Why there should be a national funding strategy for community children's palliative care

There is a glaring lack of NHS funding for 24/7 children’s community palliative care. Helen House hospice in Oxford provides this care, but depends on public donations to do it. Its sister hospice Douglas House caters for people aged over 18 and is set to close due to a lack of funding. Sabine Schwaebisch explains the holistic care offered at Helen House and why it is at the forefront of compliance with national guidance  

I do not think there is a better reason for providing highly personalised, holistic and acutely responsive clinical care than looking after a terminally ill child. Good children’s palliative care is based on these specific clinical values, because a dying child should not have to suffer.

Over 35 years our team at Helen House hospice in Oxford has supported children with life-limiting conditions, age zero to 18, in the Thames Valley. We have learned what it takes to make sure terminally ill children receive the best care. This learning has been captured in our contribution to the National Institute for Health and Care Excellence (NICE) guidelines and quality standards for end of life care in infants, children and young people.

Increasingly hard to obtain funding

Delivering the highest standard of children’s palliative care is a big and important commitment and, like other statutory and charitable services across the country, Helen House is looking for financial support from clinical commissioning groups. A total of 88% of our funding consists of public donations – funds that are increasingly hard to raise in an austere climate.

We are fortunate to be able to provide inpatient care as well as outreach support. I believe they are equally important when supporting families through the hardest times of their lives. Our 24/7 medically supported inpatient service includes respite, symptom management, stepped discharge and end of life care. Individual one to one care is delivered by nurses and highly-skilled nursery nurses, which helps build trust and the all-important therapeutic relationships with families. The complex burden of looking after a child that is terminally ill often pushes families to breaking point, and respite can provide the safety net to help them cope.

When clinically indicated, families can receive support from our experienced outreach team: nurse consultant Karen Brombley and clinical nurse specialist Shirley Jones. They offer a range of services outside the hospice: routine and complex symptom management; telephone advice for patients, families and professionals; advance care planning; and end of life care and advice.

'The complex burden of looking after a child that is terminally ill often pushes families to breaking point, and respite can provide the safety net to help them cope'

This is provided weekdays, the patient’s community and in a local hospital. Close collaborations with community children’s nursing teams, and the Rennie Grove Hospice Care service, make sure families can have a choice and keep their child at home, avoiding unnecessary and disruptive hospital admissions.

To implement successful care plans and individualised symptom management plans, drawn up by our medical team, the availability of our 24/7 over the phone support is vital. Having worked at Helen House for more than five years, I have come to understand that close and effective working relationships between doctors, outreach nurses and the care team members are invaluable. Good internal, as well as external collaborations, are key.

Risk factors

With our child-centred and responsive service we are at the forefront of NICE quality standard compliance. Children and their families are offered choice for the final days of their child’s life; symptoms are well controlled; and emotional, psychological, spiritual support are offered pre- and post-bereavement.

But without streamlined investments from CCGs and a nationally-supported funding strategy, I am worried that successful and well-established services are at risk.

Further information

• Karen Brombley’s blog: Home is where the heart is 
• Deirdre O'Shea and Emily Harrop blog: Getting to the right place for the final time

About the author

Sabine Schwaebisch is a care team nurse at Helen House in Oxford