Leading change

The Lead Sudden and Unexpected Deaths in Childhood (SUDC) nurse at Lancashire Care NHS Foundation Trust (LCFT) led on improvements to the nurse-led SUDC Service in collaboration with partner agencies. This service has led to improved outcomes, experiences and use of resources locally.

Where to look

The SUDC Service leads on the implementation and co-ordination of the Rapid Response processes following the unexpected death of a child. It is a national process, outlined in statutory guidance, undertaken by local services (Cabinet Office, 2018). The Child Death Review, Statutory and Operational Guidance in England states that the death of a child is a devastating loss that profoundly affects bereaved parents as well as siblings, grandparents, extended family, friends and professionals who were involved in caring for the child. It recommends that families should be met with empathy and compassion through clear and sensitive communication. Following an unexpected death, there are formal investigations to find the cause of death as part of wider integrated child death review processes (Garstang et al., 2014). These processes have a clear aim of establishing the cause of death, but it is less clear how bereaved families are supported.

In 2016, the Lancashire Child Death Overview Panel (CDOP) commissioned a review of the pan-Lancashire SUDC Service. The review found that two thirds of the child deaths locally occurred out of hours which meant that a full multi-agency response to an unexpected child death wasn’t consistently being undertaken. The findings highlighted that during ‘out of hours’ times, a collective understanding of the circumstances surrounding the death of a child was compromised as there was a reduced consistency in the response from nurse leadership. In addition, the quality of health support and provision of services to families was inequitable. The pan-Lancashire Lead SUDC Nurse identified an opportunity to address the unwarranted variation in ‘out-of-hours’ processes seen in practice, to strengthen and support these services.

What to change

The investigation following an unexpected child death involves the Police, a lead health professional, a Pathologist and the Coroner, all of whom liaise with multi-agency partners as part of the investigation. All professionals involved with child deaths should ensure that procedures are in place to support parents; to allow them to say goodbye to their child, to be able to understand why their child died and to offer the parents follow-up appointments with appropriate health-care professionals (Garstang et al, 2014).

The insight gained from the multi-agency response to any child death, endeavours to influence service design; provision and planning of services; improve practice, support, knowledge and expertise around caring for a child in death, care for the family; and help to identify themes and trends that can be translated into prevention strategies and Public Health messages/initiatives to work towards a reduction in the incidence of child death across Lancashire and nationally.

The lead SUDC nurse identified unwarranted variation in the Lancashire SUDC review regarding the access families had to the SUDC nurses who provided support and information to them throughout the process. The review also highlighted that, if the SUDC nurses were not present at the time of the child’s death, specific health and safeguarding details pertaining to the case were either not gathered, or were minimally gathered. Those families whose children died out of hours sometimes did not meet the SUDC nurses for some 3-4 days following the death of their child. By which time they often did want to engage with the SUDC nurse due to lack of understanding of their role. Thus, some families received a reduced service.

In Lancashire, a nurse-led model is implemented, and it was jointly agreed by the three pan-Lancashire Safeguarding Children’s Boards (LSCBs) to continue this, with CCG funding to expand the nurse-led service to a seven-day service. The aim being, through providing strong nurse leadership, and working closely with the Police and partner agencies, unwarranted variation would be reduced and standards met.

How to change

A SUDC Steering Group was utilised to agree the expansion of the SUDC Service. The intention was that the model would increase the capacity of the SUDC nurses to optimally respond to the number of deaths. In 2016, the Royal College of Pathologists published the “Sudden unexpected death in infancy and childhood” and subsequently the Child Death Review Guidance (2018) was published. These set out key features of what good practice in this area should look like and the nursing leadership team began planning the new delivery model. The expansion of the service allows the SUDC nurses to follow the recommended guidance when undertaking a child death response as well as to work in line with statutory guidance, which aims to standardise practice nationally and enables thematic learning to prevent future deaths.

With the support of funding, the SUDC Nurse Service became a three-nurse team. This allows 7-day coverage, which ensures that a nurse is always available to either undertake the Rapid Response at the time of the child’s death or the next day. This ensures that all families receive a timely response from a SUDC nurse. Subsequently, a thorough health history can be obtained, a comprehensive analysis of the circumstances, a health history can be provided to the Pathologist and Coroner and families receive a better quality of support and access to services from the outset rather than waits for services and a holistic approach.

The seven-day SUDC Service now ensures:

• Families will receive the support and care from health services;
• Rapid Responses will be increased and improved, providing a thorough joint investigation from the outset;
• The SUDC Service will be compliant with statutory and best practice guidance;
• There will be an improvement in identifying contributory factors, public health issues and learning lessons, therefore preventing future unexpected child deaths.

The SUDC nurses work alongside the Child Death Overview Panel (CDOP) to undertake regular audits and reviews to identify any opportunities to prevent sudden deaths. Any campaigns or public health measures stemming from these findings are evidenced based, and driven by research.

The improvements in the SUDC nurse-led service has increased capacity for awareness raising and contributed to training events across pan-Lancashire for agencies and organisations that may be involved in the Rapid Response process. This supports health care providers and multi-agency partners to embed the SUDC protocol within their own service.

Adding value

Better outcomes – By standardising the response, the SUDC nurse is now able to gather the necessary information to inform the Pathologist and Coroner of factors contributing to a cause of death. This process includes:

• attendance at A&E with the Police;
• examination of the deceased child;
• taking a first account from the parents;
• undertaking a scene visit;
• chairing an initial multi-agency meeting.

The SUDC nurses can identify key themes and trends in relation to the unexpected deaths in Lancashire and due to increased capacity are able to contribute more to public health measures and preventative strategies. It is anticipated that this enhanced service will continue to improve service(s) for parents, increase understanding of why children die (due to joint investigations on all cases) and in the longer term will assist in reducing the incidence of preventable child deaths.

Better experience – The service improvements have been well received. Feedback includes:

• Parental feedback via the Police – ‘I spoke with **** today, she was at pains to tell me what a fantastic support you have been to her throughout and how much easier it was to speak to you than any others including family’.
• Parental feedback via email – ‘**** and I would just like to thank you for everything you have done for us and helped us to get to this closure. We couldn’t have got here without you’.
• Parental feedback during a home visit – ‘Thank you for supporting us for as long as you have. It’s been so difficult, but you have guided us through every process, including attending the Inquest and registering the death…we could not have got through this without your support…but most of all you have listened when we have been sad, upset, angry and lost…always at the end of the phone. Thank you for everything’.
• Patient Experience Manager NHS England – ‘Thank you for your work in supporting families through these often-tragic circumstances’.
• Safeguarding Practitioner – ‘I have learnt a lot about your role as a SUDC nurse and some of which I was a little wowed at, at the depth you became involved. The training was very enjoyable, thought provoking and very insightful learning’.
• Coroner comments – ‘Further to receiving your helpful report in this matter the Coroner is now to give some consideration to obtaining an independent report in relation to ****’s death’.

Staff have also anecdotally reported they feel more included in child death processes and investigations that may arise, therefore feeling more empowered to embed any learning into practice.

Better use of resources – The expanded nurse-led SUDC Service is a cost-effective resource. Utilising the skills of experienced senior nurses is effective, efficient and provides the appropriate expertise in managing often complex cases. The extension to an ‘out of hours’ SUDC service has also released resources within the ‘in hours’ services which can be used to support and care for families during this difficult time.

Challenges and lessons learnt for implementation

As this is a pan-Lancashire Service, data is more widely available from across the county. This helps to identify themes and trends and the wider determinants on health, in all cases.

A challenge has been that the human resources processes are comprehensive and take time to be completed. Although this was necessary to get the right people in post and to ensure that the service was sustainable and fit for purpose, it can delay timescales if not taken into consideration.

The SUDC nurses are currently considering digital, joined up solutions to sharing information with the Police, including data being recorded and how this can be more joined up and meaningful to influence practice.

Find out more

For more information contact:

• Joanne Birch, pan-Lancashire Lead SUDC Nurse, Lancashire Care NHS Foundation Trust, joanne.birch@lancashirecare.nhs.uk