Neonatal Expenses Fund year one: evaluation

3. Findings

3. a. Spending on the Neonatal Expenses Fund

In total, £235,220.70 was spent on the Neonatal Expenses Fund across Scotland between 1^st April 2018 and 31^st March 2019.

Table 2: Spending on the Neonatal Expenses Fund

NEF Spending	First 4 months	Full 12 months
Meals	£24,887.76	£99,107.01
Mileage	£21,241.06	£83,595.10
Public Transport	£7,837.57	£30,197.81
Parking	£3,070.02	£15,627.03
Taxis	£745.80	£3,532.84
Flights	£2,142.40	£3160.91
Total NEF Spending	£59,924.61	£235,220.70
Average Monthly NEF Spending	£14,981.15	£19,601.73

As Table 2 demonstrates, the largest proportions of spending were on meals and mileage, followed by public transport and parking. A smaller amount was spent on taxis and on flights for parents travelling to neonatal units from more remote areas.

The average monthly spending was £4620.58 higher averaged over 12 months than the average monthly spend during the first four months. This increase in average monthly expenditure is likely to be explained by increased knowledge of the fund among staff and parents as the year progressed. Some parents make a single claim for the whole stay following their baby’s hospital discharge which may have also increased the average monthly spend.

3. b. Need

As Figure 1 shows a significant majority (92%) of parents who made NEF claims claimed for food and drinks bought in or around the neonatal unit. Most parents also made claims for transport, with mileage and parking being the most common types of travel claims, followed by public transport.

Figure 1: Type of claims made

Parent’s perception of the fund

As Figure 2 shows, among parents who made NEF claims, it was widely felt (94%) that being able to claim expenses reduced parents’ anxieties about money during the time that their babies were in neonatal units. Moreover, 72% felt that they were able to spend more time with their babies in the neonatal unit as a result of being able to claim expenses.

Parents commented on the importance of the fund:

“It was a weight off our minds when our daughter was critically ill and it allowed us to concentrate on being with her"

“The scheme is excellent. I would have paid anything to be able to be with my baby but knowing I could claim some of it back took a lot of stress off me during the most difficult time of my life”

A significant minority (39%) of parents who did not claim (as they were not aware of the NEF) felt that the cost of travel to and from the neonatal unit was a barrier to visiting the hospital as often as they wanted. Of those parents who made a claim, 51% felt if they had not been able to claim expenses that this would have been a barrier to visiting the neonatal unit. Parents who made claims commented on the importance of the fund in enabling them to travel to the hospital:

“Luckily I got to stay at [the] hospital for the 9 weeks my daughter was there. But as for my husband, he had to use buses and spend 2-3 hours one way to come see us during the week. He would make 2-3 trips a week alongside him working. The buses aren’t cheap. So we are so thankful we were allowed to claim his travel expenses back. Our daughter was born 12 weeks early and as I had to go off on maternity earlier, travelling back and forth would make us struggle financially if it wasn’t for the expenses.”

“The scheme makes a huge difference to my family and means that we can spend time with my daughter without the concerns of how we are going to manage the cost of travelling to the [neonatal unit] especially when there is a prolonged stay.”

The cost of eating in and around the hospital was also percieved as a barrier to spending time in the neonatal unit by 50% of parents who were not aware of the NEF. Similarly, 60% of parents who made a claim felt that this would have been a barrier to visiting the hospital if they had not been able to claim expenses. One parent commented being able to claim from the fund for meals and the importance this had on their health:

“I means that I eat proper meals and this helps maintain my milk supply, allowing me to continue to produce breastmilk for my daughter. This is vitally important for her health and development. Without the neonatal fund this stressful experience would have been even more stressful and far more difficult to negotiate.”

The one issue raised by parents relating to need was that parents became ineligible to claim from the NEF if their child needed to stay in hospital but was moved out of the neonatal unit. As one parent commented:

“My son was in neo-natal for 10 days before moving to a cardiac ward. His condition hadn’t changed and [he] was still high dependency-nursed but the expense stopped. We were still in exactly the same situation as we were in neo-natal, just unable to claim. My son as so far spent 10 weeks in hospital and we’ve struggled financially in terms of petrol [for] coming up and down to hospital. There’s no financial support other than one off donations from charities to help parents with babies not in neo-natal but in long term hospital. The fund, even if it was just rolled out to cover fuel/travel, would help enormously”

The responses from parents who claimed or who would have claimed if they were aware of the NEF demonstrate the importance of the NEF in reducing financial stress, removing barriers to visiting their baby in hospital, and maintaining maternal health.

Of the Parents surveyed, 11% knew about the NEF but chose not to claim. Being able to afford to visit the hospital without making a claim was the most common main reason given for not claiming (50%). None of these parents felt that they had missed out on spending time with their child/ren in the neonatal unit as a result of not making a NEF claim.

However, given that parents from wealthier SIMD categories appear to be over-represented in the parent survey, it is likely that these survey results under-emphasise the importance of the NEF for reducing anxieties about money and removing barriers to parents spending time with their babies in the hospital.

Around 20% of respondents (n=19) indicated that they did not make a claim because they were not aware of the NEF. Of those parents who knew about the NEF and did not claim, 20% chose not to claim because it seemed too complicated and/or time-consuming. They were asked to indicate any changes that would encourage them to claim if they were eligible again in the future. The four most common responses were:

• 55% of parents suggested that they would be encouraged by “clearer information from the beginning about the need to keep all receipts”;
• 55% suggested they needed “more information about the fund”;
• 46% suggested a “simpler claims form”;
• 46% suggested “not having to show receipts”.

These responses indicate that a lack of clear information about the NEF, as well as some aspects of the process of making claims, were barriers to parents making NEF claims.

3. c. Advertising and information about the fund

The majority (79%) of parents who made NEF claims said they first heard about the scheme from neonatal ward staff. The second most common way that parents first found out about the fund was via posters on the ward (12%). Small numbers of parents first found out about the fund via friends/family, other parents in the unit, and Bliss staff. The majority of parents who did not make a claim and did not know about the NEF said that they would have made a claim if they had known about it. This suggests a need for better communication of the NEF to ensure that all parents are aware of the fund. This will be discussed in more depth later in the report.

Figure 3: Neonatal staff views of NEF advertising

As figure 3 shows, responses from neonatal ward staff suggest that while the majority of neonatal wards explicitly informed parents of the scheme and displayed posters and flyers prominently, this was not consistent across neonatal units.

Staff highlighted several concerns relating to the lack of awareness of the NEF among parents. Some noted that parents were often either not told about the fund immediately, or were too worried about their child to be able to process the information that they received about the NEF in the first few days of their baby's admission to the unit. This lack of awareness meant that some parents were not able to make claims either because they didn't know about the fund, they did not realise early enough that they needed to keep their receipts or they did not have enough information to make the fund accessible.

Staff also noted that some parents assumed that they were ineligible because of the wording of the poster advertising the scheme. The poster asked “Neonatal Expenses: Are you eligible?”, which staff felt gave many parents the impression that the NEF is means-tested and that they would not be eligible if they did not receive benefits. As one parent also commented:

“We had seen posters but just assumed, because we both worked full time and didn't claim benefits, we wouldn't be entitled, despite the fact it [having a baby in a neonatal unit] was still causing us financial difficulty.”

The majority of neonatal ward staff indicated that the information provided about the NEF to parents was clear, with 69% feeling that the overall process of making NEF claims was clear to parents.

Figure 4: Neonatal ward staff views on the clarity of NEF information

The information about where parents should send their claims forms and what they were allowed to claim were seen by staff as being the least clear, with 26% and 23% of neonatal staff respectively stating that these were not clear to parents. Furthermore, 20% noted that the terms and conditions of the NEF were not clear to parents.

Similarly, 27% of staff noted that it was not clear to them where parents should send their claim forms, 27% stated that is was not clear to them what food parents could and could not claim for, and 19% said that it was not clear to them what travel expenses parents could and could not claim for.

The most common cause for concern about claims raised to staff by parents focused on the difficulties faced by parents whose children were admitted to neonatal units outside the NHS board area in which the family resides (23%). Responses from staff and parents suggest that there was a perceived lack of clarity about where to send claim forms. It was not clear that parents who were attending a neonatal unit in a health board area that was different to the one that they live in needed to claim expenses from their “home” health board area. As one staff member commented:

“there is still confusion as to where parents go to claim, when they are being cared for in another hospital but need to go back to [their] base hospital to claim, which could be 50 miles away or more”.

This was seen by both staff and parents to be impractical and causing an extra source of anxiety to an already stressful time for parents. As one parent commented:

“[The] finance office in the hospital where my baby was refused to accept the claim. They sent me to a hospital closer to my home who did not have a neonatal unit [and which was] not experienced in this claim form. They asked me if I could go to another hospital further away (which I refused). Being sent to another hospital was not acceptable. It was a major barrier to claiming. The simplest solution would be for parents to claim at the hospital where their baby is or an online claim form.”

Several issues were raised by parents and staff in relation to the lack of clarity about what expenses parents were allowed to claim. The main issues raised were: that it was unclear whether they could buy food outside of the hospital; what types of food could be reimbursed (e.g. whether the food bought needed to be a specific meal); whether taxi journeys could be included as travel expenses; and whether one or both parents were allowed to claim public transport and meals expenses on the same day.

The comments submitted by both parents and staff suggest that there is inconsistency across different hospitals in how the terms and conditions relating to these areas have been applied. For example, while some parents commented that they could only claim for one parent per day, for others this was not the case. Similarly, some health board areas allowed for the purchasing of food outside hospital grounds while others did not.

One parent suggested that the need for clearer information could easily be dealt with by providing more comprehensive written information on the fund when people arrive at the unit:

“If you were given a pamphlet or a booklet when entering neonatal it would be easier to come across the information.”

Parent and staff views on the process of making NEF claims

Among the parents who made NEF claims, it was widely felt that the process of making a claim was straightforward, with 93% of parents agreeing that “the scheme was easy to use” and reporting that they received their expenses payment quickly.

Figure 5: Parents' views on the process of making a claim

As figure 5 shows, 87% said that the overall process of making a claim was easy with a similar proportion reporting that the claim form was easy to complete, and 82% said that it was easy to submit their claim.

Compared with parents, a lower proportion of staff (68%) said that the claims form was easy to fill in, which is likely to reflect the fact that staff were interacting with a more diverse range of parents than the sample of parents used in this study.

Of the 67 parents who made a claim, 47 answered the question “did you encounter any challenges to making a claim”? Approximately a third of these (34%) said that they did encounter challenges. In total, 20 parents reported that they needed help with making their claim. Of this, 100 % found that it was easy to get the help that they needed.

Among those who encountered challenges, 44% indicated that they had issues because they did not have some or all of their receipts. Staff also indicated that this was a common concern, noting that some parents struggled to remember to keep their receipts while coping with the stress of their baby’s illness, while others did not learn of the fund immediately, so did not know to keep their receipts.

Of parents who stated that they encountered challenges, 38% said that they had “problems receiving payment”. Parents commented that the problems receiving payment included:

• A failure to be reimbursed for claims they had submitted;
• Parents being queried by cashier staff about claims that they had made;
• Some finance offices not always having enough cash available to reimburse parents immediately;
• Some finance offices only being able to offer reimbursement in the form of a bank transfer or cheque, when parents would have preferred cash;
• Parents having to spend too long at the cashier’s office waiting for their claims to be checked, approved and reimbursed, taking valuable time away from being with their babies.