One in eight babies born in England or Wales will be admitted to a neonatal unit which specialises in looking after babies who are born too early, with a low birth weight, or who have a medical condition requiring specialist treatment.
This means that around 80,000 families (some will have multiple births – twins / triplets) will be affected. No parent when planning their pregnancy and ultimately delivery of their newborn baby wishes to be separated immediately after birth, but the new Bliss report Families kept apart: barriers to parents involvement in the baby’s hospital care highlights the lack of support services and facilities available to parents on neonatal units; separating thousands of new parents from their sick and premature babies. This is shocking and unacceptable in 2016.
I have been a neonatal nurse since 1990 and have witnessed the great advances in the medical and nursing management of this vulnerable population of newborn babies, many surviving due to these developments. I have also witnessed the harrowing psychological, social and financial challenges and disadvantages for these parents. Through no fault of their own, families are thrust into a situation which is highly technical and with alien medical terminology, when what they wish most for is to touch, hold and protect their newborn baby.
The 2003 neonatal services review resulted in the development of three types of neonatal units. The most premature and sick newborn babies are transferred to Neonatal Intensive Care Units (NICU), less premature or unwell to Local Neonatal Units (LNU) and the least premature cared for in Special Care Units (SCU). The ethos is to care for ‘the right baby in the right cot at the right time’ and this strategy does improves outcomes and survival rates for the baby.
However, the reality for parents is that their baby may be transferred to a NICU several hours drive away from their home and removes them from their family support. Added to that, they may also experience care in several units during their baby’s neonatal journey if they also require surgery or need to be transferred to another unit for a different reason and so must flex and adapt in what is the most stressful time of their lives. These parents are stripped of all autonomy, are vulnerable, frightened and at this time they need a ‘home from home’, that is, suitable accommodation, food, kitchen and cooking facilities, laundry and washing facilities and free parking to alleviate the trauma and expense experienced. However, what Bliss' recent report highlights is that basic needs are not always being met by hospital trusts and lack of support services keeps thousands of parents from their babies. This minimal support would not be tolerated in Paediatrics, therefore why is it acceptable for parents of newly born babies to be compromised in this way?
Neonatal care is expensive and the budget for all specialised services in the NHS is reported as £14.6 billion. However, the monies coming to hospital trusts are used mainly for workforce, equipment and services. What must also be addressed is that one of the aims of the service specification for neonatal critical care is ‘to provide a family-centered approach to care, defined as ‘involving families in the care of their own children’. The document goes on to direct providers to ‘minimise the physical and psychological impact of neonatal care on the baby and their family’. To achieve this aim, families must be accommodated and cared for close to their babies. This can only be achieved if specialised commissioning ensure contracts with hospital trusts are sufficient to adhere to the service specification and then audit and levy those trusts who do not provide the specified service.
The rationale to keep parents close to their sick or premature babies is not incidental. There is clear evidence that supporting parents to be the primary care givers in neonatal units improves attachment between babies and parents, maternal mental health is supported and breast feeding encouraged. This model of care is called Family Integrated Care (FiCARE) which also results in a reduction of infection rates and sees babies discharged earlier. The family unit is discharged healthy and functional and in the long term less of a burden on the NHS. Therefore, the investment in neonatal care is ‘value for money’ given the evidence that all hospital trusts should strive to accommodate and care for families of babies, however Bliss has exposed the lack of these support services in their report.
Some hospital trusts do provide full support services for parents and I am confident that this achievement is down to clear leadership and an ethos of keeping the baby and family at the centre of the care provided. It appears to be a lottery for parents that some are cared for appropriately and others made to suffer, which is not acceptable.
In my experience as Clinical Director of a NICU in a large hospital trust, the neonatal service is a ‘Cinderella service’ and it is a constant challenge to raise the profile of neonatal care with the finance and management teams. Most people, including hospital managers, when they think of babies it is the textbook rosy cheeked, healthy, bouncing baby that comes to mind. When they are exposed to an intensive care baby they often tell me they had no idea that babies required this intensity of care and often these mangers are the people commissioning and contracting neonatal care. Is it any wonder then that neonatal units battle to provide optimal support services for parents and families given that most ward managers are not involved in contracting?
Parents and families appear to take on the responsibility to create finance for the support service for NICU by constantly fundraising. They do this as they are grateful for the care their baby received, which is so humbling for me. One example is parents whose baby received care, including end of life care, in my unit and were so grateful for the support including accommodation on the unit that they, along with other parents, have supported a fundraising appeal to build a purpose built house for parents and have suggested the name Keep Me Close for the house. The parents felt close to their baby during their short life and felt that their baby felt close to them. Every parent deserves to be ‘kept close to their baby’ whether that is in their home or in hospital as it is their right.