Research into the Child Bereavement Services in Wales
Report for the Palliative Care Implementation Group
Bereavement is the experience of those left behind after someone has died.
Bereavement care is the most effective form of preventative medicine (Foreword to the guidelines for Release, the bereavement support for children and young people in Wrexham).
Bereavement and loss has been identified by secondary school students as one of the major issues which they bring to school counsellors; it is a significant issue which is troubling young people. (Sylvia Jones, Co-ordinator for School – based Counselling DCELLS-SLD August 2010).
All information from this report should be referenced as: Fitz C J. Palliative Care Strategy Implementation Board Report on Child Bereavement. Welsh Assembly Government. October 2010. http://www.wales.nhs.uk/sites3/home.cfm?orgid=831.
This research was commissioned by the Palliative Care Strategy Implementation Group on behalf of the Minister for Health and Social Services, Ms Edwina Hart. Its purpose is to determine what services are available across the Principality for children and young people who are bereaved from the death of a significant person in their lives. It is also to make recommendations intended to ensure that every child and young person affected has access to appropriate support, wherever they live and however they have been bereaved.
Acknowledgements
My thanks go first to Professor Ilora Finlay who suggested that this research should be undertaken and was instrumental in commissioning it; she also provided invaluable inspiration, help and advice both in the conduct of the research and the writing of the report. My thanks also to Ms Lisa Miller, the Director of Operations at the Velindre Cancer Centre, Cardiff, for her encouragement and support and to the members of the office staff at the Velindre Cancer Centre who processed and sent out the questionnaires.
Throughout, Alison Penny, the Principal Officer, Health Well-being and Environment Co-ordinator at the Childhood Bereavement Network (CBN) in London provided essential information, motivation and direction. Extensive use has been made of CBN publications, questionnaires and conferences to inform this research and the report.
Finally my thanks to all who participated in the research who were generous with the time they gave responding to questionnaires, answering queries either on the phone, via email or in interviews, telling me of the services they were offering and giving advice from their experiences for the recommendations that are included. It was evident that those who responded were convinced of the need for equality of access to bereavement support for all children and young people across the Principality
Jane Fitz
November 2010
EXECUTIVE SUMMARY
How many are affected?
· It is estimated that at least 21,000 young people and children in Wales (1) under the age of 18 have experienced the death of a parent or sibling and at least 37,000 may have been bereaved of a close friend or another close family member.
· Bereavement may have particularly harmful implications for those who are already vulnerable, living in disadvantaged circumstances or who have experienced multiple problems. One third of all children in Wales (2) live below the poverty line, 96,000 in severe poverty (3), the highest percentage in the UK and 78 children out of every 10,000 are looked after compared with 55 per 10,000 in England (4).
What is needed? A range of services and resources, not all will need specialist support.
Role of the Assembly Government
The need has been recognised and recent initiatives include The School Counselling Strategy, the funding of a Children’s Officer for Cruse and the funding for training more bereavement support volunteers for children and young people for Cruse. However even when the majority of children in maintained schools has access to a school counsellor and a range of resources, other services will still be necessary to assess the needs of the families, support the carers and parents and offer specialist support to those children and young people who are vulnerable or traumatised. A number will not have access to a school counsellor.
Other Services available
· It is evident that there is a disparity in the provision and there is relatively little financial support from the statutory bodies. The services available are generally staffed by volunteers.
· Cruse Bereavement Care, Cymru is the only organisation offering support in every local authority.
· Other support is only available in 7 local authority areas.
· Those bereaved from death from cancer or from other life limiting conditions do have access to more support, including pre bereavement support if possible.
Recommendations
· Funding agreements for Health and Education should include an obligation to consider the needs of bereaved children whatever the cause of death.
· Each Local Health Board should support the development and provision of a dedicated trained volunteer bereavement support service which has a clear governance framework.
· The core professional qualification in health and education must include training about bereavement issues and this should be an assessment topic.
· All statutory bodies must improve on inter agency communication in relation to bereavement care and support and information technology governance frameworks must facilitate timely sharing of key information.
· It should be compulsory for all schools and for all organisations working with children and young people to provide and signpost a range of services.
· Loss and bereavement should be included in the schools’ Personal and Social Education programmes from aged 3 to 18 so that the pupils can learn about death and bereavement as part of life. Schools should also have clear processes to identify those who are bereaved and appropriately trained adults to help assess their needs. All schools should consider introducing the Seasons for Growth Programme.
(1) Wales government statswales website (2) Strengthening the Child Poverty Bill, a Save the Children briefing 2009
(3) Save the Children (2010) Measuring severe child poverty in the UK :Wales Poverty Briefing
(4) Martin Nerey, chief executive Barnardo’s, article in the Guardian June 28 2010
(5) Key findings Farouth et al, a CBN paper, 2010
THE SCALE AND SCOPE OF CHILD BEREAVEMENT
There were 629,380 children under 18 in Wales in 2009(1). The most recent study from CBN (Key Findings Farouth et al, 2009) explored the backgrounds and life experiences of more than 7500 children aged 5-16 years old and gives a clearer picture of the numbers of children and young people affected; it revealed that 3.5% i.e. approximately 1 in 29 have experienced the death of a parent, brother or sister, and 6.3% or 1 in 16 have been bereaved of a close family member such as a grandparent or a friend. There were 417,972 young people and children aged 5-16 in Wales in 2009(2) and using the CBN figures, 14,629 may have experienced the death of a parent or sibling and 26,322 may have been bereaved of a close family member or friend. Additionally there were 171,012 children under the age of 5 and 40,396 aged 17(2).
It can be estimated that the total number of children and young people who have been bereaved of a parent or sibling is at least 21,000 and the number affected by the death of a close family member or friend is at least 37,000 (assuming that the younger children may not have suffered from the same rates of bereavement as the older ones). If the figures for 5-16 year olds were applied to all children in Wales then 61,000+ have been bereaved of a significant person in their lives.
A recent literature review from the Joseph Rowntree Foundation and a paper from Alison Penny at CBN (Grief Matters for children; support for children and young people in public care experiencing bereavement and loss) has shown that bereavement may have particularly harmful implications for the lives of young people who are already vulnerable or living in disadvantaged circumstances, or who have experienced multiple problems. In Wales there is a significant number of such children and young people as indicated below.
· One third of all children live below the poverty line and 96,000 in severe poverty.
· 4,941 children were looked after and 237 children were in an agreed series of short-term placements at 31 March 2009. 10% of these children had three or more placements during the year. (2) Wales has more children in foster care than any other part of the UK as a proportion of children looked after i.e. 78 children out of every 10,000 compared with 55 per 10,000 in England. It is estimated (see the section on looked after children) that there are approximately 300 children and young people who are in residential Local Authority (LA) or independent residential homes.
· In 2009 there were 14,128 pupils in all schools with statements of Special Educational Needs (SENs) and 86,065 had special needs but no statement. 4,117 of these children and young people were in 43 maintained special schools (2).
· In 2009, there were 365 boys and 138 girls registered only in Pupil Referral Units (PRUs) and 811 boys and 343 girls dually registered at school and in a PRU (2).
· 86 young persons (YPs) are currently in a secure setting in Wales either at Parc Prison or at Hillside Secure Unit. The number of Welsh YPs in secure units outside Wales is approximately 34. (5).
· There are at least 100 unaccompanied young asylum seekers in Wales (3) and also a number of trafficked children. By the nature of trafficking accurate data are not possible to attain.
· In addition to the number of children and young people in the care system in Wales, there are 25,000 children identified as in need and over 2000 on the Child Protection Register (4).
The first part of this research was to map what bereavement support was available across Wales to support all bereaved children and young people. In light of the scale and scope of social disadvantage in Wales the second stage of the research concentrated on what support is in place for these particular children and young people and this is reported on in some detail under a separate heading.
1)Statistics showing the numbers for the total population rounded to the nearest 100 were obtained from the Wales Government statswales website (Appendix 2). The figures for the number of deaths from cancer in Appendix 2 are included because support is available to more children affected by the death of a family member from cancer in the Principality than for any other reason (figures from Welsh Cancer (2) statswales (3) Daisy Cole, Welsh Refugee Centre (4) Jacqui Moyle, the Vulnerable Children Branch DHSS (5) Youth Justice in Wale, Children’s Commissioner’s Office and Hillside.
IMPACT OF BEREAVEMENT
The most comprehensive and systematic research into this area has been undertaken by the Child Bereavement Network's Grief Matters for Children Campaign. Attached to this report are two briefings which describe the effects of bereavement on children and young people from the CBN; The summary of key issues for bereaved children and young people prepared for an all Wales conference on this issue in April 2007 and Key findings from new CBN and NCB research on bereaved children, published in November 2009. Both articles set out clearly the possible effects of bereavement BUT it is worthwhile reiterating in this report the following from the Key findings document.
Children who have experienced the death of a parent, sibling or friend are more likely than their non-bereaved peers to:
· Have had a serious illness themselves which included a stay in hospital – around 60% more likely
· Have a diagnosable mental disorder – around 55% more likely
· Have a parent who has had a serious mental illness – around 80% more likely
· Have a parent who has had a serious financial crisis – around 40% more likely
· Have been excluded from school at some point – around 60% more likely
There is growing awareness of the extent to which bereavement can lead to social and health problems of various kinds and not least in terms of educational attainment. The need has been recognised by the Assembly Government which is supporting a number of initiatives to educate children and young people about death so they can understand what it means to them and provide resources and help for those bereaved pupils in schools.
MODEL OF BEREAVEMENT SUPPORT
The diagram from the most recent CBN publication Grief Matters for Children – a Call to Action sets out clearly what support is needed for all children and young people and the specialist help that is necessary for some of them. The need for such support may change as the children and young people grow and develop and they may wish to receive additional or new support over time. A broad range of interventions is now available including the Internet, telephone, email, literature, DVDs, children’s activity groups, volunteer support, self help groups for carers and 1:1 support and/or counselling. It is important that an appropriately trained person is able to assess what support is needed.
It is a common misconception that all bereaved children and young people need counselling; a brief intervention may be all that is required. There are, however, significant numbers of vulnerable children and young people in Wales and many may need this level of support.