This comes from new research by The Open University with Hope Support Services, a charity which helps young people who are going through a family health crisis.
For the first time, research has identified the scale of the problem and the needs, often unmet, of these children and young people.
It recommends that government regularly collects national data, that it reviews and revises national and local policies and develops more flexible face to face support across education, health and social care professions.
The OU’s Professor of Education Jane Payler, co-author of the report, is also co-director of the Children’s Research Centre at the OU. She said: “Around a million children in the UK have a parent or carer who has a long-term serious illness such as cancer.
"Many of these children are experiencing distress, anxiety, become depressed and isolated, they fall behind at school and are often labelled ‘difficult’.”
The research investigated the need for support services nationally, examining the support young people needed, the ways in which Hope addressed those requirements and the benefits the children got from this service.
Co-author and co-director of the Children’s Research Centre Dr Victoria Cooper said: “Despite it being widely recognised that intervention and targeted support is the best way to help young people in this situation, there is limited provision across the UK which is inconsistent and lacking direction from government policy.”
The research report recommendations are:
To collect national data regularly;
To review and revise national and local policies, recognising that children and young people need additional educational support; that support services need to combine flexible face to face support as well as access via different media; that education, health and social care professionals need additional training to help understand the needs and experiences of children in this situation; that a vital aspect of support is a small network of trusted youth workers and peers experiencing similar situations;
To review accessibility of these services to those from minority backgrounds;
To involve young people in the design and delivery of support.
Hope’s chief executive Clare Thomas said: “Hope has been delivering a range of services to this group of young people for eight years. We therefore have evidence of their needs and the ways in which our work can make a long-term difference to their lives.
“However, this report will be vital to Hope’s future, to be able to be able to assess the level of need nationally and plan a response while persuading policy makers to take notice of this hidden group of children”.
Hope was established by Sue Trevethan in 2009. She was diagnosed with cancer three years earlier but found no support available for her three children as she battled the disease.
Lucy’s Story
Hope has supported nearly 400 young people over the past seven years, such as 16-year-old Lucy whose mother was diagnosed with breast cancer a year ago.
Although Lucy has older siblings, she is the only child living at home and has taken on some caring responsibilities.
She was diagnosed with depression due to the stress and upset of this health crisis.
Her school work has suffered, which she has found very upsetting.
Lucy uses the counselling support and workshop group through Hope and has found the online support particularly beneficial too.
