NHS continuing healthcare failing to provide care for most vulnerable, says Parliamentary Ombudsman

Vulnerable people with complex care needs, including people paralysed by spinal cord injury, are footing the bill for care that should be covered by the NHS, according to a new report by the Parliamentary and Health Service Ombudsman (PHSO), the Ombudsman watchdog that considers complaints by the public that UK Government departments, public authorities and the National Health Service in England have not acted properly or fairly or have provided a poor service.

The report states that incorrect and delayed decisions about NHS-funded care packages are having a devastating impact on people’s lives, leaving some without essential care, while some people are having to pay out hundreds of thousands of pounds in care costs while they wait for decisions. Complaints to the Ombudsman about NHS continuing healthcare funding (CHC) have shown repeated failings in the way local Clinical Commissioning Groups (CCGs) assessed people’s care needs and funded their care packages. Some complainants had made huge financial sacrifices to pay for a family member’s care. Others spent years without the care they needed because their local CCG assessed their needs incorrectly.

Many have experienced stress, anxiety and ill-health as a result. Mr V from London complained to the Ombudsman after his mother, who needed 24-hour care after having a stroke, was not provided with a care plan or sufficient funding to cover her care needs. This meant Mr V’s family had to take on some of the caring responsibilities themselves and fund an additional carer for 119 hours a week for more than two years. The Ombudsman found the CCG’s failings placed a huge financial and emotional burden on Mr V and his family. Following intervention by the Ombudsman, the CCG refunded Mr V for the care it should have provided his mother, which totalled over £250,000.

PHSO’s report says it is vital that CCGs help people understand their rights and explain how to raise concerns if their needs are not met. CCGs can review previously unassessed periods of ill health to see if someone should have received CHC-funded care, and reimburse them so they are not left out of pocket. Ombudsman Rob Behrens, said.

“Our casework demonstrates that failing to provide vulnerable people with the care they are entitled to causes huge suffering, as well as financial harm, for them and their families.  NHS CCGs must improve communication with patients and families and properly train staff to make sure they get continuing healthcare funding decisions right first time.”

The Ombudsman is calling on NHS England and the Department for Health and Social Care to clarify what CCGs’ obligations are through national guidance.  PHSO has made recommendations to improve the CHC system, which include providing comprehensive training for frontline staff and better communication with patients and their families. These changes will support the CHC workforce to properly follow the National Framework so they deliver consistent, high quality care packages that meet individuals’ needs.

Brian O’Shea, Spinal injuries Association’s Continuing Healthcare Advisor and Chair of the Continuing Healthcare Alliance, said:

“This report confirms what our member organisations have been saying about the experience of the people they represent for a long time. People are being left to struggle through a complicated and unwieldy process, which all too often has a devastating impact on them at an already difficult time in their lives. We welcome the focus on inadequate care and support planning. No one should have to fight this hard for the care and support they require, and are lawfully entitled to. The impact on an person’s health and well-being of not receiving appropriate levels of support cannot be overstated. This level of systemic failure would not be tolerated in any other part of the NHS. We welcome the call for improved training, and greater oversight by NHS England and NHS Improvement over the implementation of that training.”