 4.1 5.1 5.1a 5.1b 5.1c 5.1d 5.1e 4.1 4.2 4.3 4.4 SWMMNN 3/5 4/5 4/5 4/5 4/5 5/5 5/5 5/5 5/5 HEFT WV WA SWBH BWH SSBCMNN 2/3 2/4 2/4 2/4 2/4 4/4 4/4 3/3 4/4 RWH DGOH SATH UHNM CNN 2/4 1/4 1/4 1/4 2/4 4/4 4/4 4/4 3/4 UHCW GEH QHB SWar In relation to standard 5.1, discussions at the Bereavement Lead meeting confirmed that the reason many leads had answered no or sometimes to these standards was not because there were no systems in place to ensure this information was cascaded, but because it was not the responsibility of one designated member of staff, as requested within the standard. For example, Wye Valley have a robust bereavement checklist, which covers all of these areas. The individual completing the checklist will alter - but whoever is completing will be responsible and accountable for these actions being followed. Not all units have a bereavement communications checklist and as such this is one area of shared improvement worth pursuing. One area for inclusion within the checklist should be health visitors for families with other children, as Queens Hospital, Burton highlighted that these professionals are not always informed. Section 3 of the audit continued by requesting information pertaining to the arrangements of registrations of deaths and funerals, including 4 SANDS bereavement standards, as outlined in Figure 10.
10.1 All parents whose baby is stillborn, or was born alive and then died, are given verbal information about how, when and where to register the stillbirth or the birth and death of their baby. 10.2 All parents whose baby is stillborn, or was born alive and then died, are given written information about how, when and where to register the stillbirth or the birth and death of their baby. 11.1 All staff are able to give the parents verbal information about the funeral arrangements that the hospital offers. 11.12 A well-informed member of staff monitors the quality of contract funerals at least once a year. Fig 10: SANDS bereavement standards 10.1 11.12 10.1 10.2 11.1 11.12 SWMMNN 5/5 5/5 4/5 5/5 HEFT WV WA SWBH BWH SSBCMNN 4/4 4/4 3/4 2/4 RWH DGOH SATH UHNM CNN 4/4 4/4 2/4 3/4 UHCW GEH QHB SWar University Hospital of Coventry and Warwick presented during the 24 th February stakeholder meeting, informing the group of 3 areas of improvement which had been made within the Trust s maternity bereavement services: 1. On-site registration of deaths 2. Placental histology 3. Postnatal counselling service The introduction of the registrar for deaths on site at the hospital, one day a week, has provided some additional choices for bereaved parents. One parent in particular who presented her baby s story at the meeting, spoke passionately about the importance of providing the support to families around these arrangements a voice that echoes the message heard by many families during the Gap Analysis work. Figure 10 would indicate that 9/13 units are confident that all staff can discuss funeral arrangements; and 11/13 are assessing the quality of the funerals offered annually.
The offering of post mortems and follow up information and meetings were explored within the audit and the follow on meeting. The audit assessed SANDS bereavement standards 9.1-3 and 9.7, with the results shown within Figure 11. 9.1 All parents whose baby dies are offered a post mortem. 9.2 All staff who seek consent/ authorisation for a post mortem are trained to do so, understand what a post mortem entails, understand the benefits of a post mortem, and are able to answer parents questions. 9.3 All parents are offered written back-up information about post mortems that is specifically suitable for a perinatal death. 9.7 All parents who have consented to a post mortem are able to discuss the results with a senior member of staff within twelve weeks of the birth. Fig 11: SANDS bereavement standards 9.1 9.7 9.1 9.2 9.3 9.7 SWMMNN 5/5 4/5 5/5 4/5 HEFT WV WA SWBH BWH SSBCMNN 4/4 4/4 4/4 3/4 RWH DGOH SATH UHNM CNN 4/4 3/4 4/4 1/4 UHCW GEH QHB SWar Table discussions at the 24th February stakeholder meeting challenged the above results, questioning whether the offer of post mortems is always performed by the most suitable person and at the right time. It was evident that some units are not allowing as much time to parents to make the decision, with others allowing families to return home and with bereavement leads visiting or telephoning to discuss decisions. In addition, it was highlighted by the parents within the meeting how significant it is that the post mortem is offered by a professional who already has a relationship with the parents. Figure 12 details the variety of locations that units are using for post mortem result meetings. The Gap Analysis highlighted the discomfort for many families in carrying out these meetings in environments that are not fit for purpose. It is clear that across the region, some dedicated rooms are available; and where they are not available, or at the request of consultants, other locations are being utilised. Fig 12: Locations of post mortem results meetings
Section 4: Postnatal and onwards, including process and review The third area of improvement described by UHCW was around postnatal care and the offering of counselling services. Many units expressed the inability to secure or provide counselling; and the varying levels of engagement with supporting charities (including SANDS, Tommy s and Bliss); plus the challenges for areas that do not have a local SANDS group. In addition, the process of review, feedback and improvement were discussed, with 10/13 units confirming that stillbirths are reviewed within a multi-discipinary team; and all 13 units stating that neonatal deaths are included in regular audit or case review. Figure 13 highlights the responses to the SANDS bereavement standards relating to these areas of the pathway, as listed below: 12.4 All parents whose baby dies are given written details of national and local sources of support and organisations such as Sands, BLISS, the Miscarriage Association, ARC (Antenatal Results and Choices), and the CBC (the Child Bereavement Charity). 13.2 All bereaved mothers attending the unit for a postnatal check-up are invited to wait in a separate waiting area, away from other mothers and babies. 13.3 There is a fail-safe system for making sure that all staff who see a bereaved mother at her postnatal check-up know that her baby has died. 14.1 A mother whose baby has died, and her partner, are always offered extra support and monitoring in each subsequent pregnancy.
15.1/2 Staff can always call on a professional interpreter when a problem is identified in the antenatal clinic or ultrasound department/ and within the labour ward 17.1 There is a designated member of staff who is responsible for overseeing and co-ordinating the whole experience of care for parents whose baby dies from the moment the death is suspected or confirmed until the parents leave the unit. 17.2 There is a designated member of staff who is responsible for monitoring maternity unit systems, policies and protocols to ensure that they are consistent and ensure the best possible care for all parents. 17.3 The unit has formal and informal ways of getting feedback on the care that bereaved parents have received through, for example, local support groups and interviews with individual parents. 18.1 All stillbirths are reviewed in a multi-professional meeting using a standardised approach to analysis for sub-standard care and means of future prevention. The results of the discussion are recorded in the mother s medical notes and discussed 18.2 All neonatal deaths are included in regular audit/ case reviews. Fig 13: SANDS bereavement standards 12.4 18.2 12.4 13.2 13.3 14.1 15.1/2 17.1 17.2 17.3 18.1 18.2 SWMMNN 5/5 2/3 3/5 4/5 5/5 4/5 4/5 5/5 4/5 5/5 HEFT Wye Valley Worcs Acute NR SWBH BWH NR SSBCMNN 4/4 1/2 2/3 4/4 4/4 3/4 3/3 1/3 2/4 4/4 RWH NR DGOH SATH UHNM CNN 4/4 3/3 3/3 3/3 3/3 1/3 4/4 2/4 4/4 4/4 UHCW NR George Eliot Burton South Warwick NR = Never return Mothers are not invited back for postnatal checks within the hospital they are done at home or at the GP surgery Additional areas of discussion During the stakeholder meeting, 3 further areas of discussion were raised and information gathered accordingly, as presented in Figure 14. The units for whom
responses are recorded are those who were present in the discussions at the time and as such omissions are no reflection on the units concerned. Additional areas of discussion were: 1. Variation in gestation accepted within the midwifery bereavement service. As can be seen by Figure 14, this ranges from 12/40 at the lowest to 22/40 at the highest within UHCW, with an average gestation acceptance of 16 weeks. 2. Secondly, discussions around the variation in acceptance for the bereavement leads to do home visits with 4 of the units asked still continuing this area of good practice, and 4 others unable to do so. 3. Lastly, discussions around SANDS involvement continued from section 4, with the majority of units discussing the benefits they receive of strong links with their local group. Fig 14: Additional discussion information Worcestershire Acute 12/40 Sandwell and West Birmingham 16/40 Gestation crite ria for service Home visits service available Yes Birmingham Women's Hospital 16/40 Royal Wolverhampton Hospital 16/40 Yes Yes Dudley Group of Hospitals 20/40 No No University Hospital of North Midlands 12/40 if TTOP No Yes University Hospital of Coventry & Warwick 22/40 South Warwickshire Hospital 20/40 No No Yes Yes SANDS group attendance No SANDS group in Worcestershire Links with Birmingham SANDS Excellent links with Birmingham SANDS Excellent links with Coventry SANDS No attendance but strong links Conclusion The West Midlands SCN bereavement audit provided a sound base on which to begin discussions around the variation in practice of bereavement care across the region. Almost all areas of this care pathway have pockets of good practice and equally gaps in provision, in differing units. The networking and stakeholder event provided a launch forum for discussions around the findings of the audit and the beginnings of sharing, learning and peer development and support. Fundamentally, all stakeholders were keen to engage on a journey of improvement, eager to further investigate bereavement care and work towards a standardised, fair and consistent service for our families.
Further actions Southern West Midlands and Staffordshire, Shropshire and Black Country Operational Delivery Networks (ODNs) have both agreed to host and support an ongoing bereavement lead subgroup, to continue to interrogate the audit and other areas of improvement within this speciality. Central Newborn Network, although not a maternity network, have also agreed to support their bereavement leads in working together to improve services. Each of these subgroups will meet and create its own objectives for the future. Listed below are some recommendations for inclusion in these objectives, as highlighted within this report. These areas for further work are not exhaustive; and all improvement planning should be done with the full audit information, available from the SCN team. A consistent approach to training, with standard methods of e-learning and a West Midlands wide recommendation on what training and education should be followed; to cover all roles who come into contact with bereaved families Shared training for all Bereavement Leads in how to effectively support staff who are dealing with bereavement Inclusion of bereaved parents within training programmes All units to assess the 24/7 cover they provide and how they can utilise and develop existing staff/ roles to provide out of hours specialised bereavement support Units to continue to network together; and to visit and view each other s bereavement rooms/ layout in order to share and learn. Sharing and agreement of a standard bereavement communications checklist and process Consideration of location of post mortem meetings Consistent West Midlands wide approach to gestation acceptance criteria for maternity bereavement services Review the ability of units to home visits, with the view to offer all patient equitable services The Strategic Clinical Network is satisfied with its assessment of bereavement services and that continued improvements will rest within the ODNs. Any recommendations for future work from the SCN are listed below: Collate together future improvements and work completed by ODNs with a goal for consistent care across the 3 ODN geographies Host annual bereavement event, bringing together bereavement leads, charities and parents for sharing of good practice Produce recommendation document for Trusts around what a gold standard bereavement service would look like within their units; enabling the ODNs to report on any unacceptable levels of provision
Please note there is no schedule or requirement for this work to be carried out by the SCN at this stage and communications will continue between the SCN and the ODNs around bereavement care as part of collaborative working, whilst subgroups and improvement plans are established.