“Parents’ views of neonatal care must continue to drive improvements” – Caroline Davey, Chief Executive, Bliss
For any parent, having their baby admitted to a neonatal unit is a hugely traumatic experience. Being launched – in many cases quite unexpectedly – from happy preparations for a new arrival into the alien and highly medicalised world of neonatal care is incredibly stressful. It’s vital that parents are properly supported through this challenging time.
In light of how many families this affects – with around 80,000 babies admitted to neonatal care each year in the UK – it’s essential that parents are asked for feedback so that changes and improvements can be made to ensure that services are offering what they need.
Bliss, the UK charity for babies born too soon, too small or too sick, has therefore been pleased to work with the Picker on a neonatal survey designed to understand the experiences of parents whose babies receive neonatal care. The 2014 Survey, generously part-funded by NHS England and fully supported by Sir Bruce Keogh (Medical Director) and Jane Cummings (Chief Nursing Officer), was offered to all NHS trusts in England and taken up by 88 hospital neonatal units from 72 NHS trusts (as well as the neonatal services at Jersey General Hospital), with responses received from 6,000 parents.
Encouragingly, many of the findings are positive, with some of the highest scores for areas that parents tell us are most important to them: 92 per cent said they could definitely visit their baby on the neonatal unit as much as they wanted, 91 per cent said they were able to see their baby as soon as they wanted after admission to the unit, and 87 per cent said they always or nearly always had confidence and trust in the staff caring for their baby – all absolutely crucial for parents at such an anxious time. There is also clear evidence of support for parents to play a full role in caring for their baby, with high scores for a number of aspects of family-centred care, which research tells us is so important to deliver improved health outcomes for babies. 81 per cent of parents surveyed said that staff definitely helped them feel confident in caring for their baby, and the same proportion said they were definitely involved as much as they wanted in the day-to-day care of their baby (such as nappy-changing and feeding).
However, in other areas there is further work to do to ensure that all parents have the opportunity to be involved in every aspect of their baby’s care: for example, while 72 per cent of parents said they were always or nearly always allowed to be present when their baby was being discussed during a ward round, 12 per cent said they were not allowed into these critical discussions. Most importantly, while 60 per cent of parents said they definitely had as much skin-to-skin contact with their baby as they wanted (and a further 22 per cent said they did to some extent), one in six (16 per cent) said they did not; and this despite clear evidence that skin-to-skin contact is one of the most powerful ways that parents can support their baby’s health.
At Bliss we work closely with health professionals and neonatal units to support service improvement, and in particular we seek to support units to increase their involvement of parents in the delivery their baby’s care. Our Bliss Baby Charter sets out seven core standards which summarise the care, respect and support that vulnerable babies and their parents should receive while in hospital. The accompanying audit tool and accreditation process are designed to assist hospital staff in assessing how well they are delivering against these standards. These survey findings reinforce the value of this work, and the need for Bliss to redouble our efforts to work with more neonatal units. This will ensure that all are able to access our support and in turn that all parents are supported to be fully involved in their baby’s care, whichever neonatal unit they are in.
There is challenge, too, for Bliss in some of the lowest scoring areas of the survey: 30 per cent of parents surveyed said they did not get any information about parent support groups such as Bliss; over a third (37 per cent) said they did not receive any – or not enough – written information to help them understand their baby’s condition and treatment; and almost half (46 per cent) said they were not given enough information about help they could get with expenses related to their baby’s stay in the neonatal unit.
As the UK’s leading neonatal charity – with a wealth of written information and support available for parents it is clear that we must do much more to reach every neonatal unit and every family with our services. We know from those we do reach just how valuable this support can be on their neonatal journey.
As we embark on developing our next three-year strategy these findings can help guide our work in delivering our charitable purpose: to ensure that all babies born too soon, too small or sick in the UK have the best possible chance of survival and of reaching their full potential.