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Coping with childhood cancer

As we approach Childhood Cancer Awareness Month, it is time to examine what support is available to families affected by a child with this disease

This September is Childhood Cancer Awareness Month; a chance to raise awareness of the impact cancer has on children and their families. Children with cancer, like all children, have a right to achieve their full potential, both during their treatment and in laying foundations for their future. At CLIC Sargent we have developed our understanding of how our nurses can best support children and young people with cancer across the UK, from the point of diagnosis onwards. 

CLIC Sargent nurses work as part of the wider multi-disciplinary teams (MDTs) both in principal treatment centres and hospitals designated as shared care centres for childhood cancer across the UK. In providing care in the local community, we aim to ensure we can deliver as much treatment at home as is safely possible. This means less time travelling to and from hospital, less time spent away from school and, crucially, more time with their family and friends.

When a child or young person is diagnosed with cancer, a CLIC Sargent nurse will aim to meet them and their family while in hospital, enabling them to establish an initial link and develop a professional relationship with us, and be reassured that specialist cancer nursing support is available not just in hospital but throughout each stage of the treatment pathway. One of our major roles is to visit children in their homes, providing support and specialist knowledge pertaining to the specific diagnosis, treatment regime and associated symptom management, alongside carrying out medical procedures such as blood tests, monitoring toxicity and supporting chemotherapy administration.

We find that children with cancer are really concerned about being as 'normal' as possible. Being at home gives them the opportunity to do exactly this. Where possible, nurses will also visit children at their school to carry out blood tests, reducing the disruption to their education. 

As outreach nurses, we also provide the child and their family with advice on side effects, such as hair loss and sickness, alongside nutritional guidance. Parents often talk to us about their concerns after their child is discharged, including their risk of infection and caring for a central line. Our aim is to make sure families are given the confidence to get back to a degree of normality as smoothly as possible. Families have said that the support provided at home enables them to reflect on information provided, as they are not always aware of what support they will need until faced with a particular situation. 

Where possible, a CLIC Sargent Nurse will offer additional support, for example liaising with the child's school to explain what has happened and offering to speak to the class about how the child's life will be affected by the diagnosis and what this may mean for their friends. We try to speak very generally to the children about their classmate's condition, without dwelling too much on cancer. One of the most common questions is “can I catch it?” Not every situation is the same. With teenagers, for example, many prefer not to draw attention to their situation so don't want us to talk to their peer group but are happy for us to speak to their teachers. The most important factor is to negotiate which approach and support they would like in school, which is individualised rather than adopting a 'one size fits all' approach.

We also provide palliative care and bereavement support where necessary. If treatment options have been exhausted we will offer the family the choice, where possible, to have the child cared for at home, in hospital or in partnership with the local hospice. If a family wishes for the child to remain at home, our role would be to coordinate the package of care required to ensure a sustainable and safe service is provided alongside other potential community partners. Alongside this, we provide specialist knowledge and symptom management support, including managing potentially escalating pain relief. This can include supporting the family through difficult choices as disease progression occurs. It is vital to look at the bigger picture and liaise with different agencies to bring the best possible package of care together.

In 2013/14 CLIC Sargent nurses supported 1,570 children and young people and their families - an increase of 9% compared to 2012/2013. They attended more than 10,000 home visits, helping parents feel more involved with choices around their child's care and reducing hospital visits. Our nurses arranged a further 9,261 home visits by local community nurses, GPs and specialist palliative care teams.