Families are frequently faced with extra costs while their baby is in neonatal care. At a time when they need to focus solely on their baby, they are instead worrying about the impact on their finances and how they will manage, particularly if they have to travel long distances to the unit their baby is in or if they have other children at home who need to be cared for as well.
Bliss Scotland research has highlighted that currently:
- On average, parents travel 35 miles to be with their baby. Some travel over 100 miles a day
- 1 in 3 parents said travel costs affected how often they could be with their baby
- Over half of all units do not have enough overnight accommodation for parents of critically ill babies
- 10 out of 12 units cannot help parents with food or drink costs
- Parents spend £218 extra per week to cover the cost of neonatal care
- 79% of parents are worse off as a result of their baby’s stay on a neonatal unit
For babies, and their families, to have the best possible outcomes it is essential that parents are able to be with their baby for long, uninterrupted periods of time in order to take the lead in delivering their care.
We’re asking supporters of Bliss Scotland to write to their MSPs to ask them to take action on this important issue to make sure that all parents can be with their babies on the unit when they need to be.
Almost a year ago the Scottish Government committed to an urgent review of the approach to expenses for families of babies in neonatal care.
In January 2017, the Scottish Government published The Best Start: A Five-Year Forward Plan for Maternity and Neonatal Care in Scotland which set out ambitious plans for neonatal and maternity services. This included proposals to reduce the number of Level 3 neonatal units, which provide intensive care for the sickest babies. While based on clinical evidence, these changes are likely to mean that more parents will travel longer distances to visit their babies in neonatal care – meaning the costs they incur will increase too. The Best Start also emphasises the importance of family centred care, which supports parents to provide as much care to their baby as possible.
In February 2017, Cabinet Health Minister Aileen Campbell stated that an implementation group would be established, and that priority recommendations will be progressed quickly, with a detailed plan and timetable for implementation over the five year delivery period to be provided. Nine months later, this timetable has not been provided. Of particular concern is the delay in taking forward Recommendation 8 of The Best Start, which states that 'an urgent review of the approach to expenses for families of babies in neonatal care should be undertaken to develop a nationally agreed policy'.
While Scotland’s Quality Framework for Neonatal Care sets out minimum requirements on units to provide support to families with accommodation, food and drink, these standards are well below those seen across the rest of the UK and are still not being met. This situation cannot continue.
Bliss Scotland is calling for the implementation of urgent, immediate solutions, as well as the delivery of longer-term recommendations made by The Best Start and the Bliss Scotland Baby Report: An opportunity to deliver improvements in neonatal care (2017). These include:
- The urgent creation of a Family Fund to address the Quality Framework requirement for provision of financial support for long-term admissions and/or long distance transfers.
- Swift implementation of the Scottish Government’s own pledge to urgently review the approach to expenses for families of babies in neonatal care and develop a nationally agreed policy.
- Local reviews at a unit level of current facilities for families to make sure that they are enabling parents to be with their baby for as much time as possible. Trusts should explore short term solutions such as meal vouchers, waiving parking fees, or partnerships with local hotels for accommodation if services cannot be provided on the unit.
- The level of family facilities that a unit provides to be a priority consideration for the Scottish Government when planning and implementing changes to the configuration of neonatal services in Scotland.
- A refresh of the Scottish Quality Framework to bring standards up to the same level as England and Wales and regular monitoring of how Trusts are meeting these standards.
Write to your MSPs to ask them to act to provide parents with the support that they need to care for their baby on a neonatal unit.