Introduction

Young Lives vs Cancer is the UK’s largest organisation supporting children and young people (0-25) with cancer and their families. Each year in Scotland, we support around 600 children and young people and their families by providing day-to-day support through our social workers, financial grants, and by providing free accommodation close to treatment centres via our Homes from Home in Edinburgh and Glasgow.

We are responding to this call to evidence as we support families with costs relating to cancer treatment, which are exacerbated by factors associated with rurality, such as long travel distances, and high energy and fuel costs. We conduct research on cancer costs and the impact of the cost of living on families facing cancer across Scotland and the wider UK.

Cancer costs in rural Scotland

When a child or young person is diagnosed with cancer, they and their family often face devastating financial consequences. Our Cancer Costs research (2017) showed that 63% of families accrue debt due to their child’s cancer treatment, facing additional, unavoidable costs relating to energy, food, travel and accommodation.

Based on our research and our accounting for the current cost of living, we estimated in 2022 that families were spending an average of £730 a month on costs related to their child’s cancer treatment. All of these costs are more acute for families in remote and rural communities, and Young Lives vs Cancer social workers supporting families from rural Scotland report that families from the most remote and rural communities were spending over twice this. Scotland’s most remote areas face the longest 'cancer commutes' of anywhere in the UK - up to 490 miles for island communities - and people from these areas and their families bear a disproportionate financial burden to access cancer treatment and post-care support, including mental health support.

With additional cancer costs of upwards of £730, combined with increasing household costs for all as a result of the cost of living crisis, the additional cost of living support from the UK Government of £550 in 2022/23, soon to be decreasing to just £150 in 2023/24, does not go far enough to meet the spiraling costs being faced by rural families who also have a child or young person facing cancer.

We are encouraged that in recent years, resources such as the Young Patients Family Fund have helped to address socio-economic and geographical inequalities in accessing cancer treatment. However, families across Scotland report that awareness of Scottish benefits

among health professionals is low, and that there are many other expenses - such as accommodation costs, or travel outwith Scotland - that continue to disproportionally affect families in remote and rural communities on low incomes. The Family Fund does not support 18-25 year olds, who face similar costs to younger adolescents in accessing cancer care, but are disproportionately likely to earn low incomes, and who are likely to experience underemployment in rural areas.

We hope for increased recognition from both the Scottish and UK Governments of the costs that rural communities bear in accessing cancer treatment and psychosocial support. We would also like to see a full review of the financial support available to children and young people facing cancer in Scotland - including the Young Patients Family Fund – to gain a better understanding of how costs associated with rurality can be addressed.

In Spring 2023, as part of our upcoming campaign on the cost of cancer, we will be launching UK-wide research on the costs of travelling for cancer for young people and families from the UK; we intend for this to contribute to a better understanding of the costs faced by families in different parts of the UK, including rural Scotland. We would be happy to share this research with the Committee and to be contacted with any queries.

Infrastructure and connectivity

In our ‘Hidden Costs’ report, released in 2019, children, young people and families reported that access to reliable Wi-Fi was essential during cancer treatment, not only to maintain social connections but to access financial services. However, despite recent improvements, rural and remote Scotland continues to face some of the lowest levels of internet connectivity in the UK, with island communities particularly deprived in this regard.

This has significant financial implications for families facing cancer. 38% of parents said that they were unable to access their bank due to attending their child’s cancer treatment, with 28% responding that the lack of access to hospital Wi-Fi hindered them both from accessing their finances and from applying for other forms of financial support (such as welfare entitlements). For families in Scotland’s remote and rural areas, whose children often attend treatment in urban centres very far from their home, online access is essential to financial wellbeing.

Ensuring that all primary health services across Scotland provide free, reliable access to Wi- Fi is essential to ensure that those in remote, rural and island communities in Scotland do not experience either psychosocial or economic disadvantage from the lack of access to internet connectivity.

For more information regarding any of the issues raised in this response, please contact Ben Lejac (Devolved Nations Policy & Public Affairs Officer): benedict.lejac@younglivesvscancer.org.uk

February 2022