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Zoë’s Place Baby Hospice in Coventry joins call on NHS England boss to make good his promise to properly fund children’s hospices

Zoë’s Place has to rely on the kind-hearted generosity of well-wishers for at least 75% of the £4 million a year it costs to run its three baby hospices in Liverpool, Middlesbrough and Coventry which over the years since they were founded in 1995, 2004 and 2010 respectively have looked after hundreds of children and their families.

Funding shortages are already hitting home. The Liverpool hospice recently reduced the number of its cots because it could only afford to keep four cots open on a regular basis. Zoë’s Place in Middlesbrough is facing making a similar cutback and in Coventry the hospice’s income only allows it to open four of its six cots 24/7.

Simon Stevens had announced on 27 December that, over the next five years, up to £7million additional funding would be made available to children’s hospices each year on top of the existing £11million Children’s Hospice Grant, if CCGs also provide additional match funding [1]. However, NHS England subsequently rowed back on this promise in its Long Term Plan. This stated that the additional funding will also be available to other, non-hospice palliative care services.

This was later confirmed in Parliament by Care Minister Caroline Dinenage. While NHS England has increased the grant to £12million for 2019/20, she refused to commit to continuing it exclusively to children’s hospices beyond this year [2] [3]. The minister said the Department of Health and Social Care would only “expect hospices to be significant beneficiaries of the additional funding” set out in the Long Term Plan – and that “simply increasing the hospice grant is not a solution”.

Andy Fletcher, Chief Executive of Together for Short Lives said:  “All children’s palliative care services, delivered in hospitals, children’s hospices and the community, need equitable and sustainable funding. However, children’s hospices in England are facing a dangerous cocktail of growing costs and declining, patchy NHS funding, which is putting their long-term future at risk. Acorns’ proposal to close one of its children’s hospices could be just the tip of the iceberg. It is simply not sustainable to expect specialist children’s palliative care services provided by children’s hospices to be funded by charity reserves and the generosity of the public. It is time for Simon Stevens to make good on the commitment he made at Christmas by protecting the grant and increase NHS funding for children’s hospices.”

Joan Stainsby, Executive Trustee at Zoë’s Place, said: “Our supporters are enormously generous and we are eternally grateful for the efforts they make to keep our baby hospices open to families who so desperately need the care we provide.

“Fund-raising is a constant challenge and it is a great worry that the Government appears to be back-tracking on its promise. Government funding is vital for the sustainability of the hospices and we are already terribly disappointed not to be running at full capacity.

“Zoë’s Place is a lifeline for our families – so many of them tell us they don’t know what they’d do without us.”

Amelia-Rose Demellweek, who has a rare brain disorder, a rare form of epilepsy, cannot sit up, walk or speak, spends two nights a week respite care a fortnight at Zoë’s Place in Liverpool. During that time her mum Faye Maguire and dad Anthony Demellweek can focus more energy on their son, Amelia-Rose’s older brother, free from the anxiety that Amelia-Rose could have a fit and stop breathing at any time.

Faye Maguire said: “Zoë’s Place makes our lives a lot easier, allowing us to relax knowing she is in professional care and there is less need for us to worry. The staff love her and she loves them…. Their services are vital to us, a real lifeline helping families like ours to stay together.”

Nathan and Claire Baines’ son Joel needs care round the clock because he was born with a laryngean cleft – a gap between his food and wind pipes which means he risks getting food and liquid into his lungs. They monitor Joel 24 hours a day and have to carry extras such as oxygen tanks and suction machines when they go out as a family.

Claire, from Potters Green, Coventry, said: “Of course we cannot just leave him as other friends and family are not trained to treat Joel……. Zoë’s Place has been a gift from God as without the respite care the hospice provides we know we wouldn’t be able to cope.”

Bereaved parent Gabriella Walker has written an open letter to Health and Social Care Secretary Matt Hancock, calling on him to make sure Simon Stevens honours his commitment to protect and increase children’s hospice funding. This Children’s Hospice Week, Zoë’s Place is joining Together for Short Lives in calling on the public to sign Gabriella’s letter. This, alongside the full report of Together for Short Lives’ survey findings, will be available on Thursday 20 June from: https://www.togetherforshortlives.org.uk/statutoryfunding.

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