Thursday 20th June 2013
Dr Paula Reed, Senior Macmillan Project Coordinator, describes the work of a Macmillan-funded pre-bereavement service for children and young people who have a family member with a life-limiting or very serious illness
Since 2006, Jigsaw South East has been providing support and advice to children and young people who have suffered the loss of a loved one.
In April 2012, in response to enquiries about pre-bereavement support, and from young people who had been through the Jigsaw Grief Support programme, Jigsaw South East and Macmillan Cancer Support set up the Macmillan Family Support service as a two-year partnership project.
Macmillan has funded three part-time practitioners from different and complementary professional backgrounds in nursing, research, counselling, play therapy, drama therapy and early years practice.
The project aims to support children and young people aged 0-19 with a family member who has a life-limiting condition, including parents, siblings and grandparents. As it is a Macmillan-funded project, 80% of referrals are cancer related.
How the service is run
The main office is in East Grinstead, but the service covers Surrey and surrounding towns, accepting enquiries directly from people in need of support and referrals from professionals, by phone or via the website. Enquiries are logged and the details of those requesting support are emailed to the team, who work remotely from home.
New cases are allocated to team members according to existing caseloads, borough and need. For example, with a child aged 3–13 exhibiting worrying behaviour, play therapy might be best, in which case, I’d take that on. If the query was from a school about how best to support a child, any team member could take the case, depending on capacity.
Research shows that despite a significant negative impact on emotional wellbeing, not all children and families require specialist intervention. Indeed, the variable nature of life-limiting illness and the uncertainty experienced by children and families necessitate a flexible, needs-led approach to the work.
Our tiered model of intervention, therefore, offers a range of responses, including approaches to whole schools, in which we help them introduce bereavement plans, talk with teachers about how to best support pupils in school, and provide information on how children may experience illness and loss in the family.
More specialised interventions for some children and young people include play therapy sessions, thinking with the family about creating memories, listening out for children’s questions and talking through how they may respond.
Successes to date
During the past year we have worked hard to get our service known across Surrey by visiting hospital and hospice teams, as well as schools and other voluntary organisations. Some of our achievements include:
- building working relationships with local hospices, sharing skills and facilitating referrals
- visiting schools to discuss the staff’s concerns about serious parental illness and bereavement among children, including the development of bereavement plans
- support and advice to key workers in schools such as home-school link workers, who already have good relationships with children and their families
- sibling groups. To date, there has been one with an older group thinking and talking about their experience. We are now talking with Royal Surrey County Hospital (RSCH) about developing a group for children and young people, with the same, or similar, diagnoses, who are experiencing the loss of their peers
- one-to-one play therapy for some of the more vulnerable children in five schools across Surrey.
We have a number of plans for the service. First, we hope to develop the role of volunteers, both in the direct work with families and as fundraisers. Also, in collaboration with the University of Surrey, the team is exploring ways to identify children who are most vulnerable when a parent has a life-limiting diagnosis. These include those from one-parent families and those where there is mental illness, domestic violence or drug and alcohol misuse.
Then, there is the Think Family project. In ‘Phase One’, we are working with Frimley Park, Ashford St Peter’s and, possibly, RSCH acute trusts to raise awareness among frontline staff of the needs of children with a family member with poor prognosis, and develop a tool to identify them early in an attempt to involve our team before things reach a crisis point.
‘Phase Two’ will aim to raise awareness in schools, by considering what staff might find difficult about supporting these children and using the same tool to bring children with particular needs to the attention of staff.
To contact Macmillan Family Support, call 01342 313895 or visit the Jigsaw South East website. Jigsaw South East has a sister organisation, Jigsaw4u, also partfunded by Macmillan, which works with families in Sutton and Merton. To contact, call 020 8687 1384 or visit the Jigsaw4u website.
The Macmillan website has sections for young carers of people with cancer and teenagers and young adults who have cancer.
Email Dr Paula Reed, Senior Macmillan Project Coordinator Jigsaw South East.
1. Akerman R and Statham J. Childhood Bereavement: a rapid review of the literature [PDF]. Childhood Wellbeing Research Centre. 2011