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South West Children's Charity Supports National #FollowtheChild Initiative

A South West charity which cares for terminally ill children within their own homes has lent its support to a new national initiative which aims to give families the ability to make their own personal palliative and end of life care choices regardless of their postcode.

Jessie May, which supports seriously ill children in Bristol, Bath, South Gloucestershire, Wiltshire and North Somerset, is supporting the #FollowtheChild campaign which has been launched by a coalition of six national charities.
 
The coalition, which is made up of Together for Short Lives, The Brain Tumour Charity, CLIC Sargent, Teenage Cancer Trust, Marie Curie and The National Gold Standards Framework Centre in End of Life Care, pressed their ambitions for better end of life care at a Westminster reception on 31 January and has called for the Government to put an end to the cruel postcode lottery facing parents with dying children.
 
The coalition, has asked that the government meets its end of life choice commitment for babies, children and young people, by implementing the NICE (National Institute for Health and Care Excellence) guideline on providing children’s palliative care. NICE calculates that by investing £12.7million in implementing its guideline on end of life care for children, non-cash savings worth £34.7million would be released back into the NHS in England.
 
It is hoped that more children in the UK will have access to end of life care based on their needs, wishes and best interests - and are not restricted by the postcode in which they live.
 
Chris Roys, Chief Executive Officer of Jessie May, said: “The one thing we should, and must, do for a dying child is to ensure that they have as peaceful, dignified and pain free death as possible - in the place of their choice. Most often this will be in their own home.
 
“To know that so often this is not possible is heartbreaking. Families have to live with the trauma for ever. Jessie May was set up to try and ensure that children can have the choice to die at home just like Jessica May herself did.
 
“Government must commit the resources and funding to ensure that children wherever they live are properly cared for and supported at the end of their life. For every child and their family there is only one chance to get this right, it cannot wait.”
 
Jessie May was set up by the parents of Jessica May Purrington, a little girl who died at home aged four months, surrounded by her family and her nurses. Jessie May has a team of dedicated nurses who provide care to children and families during a child’s life and after their death. It costs around £1,400,000 to provide this care yearly.
 
For more information about the work of Jessie May visit www.jessiemay.org.uk

Jessie May Children's Charity Bristol

Jessie May Children's Hospice at Home

Jessie May is a Bristol based charity which provides palliative, end of life and bereavement care for terminally ill children and their families.

35 Old School House, The Kingswood Estate, Britannia Road, Kingswood, Bristol , BS15 8DB

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