Families with dying children must be put at the heart of care, new guidance from NICE (The National Institute for Health and Care Excellence) says.
We advise people working in health and social care to make sure mothers and fathers, brothers and sisters, get the practical and emotional support they need to care for a family member at the end of life.
Around 40,000 children and young people are estimated to be terminally ill in England. They can have complex needs and can require 24-hour care.
Parents, and often siblings, become carers as Dr David Vickers, consultant paediatrician chair of the NICE guideline committee explains: "Mothers and fathers can be forced into a medical role to provide the care their son or daughter needs. It is important for us to recognise this and offer help to alleviate the pressure."
Roy's sister Anita was born with hydrocephalus, often called 'water on the brain'. Her illness means she can experience blurred vision, severe headaches and have difficulty walking.
Roy wants to look after his sister and make her happy. To him, being a carer and a brother are one and the same.
But sometimes Roy needs time and space for himself. Time to study for exams, time to have fun with his friends and a space where he can talk to other people who, like him, are caring for their brother or sister who is dying.
The Elephant Club at Helen and Douglas House offers Roy that space. In this video he explains more about why the club is so important to him...
Part of supporting the whole family at this time is planning for their final moments together. Experts stressed how important this was.
The guidance says medical teams should talk to the child and their family about where they’d like to spend their final days together and help arrange that care where possible. The team should guide them through any treatment decisions they’ll need to make and ensure that spiritual support is available, if they want it.
NICE says the medical and social care team responsible for a child’s care at the end of life should be aware the needs of the family may change as the child’s illness progresses. The guideline says they need to adapt to the family’s requirements where possible.
This may mean arranging a birthday party at the hospice or for school work to be sent to the hospital if the child is taking exams and wishes to study.
Amana's sister Imogen was born with cerebral palsy. She suffered from severe seizures and needed a lot of medical care.
Tania, Imogen's guardian, says that Amana always wanted to be involved in Imogen's care. She wanted to be there for her big sister, to check her medication was right and know that she was getting the care she needed.
But Tania knew that Amana needed support too. Sometimes she needed to know that someone else was taking care of Imogen so that she could take a step back to have her own fun.
In this video Tania talks more about why it was so important for Amana to have some time to herself...
The guidance was developed with the help of children at the end of their lives, as well as their brothers and sisters, in order to reflect what they felt was important from their care.
Guideline focus groups took place in Yorkshire, London and Bristol. Children and young people aged between 12 to 18 years participated, using it as a chance to tell NICE what they think good end of life care looks like.
They told us that they valued being involved in decisions about their care and were glad NICE recognised the importance in tailoring care for the individual's needs.
The children also expressed a desire to enjoy their lives. They did not want to be defined by their illness and symptoms.