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Over 6,500 call on the Prime Minister to fund, not fail seriously ill children

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Toby Porter CEO Acorns Children’s Hospices, Catherine McKinnell MP, Andy Fletcher CEO Together for Short Lives, Kirsty Murray Mother and ambassador of petition, Steph Nimmo Mother and Together for Short Lives ambassador, Baroness Brinton, and Dr Amy Volans Newham Diana Children's Community Team.

We have delivered a petition to 10 Downing Street which is calling on the government to fund, not fail seriously ill children in England.

Signed by 6,670 people, the petition calls on Prime Minister Theresa May to use some of the 3.4% NHS funding boost she announced in June to:

  • increase the NHS England Children’s Hospice Grant to £25 million a year
  • bring about parity of funding between children’s and adult hospices in England
  • develop a funded, cross-departmental government children’s palliative strategy for England.

As the number of children with life-limiting conditions increases, demand for children’s palliative care is growing. But the funding for services hasn’t kept pace with this demand and has become a postcode lottery. Whether or not families can access the care they need from hospitals, children’s hospices or community teams, depends on where they live.

For example, children’s hospices are charities, and only receive about 20% of their funding from the state, far less than adult hospices. And on average, the overall amount of statutory funding they receive has been falling year on year (22% in 2015/16 compared to 23% in 2014/15 and 27% in 2013/14). Meanwhile adult hospices receive 33%. Without increased funding, children’s hospices may need to cut vital services for children.

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

“Through our petition, the message given by the public to the Prime Minister is clear: as a country, it is time we increase the contribution we make to the care that our most vulnerable children and families depend on. Time is short for children with life-limiting conditions. Without urgent action from ministers to protect and increase children’s palliative care funding, seriously ill children will miss out on the palliative care they need to stop them from reaching crisis point.”

Kirsty Murray, mother of Ella who died aged two from a rare genetic disorder called Miller-Dieker Syndrome – and who was supported by Acorns Children’s Hospice, said:

“I am delighted that thousands of others have joined me in calling on Theresa May to increase statutory funding for children’s palliative care services. Acorns were amazing and helped us to get the most out of Ella, whilst supporting us as parents. They guided us through the most difficult time in our lives and without them I wouldn’t have known where to start. But the funding that services like Acorns receive has been falling in real terms. If this continues, I am deeply concerned that other families like ours will not receive the vital care and support that will keep them going as well as being forced to limit their end of life choices.”

Toby Porter, the CEO Acorns Children’s Hospice, which runs three children’s hospices in the Midlands added:

“The Children’s Hospice Grant is a genuinely critical source of income for our sector and directly translates into vital services delivered to children and their families. But, welcome medical advances mean we are caring for more children and young people with more complex health issues over longer periods of time, and families are relying on children’s hospices more and more. Hospices are the only places families can turn to that bring together the facilities and experience they need to cope with the huge medical, physical and emotional challenges they face, every single day. In the light of the welcome news about the increased investment in our NHS, we hope and expect NHS England to recognise that children’s hospices face exactly the same cost pressures as the wider NHS, and to therefore take the opportunity to increase the Children’s Hospice Grant at its next renewal in April 2019.”

MPs at Westminster have also joined the campaign. Many have signed Early Day Motion (EDM) 1564, which asks the government to take the action we set out in our petition. The EDM was tabled by Labour MP Sandy Martin, supported by Ruth George MP, Catherine McKinnell MP, Sir Peter Bottomley MP, Ruth Cadbury MP and Kate Green MP.

Andy Fletcher, Kirsty Murray and Toby Porter were supported in delivering the petition to 10 Downing Street by:

  • Dr Amy Volans, Clinical Psychologist and Systemic Family Psychotherapist, Newham Diana Children’s Community Team
  • Steph Nimmo, Mother of Daisy and Together for Short Lives Parent Ambassador
  • Catherine McKinnell MP, Labour MP for Newcastle upon Tyne North and Co-Chair of APPG for Children Who Need Palliative Care.
  • Baroness Brinton, President of the Liberal Democrats.

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