Parents of Children with Life-Limiting Conditions Are Denied Specialist Palliative Care at Home

Emily Marsden is a full-time caregiver to her eight-year-old daughter Daisy who was born with Rett Syndrome, a rare genetic condition that requires round-the-clock specialist nursing care. Doctors warned Daisy only had weeks to live, but two years have passed. However, Emily only receives specialist palliative support for her daughter Monday to Friday, between 9 am to 5 pm leaving her feeling “unsustainable.”

The Struggle of Parents

Emily Marsden has asked for extra help, but specialist palliative care is not available in her area out of hours. Jackie Appleton, who lost her seven-year-old daughter Amber May last year, knows exactly how Emily feels. Amber was born with CACNA 1A, which left her needing complex medical care, but Jackie says she was made to feel “inadequate” and “greedy” every time she approached her local healthcare provider for help.

A Shortage of Palliative Care Staff

Health workforce researchers warn that more families will be left without specialist palliative care unless recruitment is stepped up, and existing staff is given more training. The latest figures show the number of district nurses who can provide palliative care in the community has dropped by two-thirds in the past twenty years. Around 30% of these current staff are not qualified to give end-of-life care.

Urgent Government Action Needed

Andy Fletcher, CEO of Together for Short Lives, said “These children can have very complex and unpredictable conditions and often need 24-hour care, seven days a week. However, care and support are not always available when families need it most, especially at night and at weekends. This can put huge pressure on already exhausted families.” The government needs to urgently address the £300 million funding gap for children’s palliative care in England, invest in the workforce and future-proof the NHS England’s grant funding for children’s hospices to ensure support is in place to meet the children’s complex needs. The needs of these children and their families have been overlooked in the planning and development of health and care policy, leading to critical inconsistency of access to support. This must change.