Health CommitteeWritten evidence from Sands (ETWP 86)

Over 6,500 babies die just before, during, or soon after their birth every year in the UK. More babies die during this period of their early lives than at any other stage of childhood.

The number of stillbirths has not changed in more than a decade. Yet many hundreds of babies’ deaths could be avoided with better care and more research. Around 500 babies die every year because of a trauma or event during birth that was not anticipated or well managed.1 These deaths, when they occur at term, should never happen and almost always could be avoided with better care.

Without adequate training, staffing and skills mix, Sands has great concerns over whether services can be safe. Under-resourcing across the board in maternity and neonatal care has very real and tragic consequences. Yet calls to achieve even minimum staffing levels in these areas are still not being met.

In addition to this, in those events that end in the tragic death of a baby, the quality of the care given to bereaved families is crucial and can have long-lasting effects. At a time of overwhelming distress parents need the right support from trained staff in making important choices about the precious and painfully short time they have with their baby.

A. Background: About Sands

Sands, the stillbirth and neonatal death charity, was founded in 1978 by a small group of bereaved parents devastated by the deaths of their babies, and by the total lack of acknowledgement and understanding of the significance and impact of their loss. Since that time, Sands has supported many thousands of families whose babies have died, offering emotional support, comfort and practical help.

Today Sands operates throughout the UK and focuses on three main areas:

supporting bereaved families;

working in partnership with health professionals to promote awareness of perinatal mortality and provide professional training in bereavement care. (Our widely acclaimed publication Pregnancy Loss and the Death of a Baby: Guidelines for Professionals is now in its third edition); and

funding research that could help to reduce the loss of babies’ lives.

B. Case Studies/Personal Experiences

It is well recognised that many aspect of perinatal and neonatal service delivery are under-resourced but few will acknowledge publically that under-resourcing, when unsafe, can lead to a death.

Baby Louie

Between her arrival at the hospital, just after 9.00 am on 17 May 2011, and the birth of her baby Louie, just after 11.00 pm that day, Michelle Hemmington was under the care of eight different midwives but developed a relationship with none of them.

Michelle was offered a warm bath to cope with the pain and then moved to triage because there were no beds free. During that time—nearly five hours—no one came in to monitor mother or baby. Michelle’s sister tried to call for more gas and air because it had run out. When a midwife did arrive 45 minutes later Michelle was 8cm dilated.

Michelle was moved to the labour ward where Louie’s heart began to decelerate. The midwife asked for assistance but the obstetric registrar was in theatre. The consultant wasn’t called, and there was no “fresh eyes” protocol for the CTG. By now Louie’s heart rate was deteriorating further.

“I kept saying, ‘I can’t get him out’. I asked several times for an emergency section but they told me I was too far gone.”

The paediatric registrar arrived, stayed in the room for only three minutes, and left without giving any instruction, leaving the midwives bewildered. Within minutes Louie was born and put on Michelle’s chest but then swiftly taken away. “There was lots of commotion suddenly and I heard them shouting for a new resuscitaire”. Nearly half an hour later Michelle and her partner Paul were told Louie had died. The post mortem indicated Louie had been starved of oxygen and had signs of a pneumonia infection.

The hospital initiated a Serious Incident investigation and concluded among failures in communication, team work and training, that the lack of continuity of care and the 12-hour work shift of the labour ward co-ordinator, during “a high-activity day”, had affected her ability to allocate risk. There had been several warning signs to escalate Michelle’s care, but they were all missed by every speciality.

The current mantra in maternity care delivery is choice but every woman’s first choice is to have a healthy baby. Michelle chose a hospital birth because she thought it would be safer than being at home: “But I felt totally left alone. It’s not just one person who failed us, it’s the whole system.”

Safety and quality are currently threatened by under-staffing in every area of perinatal care, from midwives to specialist pathologists.

Baby Amaari

On 18 August 2011, Dharmistha Patel gave birth to her stillborn daughter Amaari on a busy labour ward. Although the pain of hearing other mothers welcome their new babies into the world when Dharmistha knew her own was dead was unbearable, she was also moved by the dedication of her midwives. “One of the midwives didn’t leave my side for 13 hours. She went out to get things for my care but didn’t stop for lunch. I’m indebted to her. I’ve spoken to other people who had terrible experiences and I think it makes it 10 times harder to deal with.”

The Patels were told they could have a memory box for Amaari, if they wanted. Initially they said no but then changed their minds, taking hand and foot prints, a lock of her hair and photographs and dressing their daughter. The hospital helped arrange Amaari’s funeral and a bereavement midwife remained in touch when the Patels had questions later.

The Patels consented to a full post mortem which revealed Dharmistha had blood clots in her placenta, information that will impact the management of a subsequent pregnancy.

Compare the Patels’ experience with that of Anna and Andrew Milloy, just 100 miles away. Like the Patels, their baby girl died with no warning during labour at home. It was New Year’s Eve 2008 and Anna was transferred by ambulance to hospital where Philomena was finally delivered.

After a sleepless night, Anna, tired and devastated, asked to take Philomena home but was told by hospital staff that her request was “very strange” and would create more paperwork for the hospital. “I wanted to go home but I just couldn’t leave her at the hospital. I just couldn’t be separated from her”.

Anna’s wishes were eventually met but she and Andrew did not have a post mortem “I just assumed that by wanting to take Philomena home I’d effectively turned down the opportunity of having a post mortem,” says Anna.

The care that thousands of bereaved families receive every year around the time of their baby’s death is extremely important. Good care cannot remove the pain of loss, but care that is inadequate or poor makes things worse and affects a family’s wellbeing both in the short and long-term.

C. Staffing for Quality and Safety

The Royal College of Midwives (RCM) is petitioning the government for 5,000 more midwives across England and warns that current shortages are affecting both quality and safety:

“Births are also becoming increasingly complex needing more of midwives’ time. The combination of this and the rising birth rate is a dangerous cocktail threatening the safety and quality of maternity care. It means that too many maternity units across England are under-staffed and under-resourced to meet the demands made of them.”2 Cathy Warwick, General Secretary, RCM

At the same time, warns Cathy Warwick, “the midwifery workforce is ageing dramatically, and student training numbers into the future are not guaranteed.”3

Safe, high-quality maternity care also requires the right skills mix so that staff can respond to problems when they arise.4 In its latest report High Quality Women’s Health care: A proposal for change, the Royal College of Obstetricians and Gynaecologists (RCOG) states its concern about the continuing lack of 24-hour obstetric cover on wards:5

“Despite the expansion in (consultant) numbers, consultant presence on the labour ward still falls woefully short of the recommendations made in multi-professional standards.”

The potentially tragic consequences of under-resourcing are borne out by research into the risk of perinatal deaths during the normal working week versus at night and weekends. A recently published analysis concluded that the risk of neonatal death increased by 45% for babies born out of hours. Although 70% of babies are born at night, maternity units are not a 24/7 service.6

In 2010 Bliss, the special care baby charity, reported a desperate shortage of 1,150 neonatal nurses.7 However, in July 2011 Bliss’ survey of neonatal units found that one in three hospital units caring for premature and sick babies: “have or will be making cuts to their nursing workforce over the past year or in the coming 12 months”.

“Already more than half of units do not meet the Department of Health and NHS’s Toolkit for high quality neonatal services (Toolkit) standards...8 Cuts will have an impact on the survival rates and long-term health of children in neonatal care.” 9

Resource pressures extend through to the provision for families after a death. The Royal College of Pathologists estimate that a 20% increase in the numbers of perinatal pathologists is needed to deal with even the current low rates of post mortem uptake. A recent survey reported 30% of the perinatal pathology workforce will retire between 2013 and 2018.10 It is not clear what strategies there are to replace them.

The resourcing of perinatal pathology services varies widely between regions meaning that babies often have to travel long distances for a post mortem and that post mortem reports are often unacceptably slow in reaching parents.

Staff training is a further concern. Stillbirths barely feature in undergraduate or on-the-job training for doctors and midwives. It is left to Sands to provide this information through our multi-disciplinary training days in bereavement care. During these sessions clinicians routinely admit their lack of awareness of both how common stillbirths are and how profound the impact a baby’s death is.

As the NHS undergoes the upheaval of re-organisation and financial constraints against the backdrop of a changing population with greater health needs, the care of babies must not be even further demoted. Women and their families expect and deserve safe care, delivered by the right people at the right time, and co-ordinated across all specialities.

D. Care After A Death

Based on research evidence, discussions with professionals and parents’ experiences, Sands’ Pregnancy loss and the death of a baby: Guidelines for professionals sets out standards for care for parents whose baby dies during pregnancy, labour and shortly after birth. Widely-acclaimed, the Guidelines are now in their 3rd edition.

In 2009, Sands ran an online survey of maternity units in the UK with the aim of finding out how far units were following recommendations set out in the Guidelines. While there have been improvements in care in the past few decades, it was clear from the results that not all units feel bereavement care is a priority. In around 20% of the units that responded care is still poorly resourced and organised. In other units care is patchy.11

The survey found, for instance, that 52% of units have no designated bereavement support midwife. Nearly half of all units (45%) have no dedicated room on the labour ward for mothers whose baby has died to give birth, and a quarter of all units have no room away from the postnatal ward where bereaved parents can be cared for after the birth without hearing the sounds of other mothers and their live babies.

Some parents want to take their baby’s body home or to a place that has significance for them. There are no legal reasons to stop parents from doing this, but 31% of units did not offer parents the option.

We know that many parents suffer a significant drop in income following the death of their baby12 and that perinatal deaths disproportionately affect parents in poorer socio-economic groups. Yet in 56% of units parents are given no information about their entitlements to time off work, benefits and payments.

When a baby dies almost every parent will want to know why. But a parent’s need to know what happened is often in conflict with a feeling that post mortem investigation is invasive and their child has “already been through enough.”13

Coupled with this, the organ retention scandal of a decade ago generated a good deal of negative publicity for pathology services, and post mortem uptake rates fell from 55% in 2000 to 45% in 2009 for stillbirths and from 29% to 18% for neonatal deaths.14 Meanwhile confidence in the value of post mortem has fallen, not just among the public but among professionals too.

Research recently funded by Sands, and undertaken by the University of Manchester aimed to gauge how confident and well trained doctors and midwives are in taking consent for post mortem by asking professionals as well as parents about the experience.15

The survey found that 36% of midwives who have had training in taking consent, were dissatisfied with it. While 50% of obstetricians have actually seen a post-mortem, as recommended by the Human Tissue Authority, only 4% midwives have seen one. As many as 32% of midwives and 36% of obstetricians underestimate the value of a post mortem.16

There is huge variation in post mortem consent forms around the country; many are long, complicated and distressing to read. At least half of the parents surveyed by Manchester University weren’t satisfied with the information they received when asked for consent.17 Sands and the University of Manchester are developing a national post mortem consent form in consultation with stakeholders as well as the Department of Health and the Human Tissue Authority.

But if it is to have any impact the new form must go hand in hand not just with training but also with improvements to the resourcing of perinatal pathology services. Lack of workforce planning in this area suggests investigation into perinatal deaths is simply not valued.

Sands’ vision is for a Bereavement Care Pathway which sets out minimum standards for every aspect of care from bereavement to post mortem and support in another pregnancy.

E. Recommendations for Improvement

Urgent action is needed to ensure minimum levels of staffing and the right skills mix in all areas of perinatal life and death—in maternity, in neonatal care and in specialist pathology services—as outlined and in consultation with the relevant professional bodies.

Medical training for doctors and midwives must include a module on the risks and impact of perinatal death to improve awareness and understanding.

Managers and service commissioners must fund and organise bereavement services in line with Sands’ Guidelines for Professionals, and to include high quality perinatal pathology services.

There must be support for the development and implementation of a Bereavement Care Pathway, outlining minimum standards of care for bereaved families.

Trusts should adopt the national perinatal post mortem consent form and improve training in consent taking in tandem with the form.

In Conclusion

We have real concerns about the potentially devastating impact if there are not the right numbers of appropriately qualified and trained healthcare staff looking after mothers during their pregnancy and birth. Failure to provide or plan for adequate perinatal pathology services suggests these deaths are swept under the carpet as unimportant. We urge the Government to consider the facts presented in this evidence when developing workforce planning recommendations. We would also urge the Government to consider that training curricula is updated with the support of third sector organisations such as Sands to include the risks and impact of perinatal death to improve general awareness and understanding, bereavement care and support, and post mortem consent for bereaved parents.

December 2011

1 Perinatal Mortality Report 2009, Centre for Maternal and Child Enquiries 2011.

2 Rocketing birth rate fuels English regional midwife shortages, Royal College of Midwives press release, 15.9.2011.

3 The State of Maternity Services Report, Royal College of Midwives, 23.11.2011.

4 High Quality Women’s Health Care: A proposal for change, Royal College of Obstetricians and Gynaecologists 2001.

5 The future Role of the Consultant, a working party report, Royal College of Obstetricians and Gynaecologists 2005.

6 D Pasupathy, A Wood, J Pell, H Mechan, M Fleming, GCS Smith. Time of birth and risk of neonatal death at term: retrospective cohort study, BMJ 2010.

7 The chance of a lifetime?, Bliss 2010.

8 “Principle 2.2.3: A minimum of 70% of the registered nursing and midwifery workforce establishment hold an accredited post-registration qualification in specialised neonatal care” Toolkit for high quality neonatal services, Department of Health and NHS 2009.

9 SOS: A Bliss report on cuts to frontline care for special care babies, Bliss 2011.

10 British Paediatric Pathology Society and the Paediatric Special Advisory Committee survey of retirement intentions, Royal College of Pathologists 2008.

11 Bereavement Care Survey, Sands 2010.

12 Parents Survey, Sands 2009.

13 Eb Schmidt, S Downe, A Heazell. Parents Perspective after Stillbirth in the UK. Arch Dis Child Fetal Neonatal Ed 2011; 96:Fa124-Fa125.

14 Perinatal Mortality Report 2009, Centre for Maternal and Child Enquiries 2011.

15 A E Heazell, M J McLaughlin, P Cox, R Fretts, V J Flenady. A Questionnaire Study of UK Obstetricians, Midwives and Perinatal Pathologists Knowledge and Practice regarding Post mortem after stillbirth. Journal of Paediatrics and Child Health 2010; 46 (Suppl 3):6.

16 A E Heazell, M J Mclaughlin, V J Flenady. Falling Rates of Post Mortem After Stillbirth—Are Obstetricians to Blame? Arch Dis Child Fetal Neonatal Ed 2010; 95:Fa90.

17 Eb Schmidt, S Downe, A Heazell. Parents Perspective after Stillbirth in the UK. Arch Dis Child Fetal Neonatal Ed 2011; 96:Fa124-Fa125.

Prepared 22nd May 2012