Date published: 07 October 2022 by Digital Team

A mum from Stockport, whose daughter was diagnosed with quadriplegic cerebral palsy at just six months 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.

Sally Davies, whose daughter Mia, aged 8, requires care 24 hour a day, is feeling the immense financial pressure right now.

Sally 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 Mia brings. The obvious one is the extra expense of fuel as we need to attend regular hospital appointments but it is so much more than that when you have a seriously ill child.

“We cannot take the risk of Mia getting cold and becoming poorly so we will have to keep the heating on as the weather turns colder. An extra blanket will just not be enough for her as she struggles to regulate her temperature. Also she is incontinent so our laundry loads are far greater than most people’s, and we will have no choice but to use the dryer during the winter months just to keep on top of it all, and of course she also needs daily or even twice daily baths.”

Other costs incurred by Sally and her partner Gary are due to the lifesaving medical equipment that Mia needs which needs to remain switched on or on charge all night, significantly increasing the family’s monthly bills.

Sally continues; “Mia is attached to a breathing machine called an airvo machine all night which monitors her breathing, plus a saturation monitor, feeding pump, cough assist machine, baby monitor and requires nebulisers and suction which all use electricity. She also has a hospital bed, with air mattress and hoist which again uses electricity. These are things we can’t just turn off or not use, they are necessities.”

“One of Mia’s joys in life is watching nursery rhymes on TV which again uses electricity. We use power banks which need to be fully charged if we go out so that she has access to her ipad. It is such a source of comfort for her that we don’t like to leave home without it. She is due to receive a new electric wheelchair soon – this is a mixed blessing as whilst it will give her more mobility we are conscious that it will also need to be charged daily.”

Five years ago, Sally was introduced to Sean, their Rainbow Trust Family Support Worker who has supported the family regularly ever since.

“Sean is fantastic and is a great support to me and my partner Gary, allowing us an opportunity to offload, chat or even just moan. He signposts us to other organisations for support – whether that be financial or emotional help. He attends meetings with us and helps with transport for those all important hospital visits. He has been and continues to be an enormous help to Mia’s big sister Maisie too providing her with one-to-one support doing activities she enjoys and gives her the space to talk about things she may be worried about. She loves spending time with him. By supporting Maisie, Sean helps Gary and 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.

Sally 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 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 Sally’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.”