Stillbirth Sub group
Wednesday 31 August 2011, 10.00 am
Howie’s Restaurant
Waterloo Place, Edinburgh
MINUTES
Attendees:
Dr Catherine Calderwood Senior Medical Officer, Women and Children’s Health, SG
(Chair)
Dr Jim Chalmers Consultant in Public Health, Information Services Division, NHS National Services Scotland
Sarah Corcoran Policy Manager, Maternal and Infant Health Branch, SG
Emma Currer National Officer for Scotland, Royal College of Midwives
Meg Evans Consultant Perinatal Pathologist, NHS Lothian
Janette Hannah Policy Officer, Scottish Government
Alison Hall Dumfries & Galloway Branch representative, SANDS
Ann Holmes Consultant Midwife, NHS Greater Glasgow & Clyde
Dr Lesley Jackson Consultant Neonatologist, Scottish Neonatal Consultants Group
Dr Chris Lennox Clinical Adviser, NHS Health Improvement Scotland
Leslie Marr Reproductive Health Programme Manager, Health Improvement Scotland
Dr Alan Mathers Clinical Director, NHS Greater Glasgow & Clyde
Ann McMurray Glasgow Branch representative, SANDS
Jane Norman Professor of Reproductive Medicine, University of Edinburgh
Sarah Stock Clinical Lecturer and Subspecialty Trainee in Maternal Fetal Medicine, University of Edinburgh
Apologies:
Neal Long Chief Executive, SANDS
Janet Scott Research Manager, SANDS
Sandra Smith Consultant Midwife, NHS Education for Scotland
In attendance:
John Birrell Project Manager, Shaping Bereavement Care, SG
1. Welcome and apologies
Catherine welcomed everyone to the meeting and apologies were noted as above.
2. Minutes of last meeting
The minutes of the previous meeting held on Wednesday 29 June were agreed.
3. Actions from last meeting
Item 3 – Catherine had made contact with Meg Evans and would now seek evidence based information from Alan Howison.
Item 3 – Sarah had updated NHS Health Scotland (HS) on the group’s ongoing concern over the insufficient and misleading advice in Ready Steady Baby (RSB). It had been previously agreed that HS representation on the group would be useful and Sarah advised that Ann Kerr, Healthy Living TeamHead at HS had confirmed that there would be future input by HS, however, it was unclear at this stage what form that would take i.e. membership or electronic input.
Concern was noted that HS sometimes circulate documents for consultation at a very late stage, allowing insufficient time for stakeholders to submit proper critic. It was further noted that for pregnant women with no internet access the hard copy of the RSBS publication was the only means of accessing this important advice and therefore it was crucial that the information given in the hard copy was also changed.
Action: Sarah would contact Ann Kerr to discuss HS representation further.
Item 3 - Ann Holmes confirmed that SWHMR (Scottish Women’s Handheld Maternity Record) definitely had separate fetal heart and movement boxes however did not have a cumulative risk ladder.
Item 3 – Sarah had identified the “Shaping Bereavement Care” Chief Executive Letter (CEL) which had been issued to all NHS Boards in February this year. The CEL highlighted protocols for care and e-learning for care staff and Janette would circulate to the group for information.
Item 4 - Sarah had met with the design team and provided them with a first draft and updated text for the parental guidance leaflet on fetal movements. In-utero pictures were still to be inserted and the leaflet would be designed the same way as the Reduce the Risk of Cot Death leaflet using the same colours etc. Text from SWHMR had been adapted and added to the leaflet. Sarah also advised that NHS Lothian will be acknowledged in the final leaflet.
Item 4 – Ann Holmes advised that the development of a leaflet was welcomed by members of the Lead Midwives Group at their last meeting. It was also noted that a new RCOG guideline for health professionals on fetal movement had been very recently published.
Item 4 – Members were keen to ensure that information in SWHMR reflected the information to be given in the parental guidance leaflet for parents on fetal movements. Following discussion with Lynne Nicol and Ann Holmes, Sarah had contacted HIS to request the wording in SWHMR be revised as follows:
“Most women will begin to feel fetal movements between 18 and 24 weeks. You should be aware of fetal movements up to and including the onset of labour and should report if the frequency of movements decrease or stop to the maternity unit as soon as possible. Do not wait until the next day to seek help.”
Item 6 – Sarah Stock had contacted 9 different centres to ascertain if they had any guidance on referral pathways or audit data relating to success rates. The Royal College of Gynaecologists and Obstetricians (RCOG) was preparing new guidance relating to identification but the draft would not be ready for 12 months or so and they had no guidance on referral pathways. There was also very little published data audit material.
Sarah Stock summarised an interim analysis of data from the Community Growth Scanning Project (CoGS) in Birmingham which showed that the diagnosis of In Utero Growth Restriction (IUGR) recognised and recorded in the antenatal notes had increased from the baseline of 11.8% in 2009/10 to 26.1% in 2010/11. Results also showed that antenatal detection of IUGR on the basis of a record of IUGR in the notes or a record of a low estimated fetal weight also increased from 27.1% to 33.5%. These increases were mainly due to more serial scans being requested and undertaken in pregnancies at increased risk of IUGR. Despite the relatively recent introduction of the new protocol, these preliminary results were already demonstrating significant improvements in IUGR detection.
Results also indicated that a cut off of the 10th centile was the most useful in identifying the at risk fetus. This cut off measure was also recommended in he RCOG guideline and therefore including a 10th centile on growth restriction charts may aid identification of the at risk fetus. The use of customised growth charts (RCOG guideline) did not improve detection.
The group felt strongly that, as the 10th centile appeared to be the most useful measurement in detecting the at risk fetus, then it should replace the 5th centile currently shown on SWHMR’s growth chart. This would need to be actioned promptly as the deadline for comments to be submitted to NHS Health Improvement Scotland (HIS) on the revised SWHMR was close of play today.
Sarah Corcoran contacted HIS colleagues during the meeting, requesting that they hold off going to print with the revised SWHMR as a substitute centile growth chart would need to be inserted in the document. This would ensure standardisation across Scotland and was in line with practice already followed in some areas and research.
Further discussion would be required outwith the meeting to agree which growth chart should be inserted – it was noted that there was little evidence to suggest that EFW on population charts was more useful for screening than AC alone and AC was the most important factor in most formulae for calculations.
Action: Catherine would list a summary of recommended subsequent referral pathway options under fetal anomaly scan i.e. if scan within normal range, no follow up required and patient should be referred back into the green pathway, however if there is continued concern that a fetus continues to measure small, even when scans are within the normal range, the woman should be referred to a consultant .
Item 7 – Catherine had spoken to the Maternal and Newborn Expert Review panel which includes representation form the NPSA. Intrapartum death form on NPSA website to be renamed Perinatal death form as it covers perinatal deaths and would be accessed by a wider group with this name change.
4. Presentations
4.1. eLearning Bereavement Module
John Birrell, Project Manager, Shaping Bereavement Care gave a presentation on the eLearning Bereavement Module, explaining that it was the intention to set up co-ordination of various groups/stakeholder in Scotland as there were currently none. Guidance on the implementation of a framework for action for the development and delivery of quality bereavement care services (CEL 9 (2011) was issued to all NHS Boards early this year. This guidance was based on the report “Shaping Bereavement Care” and produced by a multi-disciplinary project group. John’s secondment as Bereavement Project Manager had been extended until the end of December to assist NHS Boards with implementation of the guidance.
John tabled the National information pack which had been distributed to all NHS Boards – “When someone has died – information for you” – the pack outlined eLearning for Shaping Bereavement Care. NHS Boards had been asked to develop a planned and consistent approach to training and awareness raising in bereavement care, however there was currently not a lot of suitable training courses available for NHS staff or trainers. Advantages of eLearning – instantly accessible at home/ work, frees up time normally spent attending seminars/ courses etc. John spoke of the programme being developed:
· Written by Cruse Bereavement Care Scotland
· Consists of 5 individual e-learning courses
· Presented on the LearnPro learning management system
· Accompanied by a Train the Trainers course
John suggested this e-learning approach may also be useful for SANDS and indicated that Cruse would be interested in working with them to do this.
NHS National Education for Scotland (NES) has put out a tender for scoping exercises for all the bereavement training.
Catherine advised that this had all come about following a survey relating to the availability of bereavement care in Scotland and eLearning was deemed as being the best way to reach the highest number of people. Once the eLearning was up and running it would be available to all NHS Boards with no cost implications for staff as the eLearning could be done in their own time. Although to ensure uptake staff should be released to complete the modules which therefore does incur a cost.
John advised that NHS Boards were currently writing a 12 month Action Plan and he would follow up progress with them before his secondment with SG finishes in December.
If families wish, hospitals currently take responsibility for stillbirth funerals so that parents do not have to pay. This should not prevent families having the type of funeral they wish, although John spoke of trying to develop a contract with one company who clearly did not want families to make contact before the funeral.
It was further highlighted that transportation from hospital mortuary to the hospital where the post mortem is being carried out and the return journey can take up to 5 days and parents are charged for this service. This issue should be looked into further as hospitals are heavily involved in the process.
Action: The group agreed that protocols should be standardised and procedures explained to parents at the outset and would look at the development of a detailed pathway from staff dealing with bereavement to funeral arrangements.
Action: John would be invited along to the next SUDI Steering Group meeting being held on 27 October.[1]
4.2 Bereavement Care Standards
Alison presented a short document recently produced by SANDS Improving Care Team which was taken from the comprehensive “Pregnancy loss and death of a baby: guidelines for professionals” published in 2007. The document summarised the essential components of good bereavement care, to be viewed as the gold standard, applicable to Scotland only, looking at 3 key areas – place of care/ staff and training/ Resources and procedure.
SANDS had introduced a “teardrop sticker” scheme – the purpose was to use the sticker to mark parents’ notes, with their permission, to ensure that all other staff are aware at the outset of their history. It was the intention to forward these stickers to NHS Board Heads of Midwifery and although accessible on SANDS website, was not for further circulation.
The following points were noted during discussion:
· Although hospitals had clinical psychologists a dedicated bereavement midwife
would provide an all round postnatal service
· SANDS had opened the TULIP (Tayside Unit for Loss in Pregnancy) room in Ninewells Hospital, Dundee – designed and fitted in consultation with families who had been through the experience of stillbirth. Memory boxes were provided where bereaved parents can place tiny footprints and other momentos if they wish
· Risk that the document may be written off/ undoable as it appeared so aspirational
· Securing funding for bereavement rooms would be an issue, particularly for older buildings where additional space was not incorporated in the original building plans
· Most of the recommendations can be audited and all hospitals were recently sent an auditing tool, however little feedback had been received to date
The group supported using this document in future communications with NHS Boards around the bereavement care pathway etc and acknowledged that the document would help identify what NHS Boards already have in place and also show any gaps in provision.
Action: SANDS and RCOG representatives should move this forward by developing a paper and contacting Lead Midwives and the Royal College of Midwives – endorsement by these groups would add leverage. Outcomes would be fed back to this group for further discussion.
4.3 Guideline for Health Professionals
Ann presented the document “SANDS Training for Health Professionals”, which was also based on their “Pregnancy Loss and the Death of a Baby: Guidelines for Professionals” This document was suitable for multidisciplinary groups and training could also be tailored for specific groups so may be suitable for zincographers to use. It was designed to give participants the opportunity to extend the awareness of the range of childbearing losses, develop communication skills, enhance awareness of parents’ needs and increase ability to respond flexibly to the needs of parents.
Ann advised that £300 covered travel costs for the trainers and hospitals were asked to provide the venue and catering and were happy to do so. Most of the larger SANDS groups funded training packs for the events.
Action: Catherine, Ann and Sarah would discuss the possibility of providing funding, advertising courses through NHS NES and identifying whether there was sufficient capacity for potential roll out across NHS Boards. Sandra Smith would also be invited to join this discussion.