Establishing a Bereavement Care Team by Maddie and Elle (St Michael’s Hospital, UHBW)

Losing a baby is a very difficult time but the hard work of nurses like Maddie and Elle offers families support and comfort when they need it most. Read their blog below to find out more about how they are helping families at St Michael’s Hospital, UHBW deal with their grief following the loss of a pregnancy or newborn.

Establishing a Bereavement Care Team – The Beginning…

We would like to start by introducing ourselves. My name is Maddie and I am the Neonatal Nurse half of the Snowdrop Bereavement team, and Elle is the Midwife half of the team. Together we make up the new Snowdrop Bereavement team at St Michael’s hospital at the University Hospitals Bristol and Weston NHS Foundation Trust (UHBW).

We are the first joint perinatal bereavement team in England.

The Snowdrop Team – What Do We Do?

We care for families who suffer a loss of a baby in our hospital from 16 weeks gestation right through to neonatal deaths within the first two weeks of life. We have a Maternity, and Loss team (MaLT) in the hospital that can provide support around losses pre-16 weeks and there is support within the Neonatal Intensive Care Unit (NICU) after the first two weeks of life, so we could see the gap in support that our team could naturally fill for families.  

We are the main point of contact for bereaved parents; they have access to our Snowdrop mobile number and email address, which they can contact at any time. We tell them that we will only be able to respond within working hours but if they want to message us at 2am then they are very welcome to. It is usually the time when you are laid awake thinking of all the questions you want to ask.

We aim to visit parents before discharge from hospital, so they get to meet us face to face, then follow up with a mixture of text messages, phone calls or a home visit, depending on what they feel is most suitable for them.

We are trying to make our support as personalised for parents as possible as different people want and need different things following a loss. Everyone has access to the services we offer. Patients can choose which services to engage with and at what point. We support them at clinic appointments, at follow up reviews, discussing funeral options and memory making with them alongside supporting staff to do the same. If families feel like they need a bit of continuity and extra care in a subsequent pregnancy following a loss, we provide that, too.

Setting up the Service

Neonatal bereavement as a service is still in its infancy. There are only currently 10 specific neonatal bereavement positions across England (although there are many more maternity bereavement teams), even though we see around 1,000 bereavements a year in Bristol due to miscarriages, stillbirths, Termination of Pregnancy for Fetal Anomaly (ToPFA) and neonatal deaths alone.

The Ockenden and Kirkup reviews, as well as UHBW signing up to the National Bereavement Care Pathway, demonstrated the need for Snowdrop. Initially it was to be maternity focused, but recognising the needs of patients, and with funding available, the neonatal team helped expand the service to include support for parents who suffer a loss after birth on the neonatal unit making it a joint perinatal team.

We are the first dedicated bereavement team at St. Michael’s Hospital which meant we didn’t have a blueprint to work from. This was both exciting and filled with many steep learning curves along the way.

Both Elle and I cover the hospital’s bereavement service Monday to Friday within normal office hours. We know what we want the service to offer to patients and families in the future, but we are starting small and manageable, and will work towards what we want to achieve.  

We have visited many different bereavement teams, maternity centres, and neonatal units at providers to see how they have run their service and to pick up great ideas. As they say – there is no need to reinvent the wheel. So, thank you to you all – you know who you are – we appreciate all the help you have given us.

Here are our three top tips we have learnt from different units:

  1. Make friends with everyone across the hospital and they will always return the favour. You need contacts in lots of different areas, and you never know when you may need their help.
  2. With all the other amazing and vital care services available can be easy to get lost in the noise. Maternity and Neonatal bereavement teams are understandably not widely advertised but be proud and share with colleagues what the team provides patients and the difference it makes to families.
  3. Have an end goal but focus on the present. It’s great to have a vision but you can only take small steps to get there. Don’t judge yourself on a different unit that has a well-established bereavement team and everything that they can provide. In five years’ time that will be us – but we need to take the time to get there.

As a new, first of its kind service establishing itself we have faced some logistical challenges, but we have been kindly supported by colleagues and other teams with equipment, space, and expertise.

When we first started out, we did spend a lot of time hot desking around various meeting rooms. Now we have an office. We’ve made it our own and we are happy with it. We even have an official door sign coming which we are very excited about!

Our new line manager has just started, and she is great. It’s lovely to have that person to rely on for support and ask all the simple questions. She has a wealth of knowledge of different areas of patient safety that we can tap in to. We also want to say a huge thank you to our lead consultants who have supported us so amazingly since we started this journey.

The Snowdrop Team is officially launched, and we are both so proud of what we are achieved already. Although it is 75% terrifying and 25% exciting!  We can’t wait to continue to grow the service and offer bereaved families the support they need. If anyone starting up a similar service wants to reach out to us, please do! We wouldn’t be where we are now without advice and support from the teams we worked with, and we’d delighted to share what we’ve learnt to support others too.

Dräger is incredibly proud to support the NNA by sponsoring the NNA Shared Learning & Best Practice in Neonatal Care Scholarship.

Dräger is an international leader in the fields of medical and safety technology.

Visit the Dräger website:: https://www.draeger.com/en_uk/Home

The Kate Farrer Foundation was established in memory of Dr Kate Farrer, a distinguished neonatal consultant at Addenbrooke’s Hospital and Transport Lead for the East of England. Sadly, Kate died in 2014 following a short illness. Her family set up a foundation in her name & have funded the Kate Farrer Scholarship since 2021.

Visit the Kate Farrer Foundation website: http://www.katefarrer.org/

The NNA is a member of the Council of International Neonatal Nurses (COINN) who we collaborate and partner with closely. COINN is a global organization that represents nurses who specialize in the care of newborn infants and their families. As a COINN partner, the NNA and its members are part of an international community and voice of neonatal nurses across the world. NNA members are automatically joined to COINN membership and can be a valued and integral part of this global voice.

Visit COINN: https://www.coinnurses.org/

Armstrong Medical is the proud sponsor of the NNA Team of the Year Award. Now part of Eakin Healthcare, the company supports neonatal teams across the world, working closely to understand the challenges and pressures faced.  The company join the NNA praising Neonatal teams for their inspirational work as they deliver care to the tiniest and most vulnerable patients.

Armstrong Medical provide options for heated resus, invasive and non-invasive ventilation. NeoFlow® is a complete range of critical and supportive respiratory solutions, designed to give neonates the best possible start in life, from their very first breath.

Visit the  Armstrong Medical website:

https://www.armstrongmedical.net/care-areas/neonatal-critical-care/

vCreate Diaries is a secure video messaging service providing reassurance to parents in NICUs. The vCreate team is working with us on awareness campaigns, communications and video projects to support families during their neonatal journeys.

Visit the vCreate website:: www.vcreate.tv/diaries

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