Disabled boy loses overnight NHS care because parents cannot afford heating

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The parents of a severely disabled 11-year-old boy, who requires constant 24-hour medical attention at home, have been told that the NHS cannot guarantee overnight nursing support for him because they can not properly heat their house.

Leah and Troy Van Keogh were told by their local health board that unless they heated and lit their home sufficiently to ensure a “suitable working environment” its nurses were under no obligation to fulfill a seven nights at week at-home care package for their son, Marley.

The Van Keoghs said they could no longer afford to heat their home. The doubling of their energy bills over the past year meant it had become prohibitively expensive to do so for 24 hours a day as well as run the extensive array of electrical medical equipment needed to keep Marley alive.

Marley has severe cerebral palsy, severe epilepsy and a range of other problems stemming from a traumatic birth injury. He requires 24/7 care and uses an array of electrical medical equipment including a ventilator, hoist, feeding pumps, oxygen and heart rate monitor, an electric bath and changing table.

Leah Van Keogh said that an agency nurse hired by her son’s care package provider, Aneurin Bevan University Health Board, in south Wales, recently stopped providing the overnight shifts at their home because the temperature in the house was below 16C. The family had been left to provide the round-the-clock care themselves.

“One of the agency nurses dropped out of the night package unless we [would] up the heating. I don’t blame them. If I was a nurse I would demand to be comfortable at work. But we can’t afford to leave the heating on all night,” Leah Van Keogh said.

The couple, who rely on disability benefits, income support and carers allowance, said the most recent quarterly electricity bill at their home in Penybryn, Caerphilly, had doubled to ?409 over the past year, and the gas bill had also risen.

Their plight highlights that of people with disabilities and health conditions who cannot afford to adequately heat their homes or maintain essential medical equipment.

Campaigners have called for a special social tariff to cap energy bills for people, like the Van Keoghs, whose health requirements mean high-energy usage.

According to some research 41% of people with a disability cannot afford to keep their homes warm, compared with 23% of the non-disabled population. The figures demonstrated how households with a disabled person were disproportionately exposed to the cost of living crisis.

The Resolution Foundation thinktank said that 48% of disabled adults had had to cut back on energy use this winter, compared with a third of people without a disability. It said the scale of the precarity faced by people with disabilities should be reflected in additional government help with cost of living support.

Louise Rubin, head of policy at the disability equality charity Scope, said: “Astronomical energy bills are putting many families with disabled children in jeopardy. Our helpline has been inundated with calls from disabled people whose bills have doubled or even quadrupled in a year. The government urgently needs to introduce a social energy tariff for disabled people who have no choice but to use more energy.”

The Van Keoghs said the cancellation of nursing shifts because of the cold had exacerbated existing staffing problems with Marley’s care package. In the run-up to Christmas 44 of the 84 hours of Marley’s scheduled nursing care shifts were cancelled because of nursing shortages. Over the holiday period between 20 hours and 30 hours a week were cancelled.

The disruption, and strain on the exhausted family, is effectively being picked up by the voluntary hospice sector, itself under financial pressure. The Van Keoghs are due to move temporarily into respite care at the nearby T? Hafan hospice, where Marley has been a patient since a small boy.

Maria Timon Samra, chief executive of T? Hafan Children’s Hospice, said: “We are looking to welcome Marley and his family for a crisis stay at our hospice as soon as possible. Unfortunately the Van Keoghs are just one of an increasing number of families we work with who are facing intensely challenging situations due to the cost of living crisis.”

Toby Porter, chief executive of Hospice UK, said: “Marley’s story is heartbreaking. Hospices have been warning all year of the devastating impact that higher energy costs would have on many children and adults receiving palliative care. There is no more poignant example than a child having to be cared for at a hospice because [the] parents are struggling to heat [their] home.”

A spokesman for Aneurin Bevan University Health Board said: “We have a duty of care to patients, families and our employees who work within patients’ homes, which includes acceptable working conditions for staff.

“We have supported families to access additional payments for heating where they are eligible, and have close links to local authorities and other agencies within our health board to support families at this difficult time.

“There are widespread staffing shortages across all services in the NHS, including children’s community nursing. We aim to meet 100% of the shifts we provide, but, as this is not always possible, we allocate staff across care packages to cover gaps where appropriate.”