Hospices ‘absolutely vital’ to children with rare conditions, say parents – amid fears of funding constraints
A financial lifeline could reportedly be offered to the hospice sector by the government, amid fears some services may be forced to close due to funding pressures.
Bosses are worried about the impact of the rise in employers’ national insurance contributions, recently announced in the budget, which the sector reportedly believes could cost it £30m a year.
Under the new rules, which are due to come into force next April, NI is being increased from 13.8% to 15% and the salary threshold at which this starts is falling from £9,100 a year to £5,000.
Charities have called for an exemption to the rise.
Sixty cross-party MPs have signed an open letter to care minister Stephen Kinnock calling on the government to provide emergency funding for the charitable hospice sector “to prevent further cuts to frontline hospice services and staff”.
Hospice care aims to improve the quality of life and well-being of adults, children and young people who have a terminal illness or a long-term condition that cannot be cured – also known as life-limiting. It is free for patients, their carers and family members.
Baby Rayne’s story
Llana Mills told Sky News’ The UK Tonight With Sarah-Jane Mee about the vital help that specialist hospice Zoe’s Place in Liverpool offers her and her daughter Rayne as it “takes a little bit off her shoulders”, as she has her “hands full at home”.
Rayne, who is nearly two years old, has FOXG1 syndrome – a rare genetic condition which her mother said means she’s “missing a piece in her brain that regulates everything”.
Baby Rayne has FOXG1 syndrome – a rare genetic condition
“She’s missing a chromosome which is vital to development. She will never walk, talk, and she’s got low-density muscles.”
She also has epilepsy and has a “really low immune system”, said her mother.
Llana said doctors are anticipating Rayne’s life expectancy to be up to the age of five.
She said that Zoe’s Place, which supports babies and young children who have complex illnesses or disabilities, is “like a community in itself… like a home away from home”.
“Our everyday struggle is to make every day count.”
Llana Mills and Rayne
‘We can live better’
Llana has two other young children, who also sometimes stay at the hospice. “We feel like when we drop the kids off, our energy is so low, we have a lack of sleep,” she said.
“When we collect them even just a day after, after a full night’s sleep and a nice bath we can parent them better, we can live better… instead of just trying to get through the day.”
She said the hospice is “welcoming”. Llana has counselling there and Rayne has hydrotherapy which helps the use of her hands and arms. The daily pressures facing the family were highlighted when Rayne had a seizure during her mother’s interview.
Evie’s story
Claire and Graham Withington also have help from Zoe’s Place for their child, four-year-old Evie.
Claire and Graham Withington and their daughter Evie
Evie has been diagnosed with an extremely rare condition, which is a mutation of the gene AARS1.
Only three other people in the UK are known to have the same condition, which Claire says prevents Evie from sitting up, talking or walking properly.
She receives care there four times a month and has been going there for about a year.
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Claire has said the hospice is a “lifeline” and “absolutely vital”.
She said: “When she is here, it means we can have a day or a night without Evie, and we know she is cared for and well looked after, and she absolutely loves the activities that they provide her.”
“She loves spending time with children with similar needs to her, we don’t even get a goodbye!”
The specialist baby and young children’s hospice has recently been saved from closure after £5m was raised for a new home.
Evie has been raising money for Zoe’s Place. Pic: Claire Withington
Claire said the family was “devastated” when they heard that the hospice could be shutting.
Graham said it was “ridiculous” and “annoying” that hospices will be hit by the rise in employer national insurance contributions.
A Department of Health and Social Care spokesperson said: “This government has inherited huge challenges in the hospice sector.
“We are determined to shift more healthcare out of hospitals and into the community, to ensure patients and their families receive personalised care in the most appropriate setting, and hospices will have a big role to play in that shift.”
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