Date published: 05 October 2022 by Alex Martin

A mum from Woking, whose son was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in 2021 at just two years old, is backing new survey results from Rainbow Trust Children’s Charity showing the increased pressures on families caring for a life-threatened or terminally ill child during the current cost-of-living crisis.

In figures released this week from the latest survey of families it supports*, Rainbow Trust found that over 90% of respondents said their financial situation is now worse due to the cost-of-living increase, with 32% saying they are now much worse off. Almost 74% of families said this negative financial impact is greater due to having a seriously ill child.

It is clear from the survey results that caring for a seriously ill child whilst the cost-of-living continues to rise, exacerbates an already difficult situation for families. Almost two thirds (62.5%) of families said the cost-of-living crisis means there is less money for essentials like food, 61% say the rise in the cost of travelling to hospital is impacting them negatively and almost 20% say running life-saving equipment at home essential for their child’s illness is also affecting their finances.

Clare Peers whose son George, aged four, requires frequent hospital appointments and chemotherapy, is feeling the immense financial pressure right now and is finding increased difficulty in meeting household bills.

Clare explains; “The cost of everything is rising and it is incredibly stressful trying to manage family finances, particularly when we are dealing with the extra costs that caring for George brings. The obvious one is the extra expense of fuel as we need to attend regular hospital appointments. Driving to and from the Royal Marsden in Sutton for George’s regular chemotherapy two or three times a month, is obviously much more expensive for us now, but it is more than that when you have a seriously ill child.”

It is not just fuel costs but in particular the rising cost of food that is significantly increasing the family’s monthly bills.

Clare explains; “George was fed via a nasogastric (NG) tube for a long while following his initial diagnosis to ensure he was taking in enough calories. Thankfully even though he still has his NG tube for his medication he now eats normal food but we are very conscious that we need to keep his weight up to help him thrive. His appetite varies and he can be quite fussy which inevitably leads to lots of food waste. He definitely goes through phases with food and becomes obsessed with specific things; one week it might be croissants and the next salami or orange juice from a carton but we have to allow him these things to keep him eating and drinking. It is really important that we make sure food is exciting and enjoyable for him and sometimes we take him out for burritos or buy takeaway pizza as despite the rising prices, if this means he will eat well it gives us some peace of mind.”

In the summer of 2021 just two months after George’s diagnosis, Clare was introduced to Nicki, their Rainbow Trust Family Support Worker who has supported the family regularly ever since.

Clare says; “Nicki is fantastic and has provided lots of emotional and practical support to our whole family. Initially when George was sofa bound she would come over and play with my youngest son, Henry, so that I could focus on George. More recently she has organised days out to Bocketts Farm and accompanied us on trips to the park or local cafes. It is such a relief when she is able to take care of Henry while I have attended hospital appointments with George. Frankly she is absolutely amazing and both my boys love her. By supporting George and Henry, Nicki helps me cope with the pressures of having a seriously ill child, as well as helping me to better handle all the other worries that life is currently throwing at us.”

The survey also showed that the impact of the increase in cost of living has been accentuated by the pandemic over the past two years. Over 73% of families surveyed say their mental health is now worse than it was at the start of 2020, with a third (33.33%) saying it is much worse. Individual comments from respondents ranged from ‘I feel completely isolated’, ‘we worry about our son getting covid and dying as well as not being able to pay bills’, ‘I have no idea how to control things and help’ and ‘I can’t get out as much as I did and my own health has deteriorated’ to ‘everything is a fight when you have a sick child’ demonstrating that for families caring for a seriously ill child it is harder to put the worry of COVID behind them.

Clare continues, “The impact of the pandemic, coupled with the rise in the cost of living has increased the pressure we are under. We are under a lot of stress with the rising cost of energy, fuel and food having a significant impact on our finances. We are definitely finding it more difficult to meet our household bills.”

Zillah Bingley, Rainbow Trust Chief Executive says, “Our latest survey has highlighted how the needs of families with a seriously ill child like Clare’s, impact their finances significantly. Whether it is running essential electrical equipment such as ventilators, hoists, air conditioning units or heart monitors 24 hours a day, using the washing machine more frequently due to the need for more regular changes of bedding or clothes, or needing to drive as taking public transport with a seriously unwell child is not possible. For these families, their spiralling costs are not an option, they are an absolute necessity.

“The bleak impact of the cost-of-living crisis on families with a life-threatened or terminally ill child means that families do not know how they will pay the bills, that medical appointments are being missed due to the cost of travel and one family told us they are having to choose between reducing therapy for their sick child which stops his deterioration or basic food and living items.

“This survey shows how much more families caring for a seriously ill child have been, and continue to be, negatively affected by the COVID pandemic. On top of that now facing the current cost-of-living crisis and double-digit inflation is hugely concerning and a very distressing situation for many of them. The support our Rainbow Trust Family Support Workers provide to families is vital and for 17% of respondents we are their only source of regular support at this challenging time.”