The parents of a severely disabled 11-year-old boy need 24-hour medical care at home, but have been told the NHS cannot guarantee night-time nursing support because the house cannot be heated properly. It is
Leah and Troy Van Keogh have been advised by the local health board that nurses are required to stay in a home care package seven nights a week for their son unless the home has adequate heating and lighting to ensure an “adequate working environment.” I was told that I was not obligated to comply with , Marley.
The Van Keoghs said they could no longer afford to heat their home. Electricity bills have doubled for him in the past year, making it prohibitively expensive to run the various electromedical devices needed to keep Marley alive, as well as operate 24 hours a day. It took
Marley has severe cerebral palsy, severe epilepsy, and various other problems resulting from a traumatic birth injury. He requires his 24/7 care and uses a variety of electromedical equipment, including a ventilator, hoist, nutrient pump, oxygen and heart rate monitor, electric bath, and changing table.
According to Leah Van Keogh, an agency nurse employed by her son’s care package provider, Aneurin Bevan University Health Board in South Wales, was unable to work the night shift at home because the temperature in the house dropped below 16 degrees. Recently discontinued. Families were forced to provide 24-hour care themselves.
“One of the agency’s nurses dropped out of the night package unless we were there. [would] Turn up the heat. i don’t blame them. If I were a nurse, I would require that I be comfortable at work. But we can’t afford to leave the heating on all night,” said Lia Van Kioh.
The couple, who depend on disability benefits, income support and care benefits, said their electricity bill at their home in Penibryn, Carephilly, had doubled in the past quarter to £409 in the last quarter, while gas bills also rose. said he did.
Their plight highlights the situation of people with disabilities and health problems who cannot afford to heat their homes adequately or maintain necessary medical equipment.
Campaigners are calling for a special social rate to limit energy bills for people like the Van Keoughs, who consume large amounts of energy for their health needs.
According to some studies, 41% of people with disabilities cannot afford to keep their homes warm compared to 23% of the population without disabilities. This figure shows how cost-of-living is at stake for households with persons with disabilities.
According to the Resolution Foundation think tank, 48% of adults with disabilities had to reduce their energy use this winter, compared to one-third of those without disabilities. He said the scale of insecurity faced by persons with disabilities should be reflected in the government’s additional support for living expenses.
Louise Rubin, Director of Policy at the Disability Equality Charity Scope, said: Our helpline is inundated with calls from people with disabilities who say their bill has doubled, or even quadrupled, in her one year. Governments urgently need to introduce social energy tariffs for disabled people who are compelled to use more energy. ”
Van Keoghs said the cancellation of nursing shifts due to the cold exacerbated existing staffing issues with Marley’s care package. Leading up to Christmas, her 44 of Marley’s scheduled care shifts of 84 hours were canceled due to a shortage of nurses. During the vacation period, her 30-hour workday was canceled from the 20-hour work week.
The turmoil and strain on an exhausted family has been effectively taken up by voluntary hospice departments, which themselves have come under financial pressure. I will be temporarily receiving respite care at the nearby Tŷ Hafan Hospice.
Maria Timon Samra, CEO of Tŷ Hafan Children’s Hospice, said: Unfortunately, the Van Keough family is just one of a growing number of families we work with who are facing great difficulties due to the cost of living crisis. ”
Hospice UK Chief Executive Toby Porter said: Hospices have warned all year that rising energy costs will have devastating effects on many children and adults receiving palliative care. there is no. [the] parents are struggling with heating [their] House. “
Aneurin Bevan University Health Commission spokesperson said:
“We have been helping families access additional payments for heating costs when eligible. builds a close relationship with
“All NHS services, including children’s community care, are experiencing widespread staffing shortages. We aim to fill 100% of the shifts we offer but this is not always possible so Allocate staff across care packages to fill gaps as needed.”