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Supporting improved end of life care campaign for seriously ill children

Hospice in the Weald and charity Together for Short Lives are urging local residents to sign an open letter to ensure all children at the end of their life are given access to 24/7 palliative care at home.

Urgent action is needed following shocking findings in a new report, published today (19 May) by Together for Short Lives, that shows seriously ill children and their families face a postcode lottery when trying to access end of life care at home. The report revealed that care at home provided by community nurses with advice from specialist consultants (in line with National Institute for Health and Care Excellence quality standards), is available in just over half of local authority areas in England during normal working hours. And it is met in less than a fifth of areas 24/7.

Hospice in the Weald supports the national campaign #EveryDayEveryNight for every family to get the right palliative care support and is urging the public to get behind the open letter and take action.

Boy laughing in children's centre

Nick Farthing, Chief Executive of Hospice in the Weald, said: “We are urging our local community to get behind the #EveryDayEveryNight campaign. We must all come together to ensure that more services and support are available for children with life-limiting or life-threatening conditions and their families, for whom time is short.”

Andy Fletcher, CEO for Together for Short Lives, added: “Having access to specialist children’s palliative care, when and where they need it, must be afforded to every family caring for a seriously ill child. If ministers do not act now more and more seriously ill children and their families will be denied choice and control over their palliative care, especially at end of life.”

Kent and Medway ranked 10th in a list of the areas in England with the highest number of cases of life-limiting and life-threatening conditions among children and young people (3,301 cases) and were found to have only ‘partial’ access to available end of life care.

Meanwhile Sussex ranked 13th, with 2,980 cases of life-limiting and threatening conditions among children and young people, and only ‘partial’ access to end of life care being available to families.

Where there are higher numbers of cases of children and young people with life-limiting/threatening conditions within an area, it is likely there will be a higher demand for palliative care and support.

siblings playing in tunnel

Hospice in the Weald has provided free care for adults with a terminal illness, and those important to them, in West Kent and northern East Sussex for more than 40 years. The Hospice is now extending this to develop a new service for children and young people.

“With predicted population growth and an increasing number of children with life-limiting and life-threatening conditions living longer, the demand for children’s palliative care services continues to grow,” said Nick Farthing, Chief Executive of Hospice in the Weald. “To help address this, Hospice in the Weald is developing its first service for children and young people and their families.”

The Hospice will provide support for families through home visits, counselling for parents and siblings and is developing a new Children’s Centre with specialist play and sensory rooms. Once established, the Hospice Leadership Team will grow the service and work towards providing out of hours care.

Nick added: “Meeting the basic care needs of a child with these conditions is all encompassing for parents, so we intend to ease the strain by offering home visits, emotional support and by creating a Children’s Centre for family time and respite for those parents who need a break during the day from their caring responsibilities. We want to make life easier for families who care for their children under such difficult circumstances.”