The burden of bereaved children in society Jane Fitz Ilora Finlay Wales Palliative Care Strategy Implementation Board

Wales

But what about the children affected?

Principles of strategy • Fairness of service availability • Patients’ needs met – wherever they are – Integration / fast track

• • • •

Evidence based Consultant led clinical teams 24 / 7 Also children and teenagers / transition

Children / adolescents palliative care needs Few

High level Palliative care Increasing Sp Pall Care need

Low level

Number of children

Most

Wales 2007 Total Children population 5-17 yr

All deaths in 2007

2,979,000

32,148

636,600

Deaths from cancer 8,562

Wales Government statswales Cancer Intelligence Wales

Children aged between 0-17 142,40

27,300 63,800

77,100

103,900

126,500 95,600

Bereaved young people and children of school age in Wales • 21,950 - parent or sibling = 1 in 29 • 39,800 - a friend = 1 in 16 • March 2009 ~ 5000 children in care

How do they see the death?

Where do children go? Those who contacted Childline (UK, 08-09 3,025 bereaved) [National Service Framework section 2.55] were advised to also contact; • • • • • • • • • •

Cruse Bereavement Care - the Youth Involvement Project The Child Bereavement Charity BrakeCare, SCARD or RoadPeace [road crash] CRY [young cardiac death] Epilepsy Bereaved Miscarriage Association SANDS [stillbirth & neonatal death society] SAMM [murder or manslaughter] Survivors of Bereavement by Suicide Winston’s Wish

Cruse support / bereaved 45000

39800

40000 35000 30000 25000

21950

20000 15000 10000 5000

260

446

27

1 to 1

seen

not seen

0 parent/sibling

other

Hospices • 21 (3 NHS) + 7 SPC networked teams • 4 provide an open access children’s bereavement service • 8 can support siblings or children of patients

Services available in Wales • • • •

Wide variation Little £ support Staffed mainly by volunteers Cruse Bereavement Care Cymru - in every local authority – management costs funded in 5/22, core costs in 4/22 • Other services in 9/22 • Very little for – those in care and their carers – all other children considered vulnerable

• More support - death from cancer or other life-limiting conditions + pre-bereavement support

Outcomes?

Experienced death of a parent, sibling or friend • ~ 60% more likely to be excluded from school at some point • Risk increased – Depression – Suicide – Drugs / alcohol – Not reaching full academic potential – Teenage pregnancy Joseph Rowntree Foundation and the Child Bereavement Network

School Council Strategy • Students in half of the Senior Schools in Wales currently have access to a school counsellor • Bereavement and loss identified as a major issue these students bring to school counsellors • Pilot schemes are operating in several primary schools

Good provision for bereaved children

Outreach  & specialist support for  vulnerable or traumatised 1:1 support & groups for children and young people  Support for parents & carers to help their children

An easy to access assessment process to agree  who & what could help a particular family 

Information about how children grieve, what can help  & what services there are

CBN - Grief Matters for Children – a Call to Action

Key message On average every school class has • A child who has lost a parent or sibling • 2 who have lost someone else close A societal issue School is the common point of contact Bereavement care is the most effective form of preventative medicine

Wales • 4,941 looked after children, 237 in short-term foster placements – 10% had >3 placements in 1 year

• 65+ in prison or in a secure child’s home • ~100 recognised unaccompanied asylum seekers • 82 independent children’s homes • 32 Local Authority homes – 12 are also schools

• In addition – 25,000 children identified as in need – > 2000 on the Child Protection Register

Health or education depts? •

Lead Director in Children’s Services in each Local Authority – Clear lines of communication and processes between all the agencies – Pre-bereavement support where possible

•

Funding – cost effective and sustainable – Child Bereavement Network, – Train adults working in voluntary and statutory sectors – Support management costs for Cruse in all areas

•

Schools – Provide & signpost a range of services for pupils to access – Include loss & bereavement in programmes from aged 5 - 18 • learn about death and bereavement as part of life

– Have clear processes to identify bereaved – Appropriately trained adults to help assess their needs

•

All schools consider introducing the Seasons for Growth Programme

Cruse Bereavement Care Wales • Wales Assembly Govt funds the Children's services officer • Cruse foundation training [60 hours] and additional training [60 hours] to work with children and young people. • Pilot Awareness in Bereavement Course - 60 hours - volunteers - qualify to work with children and adults. • Happening first in Wales because of dedicated funding from Welsh Assembly Government.

Child Bereavement Network 1. Grief Matters for Children Campaign 2007 2. Briefing on Childhood Bereavement 2007 3. Key findings from new CBN and NCB research on bereaved children 2009 The CBN is the national , multi-professional network for organizations and individuals working with bereaved children, young people and their families. Established in 1998 it has approx. 245 subscribers, all of whom subscribe to the CBN Mission, Aims, Belief and Statement and guidelines for Best Practice.