Written evidence from Child Bereavement UK, Sands - The Stillbirth and Neonatal Death Society, SUDC UK, The Lullaby Trust

 

Background

The Lullaby Trust (www.lullabytrust.org.uk) and SUDC UK (www.sudc.org.uk) work closely with families who have experience of the Coronial process, with a particular focus on sudden and unexpected death in infancy and childhood (0-18 years). The Coronial process is key to the experience and support that families access after such a tragedy.

 

All families who experience the sudden and unexpected death of a baby or child will be subject to the Joint Agency Response process. This means a large number of professionals involved in a detailed process; some of whom will already know the family and some of whom will not. The Coroner has a key role to play and has an opportunity to ensure that families get the information and support they need. These deaths often remain unexplained despite thorough investigation.

 

The two charities created a Survey Monkey for bereaved families to complete to help inform the recommendations detailed below. In total 79 responses were received and the findings widely mirror experiences shared by families over many years. Given that the survey was only promoted to families via email and social media over a two-week period, the number of responses surpassed our expectations based on previous family surveys. This indicates the high interest from families in contributing to this enquiry. We have included quotes from families as they relate to the key recommendations below. Sands (The Stillbirth and Neonatal Society) and Child Bereavement UK have also contributed to and support this submission as organisations also supporting bereaved families.

 

We also support the recommendations in the additional submission from the Steering Committee for the establishment of a registry for unexpected deaths of children in England.

 

This submission details the 6 key recommendations as follows:

  1. There should be a national standard for Coroners to ensure the same service throughout the country
  2. Families need regular communication and an idea of timescales
  3. Post mortem results should be explained by a health professional
  4. All families need to have a full discussion to ensure informed consent on what happens to any tissue samples
  5. Families need to understand why an inquest is being held and what it involves
  6. In cases of neonatal death the standards set out in the National Bereavement Care Pathway must be followed to ensure parents are supported and informed

 

Key recommendations:

 

  1. There should be a national standard for Coroners to ensure the same service throughout the country
     

1.1.  The experience of families can differ greatly based on where they live. This covers every recommendation in this submission. We received excellent examples of Coroners who kept families informed, gave choices where possible and offered support and referrals. Families who have a negative experience tend to remember this for a long time and openly say that it impacts on their grief.

 

1.2.  The importance of having a national service is also highlighted in a Coroner’s ability to prevent future deaths. The National Child Mortality Database has a key role to play in looking at deaths nationally. We find it is a regular occurrence to see local newspaper articles detailing a Coroner’s advice around an individual death that is also a national issue. Safer sleep advice for babies under the age of 12 months is a key example here, where comments at an inquest on key risk factors are linked to that baby’s death rather than a national need for change. This can mean undue and deeply distressing reporting based on an individual family’s situation. Certainly for child deaths the National Child Mortality Database is placed well to identify and report on national trends or concerns and clarity here would be helpful.

 

1.3.  There are also significant differences around resources that cause added distress to families. We know there is a small number of paediatric pathologists but families are often not aware of this. We received several comments regarding the unexpected and difficult news that a baby or child had been moved to another area of the country without understanding why:

 

1.4.  Terrible experience but I know its worse for some. Had his funeral a week and 2 days after he died. He was moved hospital without notice to us which wasn't great. Meant I only saw him once at the funeral home

 

1.5.  We also want to see all families being offered the same access to their baby or child wherever possible. If they wish to take photographs, hand and foot prints, or spend time with them this should be encouraged and supported and there should not be a standard negative response.

 

1.6.  We believe that all families should be offered the same level of service no matter where they live. Coroner’s should have a more systematic means of highlighting national concerns that might help prevent future deaths

 

  1. Families need regular communication and an idea of timescales

 

2.1.  We know that deaths that remain unexplained will have a full and thorough process. This cannot happen in a short timescale, but families often feel lost, with long periods of time where no-one has contacted them and they are not sure who to contact. This is a process that most families are not aware of until they are subject to it at a very distressing time. As one family member summarised:

 

2.2.  We were given a lot of information at once and it was overwhelming

 

2.3.  Families need to be given a named contact in the Coroner’s Office, and should be given regular updates, even when there have been no significant developments. Over 33% of those answering our survey did not have a named contact. Only 37% felt the contact from the Coroner was proactive, with 275 saying they initiated every contact with the Coroner’s office. It is vital that someone explains to the family what is happening and why.

 

2.4.  “We were left for days waiting for calls. Do they understand how powerful their silence is to grieving parents? We sat by the phone waiting and waiting for news, terrified of what we will be told, whilst somehow trying to just get from one hour to the next. We had lost our beautiful baby boy and we were barely even functioning. When we did get a call back, we felt the replies were unhelpful and vague, lacking in tact and empathy. We often felt like returning our call was something that was being crossed off the list, a formality. “

 

 

2.5.  One of the greatest concerns for families related to the long timescale between their baby or child dying and the conclusion of the process or inquest. Whilst there is some inevitability to the timescale as mentioned, there are also regional variations that need to be tackled and a clear resourcing issue locally. Over 57% of families told us they were not given an idea of the timescale of the process. Families are much better prepared to face long timescales if they are warned of this and regular contact is maintained.

 

2.6.  I understand how busy the coroners are, and how few of them there are, but a 15 month wait for the inquest is unacceptable, and a very traumatic and probably unnecessary experience in our case.

 

2.7.  We are concerned that the impact of the pandemic will be even longer delays for families. The families who responded to our survey whose baby or child had died during the pandemic did all receive an indication of timescales, which we hope means this area is improving.

 

2.8.  Coroner’s and Coroner’s Officers should receive training in key skills in communicating with bereaved families. 70% of families who responded to our survey said their contact with Coroner’s was compassionate and empathetic. We recognise that this is a difficult area of their work, but it cannot be avoided, and many charities particularly in the child and baby loss sector can offer this training and ongoing support. We would also like to see regular referrals to organisations (such as the charities listed in this submission) who can give ongoing support to families.

 

  1. Post mortem results should be explained by a health professional

3.1.  Families expressed great levels of distress at receiving final post mortem results at a time and via a method that they were not expecting. If regular communication with families is maintained then there are many opportunities to discuss this with families and find out how they would like to receive these results. This should never be an unexpected contact. Families should never be sent the results via post or email without prior warning. We received many distressing comments about families experiences of receiving results in a time and manner that caused more upset:

 

3.2.  “We were given timescales of post mortem and inquest and a year on we feel forgotten about.”

 

3.3.  “If we had been given realistic timescales and the factors that could cause delays initially we could have prepared ourselves, our family and friends.  Blurting out the results over the phone, with no explanation was a horrific experience. We were told that a professional would explain the cause of our son's death and expected this to be in person but this never happened.”

 

3.4.  We requested that the report should not be posted to us but instead we would be told when it was ready and then be talked through it with medical professionals. Instead the report arrived in the post without warning (on what would have been our son’s birthday)”.

 

3.5.  Over 56% of respondents to our survey said that they were not given any updates on the progress of the post mortem, and 47% were not told when to expect the results. 65% had no opportunity to state a preference on how the result of the post mortem would be communicated to them, 18% received the post mortem through the post. The majority (43%) had the result of the post mortem communicated via phone call from the Coroner’s Officer.

 

3.6.  The Coronial service is ideally placed to ensure that families are supported to talk through the post mortem report with a health professional. 72% of families who responded to our survey said they were able to do this, but those who were not offered this spoke of how difficult this made their grieving process. We have examples of families who many years later have questions about the report because they were not offered this. It is incredibly difficult for families to see the report relating to their baby or child, and having a discussion from someone who understands all areas of the report is vital.

 

  1. All families need to have a full discussion to ensure informed consent on what happens to any tissue samples

 

4.1.  This is again a difficult subject, and one where we see examples of best practice around the country but also examples of poor practice and the impact this has on families. There should be a clear process for discussing the retention of tissue samples with families by someone who understands the requirements and options and has had training in communicating with bereaved families.

 

4.2.  For families where no explanation has been found for their baby or child’s death, the vast majority (76%) told us they want the samples to be used in research, which may include further investigation into their child’s death as recommended by a medical professional. There is great regret from those who later find out that this was an option that they did not receive or did not understand.

 

4.3.  “We did agree to having the samples that the pathologist had finished with go back to him, as we felt this was the right thing to do by our son. But we DID NOT realise what this meant. We had no idea this would lead to future evidence, tissue blocks or historical slides to be destroyed. We thought there was a difference and no one ever explained it to us. This conversation did not take place, and believe me, as his parents we were listening to every word. The current system means that parents like us may not be told this information by someone who truly understands the ramifications of this decision. Including how important this could be, not just to the family or for the safety of siblings, but for everyone, to stop these deaths from happening.”

 

4.4.  As charities, we have examples of registered families where further investigation has resulted in the identification of genetic variants firstly in the deceased child and subsequently in their parents, siblings and grandparents. Some of whom now take preventative medication. For example, where a cardiac channelopathy has been identified. This highlights the importance of informed consent and also how worrying it is that 15% of families told us they were not asked what they wanted to happen.

 

4.5.  We agree with the submission from the registry group that Coroner’s might not be the right roles to seek consent, but they have a central role in ensuring that it has happened.

 

  1. Families need to understand why an inquest is being held and what it involves

5.1.  The number of families having an inquest is decreasing but there remains a large group of families whose baby or child will have an inquest. Sadly, a large number of those families state that they had no explanation of what this meant. About 42% of respondents had a formal inquest into their baby or child’s death but 40% of them had no explanation of what to expect at the inquest.

 

5.2.  Many are not sure if they should attend or not and are very daunted by the process. Given the care that many will receive at an Inquest, it is disappointing to hear that there is not support to explain this to families, and we think there is clear room for improvement in communication. The resources to explain and support families are available, but families are often left to find these themselves.

 

 

  1. In cases of neonatal death the standards set out in the National Bereavement Care Pathway must be followed to ensure parents are supported and informed

6.1.  When a baby’s death in hospital is reported to the coroner, the parents must always be informed and the reasons for reporting the death should be explained. Staff should acknowledge that this may be difficult for parents who may not have expected this, and they should be offered support. After a baby’s death is reported, the coroner may or may not decide that a post mortem examination should be carried out to try to establish the cause of death. Where a post-mortem may delay the baby’s burial, cremation or funeral this should be discussed with parents.

 

  1. Conclusion

7.1  The death of a baby or child is a deeply traumatic event. The Coronial service is vital to our understanding of why these deaths have happened, and how we might prevent them from happening in the future. Support for bereaved families is not an additional task; it should be integrated into every part of the process. We need to ensure Coroners and their staff have the time and training to offer the support to families that is so vital. Charities are here to offer information and support to families. We believe that Coroners can refer through to the many organisations available so we can all help families to navigate their way through an incredibly traumatic period.

 

September 2020