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Children palliative care 'patchy' Children palliative care 'patchy'
(about 23 hours later)
Families of terminally ill children have to fight for support and often fall through the gap between social services and the NHS, an inquiry says.Families of terminally ill children have to fight for support and often fall through the gap between social services and the NHS, an inquiry says.
The Children's Palliative Care review said there was a lack of information and patchy provision in England.The Children's Palliative Care review said there was a lack of information and patchy provision in England.
Experts said "hard-pressed parents were exhausted" and called for better funding and co-ordination of services.Experts said "hard-pressed parents were exhausted" and called for better funding and co-ordination of services.
Ministers said they would be launching a strategy at the end of the year to deal with the issues.Ministers said they would be launching a strategy at the end of the year to deal with the issues.
There are more than 20,000 children and young people in the country requiring specialist care because of either life-threatening diseases, such as cancer, or life-limiting degenerative disorders.There are more than 20,000 children and young people in the country requiring specialist care because of either life-threatening diseases, such as cancer, or life-limiting degenerative disorders.
We need to deliver a system that is fit for the future and provides the right care in the right places at the right time Ivan Lewis, health ministerWe need to deliver a system that is fit for the future and provides the right care in the right places at the right time Ivan Lewis, health minister
Palliative care for children, as for adults, is either carried out at home with the support of community nurses, in hospices or in hospitalPalliative care for children, as for adults, is either carried out at home with the support of community nurses, in hospices or in hospital
Lottery aidLottery aid
The inquiry, commissioned by the government and produced by Professor Sir Alan Craft, president of the Royal College of Paediatrics and Child Health, and senior civil servant Sue Killen, found that parents were left frustrated by the system. The inquiry, commissioned by the government and produced by Professor Sir Alan Craft, a former president of the Royal College of Paediatrics and Child Health, and senior civil servant Sue Killen, found that parents were left frustrated by the system.
They reported that all too often they struggled to get respite care and support at home as they were passed back between council social services and NHS trusts.They reported that all too often they struggled to get respite care and support at home as they were passed back between council social services and NHS trusts.
In particular, families said they wanted community teams to operate 24 hours a day, which would allow them the choice of where children spent their final days. About 4,000 terminally ill children die each year.In particular, families said they wanted community teams to operate 24 hours a day, which would allow them the choice of where children spent their final days. About 4,000 terminally ill children die each year.
Parents often complain that their children are forced into hospital as there is inadequate specialist care available in the community.Parents often complain that their children are forced into hospital as there is inadequate specialist care available in the community.
The report also said long-term funding arrangements must be established for the sector.The report also said long-term funding arrangements must be established for the sector.
Hospices run by charities provide a major part of the care.Hospices run by charities provide a major part of the care.
In recent years, these have been heavily reliant on lottery money, but that has now come to an end and ministers are giving £27m to help cover costs over the next three years.In recent years, these have been heavily reliant on lottery money, but that has now come to an end and ministers are giving £27m to help cover costs over the next three years.
The report suggested networks of care be established utilising pooled budgets for NHS and local government bodies.The report suggested networks of care be established utilising pooled budgets for NHS and local government bodies.
SpendingSpending
It also said an overall strategy needed to be drawn up to set out a long-term vision for the sector and help the NHS and councils learn from the pockets of good practice that can be found.It also said an overall strategy needed to be drawn up to set out a long-term vision for the sector and help the NHS and councils learn from the pockets of good practice that can be found.
Professor Craft said: "Overall, the review found a lack of sustainable funding and strategic planning and unacceptable variations in the provision of services and levels of spending."Professor Craft said: "Overall, the review found a lack of sustainable funding and strategic planning and unacceptable variations in the provision of services and levels of spending."
The government responded by pledging a strategy would be drawn up by the end of the year.The government responded by pledging a strategy would be drawn up by the end of the year.
Health Minister Ivan Lewis said: "We need to deliver a system that is fit for the future and provides the right care in the right places at the right time."Health Minister Ivan Lewis said: "We need to deliver a system that is fit for the future and provides the right care in the right places at the right time."
Lizzie Chambers, of the Association of Children's Palliative Care, a support group for parents, said: "Children with life-limiting or life-threatening conditions deserve better.Lizzie Chambers, of the Association of Children's Palliative Care, a support group for parents, said: "Children with life-limiting or life-threatening conditions deserve better.
"Their families are fighting to get the help they need and this has to stop.""Their families are fighting to get the help they need and this has to stop."