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Lack of funding & lack of training equals lack of choice for children

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Together for Short Lives, the UK children’s palliative care charity, is calling on UK governments to invest in community children’s nursing teams with the skills, knowledge and time to deliver round the clock end of life care to terminally ill children and young people – and support local commissioners to provide choice to children and young people at the end of their lives. This call comes in response to the Royal College of Nursing’s survey into Children’s and Young People’s Palliative Care and its statement “Terminally ill children let down by poor end of life care” (published 23 June) which highlights that children are not always given the choice to die at home as there are not enough trained community children’s nurses to provide 24/7 children’s palliative care in the community.

There are 49,000 children and young people in the UK living with a life-limiting or life- threatening condition, which means they may need palliative care; 5000 children and young people die every year. Together for Short Lives wants to ensure that every family caring for a child or young person with a life-limiting or life-threatening condition has access to children’s palliative care in the setting of their  choice and whenever they need it – 24 hours a day, seven days a week.

Although there are some excellent examples of children receiving good end of life care both at home, in children’s hospices or in hospital, access to good 24/7 palliative care for children at home is not a reality for the majority of the UK. All too often families tell us that they struggle to get the support they need at home. Community nursing services are the bedrock of children’s palliative care, but if we do not invest in training and resourcing them, we will never achieve real choice for families. In the 21st century it is unbearable to think that too many families have little choice in where their child dies

Katrina McNamara, Director of Service and Practice Development

Together for Short Lives welcomes the RCN call for investment in community children’s nurses with the right skills to deliver palliative care to children. Specifically Together for Short Lives is calling for:

  • Terminally ill children and young people and their families to have access to information to enable them to make informed choices about where they receive end of life care around the clock – at home, in a children’s hospice or hospital setting.
  • Sufficient numbers of nurses with the skills, knowledge and competencies needed to care for children with complex and life-limiting and life-threatening conditions.  Nurses should be provided with training and support to help them talk to children and families about end of life choices, including where they wish their child to die.
  • NHS commissioners to commission 24/7 children’s palliative care services which include end of life care which make sure that children, young people and their families are able to choose how and where they are cared for.

Katrina McNamara, Director of Service and Practice Development said:

“Although there are some excellent examples of children receiving good end of life care both at home, in children’s hospices or in hospital, access to good 24/7 palliative care for children at home is not a reality for the majority of the UK. All too often families tell us that they struggle to get the support they need at home. Community nursing services are the bedrock of children’s palliative care, but if we do not invest in training and resourcing them, we will never achieve real choice for families. In the 21st century it is unbearable to think that too many families have little choice in where their child dies.”

“Providing excellent care and pain and symptom management for a dying child or young person, and supporting their family is one of the hardest challenges for nursing staff. These nurses need the very best training, knowledge and support, and the confidence to talk to families about end of life care. For this to be a reality, we need children’s palliative care to be prioritised by the government.  We urgently need more community children’s nurses with the right training, support and confidence to deliver round the clock care wherever and whenever families need it.”

“It’s so hard for families to cope with childhood death; we must do everything we can to help fulfil families’ end of life wishes for their child.”

Together for Short Lives is also pressing the government to implement similar recommendations from the recent House of Commons Health Select Committee (March 2015) following its inquiry into end of life care. The Select Committee recommended that the government and NHS England should set out how universal, seven day access to specialist palliative care can become available to all patients, and that training is provided for all health and social care staff providing care to people with life-limiting conditions.

Together for Short Lives provides essential guidance, tools and resources for nurses and clinical professionals to support the delivery of good end of life care for babies, children and young people with life-limiting and life-threatening conditions.

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