Tackling the hidden cost of childhood illness


Financial Stress

Introduction

Website childreninhospital.ie
Email
CRO No. 297192 | Charity No. 6632
RCN. 20012632
© February 2020

Our summary findings are included in pdfthe summary report here.

Children in Hospital Ireland first carried out research into the non-medical costs of having a child in hospital in 2004. In 2019, we decided to carry this out again to re-fresh our findings and also to add a qualitative element to the study. In 2004, the survey was paper based and relied on parents completing it while they were in hospital with their child. In 2019 most of the surveys were completed on-line by parents of children who had been in hospital in the previous 18 months. This survey also interviewed social workers, NGOs working with patients' families and also parents themselves. This gave us some very rich and insightful personal stories and perspectives on the issues.


The strongest call for change in the area of supporting parents and families, comes from the EACH Charter, Article 3(1) and 3(2) which state that 'accommodation should be offered to all parents and they should be helped and encouraged to stay' and that 'parents should not need to incur additional costs or suffer loss of income'. The charter gives recognition not only to the additional costs involved when your child is in hospital but also the loss of income which at least one parent will often experience due to having to decrease or give up work entirely.

Our study looked at the expenses which were incurred such as parking, accommodation, food and travel and also at the sometimes hidden costs of childcare for other children at home, expenses related to items such as additional laundry, gifts for family caring for other children and day trips and treats for the sick child and for siblings. We also asked parents about any loss of income as a result of having a child in hospital and also how they had managed to cover the additional costs. Finally, we also asked parents about the psycho social impact of having a sick child and whether they had accessed medical or counselling support themselves as a result.

Our summary findings are included in pdfthe summary report here. We are now working on developing an advocacy strategy to promote our findings to policy makers and to lobby for changes to be made.

We hope that other EACH member organisations might also consider adding to this knowledge and we would encourage other countries to share their stories with us.

The EACH Charter provides us with a strong basis for advocating for children, young people and their families and we intend to use this to help support our work.

Findings

71% worried ‘fairly often’ or ‘very often’ about their finances

58% said they had seen a ‘strong negative impact ‘or an ‘extreme negative impact’ on their financial well-being

Being so far from Dublin and on my own, means that
I don’t see my [other] kids for weeks

It can cost parents €108 per day in non-medical costs

Higher levels of impact recorded in those in lower-income brackets

The €60 each per week it would cost [for counselling] is not realistic for us at this time

Travel

89% of families travelled by private car to hospital. Most cited the reason for this as the difficulty of bringing a sick child on public transport. For some, the journey to hospital involved three hours travelling each way.

Parking

While not the biggest financial concern, it is one of the biggest sources of frustration.

Discrepancies in charges between different hospitals – varying concessions which some parents may not even know about or know how to access.

Accomodation

94% of parents have stayed overnight.

Charges for hospital-provided parents’ accommodation vary from €18 to €30 per night.

Charges for accommodation provided by voluntary groups range from €0 to €10 per night. However, there is only a limited supply of such accommodation.

10% of families had to stay at a hotel.

Only one parent can stay in a child’s room in a hospital, the other parent would have to find accommodation

Parents cannot stay in room if child is in intensive care, which means they must find accommodation elsewhere.

Food

An average of €47 spent by a parent for one day in hospital.

Hospital canteens do not have flexible opening hours.

Parents of children in isolation cannot use shared kitchen areas – increasing their costs.

Childcare Costs

81% of respondents had other children at home.

28% of parents relied on paid childminding/crèche services for children at home.

25% relied on their partner to mind other children (which meant that this parent could not be readily available to support the parent staying with the child the hospital).

34% relied on other family members to mind other children.

Additional costs for other children of, on average, €41 per week as a result of having a child in hospital (outings and activities).

Mental Health Support

21% of parents had sought mental health support as a result of having a child in hospital.

24% said that they could not afford to access counselling or similar form
of support.

Impact on Family Income

78% had lost income as a result of having a child in hospital.

19% said they had given up work to look after their child.

11% had reduced their hours.

13% were taking a temporary leave of absence.

16% had used up much or all of their annual leave.

Financial Support

Statutory Support Schemes

Those on higher incomes were more likely to successfully access the non means-tested schemes

51% found applying for state support was ‘very difficult’. Issues included:

  • Complex forms;
  • Long wait times;
  • Poor communication from Department of Employment and Social Protection;
  • Perceived inadequacies in the means test;
  • Pressure of dealing with sick child leaves little room for dealing with technical forms.

The difficulties varied according to geographic region.

Charitable Support

Those that did access support from a patient group found it invaluable at a time of crisis. This charitable support included:

  • Free or subsidised accommodation;
  • Financial once off grant for expenses;
  • Meal vouchers.

How Families Covered the Costs

24% borrowed money from friends or family to pay hospital-related bills.

13% took out loans.

17% incurred debt through overdrafts and using credit cards.

37% used their personal savings to deal with their expenses.

Impact on Families

‘You kind of know [your child] is getting the help they need and that you’re doing everything to get them sorted out medically. So because of that, in a way, the money is the biggest stress. It’s the money that has you thinking "how am I going to do this, how am I going to do that" . . . your part in it is making sure the money is there for them to get what they need . . . the more difficult thing to manage is making sure we have the money day to day to look after all the other costs we have when we’re up at the hospital’.

Parent

‘[Parents are] already paying for their place back home. They’re paying for accommodation in Dublin and mortgage or rent back home … We’re asking families to live in two places’

Social Worker

'[My partner] wasn’t in a good headspace; he was on high alert all the time and wasn’t able to perform to the best of his ability. The stress for him of having to stay in [work] to support us when really all he wanted was to be with us.'

Parent

What the Policies Say

‘Parents should not need to incur additional costs or suffer loss of income.’

Article 3(2), Charter of the European Association for Children in Hospital Ireland

Article 3 states that, in all actions taken by public and private authorities, ‘the best interests of the child shall be a primary consideration’. Article 18 says that families are entitled to state support in fulfilling their duties towards their children.

UN Convention on the Rights of the Child

This Policy Framework says that the state intends to ensure that parents are ‘equipped and supported to raise their families, to play their role as their children’s primary carers, to promote the best possible outcomes for their children and to meet all challenges that may arise’.

Better Outcomes, Brighter Futures: The National Policy Framework for Children and Young People, 2014–2020

What needs to be
    done?

Recommendations

On the Front Line . . .

  • Abolish parking charges – in the short term, establish consistency across
    the country.
  • Subsidise food – as standard across all children’s hospitals and paediatric
    wards.
  • Negotiate with private contractors of hospital canteens to ensure that the
    service meets the needs of families in terms of opening hours and flexibility in regard to these.
  • Abolish charges for hospital-provided accommodation for parents
    Provide better access to mental health and counselling support for parents and siblings of children in hospital.
  • Provide greater funding for hospital discretionary funds, which are an
    invaluable support to parents in a crisis situation.
  • Ensure improved systems of information for parents so that they can be
    aware of services and supports available within the hospital and from
    statutory authorities.
  • Make provision for a Citizens Information or DEASP information stand, with a staff member, to be available in children’s hospitals on a daily basis (in regional hospitals, at least weekly).

Structured Support . . .

  • Introduce a non means-tested, recognised scheme of assistance towards
    the non-medical cost of having a child in hospital. This would provide help
    with costs such as:
    • Food;
    • Transport;
    • Accommodation;
    • Childcare for other children;
    • Loss of earnings.
  • The Domiciliary Care Allowance system in place to assist parents of children in need of long-term care at home is not suitable for supporting parents with the costs of having a child in hospital.
    This payment:
    • Is not designed to support parents who have a child in hospital;
    • Cannot be accessed until there has been a diagnosis – this could take a number of years;
    • Cannot be paid until the child is at home. A child could spend six months or more in hospital before discharge during which there is no entitlement to a payment.
    In addition, when the child who is receiving DCA is admitted to hospital, the allowance (and other associated supports) is cut off after 13 weeks, despite the fact that parents still need to care for the child in hospital every day.
  • State should oblige employers to offer more paid leave to parents of children in hospital. This would assist parents in taking an active role in their child’s care.
Methodology &
   Response

Research conducted between July and December 2019:

  • Desk Research and Policy Analysis;
  • On line Survey – quantitative and qualitative questions;
  • Interviews – parents, NGO professionals, social workers in three hospitals.

Response:

  • Over 300 surveys returned;
  • Interviews with six social workers, seven NGO staff and ten parents.
Acknowledgements

CHI wishes to express its gratitude to all those who helped in the undertaking of this study.
It acknowledges with thanks the contribution made by the more than 300 parents who completed its survey and the input of the parents, social workers and NGO staff members who took part in interviews. It greatly appreciates the co-operation of CHI at Crumlin, CHI at Temple Street, and Sligo University Hospital in facilitating the study and the valuable assistance of the many charities which helped to distribute the survey questionnaire.

Our thanks and appreciation also to Andrew Daly, Researcher at Children in Hospital Ireland.