The best start: five-year plan for maternity and neonatal care

Chapter Six: Implications For Neonatal Care

Outcomes for preterm and sick newborns have improved significantly over the last 20 years with enormous advances in care. More babies survive than ever before, but for some this will involve months of highly specialised medical and nursing care. The majority of babies leave neonatal care without any lasting problems, a testament to our neonatal nurses and doctors.

6.1 Neonatal care

There are a wide range of different needs associated with the provision of neonatal care, ranging from routine baby care at home or in a midwife birthing unit, to the most highly specialised neonatal intensive care.

Maintaining high standards of neonatal care is an ongoing challenge, particularly as some specialist experience, complex, expensive equipment and procedures may only be required infrequently for a few, very unwell, babies. Such complex care will necessarily only be available in a few centres. It is important that we review neonatal services to ensure that all babies born in Scotland receive the correct and most up to date care, provided by appropriately trained staff.

Depending on their care requirements, the majority of babies who need some additional care after birth could have this care provided on a postnatal ward with their mother, or in a neonatal unit with high dependency and special care cots. Some babies need short term intensive care as part of their neonatal stay. There are only a few babies that need highly specialised neonatal intensive care. For these babies, the complexity of neonatal intensive care has increased, particularly for those babies (but not exclusively) born at extremes of prematurity or with extremely low birth weights, those babies requiring complex modes of ventilation and nitric oxide and/or extracorporeal life support, and babies requiring complex surgery.

In addition, an effective allied health professional service can improve outcomes for neonates, in particular the high-risk neonates, and should be universally available, including (but not exclusively) physiotherapy, psychology, and dietetic services.

Parents and staff have spoken with great pride about Scottish neonatal care and the life-saving services that are provided with care and compassion. In particular, parents appreciate the multidisciplinary neonatal team working effectively together to share information and care planning with parents. This approach contributed enormously to parents' experience and allowed them to feel more involved in their baby's care and decision-making.

'From trainee nurses to consultants, the staff made us feel comfortable discussing our baby's care.

They explained things without being patronising and involved us in decisions.'

Maternity and Neonatal Review: Neonatal Survey 2016

In all models of neonatal care, there will be a need for the transfer of some babies outwith their immediate local area to access specialist neonatal care. Many of these babies will have been identified antenatally and, wherever possible, the mother should be moved before birth to the nearest centre where the appropriate level of care can be provided for her and her baby. The acute and unpredictable nature of neonatal intensive care means that smaller units are likely to experience more pressures on cot availability, which has led to increased transfer of mothers and babies. The new model of neonatal care must seek to minimise unnecessary transfers of mothers and babies whilst ensuring that, when they do need to be moved, this is undertaken as quickly and efficiently as possible, and that mothers continue to receive high quality midwifery and obstetric care.

6.2 The new model of family-centred neonatal care

The new model of neonatal service delivery must have family-centred care at its heart. This includes the fundamental principles of keeping mother and baby together, positioning parents as partners in decision-making around the baby's care, parents providing as much care as possible for their own babies, and having regular communication between partners and clinical staff.

The key features of the proposed redesigned family-centred model are:

• The further development of a model of neonatal care across Scotland that keeps mothers and babies together in a postnatal ward when the baby has modest additional care needs, and minimises the need for admission to a neonatal unit.
• The provision of care for all babies as near to home as possible, while recognising that a small number of the most vulnerable preterm babies and the sickest term babies in need of complex care will receive some of their neonatal care in one of a smaller number of neonatal intensive care units. When this happens parents will be supported to be with their babies.
• The development of clear, agreed pathways for babies to be returned to their local or special care neonatal unit (or, if possible, home), following treatment in a neonatal intensive care unit or local neonatal unit.

 

• Parents must be involved in decision-making throughout and particularly in the practical aspects of care as much as possible. This includes encouraging kangaroo skin-to-skin care and early support for breastfeeding.
• The provision of support and facilities to allow parents to spend as much time with their babies as possible while they are in neonatal care, including the provision of overnight accommodation.
• The development of a model of early discharge for babies who have additional care needs who can be safely managed in the community.

This model of neonatal care is designed to meet the needs of all babies, from healthy newborns who will be cared for at home or in midwifery units with their mother, newborns with additional care needs who can be looked after in a postnatal ward or midwifery unit by specially trained midwives assisted by neonatal unit staff, to the sickest babies who require highly specialised care in a neonatal intensive care unit.

It is recognised that twins and multiple births are more likely to require neonatal care. This can be very challenging for parents, particularly where babies need different levels of care and one may need transferred, for example for neonatal surgery. Units should aim as far as possible to keep twins or multiples together to enable parents to be with and participate in care of both/all babies.

When a baby and mother are transferred from their intended place of birth to receive additional care, the principle will be that they are transferred back nearer home as soon as possible. For all babies, the aim will be early discharge home, and when this is not feasible, care in a local neonatal or special care baby unit. It is anticipated that this model of neonatal care will result in shorter stays in neonatal intensive care units for the majority of babies who require this care, and fewer overall days spent in neonatal care.

6.3 Neonatal intensive care

Currently, neonatal units provide different levels of neonatal care in Scotland, ranging from level three (neonatal intensive care) to level one (least intense, or special care). Scotland currently has eight designated level three units providing care to the smallest and most preterm babies. A small number of babies with the most complex conditions (mostly those requiring neonatal surgery) receive part, or all, of their neonatal care in one of the three neonatal intensive care units in Scotland which also provide neonatal surgical services.

To promote consistency of practice and benchmarking with other units across the UK, the new model of neonatal care for Scotland should be based on the British Association of Perinatal Medicine ( BAPM) definitions of neonatal units. BAPM describes neonatal intensive care units, local neonatal units (currently designated level two in Scotland) and special care units.

Evidence from our review of evidence on neonatal models of care clearly shows that outcomes for very low birth weight babies ( VLBW), both in terms of survival and longer term neurodevelopmental outcomes are better when they are delivered and/or treated in neonatal intensive care units with full support services, experienced staff and a critical mass of activity ^[54] .

Consistent with other medical and surgical specialities, consolidating services for highly specialised, low volume neonatal care helps to ensure staff competencies and best clinical practice. Based on published evidence, the professional consensus is that future models of neonatal care should be designed to ensure that designated neonatal intensive care units care for a minimum of 100 VLBW babies per year ( VLBW is defined in this context as less than 1500g) and are suitably experienced in caring for babies who need help with breathing (the latter is measured as respiratory care days per year). Two thousand respiratory care days per year has been proposed as an appropriate volume of practice for a modern neonatal intensive care unit.

During the Review, NHS Boards provided data on gestational age, birth weight, and days during which respiratory support was provided. The data indicated that babies needing highly specialised neonatal intensive care in Scotland should receive at least part of their care in a much smaller number of units than is current practice. This includes, but not exclusively, extremely low birth weight babies and those requiring complex or extended respiratory support.

Following the principles outlined within the National Clinical Strategy for Scotland: 2016, the evidence from models of neonatal care in similarly sized populations, workforce issues, and current building provision in Scotland, it is proposed that three to five neonatal intensive care units should be the immediate model for Scotland, progressing to three units within five years.

The move to three neonatal intensive care units should be phased in recognition of the co-dependencies between maternity and neonatal care, and will require further detailed work to consider and develop capacity for additional babies and facilities for parents. Ultimately, the smaller number of designated neonatal intensive care units will lead to improved staff competencies and best clinical practice in these units and safer care for the babies most at risk.

The remaining neonatal units will be re-profiled to provide local neonatal care and special care for less sick infants and babies who no longer need neonatal intensive care. Local neonatal units will continue to carry out low risk neonatal intensive care, however care for the highest risk preterm babies and the sickest term babies in need of complex care will be in a smaller number of neonatal intensive care units. The provision of care in all categories of neonatal care in Scotland will remain under review, as aspects of care presently provided in neonatal intensive care units may, in time, be effectively delivered in local neonatal units.

In order to ensure that families are fully informed and included in the care of their baby and in the important decisions about that care, it will be essential that excellent communication and information is uniformly available to all parents in all neonatal units in Scotland. Formal mechanisms to agree the streamlined pathways should be developed and agreed in order to minimise variation and ensure all elements of the pathway are clearly understood by all care providers.

6.4 Proposed levels of neonatal care in Scotland

It is proposed that the current total number of 15 neonatal units is retained, with three to five units being re-profiled as neonatal intensive care units and the remaining 10-12 units being designated as local neonatal units or special care units.

Special Care Units

All neonatal units in Scotland will provide special care for their local population, and units who only provide this level of care will be designated as special care units.

Local Neonatal Units

These units will care for the majority of babies who need low-risk intensive care, high dependency care and special care, keeping the family together and as close to home as possible.

Neonatal Intensive Care Units

Three to five neonatal units in Scotland will be designated as neonatal intensive care units.

These will offer highly specialised neonatal intensive care in addition to providing conventional neonatal unit services for their local babies and families. A very small number of babies will need this level of specialist neonatal intensive care, and most will require a relatively short period of neonatal intensive care before they can be transferred back to their local or special care neonatal unit.

	Definition	Staff and carers
Postnatal Neonatal Care	These cots are located in maternity wards and provide care for mothers and for babies side-by-side with additional care needs, including: Thermoregulation Additional support to establish breastfeeding Phototherapy for jaundice	Primarily parents Midwives Neonatal support staff Neonatal nurses AHPs
Special Care Units	These units provide special care for their own local population. They also provide, by agreement with their neonatal network, some high dependency services.	Primarily parents Neonatal support staff Neonatal nurses ANNPs General paediatricians AHPs
Local Neonatal Unit	These units provide special care and high dependency care and a restricted volume of intensive care (as agreed locally) and would expect to transfer babies who require complex or longer-term intensive care to a Neonatal Intensive Care Unit.	Parents Neonatal support staff Neonatal nurses ANNPs General paediatricians with a special interest in neonatology Neonatologists AHPs
Neonatal Intensive Care Centre	These units are larger intensive care units that provide the full range of medical (and sometimes surgical) neonatal care for their local population and additional care for babies and their families referred from the neonatal network in which they are based, and also from other networks when necessary to deal with peaks of demand or requests for specialist care not available elsewhere. Many will be sited within perinatal centres that are able to offer similarly complex obstetric care. These units will also require close working arrangements with all of the relevant paediatric sub-specialties.	Parents Neonatal nurses ANNPs Neonatologists AHPs

RECOMMENDATIONS
43	Parents should be involved in decision-making throughout and involved in practical aspects of care as much as possible. This includes the provision of facilities for overnight accommodation, encouraging kangaroo skin-to-skin care and early support for breastfeeding.
44	New models of neonatal care should be based on the BAPM definitions to increase consistency of practice and facilitate benchmarking with other neonatal units across the UK.
45	The new model of neonatal services should be redesigned to accommodate the current levels of demand, with a smaller number of intensive care neonatal units, supported by local neonatal and special care units. Formal pathways should be developed between these units to ensure that clear agreements are in place to treat the highest risk preterm babies and the sickest term babies in need of complex care in fewer centres, while returning babies to their local area as soon as clinically appropriate. Three to five neonatal intensive care units should be developed, supported by 10 to 12 local neonatal and special care units.
46	Excellent communication processes should be developed between neonatal units and parents to ensure a full understanding of the care pathways for babies. Consistent, standardised information will also be developed to ensure all parents are aware of the options for their baby, in particular for those parents whose babies might have all or part of their care outwith their local unit.

6.5 Getting babies home

6.5.1 Transfer support to neonatal units

Moving babies with complex needs back to their local neonatal or special care unit is important to keep families together and as close to home as possible.

Local neonatal units need to be supported to provide ongoing care for those babies who have received part of their care in a neonatal intensive care unit. An effective allied health professional service can improve outcomes for high-risk neonates and should be universally available, including (but not exclusively) physiotherapy, psychology, and dietetic services.

There should be an agreed framework for practice to support the development of consistent and equitable specialty paediatric and allied health professional outreach support for local neonatal units from larger units, and NHS Boards would have to work flexibly to accommodate this approach.

6.5.2 Early discharge into community care

Many babies requiring special care could be discharged home earlier if there was an appropriate neonatal/paediatric community service in place. This service does currently exist in some areas however a national Scotland-wide model for a seven-day neonatal/paediatric community service should be developed, with close links to GP services locally, in line with evidence and experience from other networks in the UK.

There should be an appropriate skill mix, robust guidelines and medical support to facilitate early discharge and ongoing care pathways, supported by a consistent approach to audit and service improvement. The model should consider regional working to support provision of cover for a number of units.

6.5.3 Post discharge follow up of high risk babies

Neonatal care should continue once the baby is discharged home. A follow up process, supported by clear guidelines, supports mothers and their babies following discharge and may facilitate earlier discharge. A model for post discharge follow up should be developed by the Managed Clinical Network in line with the NICE recommendations that will be published soon.

6.6 Quality and safety - standardising practice in neonatal care

Whilst some variation in practice between neonatal units is expected, this should be kept to a minimum. A national level group should be established to develop national Frameworks for Practice for Scotland, which are evidence-based and describe minimum acceptable standards for newborn care, recognising that there may be a need for some local variation. Based on these frameworks, all neonatal units should develop clear pathways for newborn care and referral, and parents should see consistency of practice as they move between neonatal units. These frameworks and pathways should be hosted on a national website and accessible to parents and staff.

RECOMMENDATIONS
47	A national Framework for Practice should be developed which outlines clear pathways for newborn care and referral. This framework should also support the development of consistent and equitable specialty paediatric and allied health professional support for local neonatal units.
48	A national model for a seven-day neonatal community service should be developed, with appropriate skill mix, robust guidelines and medical support to support early facilitated discharge and ongoing care pathways.
49	Robust guidelines and follow up processes should be developed for post-discharge babies across Scotland.

6.7 Developing the workforce in neonatal care

Staff outlined the growing importance of the Advanced Neonatal Nurse Practitioners ( ANNP) role in neonatal units. There is some degree of variability in their roles between neonatal units, but, in general, ANNPs have enhanced skills to provide senior level leadership, including middle grade cover in some areas. These highly skilled members of staff are a real asset to the current neonatal workforce and further development of these roles would be beneficial to the overall service.

Neonatal Nursing Qualified in Speciality and Advanced Practice education has been available in Scotland for a number of years, and should continue to be available and quality assured to ensure it meets course requirements and the demands of the new model of care.

The Review group also considered the varied roles of non-registered staff working in neonatal services who deliver a significant proportion of the care in neonatal units and transitional care settings. Support staff have an invaluable role in the care of women and their babies. There is a clear need to build on their role and enhance their educational opportunities and the existing competency framework, to reflect their potential contribution to the new postnatal neonatal care model, working in both maternity and neonatal settings.

Under the proposed new model, consultant medical care of babies in a local neonatal unit as well as in special care units may be delivered, at least in part, by general paediatricians with a specialist interest in neonatology.

To support the changing role of local neonatal units in the new model, there needs to be an increase in the numbers of doctors in training to be General Paediatricians with a special interest in neonatology. The Royal College of Paediatrics and Child Health has developed a new Special Interest in Neonatology ^[55] ( SPIN) module for Paediatricians that will support training to meet requirements.

Staff in smaller neonatal units will need a different skill set compared to staff in larger units, which will include a broader base of skills and specific training to deal with a range of emergencies. For these staff it is essential that networks are developed to provide support, skills maintenance and training through regularised rotation into larger units. The neonatal Managed Clinical Networks should play the primary role in designing and supporting a formalised and structured approach to rotation and skills maintenance.

To support the neonatal model of care, a specialist support pathway should be planned and developed by each neonatal unit for each of the paediatric specialties and allied health professionals that contribute to neonatal care.

The support should include direct attendance at units, use of telemedicine for multi-disciplinary team reviews and attendance at outpatient clinics. The support should be built in to the workforce planning model to ensure it is afforded a clear priority and is appropriately resourced on a routine basis.

RECOMMENDATIONS
50	The role of ANNP staff should be reviewed to ensure their skill set is maximised, with a clear training and development support mechanism to retain and develop staff.
51	Neonatal Nursing Qualified in Speciality and Advanced Practice education should continue to be available and quality assured to ensure it meets course requirements and the demands of the new models of care.
51	Non-registered neonatal staff should have a clear role definition, competency framework and training and skills pathway to ensure they can work flexibly across all aspects of care.
53	Workforce planning processes should be reviewed to ensure adequate numbers of general paediatricians with a special interest in neonatology are being trained to deliver this service in the future.
54	A formalised and structured approach to rotation and skills maintenance for staff in smaller units should be developed and resourced through the appropriate Managed Clinical Network.

Supporting Families in the Community

Families look forward to taking their baby home from a neonatal unit as soon as possible but this can also be a daunting time. The Neonatal Community Liaison service in NHS Tayside offer support to families who have babies going home with a nursing need. This can range from home oxygen, to naso gastric tube feeding, to general support with a premature baby.

Families' feedback has shown their appreciation of the service through having the support of home visits, phone advice and being able to text the liaison nurses. They find this reassuring that they have a point of contact if they are unsure of any aspect of care.

One family whose baby went home on home oxygen said:

'Our nurse was always available to offer support, either through a visit, or at the end of the phone. This was very reassuring for us, as our twin girls were born very premature, and spent three months in NICU. It was scary taking them home, they were not only small, premature and vulnerable, but one of the twins had extra equipment, which we had to learn how to operate and cope with. My daughter is off oxygen now and is doing really well. I still find it comforting that the nurse keeps in touch now and again to see if we are still doing ok. The service provided is amazing.'

This family thrived in the community, they lived quite a distance from the hospital and mum did not drive. One twin was discharged home first and this caused huge separation issues and logistical problems getting back to hospital to visit their other daughter. To get their twins home, and have the support in the community, hugely reduced their stress and anxieties.

Another family taking their baby home with a cardiac condition and naso gastric tube feeding commented:

'I was desperate to get home but was anxious regarding my baby's condition. With the help of the liaison nurses, whom I had met in the hospital prior to going home, they went over a discharge plan to allow me to gain knowledge and confidence to take my son home. I knew I could contact them either via phone or text, and that they would be available to answer my questions, reassure me and would also provide a home visit. This helped reduce my anxiety and give me the confidence to look after my son at home.'