Date published: 07 October 2022 by Digital Team

A mum from Camden, whose son was diagnosed with a serious heart condition whilst she was pregnant, 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.

Donna whose son Romeo, aged four, requires care 24 hours a day, is feeling the immense financial pressure right now.

Donna explains; “The cost of everything is rising and it is incredibly stressful trying to manage my finances, particularly when we are dealing with the extra costs that caring for Romeo brings. The cost of our heating and electricity have doubled so I am cutting corners where I can – running the washing machine at night, reusing bath water and so on. But I need the electricity on all the time as Romeo has a feeding pump that needs to be permanently charged as it is the only way he can get liquid food and fluid into his body when he is unwell. Romeo also needs his TV as often this is his only source of comfort, especially after spending a whole year in hospital and following an entire year at home during the pandemic, it is these little things in life that keep him going.”

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

Donna continues; “The cost of travelling to hospital appointments has also risen. We use taxis or Ubers as the risk of infection is too high on public transport but these are now more expensive.”

Four months ago, Donna was introduced to Lilia, their Rainbow Trust Family Support Worker who has supported the family regularly ever since.

Donna says; “Lilia has been a godsend to us. She has supported me in filling out forms and going to meetings at Romeo’s school as we are fighting for him to have one-to-one assistance there. She always checks in with us to see how we are both doing and to see if we need help with anything. I’m not sure how I’d cope without her.”

Donna continues; “As finances are now so tight I often hear myself saying ‘no’ to Romeo if he wants a toy or asks for a day out. Because of his condition I want to give him everything to make life as easy as possible and to create amazing memories but these are truly worrying times. I often lay awake worrying about debt and bills and, when the time comes, how am I going to afford a funeral for him. I would love to take him on holidays and really enjoy what time we have left but I'm constantly in a state of anxiety just not knowing what's going to happen with the state of living today. By supporting me and Romeo, Lilia helps me cope with the pressures of having a seriously ill child, and helps us to deal with 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.

Donna 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 food and energy 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 Donna’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.”