The petition, launched by Acorns Children’s Hospice, is part of a campaign calling on the Government to safeguard a vital funding stream called the Children’s Hospice Grant, which Acorns and children’s hospices across England rely-on to provide their care.

Public backing for the campaign has been growing, with the petition to save the Grant reaching more than 10,000 signatures in just four weeks and celebrities including Julie Walters and actor Adrian Lester lending their support. 

Liz Bishop, 45,  joined Acorns CEO Trevor Johnson on the steps of 10 Downing Street as the two delivered a box of signatures along with a letter to the Health Secretary, Wes Streeting.

Lily-Mai, Liz’s daughter, was supported by Acorns Children’s Hospice as she bravely battled a brain tumour for many years. She died at the hospice on 25th June 2018, aged just seven.

Liz said: “Acorns is such an amazing place. They were there for us and Lily-Mai, catering to our every need. They are still helping us now and will do into the future too. We’ll forever feel like part of the Acorns family.

“This campaign is so close to my heart. More and more families need Acorns for love and care at the most difficult times. To think there could be families like ours in the future who’ll miss out on these vital services is just unimaginable. 

“I hope the Government listens to our campaign and does something urgently to make sure Acorns, and every children’s hospice is protected, this year and long into the future.”

The campaign Children’s Care Matters was launched in July in response to the uncertain future of the Children’s Hospice Grant.

Uncertainty around future funding comes as demand for end-of-life care provided to families like Liz’s at Acorns has grown by 47% in the past year.

Trevor Johnson, Acorns Chief Executive, urged people to keep supporting the campaign. He said: “Today is an important day, because we deliver a powerful message to the Government. In just a few short weeks, thousands of people have shown they recognise the importance of the vital care Acorns provides.

“We are so grateful that Liz could join us today. Her story is just one out of hundreds of families every year who use our services. Every family we care for has a similar story to tell, and every one of them faces an uncertain future if this Grant is taken away.

“We may have delivered these signatures, but the petition will remain open, so please keep on signing, sharing, and writing to your local MP. Together we can make a difference for the countless families who rely on children’s palliative care.” 

The future of the £25 million NHS Children’s Hospice Grant which is distributed annually to children’s hospices across England is uncertain. It makes up around 13% of Acorns income, a total of £2 million.

Without the grant Acorns, and many children’s hospices nationally, may be forced to cut vital services for life limited children and their families.

Lily Mai’s Story

Lily-Mai Bishop and her family were supported by Acorns throughout her four-year fight with a brain tumour.

The seven-year-old spent her final days at the charity’s hospice -  one of her ‘favourite places’.

Lily-Mai was born by emergency caesarean at 37 weeks in April 2011. She hadn’t grown as expected and her heartbeat had become dangerously slow. Although she was very tiny for her age, the doctors had no concerns.

But mum Liz had a nagging feeling something wasn’t right. She noticed Lily-Mai had facial dysmorphic features and a health visitor at the six-week check agreed.

Blood tests provided no clear answers and Lily-Mai was diagnosed with a syndrome without a name (SWAN) – a condition so rare, it remains undiagnosed. The diagnosis came with the prognosis that Lily-Mai was life limited.

Her complex condition meant she was unable to walk unaided or talk. She had acute gastric problems and an unsafe swallow, leaving her with a serious risk of choking.

Proud mum Liz says her ‘little fighter’ survived three years of her life before being given the second devastating diagnosis of a brain tumour in July 2014.

Lily-Mai bravely fought her cancer for four years, enduring gruelling surgeries and treatment, facing each one with a smile. She passed away in June 2018.

Since Lily-Mai’s passing, her family have dedicated their time to ensure her memory lives on by raising money and awareness for Acorns to ensure its vital care and support is available for every child and family that needs it.

Liz said: “I can’t thank Acorns enough for all their love and support during that time and afterwards. It was hard, obviously, I’d lost my child. But I didn't have to worry about having a cry because I had to be strong for everyone or trying to be strong because I had Acorns supporting me and my family.

“If we didn't have Acorns as part of our lives at that time, circumstances would have been very different. They were literally our family, our support network, and still are to this day.”

In the past year, Acorns has cared for more than 750 children across the
West Midlands, and supported almost 1,000 families, including those who are bereaved.

This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.

To find out more about the Children’s Care Matters campaign and how you can get involved, visit: www.acorns.org.uk/campaign