Children's Palliative Care
Peter Dowd MP recently attended The APPG for Children Who Need Palliative Care reception on Wednesday 23 November 2022.
At the event, children’s palliative charity Together for Short Lives spoke about how the cost of living crisis is impacting upon families whose children rely on electrical equipment to keep them alive.
He heard that Together for Short Lives has launched a new ‘Cost of Living Support Fund’, which will help families across the UK currently struggling to pay soaring energy bills for necessary equipment that keeps their child alive. However, these families urgently need the Government to go further by:
• providing an energy assistance payment for families of seriously ill children to replace or supplement the inconsistent access to local NHS medical grants and reimbursement schemes
• doubling the £150 disability payment to reflect their higher household and energy costs
• uprating benefits urgently in line with current inflation rates
• exploring the idea of social tariffs as a long-term solution to reducing energy bills for household with high energy usage due to disability.
An estimated 3,000 seriously ill children require long-term ventilation to stay alive; and around 6,000 are dependent on ‘assistive technology’.
Mr Dowd said:
“I was privileged to meet families who have been struggling in so many ways, including financially, to ensure that their children are cared for despite the many pressures upon them. Families should not be worrying everyday about how they can ensure their children have the quality of life any child deserves especially if they are seriously ill.”
Concerned families are facing significant debt to keep machines running and are now confronted with difficult choices between feeding their family or heating their home, let alone being able to celebrate a Christmas together that may be their last.
The new fund has been given a momentous start thanks to a generous contribution of £100,000 from Morrisons’ partnership fundraising. Families will be offered a grant of £250 to help with spiralling energy costs, meaning they can focus on making lasting memories with their child this Christmas.
Time is short for these families, and they don’t have time to waste. The Government must act now so that families can make the most of every moment they have together.
By donating to Together for Short Lives’ Cost of Living Support Fund Appeal people can help families who are struggling to make ends meet this festive season www.togetherforshortlives.org.uk/emergency-fund
Families that care for a child with a life-limiting or life-threatening illness, can call the helpline on 0808 8088 100 Mon-Fri 9am-4pm for listening, practical and financial support.
