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Navigating the Financial Challenges of Childhood Brain Tumour Diagnosis: A Cry for Support

Rising inflation and the cost-of-living pressures are concerns that are reverberating across society, with families of cancer patients hit even harder. With consumer prices rising across everything from food and fuel to electricity, families struggling with a child’s brain tumour diagnosis are finding themselves grappling with an additional layer of financial strain.

Every family caring for a cancer patient is sadly too familiar with the financial burden associated with treatment, issues such as loss of earnings, rising childcare bills, increased travels costs for medical appointments and even multiple parking charges have a significant impact. In a time where we are all feeling the impact of rising costs, there are so many additional pressures on families with a child’s cancer diagnosis.

During recovery more time is spent indoors, which increases a home’s energy bill

In addition, these costs often increase as treatment progresses. For example, during the recovery period at home more time is spent indoors, which increases a home’s energy bill. In addition, for families with other children, there are likely to be additional childcare costs as parents are required to provide care and attend so many appointments. This increasing financial strain is at a time when many families are under pressure to reduce their hours at work, and as costs can accumulate rapidly, there is a significant layer of pressure at a very difficult time.

Research conducted by the Brain Tumour Charity highlights the difficult challenges faced by families caring for a child with a brain tumour diagnosis, with the report stating that more than two-thirds of caregivers are struggling with the financial burden. In addition, research by cancer charity CLIC Sargent found that cancer in children costs families an extra £600 a month on average. Clearly this substantial financial burden places immense strain on budgets, causing many families to teeter on the edge of financial instability and debt.

Financial assistance and support

Fortunately, there are some forms of financial assistance and support available which can help to ease some of the burden:

  1. The Healthcare Travel Costs Scheme (HTCS) offers a potential lifeline for those eligible, providing assistance with travel expenses.
  2. While there is no set guidance on the duration of allowed time off, employers are generally expected to grant reasonable time off for dependents. However, whether this time off is paid depends on the employer’s discretion.
  1. Parental leave grants parents the right to take unpaid time off work to prioritise their child’s welfare. This statutory right allows for 18 weeks of parental leave per child, with a maximum annual leave allowance of four weeks.
  1. Flexible working arrangements are potentially accessible for those who have worked for an organisation for 26 weeks, offering options such as flexible start and finish times or remote work.
  1. Universal Credit, a monthly payment for those with low income or out of work, offers means-tested benefits that may include the carer’s element and child element, especially relevant for families facing a child’s brain tumour diagnosis.
  1. The Disability Living Allowance (DLA) is another crucial avenue, offering payment for parents of children under 16 with a disability or health condition. While not means-tested, eligibility for DLA is based on various factors related to the child’s needs. Parents eligible for DLA can also explore means-tested benefits such as Carer’s Allowance or Carer’s Credit.

Joss SearchLight – Calling for government support

We are familiar with the financial strain associated with a paediatric brain tumour diagnosis, and we are calling for governmental support. We believe that the government should both increase the investment for brain tumour research to achieve parity with other cancers, and secondly, provide additional financial benefits to offset the loss of income for cancer patient caregivers.

The financial impact of a child’s brain tumour diagnosis extends far beyond the medical expenses, placing families in a precarious financial position. It is imperative for society, policymakers, and healthcare providers to recognise these challenges and work collaboratively to provide the necessary support and resources. As always, we are advocating for increased research funding, improved benefits, and accessible financial aid, and we hope that our work paves the way for a future where no family must choose between financial stability and the well-being of their child.

To support our charity with a donation or to find out more about financial assistance and support, please contact our team today.

Help us find a cure for rare brain tumours and give support today

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