Vulnerable people with complex care needs 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).

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.

A complex care system

Accessing care from the complex CHC system can be stressful for those managing a long-term illness, deteriorating health condition or caring responsibilities.

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. 

Laura Cockram, Co-chair of the Continuing Healthcare Alliance and Head of Policy and Campaigns at Parkinson’s UK, said:

Sadly, this report confirms what our members have been telling us for a long time - that people are being left to struggle through a complicated and unwieldy process.

In addition to what is likely to already be a challenging time in their lives, the impact on a person’s physical health and well-being of not receiving the right levels of support cannot be overstated.

No one should have to fight this hard for the support they need and are entitled to.

By training staff to get Continuing Healthcare decisions right first time and making the process easier to understand, CCGs have the opportunity to remove a massive financial and emotional burden for vulnerable people who simply need support, not barriers.

The Ombudsman’s recommendations

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.

Due to the Covid-19 pandemic, CHC assessments were paused from March to September 2020. This has created a backlog of cases that NHS staff are now working through. It remains to be seen what the impact of the second wave of the pandemic will be on NHS CHC over the coming weeks and months. Nonetheless, the findings of the report show how vital it is that CHC assessments are dealt with promptly and effectively so that vulnerable people are not left without care.

Read the report and the case summary.