Together for Short Lives
Call the Helpline 0808 8088 100

Cost of Living Crisis – Together for Short Lives calls for urgent financial support for families of seriously ill children

News and comment

Together for Short Lives, Contact, Scope and other organisations representing disabled children and their families have today published an open letter to the Conservative Party Leadership candidates calling for urgent action to address the mounting hardship facing families caring for seriously ill and disabled children.

Like many across the UK, these families are facing the alarming news that Cornwall Insight is now predicting the energy price cap to rise by 81% in October and then again by a further 19% in January.

The consortium is asking both candidates to agree on a package of financial support for these families. They stress this is needed now, before the Conservative leadership election concludes. Families of disabled children will incur even higher energy costs. Research shows that families with seriously ill and disabled children are already paying almost double that of an average UK household on their energy bills. This might be due to life-saving equipment powered by electricity or extra washing due to continence issues. Some disabled children are less mobile and get colder quicker. Others have health conditions that mean they cannot regulate their body temperature.

In the letter which has been covered in detail in the Daily Express today, Friday 26 August, has 83 signatures, the consortium calls on the government to go further by providing an energy assistance payment for families of serious ill children who are unable to access medical grants from the NHS, and to double the £150 disability payment when it is paid in September to reflect their higher household and energy costs.

The letter supports calls for an emergency uprating of benefits in line with current inflation rates, which should come into effect in Autumn. We would also be interested in exploring that idea of social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to disability.

Time is short for these children, some of whom are seriously ill and unlikely to reach adulthood. Their families cannot wait long for the government to act.

Elisa from Bournemouth is one of the thousands of children across the UK for whom families need to pay even higher energy bills just to keep them alive. Her father Dan McEvoy has given up work as an IT Analyst to care for her 24/7.


This open letter resonates so powerfully with me. These children don’t have long, and these one-off payments are just a sticking plaster on a long-term issue which needs a long term, sustainable solution.

Dan, Elisa's dad
Dan and Elisa

For Kerry and Daniel, the cost of running their home and caring for Louie has doubled. Louie, who will be three in October, needs life-saving equipment including a ventilator, saturations monitor, and a baby monitor these machines have to run all night and for part of the day when needed. In addition, the family needs to pay for syringes, sterilised water and gauze all of which have double in price.  Kerry spends time online searching for the cheapest options.
Louie who is incontinent, does not qualify for nappies until he is five and so the family need to cover the cost of incontinence nappies. Louie can get through three outfits a day, so Kerry’s washing machine is constantly in use.

Louie can have as many and five hospital appointments a week in different locations – Stoke, Burton and Tamworth. Kerry’s monthly diesel cost is between £300-£400.  It costs £1000 to care for Louie alone and they are in receipt of the higher DLA payment of £350. And yet there are two other small children in the family to care for who need food, clothing and school uniforms.

Often the family must make the tough decision to deny the children treats, clubs and days out so that they can make ends meet.

Kerry said: “As the mother of a child with a life-limiting condition, I don’t believe the Government understand or care about the struggles we face. This cost-of-living crisis is affecting everyone, but some of us more than others. Daniel and I are dreading the Winter and we don’t know how we are going to get through it. Daniel and I are also parents to two other small children, and we feel through no fault of our own that we are often left with no choice but to let them down, to ask them to go without simple things like a day out or membership of a club because we have to make ends meet and ensure we can care for Louie. Everyone is calling on the Government to take action, I hope they start listening soon. As Together for Short Lives’ letter says, parents with seriously ill children don’t know how long they have with them but every moment and precious and we want to make our time together as joyous as possible not constantly fighting for survival.”

Kerry and Louie

Andy Fletcher, Chief Executive of Together for Short Lives said:

“The Cost-of-Living crisis is creating an impossible future for families caring for disabled and seriously ill children. This cannot wait until we have a new Prime Minister. We urge both candidates to agree a package of financial support for these families. This is needed now.” 

Andy Fletcher, CEO of Together for Short Lives

Amanda Batten, Chief Executive of Contact, said: “Families with disabled children are already finding unprecedented energy costs desperately difficult, and are fearful of the next price hike due in October. Essential equipment like ventilators, food pumps and hoists all add up to bigger bills. And for many it could be dangerous to cut back on usage. Further help needs to be targeted at those that need it most and right away.”

James Taylor, Director of Strategy at disability equality charity Scope, said: “The support from government simply won’t touch the sides for disabled people and their families in the face of staggering energy bills. Scope is hearing from parents whose children need life-saving equipment who feel punished for needing to use extra energy. They’ve already cut back everything they can. This is an emergency. Without urgent government intervention, many more families like these will be pushed into debt and destitution. Disabled children and their families need much more financial support, and they need it now.”

Read our joint open letter to Rishi Sunak and Liz Truss here.

Leave a comment