Palliative Care: How can we make a difference? Annual Conference 2009

How can we make a difference to children and young people with palliative care needs? Andrea Cail Director of Service Development CHAS

The breadth and depth of palliative care for children Chronic conditions Progressive incurable conditions Life-threatening illness Non progressive conditions ACT /RCPCH 2009 Guide to developing Children’s palliative care services

Palliative / treatment relationships ACT / RCPCH 2009 ( revised) Palliative Curative  As the illness progresses the emphasis gradually shifts from curative to palliative treatment  Highly technical invasive treatments may be used both to prolong life and improve quality alongside palliative care, each becoming dominant at different stages of the disease  No cure is possible and care is palliative from the time of diagnosis  At first it is not apparent that this will be a terminal illness and palliative care starts suddenly once that realisation dawns

This means Cancer remains the second largest cause of death in the 1yr – 19yr age group Deaths due to diseases of the - nervous system, - congenital anomalies - respiratory system almost double the percentage of deaths from cancer Increasing numbers of children and young people living with significant chronic illness and disability Waterson, T, Helms, PJ, Ward Platt, M (2006) Paediatrics: A core text on child health.

Challenges the focus in paediatrics is still on curing disease (Hutchinson et al 2003) aggressive treatment provided in tertiary paediatric centres is at odds with the philosophy of palliative care (Feundnter et al 2001) ‘End of life decisions represent complex ethical and moral dilemma’s that are likely to increase with advances in medical technology’ (Samanta and Samanta 2006)

Policy context for Children and Young People’s Health

Underlying Principles Child and Family first Developing sustainable services Equity of access and quality Improving quality / outcomes Workforce planning

How are we making a difference? Investment in managed clinical networks and specialist posts Identifying training and education needs Collaboration across the UK Research / evaluation Short Life Working Group – Young People

Care pathway approach ACT 2004 A keyworker will be responsible for ensuring joined up provision Access to services according to different stages in condition

Agreed standards with outcome measures Breaking news Planning for going home Multi-agency assessment of needs Multi-agency care plan End of Life plan ACT 2009 A Family Companion

Ongoing challenges Data – registers Care at the end of life Transition Working with children, young people and parents

Care at the end of life Understand what families want Reduce the number of children dying in hospital? Improve support at home – care pathway Research / studies Bereavement support

Celebrate transition!

How can we make a difference? ‘When I’m at home I go to bed at 10pm….my disability restricts me ‘cos I’m not able to put myself to bed and get up…there are less restrictions at the airport!’ ‘In this world, I’ll never forget that – seeing him do what I thought was not possible’ ‘when you are out in the world you feel like a Martian – no one understands what it feels like to be a bereaved parent, at RH we are all Martians together’

Palliative Care: How can we make a difference? Annual Conference 2009