Our major survey of bereavement care provided by UK maternity units to parents whose baby dies before, during or shortly after birth is published today and reveals worrying disparities in care for bereaved parents.
The first survey of its kind to be carried out in the UK, it shows that in most units the provision and organisation of care for bereaved parents has improved over the last few decades. However, in around 20% of the units that responded, care is still poorly resourced and organised, and in others it is patchy.
17 babies are stillborn or die shortly after birth every day in the UK, leaving over 6,500 families every year in need of the highest levels of bereavement support and care. Good bereavement support is essential and should form an integral part of every woman’s maternity care package as it can improve parents’ long-term well being and prevent the need for costly intervention later.
Much of the survey focused on the way that resources are allocated and care is organised. No matter how hard they work, staff cannot provide high quality care to bereaved parents if the resources and systems they need are not in place. Few of the changes identified in the report can be made by the staff delivering care to parents. Almost all must be initiated by managers or requested by service commissioners. It is therefore essential that those commissioning bereavement support services review these services and make any necessary improvements.
Disparity of care is evident across the country, sometimes within the same hospital Trust. Hospital managers and those who hold the purse strings need to invest in recruiting bereavement midwives with the training and purpose to deliver the care that parents deserve. Midwife
Survey findings of particular concern:
- 52% of units have no designated bereavement support midwife. It would appear that bereavement care is not perceived as a priority, despite the fact that 17 babies are stillborn or die shortly after birth every day in the UK, almost 6,500 babies dying every year.
- Midwives are more likely than doctors to have bereavement care training provided by their units. 51% of units have training for midwives. Only 32% of units include this topic in regular training sessions for doctors, although doctors are most frequently brought in when problems occur during pregnancy, labour, birth or afterwards.
- Nearly half of all units, (45%), have no dedicated room on the labour ward for mothers whose baby has died, where they cannot hear other mothers and babies – the sight and sounds of women and families with healthy babies add to the anguish and distress of already distraught parents. Providing dedicated rooms for bereaved parents should be seen as a priority.
- A quarter of all units, (24%), have no dedicated room away from the postnatal ward where bereaved parents can be cared for after the birth – again, dedicated rooms for bereaved parents should be a priority.
- In a small number of units, women having a miscarriage are cared for in areas that are clearly unsuitable, for example, on a medical or general ward or in an A&E department. Although the number of units where this happens was small, it is worrying: no woman should labour and give birth in an area not designated for this purpose. It is also unfair on the staff, who may not have the training and experience to care for the mother properly, causing her unnecessary stress and anxiety.
- Only 35% of the units that use shared graves for babies (56% of the units surveyed use shared graves) use lockable grave covers. This poses the very real risk that a grave may be disturbed and the baby’s body harmed. A recent case in London, where a baby’s body was taken from an unlocked shared grave and the body never found, is a tragic case in point. Lockable grave covers should always be used on a shared grave until it is full and the ground can be reconstituted.
The survey also looked at communication across language barriers and the following findings on interpreting were revealed (please note, under Section 20 of the Race Relations Act 1976 (amended in 2000) it is illegal to knowingly provide an inferior quality of care to a particular minority group):
- 38% of units usually use fathers to interpret. It can be extremely stressful for the father to interpret properly while he is coping with the distress and shock of his own loss, and it raises serious issues of confidentiality and valid consent. Couples should always be offered a trained interpreter.
- 5% of units usually use children to interpret, with 27% of units using children in an emergency. It is unacceptable to use a child or teenager to interpret for parents. The long-term consequences for both the young person and the family, can be extremely damaging.
The survey also asked how units provide information for parents with disabilities (please note the 2005 Disability Discrimination Act requires organisations to ensure that people with disabilities can benefit from their services). The following results revealed that for:
- Parents with hearing impairments – 38% of units only have access to signers in normal working hours, 38% of units do not have any access to signers.
- Parents with visual impairments – 82% of units have no information in formats suitable for these parents.
- Parents with learning disabilities – 86% of units have no information in formats suitable for parents with learning disabilities.
We feel it is important to note that only 25% (77 in total) of the maternity units contacted actually completed the Sands questionnaire. This would appear to indicate that in many units, care for these parents is not considered a priority. If this is so, it is seriously worrying for Sands and the thousands of parents we represent. Another possible factor in the response rate may have been the length of the questionnaire, and the fact that respondents had to get information from colleagues in other departments. Where staff are already overstretched this may have been too much to ask.
To conclude the survey we asked respondents to list things they would most like to improve in their units. Most of the improvements have resource implications and may be problematic to achieve. However, it is extremely encouraging to see that staff are so aware of what would make a real difference to bereaved parents, and are motivated to improve the service they offer.
Most frequently mentioned improvements were:
- A separate, dedicated suite or facilities for parents both during labour and afterwards.
- One or more bereavement support midwives (or equivalent).
- Bereavement support training for doctors, especially junior doctors. Also more multidisciplinary training.
- Better written information for parents, including information in other languages.
- Continuity of carer during labour and after the birth.
- Better communication between the different staff involved in care, including better, more streamlined documentation.
It is heartening to see that the care provided to bereaved parents has improved over the last 20 years. However, what is of great concern is the small but significant number of units where care is not up to standard. The fact that care in most units is good is of no help or comfort to those parents whose baby dies in a unit where care and resources are poor. Good care cannot remove the pain of parents’ loss but poor care makes things worse and affects their short and long-term wellbeing.
It is essential that midwives and other health professionals dealing with bereaved parents have the necessary training and resources to provide the highest levels of care. Hospital Trusts, Primary Care Trusts and Maternity Services Liaison Committees must review their services and make any necessary improvements to ensure that quality bereavement care is provided by all maternity units all of the time, and not just some of the time. Judith Schott, Improving Care Manager, Sands
The report has been circulated to all UK maternity units, Primary Care Trusts and Health Boards, Strategic Health Authorities, the Royal College of Midwives, the Royal College of Obstetricians and Gynaecologists, the Nursing and Midwifery Council, directors of midwifery education, and other relevant organisations.
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