Working with a new government

23,500 children in the UK have palliative care needs. They deserve the best possible care and a real choice in where they receive it.

ACT has identified seven key actions that it wants the newly elected MPs to support to help all children who have a health condition that is life-threatening or will shorten their life.

These actions are designed to help give the best possible quality of life and care to all life-limited babies, children and young people and their families across the UK. Download a copy of ACT's Manifesto 2010: Living Matters for Dying Children.

You can help to keep children’s palliative care on the political agenda by sharing ACT’s manifesto with your newly elected local MP.

Please email or write to your local MP, together with a copy of ACT’s 2010 Manifesto.

You can use ACT's model letter to MP's and adapt it for your local constituency. Download a copy here.

Ask your MP what they will do for the UK’s 23,500 life-limited children; many of whom will not live long enough to have their chance to vote. Please email or post ACT a copy of your MP’s response to help us monitor our national lobbying.

ACT’s Manifesto 2010: Living Matters for Dying Children

ACT believes that:

• Living Matters for Dying Children. Every life-limited baby, child and young person deserves a tailor made and unique package of care and support that is right for their individual journey. All children with palliative care needs living in the UK should have equal access to care and support – no matter where they live.

• Families need help too. Coming to terms with the news that your child will die young is devastating. Parents and carers often provide 24/7 care for their children and the pressure of caring for a child with complex health needs is sometimes physically exhausting and unbearable. Siblings’ needs must not be forgotten. They bear an enormous emotional burden and need special help and support too.

1. Choice of where care is delivered
Give life-limited children and their families/carers a real choice in how and where they receive care and support by resourcing and developing more Community Children’s Nursing Teams or District Nursing Teams who can deliver care in the family home, which is where most families want it. Having care delivered in the home can make such a difference.

2. 24/7 care
Ensure that every baby, child and young person with palliative care needs has access to 24/7 care and support. Children with complex health conditions often need round the clock care and support, particularly when they are at their end of life. Parents need support night and day too.

3. Unique packages of care
Give every child with palliative care needs a unique package of care and support. Every child’s journey will be different and unique to them; they need access to a personal care plan that supports their needs, wishes, culture and beliefs. This package should be appropriate for their age, whether they are a baby, child or young person.

4. A seamless service for young people
Ensure young people’s transition from children’s to adult palliative care is a planned and seamless service; and invest in developing age-appropriate services that these young people want and need.

Between 6,000 and 10,000 young people have palliative care needs, but currently only a handful of dedicated hospice services for young people exist across the UK.

5. Choice of place of death
Give families and children a real choice in their place of death and end of life care. Few babies, children and young people have the chance to die at their family home or a children’s hospice; where most families say that they want their child to die.

Over 74% cent of children with palliative care needs die in hospital; with only 23% dying at home or in a hospice. For babies with palliative care needs, nearly all die in hospital (over 98%) and less than 1% of these babies is able to die at home with their families. ACT wants the next parliament to change this norm.

6. Universal emotional and bereavement support
Ensure every family is provided with good quality emotional and bereavement support from the point of their child’s diagnosis through to their child’s death and beyond. The needs of siblings and extended family members must not be forgotten.

7. Sustainable funding
Ensure sustainable funding is available to develop the services children and families need to provide care at home, in a children’s hospice or in hospital.

For this to become a reality, politicians need to ensure:

• Seamless service provision from diagnosis to end of life and through bereavement: building a true commitment to ensuring access to a full range of services based on the ACT children’s palliative care pathway approach to planning and delivering services around the child’s and family’s needs.

• Improved planning and delivery of care: based on effective children’s palliative care data collection and a true understanding of what palliative care means.

• Sustainable and effective funding: based on a true needs assessment.

• Effective regulation and audit: based on a recognition that services need to provide safe, high quality treatment.

• Strong partnerships: based on understanding and shared commitment to providing high quality care coordinated effectively between specialities and across settings and sectors.

• A competent, skilled, knowledgeable workforce able to provide and lead sustainable, high quality care to meet the unique needs of babies, children, young people and their families.