News and Comment

During a debate on end of life care in the House of Commons on 2nd March, several MPs called for children and young people to be given choice at the end of their lives. In response, a minister said he would...

Samantha Cameron last night (1 March) hosted a reception on our behalf at No. 10 Downing Street. The event helped to raise awareness of the needs of the UK’s 49,000 children and young people living with a life-shortening condition. Mum,...

Last night I was honoured to speak at an event at 10 Downing Street about the experience of raising my son James. James has Infantile Batten Disease – a neurological degenerative condition. There is no treatment, and no cure. James...

In Northern Ireland alone, there are currently estimated to be 1,300 children and young people living with life-shortening conditions. Many of these children have extremely complex and unpredictable conditions, requiring round the clock care, seven days a week. Northern Ireland...

A shortage of nurses has resulted in two thirds of voluntary sector children’s palliative care services reducing their offer of care to families. This is resulting in reduced care for families such as: fewer available beds in children’s hospices; a...

Losing a baby or child is always immensely distressing – and a lack of joined up bereavement care is leaving many parents without adequate support when they need it the most. Unless you were watching Victoria Derbyshire’s show earlier you may have...