Continuing Healthcare: Getting it right first time


About this report

PHSO handles a significant number of complaints about a form of NHS-funded care known as NHS Continuing Healthcare (NHS CHC). Between April 2018 and July 2020, PHSO made decisions on 336 complaints about NHS CHC.

This report highlights the learning from a sample of 60 cases. Ten of these cases are included as case study examples. These cases reveal important learning about the way CCGs have been applying national guidance about NHS CHC. We make recommendations to ensure the learning from these cases can be used to improve how NHS CHC supports people who need care and their families.

NHS CHC is administered by local NHS Clinical Commissioning Groups (CCGs) with oversight from NHS England and NHS Improvement. (Since 1 April 2019, NHS England and NHS Improvement have worked together as a single organisation. However, they remain legally separate entities. In this report, we refer to the single NHS England and NHS Improvement organisation, although some things remain solely the legal responsibility of NHS England.) In 2019-20, over 175,000 people were considered for NHS CHC funding, and over 112,000 people were newly assessed as eligible for NHS CHC. It is a complex and technical area of healthcare policy and decisions made under the policy can have a significant impact on the lives of care users and their families. This is why it is important that CCGs have robust processes for conducting evidence based, personalised care and support planning in line with the National Framework. CCGs also need to support people through this process with effective and inclusive communication, so they know what to expect.

The purpose of this report is to share the learning from our casework on care and support planning and previously unassessed periods of care with CCGs and NHS England and NHS Improvement to support and inform the ongoing and continued improvement of NHS CHC. We want CCGs to use the learning in this report to improve and act in line with the National Framework on care and support planning. NHS England and NHS Improvement should use the learning to understand what additional support CCGs may need to do this.

We want this report to contribute to the public knowledge of NHS CHC and help people understand what they are entitled to under NHS CHC. We also want this report to show the value and importance of giving feedback – including through complaints.

PHSO has reported on the complaints we receive about NHS CHC for over 25 years. Following one PHSO report in 2003 NHS funding for long term care: 2nd report - session 2002 to 2003 the Department of Health (Throughout this report, we refer to the organisation by the name it had at the time. In this case, we refer to the Department of Health, which was renamed the Department of Health and Social Care in 2018.) repaid £180 million to people who had to inappropriately fund their own care. In 2007, the Department of Health issued the first national guidance for NHS CHC, creating a single framework and set of eligibility criteria for local commissioners to follow.

While this has improved NHS CHC, PHSO still sees a significant number of complaints where people have had to pay for additional care or were left with significant financial uncertainty. As a result, in 2017, we introduced specialist teams to consider our NHS CHC casework. This report is a result of the work these teams have done, and the deeper understanding we have gained as a result.

This report also includes an annex setting out in more detail how the NHS CHC system currently works, the challenges faced by the people using it over the past two decades, and the role that PHSO’s casework has played in shaping improvements to address these challenges. We have included this background information in recognition of the improvements made by the NHS as a result of the National Framework, the complexity of NHS CHC policy and practice, and to inform readers who may not otherwise be familiar with the context in which PHSO has identified failings with the current system.

What we found

In developing this report, we have reviewed 60 of the cases we have completed in the last three years. Analysis of this casework has highlighted two key themes.

  • People being forced into ‘topping up’ care packages either because of errors in care and support planning, or because the CCG did not make them aware of what should be covered by their package or how to review or challenge the package. In two such cases, this resulted in significant financial and personal burdens being placed on people using care, their families and carers. The impact of this was so significant that PHSO achieved redress of over £250,000 for each family.
  • CCGs making mistakes when undertaking reviews of previously unassessed periods of care. These mistakes have resulted in people living with uncertainty for a considerable amount of time without knowing whether they or a relative were entitled to NHS CHC funding for their care.

In the cases we have seen, as well as the evidence provided by other organisations supporting people through this process, such as the CHC Alliance, it is clear that mistakes by CCGs have led to people unnecessarily paying out large sums to cover care or going without care due to incorrect or delayed decisions about NHS CHC funding. Others have waited many years with uncertainty about their future finances.

The impact of these mistakes on people cannot be understated.

Some people have had to find large sums of money to pay for their own care or that of their loved ones. In other cases where people have not been in a position to fund care, family members have had to step in to do this themselves. For one care user, this meant a family member being available 24 hours a day, seven days a week to cover their care needs.

In almost every case where this has happened, patients and their families have told us of the extreme stress and anxiety caused. This is, of course, in addition to the emotional and physical impact of the illness they or their family member have experienced.

People and their families entering the world of NHS CHC are already experiencing the stress and pain of complex care needs. CCGs need to be mindful of this and seek to support people eligible for NHS CHC in their care needs, and not add to the emotional and financial burden.

The impact of COVID-19

The COVID-19 crisis has put great pressure on the NHS. The Government paused new assessments for NHS CHC and reviews of existing care packages between March and the end of August 2020 to allow the NHS CHC workforce to support hospital discharge arrangements. This included freeing up frontline staff to support the overall COVID-19 response, such as hospital discharge activities and the transfer of staff to local providers to support discharge arrangements. Government also put in place emergency funding for people who would otherwise have gone through the NHS CHC screening and assessment process.

This pause was lifted on 1 September 2020. CCGs and their local authority partners are now working their way through these deferred assessments and also processing new referrals. CCGs must ensure people are not left waiting too long for decisions about their care, while still ensuring quality and fairness in care and support planning.

We will continue to monitor the complaints we receive to identify any learning that could support further improvement in NHS CHC, including any learning relating to the pause of NHS CHC assessments during the COVID-19 crisis of spring and summer 2020.

Getting it right first time: Learning from complaints

PHSO is the final step of the NHS complaints process. We can only look at complaints which have been looked at by the organisation complained about first. Although not the focus of this report, this means that all the complaints we have included here are the result of poor local complaints handling.

Complaints are a vital source of learning. PHSO’s recent report Making Complaints Count: Supporting complaints handling in the NHS and UK Government Departments sets out the findings from extensive research looking at the quality of complaints handling in the NHS. It shows the weaknesses of the current complaints system, with too much local variation in practice, a lack of training for staff and a culture where complaints are seen negatively.

The findings of Making Complaints Count have fed in to the PHSO’s development of a Complaints Standards Framework. This sets out a single set of standards for staff to follow and provides standards for leaders to help capture and act on the learning from complaints. It is built on the four principles of:

  • promoting a learning and improvement culture
  • positively seeking feedback
  • being thorough and fair
  • giving fair and accountable decisions

PHSO has consulted widely both in the development and draft of the Complaint Standards Framework, which was open for public consultation through summer 2020. The full framework will launch in 2021.

The Complaint Standards Framework will provide a consistent approach and support to frontline staff, as well as assisting senior leaders to promote a positive culture which embraces learning from complaints. It provides the basis for a central training platform for staff to give them the support and development they need, and to recognise that handling and resolving complaints is a professional skill.

The importance of good complaints handling and using complaints as a source of learning can be seen throughout the cases in this report. The volume of complaints PHSO receives about NHS CHC shows that there is more CCGs can do to value complaints and use them to improve the services they provide.

CCGs and NHS England and NHS Improvement can use the learning from this report to ensure the NHS CHC system delivers quality and timely decisions, and supports people through a complicated and stressful time in their lives