Children’s charity ACT says life-limited children should have more choice in end of life plans and place of death

23 March 2010
ACT, the leading UK children's palliative care charity, has launched a week of events and activities which focus on talking about death, dying and bereavement. The week’s events will include promoting ACT’s new Prompts for care in the last days of a child’s life, a resource which is designed to help professionals think about the key things to plan and discuss with families and children to help them have the best possible end of life. Download a copy here www.act.org.uk/prompts

Children’s charity ACT says life-limited children should have more choice in end of life plans and place of death

 

ACT, the leading UK children's palliative care charity, has launched a week of events and activities which focus on talking about death, dying and bereavement.  The week’s events will include promoting ACT’s new Prompts for care in the last days of a child’s life, a resource which is designed to help professionals think about the key things to plan and discuss with families and children to help them have the best possible end of life. Download a copy here www.act.org.uk/prompts

 

These activities are all part of a wider national action to promote public awareness by the Dying Matters Coalition, of which ACT is a member. ACT is one of just under 7,000 member organisations who have joined the national Dying Matters Coalition, with an interest in supporting changing knowledge, attitudes and behaviours towards dying, death and bereavement.


During Dying Matters Awareness Week (15-21 March) ACT will be talking about dying, death and bereavement and raising awareness of what this means for babies, children and young people with palliative care needs. ACT wants these children to have real choices in their place of care and death, and as good as possible end of life experience. The charity is encouraging people to think about end of life plans and download a range of resources that can help the families involved to talk about planning for death; ACT also wants to give professionals the tools they need so they can help more families.

There are 23,500 life-threatened or life-limited children in the UK – and half of these children will have substantial palliative care needs. But not enough children and their families are able to choose where they spend their last days. Many families tell ACT that they want to have more choice for their child’s care to be delivered at home and the opportunity at end of life, for the child to die at home or in their local hospice.

 

Over 74 per cent of children and young people with palliative care needs die in hospital; with only 23% dying at home or in a hospice.[i] For neonates with palliative care needs, that is babies under 28 days, nearly all die in hospital (over 98%) and less than 1 per cent of these babies are able to die at home with their families.  [ii] ACT wants to challenge this norm.

In Dying Matters Week ACT will be speaking at a range of training events and conferences across the UK and talking about dying matters for life-limited children. 

 

15 March - ACT presents on the challenges of collaborate working and talks about it’s end of life prompts at the Yorkshire and Humberside Improvement Partnership, Children’s Palliative Care Network Launch in Bradford. 

16 March – ACT speaks about supporting children to have a good life and good death at the Disabled Children's Services London event Transforming Disabled Children's Services - Working in Partnership to Aim Higher.

17 March – Running a training session on Advanced Care Planning and Understanding of End of Life Plans for young people session at an ACT training event in Bristol.

 

18 March – Attending the launch of Advance Care Plans for children and young people at the South Central Strategic Health Authority Dying Matters Launch event in Oxford. ACT will meet with the first ever UK Chair in Children’s and Young People’s Palliative Care to identify key issues for life-limited children.

19 March -Talking about end of life care for babies at the launch of ACT’s Neonatal Care Pathway at the Little Haven’s Neonatal Palliative Care Conference in Essex.

 

ACT Chief Executive Lizzie Chambers said: “Thinking about death and dying is still a taboo subject, and it’s often especially hard for parents to think about planning for their child’s death. But those families who are able to talk, plan and are supported to have their child die at home say they really appreciate having plans in place and the time to develop precious memories of their child.

 

We want to help more families to talk about death and to have a real choices. We want to support professionals so that they have the tools, resources and confidence to talk about death and dying and help families do what is best for their child and to support them through their grief. Taking time to think about end of life wishes should be encouraged and supported when it is known that the child is life-threatened or life-limited”.

 

ACT publishes a range of tools and resources to help professionals talk to families about planning “a good death.” These tools can help professionals to talk about difficult issues. 

For more information and resources about ACT, and about end of life, use the following urls: 

 

ACT website: www.act.org.uk

Prompts for care in the last days of a child’s life: www.act.org.uk/prompts

ACT Publications and tools: www.act.org.uk/resources

ACT care pathways: www.act.org.uk/carepathways

End of life planning: www.act.org.uk/endoflife  

ACT can provide specialist support around developing end of life plans. Please contact ACT on 0117 916 6422, email info@act.org.uk or visit www.act.org.uk for more information

 

 

ENDS

Contact

Myra Johnson, PR & Communications Manager: myra@act.org.uk 0117 or 916 6425

Susannah Woodhead, Communications Officer: susannah@act.org.uk or 0117 916 6427

 

 

Ends

 

 

Notes to Editors

  1. About Prompts for care in the last hours and days of a child’s or young person’s life
    You can download a free copy of ACT’s Prompts for care in the last hours and days of a child’s or young person’s life from ACT’s website, by visiting www.act.org.uk/prompts
  2. If you would like If you would like more information or some specialist support around these prompts or in developing end of life plans please contact ACT on 0117 916 6422, email info@act.org.uk or visit www.act.org.uk
  1. About ACT
    ACT is the only organisation working across the UK to achieve the best possible quality of life and care for every life-limited or life-threatened child or young person and their family.

    ACT supports a children’s palliative care professional and family membership across the UK and provides a national helpline and information service. ACT produces a range of publications and resources, including care pathways for life-limited or life-threatened children and young people, and publishes the International Journal for Children’s Palliative Care.

    ACT takes a lead on lobbying and campaigning for sustainable children’s palliative care services and plays a key role in ensuring that the needs of all affected children and their families are heard.


ACT
Brunswick Court,
Brunswick Square,
Bristol, BS2 8PE
Tel: 0117 916 6422  Fax:  0117 916 6430
Helpline: 0845 108 2201
info@act.org.uk  www.act.org.uk

 

  1. About children’s palliative care
    Children's palliative care is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the whole family and includes the management of distressing symptoms, provision of short breaks and care from diagnosis through death and bereavement.
  2. About life-limiting and life-threatening conditions
    Life-limiting conditions are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on parents and carers.

    Life-threatening conditions are those for which curative treatment may be feasible but can fail, such as children with cancer. Children in long-term remission or following successful curative treatment are not included.

 

There are estimated to be 23,500 life-threatened or life-limited children in the UK – and half of these children will have substantial palliative care needs at any time. It’s estimated that around 80,000 to 100,000 family members and carers provide 24-hour care and support for a child – many of whom have very complex health care needs and disabilities.

 


[i] Department of Health, Palliative Care Statistics for Children and Young People, London (2007)

[ii] [ii] Department of Health, Palliative care Statistics for Children and Young People, London (2007)

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