Neonatal Expenses Fund year one: evaluation

1. Introduction

Background

This report presents the findings of a process evaluation of the Neonatal Expenses Fund (NEF) during its first year of implementation. The NEF was launched in Scotland on April 1^st 2018, with £1.5 million committed to the fund over the first twelve months.

In 2017 The Best Start: A Five Year Plan for Maternity and Neonatal Care in Scotland recommended that a review of the approach to family expenses be carried out to reduce variation across Scotland. BIiss, the neonatal charity in its 2014 report ‘It’s not a game: the very real costs of having a premature or sick baby - Scotland^[1]’ estimated the additional cost in Scotland for parents of babies in neonatal care is £218 a week (of £282 for UK), and an average extra total cost of £2,045 (£2,256 for UK) over their baby’s entire stay in hospital. This was based on a 2013 survey that received 1300 responses in total of which 85 were from Scottish parents. The costs incurred include items such as food, accommodation, parking charges, and costs of childcare for older siblings.

The Neonatal Expenses Fund (NEF) was launched on 1st April 2018 and is designed to help parents of premature and sick new born babies who require neonatal care to offset their costs of travelling to and from hospital and subsistence during first days, weeks and months of their babies’ lives. All parents whose children have been admitted to a neonatal intensive care unit, a local neonatal unit or a special care baby unit are entitled to claim expenses from the NEF. These expenses are intended to offset the cost of travel to visit their baby in hospital and the cost of eating their meals at the neonatal unit.

Parents/guardians can claim for travel and parking, as well as a food allowance of up to £8.50 per day for meals eaten while visiting their baby. Parents/guardians can choose whether to make multiple claims during their baby’s stay in the neonatal unit, or to claim for their entire stay when their baby is discharged from hospital.

The NEF is distributed by all 14 territorial NHS health boards, with parents being reimbursed by the health board in which they reside for their expenses.

Aims and Objectives

This process evaluation aimed to examine the uptake of the NEF over its first year of implementation and to evaluate the process of claiming from the fund.

The specific objectives were:

• To describe the uptake of the NEF during its first year across Scotland;
• To understand parents’ perceptions of the value of the NEF and its effect on their lives;
• To understand parents’ reasons for choosing whether or not to claim from the NEF, to understand any barriers to take-up, and to make recommendations on how take-up can be improved;
• To evaluate the NEF’s implementation processes and make recommendations on how these can be improved.