Last year we heard from Jo Bennett, a neonatal nurse at University Hospitals Plymouth and NNA Neonatal Nurse of the Year 2022, who wrote a blog exploring palliative care and bereavement support. You can read Jo’s previous blog here.
Following on from my previous blog titled ‘Developing Bereavement Support’, I will continue with my sporting analogies, where bereavement support might be compared to a long-distance run, neonatal outreach could be said to be like a decathlon. Neonatal outreach can encompass many different aspects of care and outreach nurses just like a decathlete is skilled in all these aspects, including discharge planning and preparation, home oxygen, short term nasogastric tube feeding, safeguarding, palliative care and end of life care.
To be a neonatal outreach nurse was a long-term goal of mine. Not all neonatal units have a neonatal outreach service, but the need for it is absolute. Nearly 15 years ago we were able to develop our outreach service after a parent asked the question at a network board meeting “Why does the level 3 unit in the network not have an outreach service to support families?”. This I think highlights the importance of listening to families when thinking about service improvements.
At this time, two colleagues and I undertook the Community Care of the Neonate module with the University of Central Lancaster. This course on top of our years of experience working on the neonatal unit and transitional care, gave us the underpinning knowledge to commence the service pilot. Even though we have seen hundreds of families since, I can still remember the very first home visit I did when we started the service. I will never forget the privilege of being in their home and seeing first-hand what it can mean to a family having their baby home with them after months on the neonatal unit. This reaffirmed to me the importance of a neonatal outreach service in supporting families in the transition from hospital to home.
When I qualified as a nurse, I didn’t envisage years later being in the position of writing a business case but I was tasked with writing one for the neonatal outreach service. For anyone contemplating a business case, I would say access all the support you can to do so. I had great support from the trust business team and our directorate finance team with this, my first business case. From this we were commissioned as a 5 day/week service and then 3 years later with evidence gained through audit of cot blocking at weekends, we were increased to a 7 day/week service.
The support team on a neonatal unit can be immense and sometimes, just as with a sporting team, access to outside support can be beneficial. We heard about the Family and Baby (FaB) Project in the Wirral which involves inreach support from local children centre family support workers. We too linked with local children’s centres to develop this service. The FaB Project has been running locally now for eleven years. The support given to families from the family support workers has been amazing; from foodbank vouchers, support with filling out forms, breast pump loans, referral to local children centres for family support worker help to emotional support and book bags for all babies. They have also been a great asset in providing practical and emotional support for families in preparing for discharge home. The knowledge and skill set they have is very different to neonatal staff and offers different and comprehensive support to families.
The most important members of the infant’s care team are their parents or primary care givers, as such ensuring support for them is essential. The development of family integrated care is enhancing this. A few years ago, I was privileged to gain a Florence Nightingale Foundation scholarship, to go on tour and see family integrated care in action in Estonia and Canada. What I learnt there helped in initiating a peer support programme of parents who had experienced their own neonatal journey to support parents on the unit going through their journey.
I would encourage anyone looking at service development to apply for a scholarship. The NNA of course offers scholarships and there are also others such as the Florence Nightingale Foundation. I could not have achieved the learning and experience I gained through visiting these different places without the support of the travel scholarship.
Just as in a relay team where the baton is handed over to each athlete in turn to carry out their part of the race, so in neonatal care, the baton of care can be handed over to different teams as the baby progresses on their neonatal journey. For some families, the journey may be simple and not have so many different teams involved whilst for others their journey may include delivery suite, different neonatal units, neonatal transport, transitional care and neonatal outreach for example. At each stage we want to ensure a smooth handover of care. Families that go through transitional care may be admitted there avoiding admission to the neonatal unit or in step down care from the neonatal unit, either way minimising the separation of infant from their mother or primary caregiver. Transitional Care can work in collaboration with neonatal outreach in preparing families for home and facilitating earlier supported discharge. The value of both these services in the relay of neonatal care cannot be valued enough and the development of these services can enhance the neonatal journey for families.
I realise as I write this how many times, I have used the word ‘support’ but I think this is a key word in any health care setting but perhaps more so in neonates and paediatrics where we provide care not just for the patient but for the family too. If we look at recent reports such as Ockenden and Kirkup, some of what was highlighted was issues with lack of support to families. Compassionate and useful support compliments expert clinical care. We need the access to staff and services that can add to the care infants and families receive. This includes volunteers, peer support workers, clinical psychologists, counsellors, family support workers and of course primary care teams. To fully support families, we need to be working together to a common goal of the discharge home of a well infant and a healthy, happy family unit.