Report

by the Comptroller
and Auditor General

Department of Health and NHS England

Investigation into NHS continuing healthcare funding

HC 239 Session 2017–2019 05 July 2017

Our vision is to help the nation spend wisely.

Our public audit perspective helps Parliament hold government to account and improve public services.

The National Audit Office scrutinises public spending for Parliament and is independent of government. The Comptroller and Auditor General (C&AG), Sir Amyas Morse KCB, is an Officer of the House of Commons and leads the NAO. The C&AG certifies the accounts of all government departments and many other public sector bodies. He has statutory authority to examine and report to Parliament on whether departments and the bodies they fund have used their resources efficiently, effectively, and with economy. Our studies evaluate the value for money of public spending, nationally and locally. Our recommendations and reports on good practice help government improve public services, and our work led to audited savings of £734 million in 2016.

Report by the Comptroller and Auditor General

Ordered by the House of Commons
to be printed on 3 July 2017

This report has been prepared under Section 6 of the National Audit Act 1983 for presentation to the House of Commons in accordance with Section 9 of the Act

Sir Amyas Morse KCB
Comptroller and Auditor General
National Audit Office

28 June 2017

This investigation sets out the facts relating to NHS continuing healthcare (CHC) funding and, in particular, access to CHC funding.

Investigations

We conduct investigations to establish the underlying facts in circumstances where concerns have been raised with us, or in response to intelligence that we have gathered through our wider work.

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11523 07/17 NAO

The National Audit Office study team consisted of:
Leon Bardot, Rosie Buckley, Amisha Patel and Laura Wright under the direction of Jenny George

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Key information

What this investigation is about

1 NHS continuing healthcare (CHC) is a package of care provided outside of hospital that is arranged and funded solely by the NHS for individuals aged 18 years and older who have significant ongoing healthcare needs. When someone is assessed as eligible for CHC, the NHS is responsible for funding the full package of health and social care. The number of people assessed as eligible for CHC funding has been growing by an average of 6.4% a year over the last four years. In 2015-16, almost 160,000 people received, or were assessed as eligible for, CHC funding during the year, at a cost of £3.1 billion.

2 Funding for ongoing healthcare is a complex and highly sensitive area, which can affect some of the most vulnerable people in society and those that care for them. If someone is not eligible for CHC, they may have to pay for all or part of their social care costs. Social care services, such as care home fees, may be paid for by local authorities, but the person may need to pay a charge depending on their income, savings and capital assets. Therefore, decisions about whether someone is eligible for CHC may have a significant impact on their finances.

3 The national framework for CHC states that eligibility should be based on someone’s healthcare needs and not their diagnosis. Many people that are assessed for CHC funding are reaching the end of their lives or face a long-term condition, because of a disability, accident or illness. They can have a wide range of healthcare conditions and may receive funding for just a few weeks or many years (Figure 1).

4 The Department of Health (the Department) is responsible for the legal framework for CHC. This includes: setting criteria for assessing eligibility for CHC through a national framework and providing supporting guidance; publishing screening (checklist) and assessment tools; and setting principles for resolving disputes. Clinical commissioning groups (CCGs) are responsible for determining eligibility for CHC and NHS-funded nursing care (for those not eligible for CHC but assessed as needing care from a registered nurse) and for funding and commissioning this care if patients are assessed as eligible. The CCG is legally required to provide CHC funding for all those assessed as eligible. NHS England is responsible for making sure that CCGs comply with the national framework and may arrange independent reviews of CHC decisions if requested by patients.

5 Between February 2016 and July 2017, we have received correspondence from over 100 members of the public raising concerns about the CHC process in England. The correspondents raised a range of concerns covering how well the assessments are carried out, whether CCGs are complying with the national framework and the equity of the decisions, delays in the assessment and appeals processes, and poor communication with patients and their families. Appendix Two summarises the most common concerns raised by correspondents.

6 This investigation sets out the facts relating to CHC and, in particular, access to CHC funding. It covers:

who is eligible for CHC funding and what the assessment process is;

how long the assessment and decision-making process takes;

access to CHC funding;

the cost of CHC to the NHS;

variation in access to CHC funding; and

the Department’s and NHS England’s arrangements for reviewing access to CHC funding.

Our investigation did not examine individual decisions on eligibility or the delivery of CHC-funded services.

Key findings

1 For most people the assessment process for NHS continuing healthcare (CHC) funding involves two stages (paragraphs 1.5, 1.6, and 3.5, and Figures 3 and 4).

National data on the total number of people who started the process for CHC funding are not available. However, NHS England estimates that at least 207,000 people started the process for CHC funding in 2015-16.

The national framework for CHC states that for most people the assessment process involves an initial screening stage. This uses a CHC checklist to identify people who might need a full assessment.

The full assessment should usually be carried out by a group of professionals from across health and social care (known as a multidisciplinary team) who are familiar with the individual’s care needs.

There is also a fast-track process, which does not require a full assessment, for individuals with rapidly deteriorating conditions who may be nearing the end of their life. This uses the fast-track pathway tool to determine whether people are eligible.

Health and social care professionals must use their professional judgement at both the screening and full assessment stages. They assess the person’s combined healthcare needs across 11 domains in the checklist and 12 domains in the full assessment.

2 NHS England recognises that the current assessment process for CHC funding raises people’s expectations about whether they will receive funding and does not make best use of assessment staff (paragraphs 3.5 and 3.6).1

NHS England estimates that at least 124,000 standard (non fast-track) screenings and 83,000 fast-track tools were completed in 2015-16.

NHS England estimates that around 62% of people who were screened using the checklist went on to have a full assessment in 2015-16.

Clinical commissioning groups (CCGs) reported that approximately 29% of people who were referred for a full assessment were assessed as eligible for CHC in 2015-16.

Therefore, overall, NHS England estimates that only about 18% of screenings undertaken led to the person being assessed as eligible for CHC in 2015-16.

3 In most cases eligibility decisions should be made within 28 days but many people are waiting longer (paragraphs 2.1 to 2.5).

The national framework states that in most cases people should not wait more than 28 days for a decision about whether they are eligible for CHC, following the CCG receiving a completed checklist.

In 2015-16, about one-third of full assessments (24,901 assessments) took longer than 28 days.

Approximately 10% of CCGs reported that full assessments took more than 100 days on average between November 2015 and October 2016 (out of 115 CCGs that provided data requested by the Continuing Healthcare Alliance).

Delays can cause considerable distress to patients and their families as they wait for funding decisions, and in some cases have resulted in delays in discharging patients from hospital.

4 Decisions on eligibility for CHC have a significant financial impact on the individual, clinical commissioning group and local authority (paragraphs 1.2, 1.3 and 3.7).

During 2015-16, nearly 101,000 people were assessed as newly eligible for CHC, of which 79,000 were referred through the fast-track process.

During 2015-16, approximately 59,000 people referred through the fast-track or standard CHC process were considered not eligible.

If someone is assessed as eligible for CHC their health and social care costs are paid for by the CCG. But if they are assessed as not eligible, the local authority and/or the individual may have to pay their social care costs instead.

If a person is assessed as eligible for CHC funding, the CCG must legally provide that funding, irrespective of the number of people that apply and are assessed as eligible.

5 The number of people receiving CHC funding is rising although the proportion assessed as eligible for standard (non fast-track) CHC has reduced since 2011 (paragraphs 3.1 to 3.3 and 3.7).

The population of people receiving CHC funding changes during the year as some people are newly assessed as eligible, some are reassessed and considered no longer eligible, and many patients die, particularly those assessed through the fast-track process.

Between 2011-12 and 2015-16, the total number of people that received, or were eligible to receive, CHC funding at some point during that year increased from 125,000 to 160,000.

NHS England’s snapshot data shows that on 31 March 2016, 59,000 were receiving, or assessed as eligible to receive, CHC funding, compared with 63,000 people on 31 March 2015.

There are no data to track how long people receive CHC funding for, but the above trends indicate that since March 2015, people have received funding for shorter periods. The Department does not have data on the reasons for this changing trend. It may indicate that people tend to apply for, or be assessed as eligible for, CHC funding at a later stage of their illness, or that more people are found to no longer be eligible when they are reassessed.

Between 2011-12 and 2015-16, the estimated proportion of people referred for a full assessment that resulted in that person being assessed as eligible for standard CHC during that year fell from 34% to 29%.

6 The funding of CHC is a significant cost pressure on CCGs’ spending (paragraphs 3.3, 4.1, 4.2, 4.5 and 4.6).

The costs of CHC are met by CCGs, from their overall funding allocation from NHS England. Between 2013-14 and 2015-16, spending on CHC increased by 16%.

In 2015-16, CHC accounted for about 4% of CCGs’ total spending.

NHS England estimates that spending on CHC, NHS-funded nursing care and assessment costs will increase from £3,607 million in 2015-16 to £5,247 million in 2020-21, when historical growth and population demands are applied to previous CCG spending.

Although the Department assures us that there is no quota or cap on access, NHS England’s efficiency plan includes asking CCGs to make £855 million of savings on CHC and NHS-funded nursing care by 2020-21 against the above prediction of growth. Savings may be made by reducing the administrative assessment costs (total spend of £149 million in 2015-16) or by reducing the overall cost of care.

NHS England has not yet set out a costed breakdown for how it will achieve the savings to the cost of care, but it intends to reduce variation in spending and ensure that CCGs interpret the eligibility criteria more consistently. NHS England assumes that increasing both consistency and the number of people assessed after being discharged from hospital will result in CCGs providing CHC funding to fewer patients overall compared with NHS England’s predicted growth in eligibility. It assumes that it will also make savings through better commissioning of care packages.

7 It is not known how many people appeal against unsuccessful CHC funding decisions (paragraphs 1.11 and 3.8).

If a patient is unhappy with the outcome of their assessment they can ask the CCG to review their case, but NHS England does not collect data on how many appeals are made to CCGs, how long they take or how many are successful.

In 2015-16, 448 cases were reviewed by an independent review panel, because the patient was unhappy with the outcome of the CCG’s own review. In 27% of cases, NHS England recommended a different eligibility decision for part or all of the period reviewed.

In 2015-16, the Parliamentary and Health Service Ombudsman received 1,250 complaints about CHC funding decisions. It investigated 181 of them and partly or fully upheld 36 cases.

8 There is significant variation between CCGs in both the number and proportion of people assessed as eligible for CHC (paragraphs 5.1 and 5.2).

In 2015-16, the number of people that received, or were assessed as eligible for, funding ranged from 28 to 356 people per 50,000 population.

In 2015-16, the estimated proportion of people that were referred and subsequently assessed as eligible ranged from 41% to 86%, excluding the 5% of CCGs with the lowest and highest percentages.

NHS England’s analysis of population data at a CCG level shows that the variation cannot be fully explained by local demographics or other factors it has considered so far. This suggests that there may be differences in the way CCGs and local authorities are interpreting the national framework to assess whether people are eligible for CHC due to the complexity of this framework.

9 There are limited assurance processes in place to ensure that eligibility decisions are consistent, both between and within CCGs (paragraphs 6.1 to 6.6).

NHS England’s assurance mechanisms for CHC include quarterly reporting and self-assessment by CCGs, overseen by NHS England’s Directorate of Operations and Information and regional assurance boards. However, there are limited mechanisms for ensuring that individual eligibility decisions are being made consistently across CCGs.

There is a shortage of data on CHC, which makes it difficult to know whether eligibility decisions are being made fairly and consistently.

NHS England and the Department have recently started work aimed at providing more consistent access to CHC funding and supporting CCGs to make efficiency savings. From April 2017, NHS England has expanded the data it publishes on CHC (see Appendix Three on CHC data).

1 NHS England estimates are based on a one-off data collection from CCGs.

Part One

Background

What is NHS continuing healthcare?

1.1 NHS continuing healthcare (CHC) is a package of care, usually provided outside of hospital, for individuals aged 18 years and older who have been assessed as having a ‘primary health need’. People who are assessed for CHC funding include some of the most vulnerable in society. Some are reaching the end of their lives, or have long-term conditions as a result of a disability, accident or illness.

1.2 If someone is assessed as eligible for CHC funding, the NHS funds the full package of health and social care. For example, if a patient is eligible for CHC in their own home, the NHS will pay for healthcare costs (such as services from a community nurse or specialist therapist) and for associated social care costs (such as personal care and help with bathing). In a care home, the NHS also pays for people’s care home fees, including board and accommodation.

1.3 If someone is assessed as not eligible for CHC, they may still be entitled to other health and social care services, such as NHS-funded nursing care or social care services funded by the local authority (Figure 2). However, social care services are means-tested, meaning the person may have to pay a charge depending on their income, savings and capital assets. For NHS-funded nursing care, the NHS pays a flat-rate contribution towards the cost of the person’s nursing care (a standard rate of £155 a week in 2017-18). In 2015-16, the average cost of providing care to each person was £19,190 for CHC, compared with £3,305 for NHS-funded nursing care and £9,944 for social care.2 People that are assessed for CHC often have both health and social care needs, and CHC assessments determine whether the NHS should pay for all of their care. Eligibility decisions can therefore have a significant impact on the finances of the individual, as well as the NHS and local authority.

Eligibility for CHC

1.4 There is no legal definition of what constitutes a ‘primary health need’. However, a key court judgment, known as the Coughlan case, set a precedent for when someone’s healthcare needs are beyond the responsibilities of local authorities and should be paid for by the NHS. Details of the case are set out in the National framework for CHC and NHS-funded nursing care. It led to the clarification in the legal framework that local authorities can legally provide health services, such as nursing care, but only if they are incidental or ancillary to the social care being provided and are of a nature that the local authority can be expected to provide.3 Therefore, for any individual with healthcare needs over and above this level, the NHS is responsible for providing and funding the services required.

1.5 Health and social care professionals need to use their clinical judgement to assess whether they think someone is eligible for CHC funding against the national framework. This states that, as a general rule, someone has a primary health need if the main aspects or majority part of their care are focused on addressing health needs or preventing them from developing. It describes four characteristics of need to help health and social care professionals determine whether an individual’s healthcare requirements are above the legal limits of what a local authority can provide following the Coughlan case. These are the nature, intensity, complexity and unpredictability of the need. However, health and social care professionals must use their professional judgement to determine the totality of needs across 12 care domains (Figure 3).

The assessment process for CHC

1.6 Figure 4 shows the assessment process for CHC funding. For most people, this involves an initial screening stage that uses the CHC checklist to identify people who might need a full assessment. In most cases, the full assessment should be carried out by a group of professionals usually from across health and social care (known as a multidisciplinary team) who are familiar with the individual’s care needs.4 The multidisciplinary team makes a recommendation to the clinical commissioning group (CCG) about whether the person is eligible and the CCG makes the final decision on CHC eligibility. However, CCGs are required to consult with the local authority, as far as is reasonably practicable, before making a decision on a person’s eligibility and local authorities are required to provide advice and assistance to CCGs. In some cases, the CCG carries out the assessment, but in others it commissions a commissioning support unit, local authority or other organisation to carry out the assessment.

1.7 Organisations that represent patients who have been assessed for CHC funding, such as the Continuing Healthcare Alliance, told us they had concerns about the quality of the multidisciplinary team assessment. They said that the assessment is not always carried out by a multidisciplinary team or by people who have a knowledge of the person or the condition that is being assessed. The correspondents who wrote to us raised similar concerns. They also reported that the individual and their representative were not always invited to, or adequately involved in, the assessment (Appendix Two).

1.8 The national framework states that every person receiving CHC funding should have their case reviewed three months after their initial assessment, and at least annually thereafter, to assess whether they are still eligible for CHC.

1.9 There is a fast-track process for individuals with rapidly deteriorating conditions who may be nearing the end of their life. A suitable clinician uses the fast-track pathway tool to determine whether people are eligible and if so, makes a recommendation to the CCG to provide funding.

1.10 People can also submit a request for unassessed periods of care where they believe that they, or a family member, should have been eligible for CHC in the past but were not assessed for CHC and paid for their own care. In March 2012, the Secretary of State for Health announced a deadline of 30 September 2012 for individuals to notify their relevant authority if they believed that they or a family member had been eligible for CHC between 1 April 2004 and 31 March 2011 but had not been assessed. Another deadline of 31 March 2013 was set for individuals to notify their relevant authority if they believed they were eligible between 1 April 2011 and 31 March 2012. CCGs were expected to process the backlog of requests by 31 March 2017. NHS England told us that by the end of January 2017, all these cases had been assessed. People can also submit claims for unassessed periods of care that occurred after 31 March 2012.

Appeals and complaints

1.11 There are three stages to the appeals process:

If a patient is unhappy with the outcome of the CCG’s eligibility decision they can ask the CCG to review their case. This process can vary locally as this is not prescribed in the national framework and each CCG sets its own processes and timescales.

If a patient is unhappy with the outcome of the CCG’s review of their case, they can ask NHS England for an independent review, which may be carried out by one of the four NHS England regions.

If a patient is unhappy with the outcome of the independent review, they can complain to the Parliamentary and Health Service Ombudsman. The ombudsman’s role is to decide whether decisions made by the NHS are in line with the national framework; it does not generally make judgements about whether the NHS has made the right decision. NHS England has taken on board feedback from the ombudsman, for example by refreshing its CHC redress guidance in 2015.

2 We estimated the average cost by dividing the total cost by the number of people that received, or were assessed as eligible for, funding during the year. The figure represents the average cost per person for an episode of care and is therefore affected by how long people are eligible for funding. We estimated the average cost of providing CHC funding for a year in 2015-16 to be £50,000, while the average cost of providing NHS-funded nursing care was £5,824 for those on a standard rate and £8,015 for those on the higher rate.

3 This clarification is reflected in the Care Act 2014 and regulations under the NHS Act.

4 Department of Health, National framework for NHS continuing healthcare and NHS-funded nursing care, November 2012 (revised).

Part Two

The length of the assessment process

2.1 The national framework states that in most cases, clinical commissioning groups (CCGs) should make a decision about whether someone is eligible for NHS continuing healthcare (CHC) within 28 days of receiving a completed checklist.5 In 2015-16, about one-third of full assessments (24,901) took longer than 28 days.6 Figure 5 shows that both the number and percentage of referrals taking longer than 28 days is increasing.

2.2 Some people are waiting a considerable time for a decision about whether they are eligible. The Continuing Healthcare Alliance asked all 209 CCGs how long assessments took on average between receiving the CHC checklist and informing the family of the decision, for the period November 2015 and October 2016.7 Of the 115 CCGs that responded with data, half reported that assessments took more than 28 days on average and around 10% reported that assessments took more than 100 days on average. The average time ranged from 3 days to 204 days. A further 90 CCGs reported that they did not collect data on how long it took to carry out an assessment and inform the family of their eligibility decision. For 2017-18 and 2018-19, NHS England introduced a financial incentive to encourage CCGs to complete more than 80% of eligibility decisions within 28 days.8

2.3 NHS England does not collect data on the reasons for delays in making CHC eligibility decisions. However, our report Discharging older patients from hospital identified a range of challenges to completing timely CHC assessments in acute hospital settings,9 including:

ensuring there were enough sufficiently trained staff to do the assessment;

ensuring that the assessment was completed correctly – if an assessment is incorrect, it may need to be returned causing delays;

managing patients’ and carers’ involvement in and expectations of the process; and

increased scrutiny of applications, partly due to cost pressures, which meant applications were taking longer.

In January 2017, NHS England wrote to CCGs asking them to put in place a number of actions likely to support timely assessments including daily liaison with hospital discharge teams to identify and address CHC-related delays.

2.4 NHS England told us that in some CCGs, the need to process assessments for previously unassessed periods of care could have resulted in delays in assessing people’s current eligibility. CCGs received almost 63,000 requests for previously unassessed periods of care following the Secretary of State’s March 2012 announcement that patients and their families could apply for previously unassessed periods between 1 April 2004 and 31 March 2012. Of these, around 28,000 (44%) resulted in a full assessment and around 8,900 (14%) were assessed as eligible or partially eligible. In many of these cases the individual had passed away some time ago. In some cases, these assessments may have taken years to carry out (see Appendix Two).

2.5 The correspondence we received from members of the public showed that delays can cause considerable distress, and in some cases, considerable financial hardship, to patients and their families as they wait for funding decisions. In some cases, people have died while waiting for a decision. For fast-track recommendations, CCGs should accept these and take immediate action to arrange for provision, but there are no national data on how quickly this happens.

2.6 Delays may also occur during the appeals process. The national framework for CHC states that CCGs should deal with challenges in a timely way and publish their timescales for responding. However, no national data are available on the first stage of the appeals process (asking the CCG to review the case) covering how many appeals are made, how long they take and how many are successful. Charities representing patients told us that the quality of individual CCGs’ processes for resolving appeals at this stage is very variable.

2.7 For the second stage of the appeals process, independent review, the length of the process varies depending on a number of factors including: the availability of family members; the availability of NHS and social care representatives; and the length and complexity of the case. At the beginning of April 2017, there were 360 cases ready to proceed to an independent review. NHS England told us that the majority of these cases should have had an independent review within the next six months. However, some patients have reported waiting years to receive an outcome from the appeals process (see Appendix Two).

2.8 Waiting for CHC assessments has also resulted in delays in discharging patients from hospital. In a survey of hospitals we carried out around 70% of the 76 hospitals that responded indicated that CHC assessments had caused major or moderate delays in discharging older patients from hospitals. However, NHS England’s data show that in the first 11 months of 2016-17, 6% of delayed transfers of care in hospital were due to waiting for a variety of assessments, including for CHC.10

5 For fast-track recommendations, CCGs should accept these and take immediate action to arrange for provision of CHC funding.

6 The proportion that took longer than 28 days has been estimated by dividing the number of assessments that took longer than 28 days in that year by the number of people who were referred for an assessment in that year. The number that took longer than 28 days may include referrals from the previous year and some referrals for that year might result in delays in the following year.

7 The data were collected from CCGs in November 2016.

8 The financial incentive is awarded through the quality premium programme, which rewards CCGs for improvements to the quality of the services that they commission.

9 Comptroller and Auditor General, Discharging older patients from hospital, Session 2016-17, HC 18, National Audit Office, May 2016.

10 National Audit Office analysis of NHS England data, available at: www.england.nhs.uk/statistics/statistical-work-areas/delayed-transfers-of-care/2016-17-data/.

Part Three

Access to funding

3.1 Between 2011-12 and 2015-16, the number of people that received, or were assessed as eligible for, NHS continuing healthcare (CHC) funding during that year increased from 125,000 to 160,000 (Figure 6). This represents an average year-on-year increase of 6.4%. Part of this increase is likely to be accounted for by a growing and ageing population living with complex and long-term care needs. Over this period, the population grew by an average of 0.8% a year and the number of people aged over 65 grew by an average of 2.7% a year.

3.2 Despite the growing and ageing population, in snapshot data collected by NHS England, the number of people that were receiving, or assessed as eligible for, CHC funding reduced from 63,000 on 31 March 2015 to 59,000 on 31 March 2016 (Figure 7).

3.3 NHS England has no national data to track for how long people receive CHC funding. However, the increasing number of people that received, or were assessed as eligible for, funding during the year compared with the declining number of people given in the snapshot data, suggests that since 31 March 2015, people have received CHC funding for shorter periods. It may indicate people are being assessed, or found eligible for funding, at a later stage of their illness, or because they are reassessed and no longer considered eligible. There has been no change to the national framework for assessing or reassessing eligibility during this period, and NHS England assured us that there was no quota or cap on eligibility or funding.

3.4 Between April 2013 and February 2017, clinical commissioning groups (CCGs) also assessed 8,853 people as eligible, or partially eligible, for previously unassessed periods of care relating to the period from 1 April 2004 to 31 March 2012. This represents 14% of the total number of requests that were received. Between April 2014 and September 2015, CCGs also assessed people for previously unassessed periods of care relating to the period after March 2012. However, NHS England does not have accurate data on either the number of people that requested an assessment, or the number assessed as eligible for this period. NHS England told us that in some CCGs, assessments for previously unassessed periods of care could have resulted in delays in assessing people’s current eligibility.

3.5 NHS England has data on how many people are referred for a full assessment for CHC funding, but does not collect on the total number of screenings undertaken. However, NHS England has estimated that at least 124,000 standard (non fast-track) screenings and 83,000 fast-track tools were completed in 2015-16, meaning an estimated 207,000 people started the process for CHC funding.11 It estimates that 62% of people who received a standard screening went on to have a full assessment. These estimates were based on a one-off data collection from CCGs carried out by NHS England. They are likely to underestimate the number of screenings carried out because CCGs may not receive information where screenings are unsuccessful.

3.6 In 2015-16, CCGs reported that approximately 29% of people who were referred from the screening stage were assessed as eligible for CHC at the full assessment stage. Using this data, NHS England estimates that overall, only about 18% of screenings undertaken in 2015-16 led to the person being assessed as eligible for CHC. The national framework states that the purpose of the screening is to identify people who may need a full assessment for CHC. However, NHS England recognises that the low threshold for a positive referral at the screening stage can raise people’s expectations about their eligibility for CHC as around two-thirds who have a full assessment will not be found eligible. NHS England told us that this low threshold has resourcing implications as multidisciplinary teams spend most of their time carrying out assessments that do not lead to people being assessed as eligible. It also has implications for the appeals process as people assessed as not eligible may wish to appeal.

3.7 During 2015-16, nearly 101,000 people were assessed as newly eligible for CHC, of which 79,000 were referred through the fast-track process. Over this period, approximately 59,000 people referred through the fast-track or standard CHC process were considered not eligible. Overall, the estimated proportion of people assessed as eligible following a referral for standard CHC or a recommendation for fast-track approval increased from 59% in 2011-12 to 63% in 2015-16 (Figure 8).12 Contributing to this overall trend, we estimate that:

The proportion of people assessed as eligible through the fast-track process for patients with rapidly deteriorating conditions who may be nearing the end of their life remained relatively constant, between 93% and 94%.

The proportion of people referred through the fast-track process increased from 43% to 52% of all referrals (an increase of 30,478 people). In 2015-16, 83,000 people were referred through the fast-track process, of which approximately 79,000 were assessed as eligible.

The proportion of people assessed as eligible for standard CHC by CCGs reduced from 34% to 29%, representing 1,604 fewer people (Figure 9). NHS England does not have data to explain this reduction. The eligibility criteria have not changed, and there has been no changes to the national framework since November 2012.

3.8 Organisations representing patients told us that many people that do not agree with the outcome of their assessment do not raise an appeal because they are too distressed to go through the complex appeals process. NHS England does not collect data on the number of decisions that are reviewed and overturned locally. However, in 2015-16, 448 cases were reviewed by an independent review panel, the second stage of the appeals process. In some 122 (27%) of cases, the panel recommended a different eligibility decision for either all or part of the period reviewed. In 2015-16, the Parliamentary and Health Service Ombudsman, the third stage of an appeal, received 1,250 complaints. It investigated 181 of them and partly or fully upheld 36 cases.

11 The estimated number of screenings has been calculated by taking the number of positive screenings and dividing by NHS England’s estimate of the proportion of screenings that lead to a positive result – 62% in 2016-17 based on a one-off data collection from CCGs.

12 The proportion assessed as eligible has been estimated by dividing the number of people who were assessed as eligible in that year by the number of people who were referred for a full assessment or were fast-track referrals in that year. The number assessed as eligible may include referrals from the previous year and some referrals for that year might not result in an assessment until the following year.

Part Four

The cost

4.1 Between 2013-14 and 2015-16, spending on NHS continuing healthcare (CHC) increased by £415 million (16%) (Figure 10). Over the same period, spending on the NHS as a whole increased by around 6% and spending on NHS-funded nursing care remained relatively constant. The number of people that received, or were assessed as eligible for, CHC funding increased by 12% over this period. NHS England does not collect data on the average annualised cost of CHC per person, but we estimated that this cost increased by 9% over the same period, from £45,850 to £50,000.13

4.2 Clinical commissioning groups (CCGs) are responsible for funding CHC, from the overall funding allocation they receive from NHS England. CCGs will set a budget based on what they expect they may need. However, funding is demand-led, and CCGs are legally required to provide funding in all cases where a person has been assessed as eligible for funding. In 2015-16, CHC accounted for about 4% of CCGs’ total spending.

4.3 There is significant variation between CCGs in the amount spent on CHC as a proportion of their total spending, which ranged from 2.0% to 7.1% in 2015-16, excluding the 5% of CCGs with the lowest and highest percentages (Figure 11).

4.4 In addition to funding provided directly by CCGs, in 2015-16, NHS England also spent £92 million on CHC funding for previously unassessed periods of care relating to periods before April 2013. During this period, primary care trusts were responsible for providing CHC.

Pressures on future spending

4.5 NHS England estimates that CCGs’ spending on CHC (excluding personal healthcare budgets14), NHS-funded nursing care and assessment costs will increase by £1.64 billion (45%) from £3.607 billion in 2015-16 to £5.247 billion in 2020-21 if they do not take action to control costs (Figure 12). The predicted rise in spending is based on historical growth rates and future population demands, applied to historical spending. NHS England plans to deliver £855 million of savings compared with the level of spending if no action were taken, by increasing standardisation, reducing variation between CCGs, and adopting best practice, including in conducting assessments and in procurement. This would mean that spending in 2020-21 would be £4.392 billion. The £855 million saving target was set by NHS England, and CCGs do not have spending plans setting how they propose to achieve these savings against the background of a growing and ageing population.

4.6 NHS England does not yet have a costed breakdown for how it plans to achieve these savings. Savings may be made by reducing the administrative assessment costs or by reducing the overall cost of care. In 2015-16, £149 million was spent on CHC assessment costs. Regarding any reduction in the overall cost of care, NHS England told us that it did not expect the eligibility for CHC to change, as this is mandated in legislation and reflected in the national framework. Rather, CCGs would look at interpreting these criteria more consistently. NHS England assumes that increasing both consistency and the number of patients assessed after being discharged from hospital will result in CCGs providing CHC funding to fewer patients overall compared with NHS England’s predicted growth in eligibility. It assumes that it will also make savings through better commissioning of care packages.

4.7 The national framework states that financial issues should not be considered as part of the decision about an individual’s eligibility for CHC. It states that CCGs can take account of comparative costs and value for money when commissioning services, but should commission services which reflect the individuals’ preference as far as possible. The care that individuals choose might not always be the lowest cost option meaning there is a potential conflict between choosing a package which reflects the individual’s choice and which provides best value to the taxpayer.

4.8 Part Six looks at how NHS England is overseeing and supporting CCGs, including on making these savings.

13 We estimated this number by dividing the total cost by an average of the total number of people that were currently eligible for CHC at the start and end of the year. The average cost per person is significantly lower, at around £19,190 in 2015-16, as many people receive CHC funding for less than a year.

14 Some people that are assessed as eligible for CHC funding choose to be funded through a personal healthcare budget, which is an amount of money given to someone to allow them to manage their healthcare needs. CCGs spent £85 million on personal healthcare budgets in 2015-16. NHS England have excluded personal health budgets from their estimates of projected spending and plans to deliver £855 million of savings.

Part Five

Variation in access to CHC funding

Local variation

5.1 In 2015-16, there was significant variation between CCGs in eligibility for CHC funding:

the number of people that received, or were assessed as eligible for, funding ranged from 28 to 356 people per 50,000 population (Figure 13); and

the estimated proportion of people that were referred, for fast-track or who were identified as needing a full assessment, and subsequently assessed as eligible ranged from 41% to 86%, excluding the 5% of CCGs with the lowest and highest percentages (Figure 14).

5.2 NHS England cannot fully explain the variation in the number of people assessed as eligible for CHC. Its analysis shows:

the variation has not been fully explained by the demographics of the population within each catchment area, such as size and age;

a weak correlation between the location of the assessment and the number assessed as eligible; and

no quantitative evidence of a relationship with other factors including: the number of acute hospital beds; length of hospital stay; number of hospital emergency bed days; social care spending; community care spending; and number of appeals.

NHS England has not analysed every factor which could affect eligibility as some factors, such as the availability of community services, are difficult to quantify. However, the findings suggest that some of the variation in the numbers assessed as eligible for CHC may be due to differences in the way CCGs and local authorities interpret the national framework to assess whether people are eligible, due to its complexity. We also found a weak negative correlation between the numbers assessed in a CCG and its eligibility rate, with those CCGs receiving the most applications being more likely to have lower eligibility rates. NHS England recognises that more work needs to be done to quantify and explain the variation in access to funding, including how much variation is warranted and unwarranted.

5.3 Assessment of eligibility for CHC can take place within or outside of a hospital setting. The national framework notes that it can be difficult to make an accurate assessment of an individual’s needs while they are in an acute hospital environment. Analysis by NHS England indicates a weak correlation between CCGs that carried out more assessments in hospital and those that assessed more people as eligible for CHC. For 2017-18 and 2018-19, NHS England introduced a financial incentive to encourage CCGs to carry out 85% of assessments outside hospital,15 as it believes that this gives a better indication of people’s long-term care needs. Of 76 hospitals that responded to a survey for our report Discharging older patients from hospital,16 45% said that they were not able to complete the assessment in the patient’s normal place of residence. Stakeholders told us that they generally support the move for more assessments to take place outside of hospital, but raised concerns about who will fund the care before the assessment takes place. They said that the financial incentive may lead to perverse behaviours, for example, patients being placed in care homes in order to get them out of hospital, when the care home may not be the best option for the patient and may end up costing the individual or the state more in the longer term.

15 The financial incentive is awarded through the quality premium programme, which rewards CCGs for improvements to the quality of the services that they commission.

16 Comptroller and Auditor General, Discharging older patients from hospital, Session 2016-17, HC 18, National Audit Office, May 2016.

Part Six

Oversight and monitoring of access

Gaining assurance over clinical commissioning groups’ (CCGs’) processes

6.1 NHS England has a statutory responsibility to undertake annual assessments of CCGs and obtain assurance that they are fulfilling their statutory responsibilities. The assurance mechanisms for CHC include quarterly reporting and self-assessment by CCGs, overseen by regional assurance boards, that meet to discuss current CHC cases and NHS England’s Directorate of Operations and Information, that meet on an exceptions basis, such as when performance issues are identified. NHS England’s regional teams may then undertake more detailed pieces of work examining the performance issues identified in a particular CCG.

6.2 NHS England currently has limited mechanisms to ensure that individual eligibility decisions are being made fairly and consistently both between and within CCGs. In Wales, the Welsh Government in conjunction with NHS Wales carries out an annual sample audit to determine whether the eligibility decisions are being made fairly and consistently across health boards (Figure 15).

6.3 Data are important for evaluating whether the assessment process for CHC is consistent with the requirements of the national framework. NHS England acknowledges that:

There is a shortage of data on the CHC process. Appendix Three shows the data that are not available on CHC, which includes how long people wait for the initial screening, how long full assessments take on average and the number and outcome of appeals that are made locally.

There are a number of issues with the quality of the data it currently collects. For example, NHS England told us that some CCGs are using an incorrect start date when reporting the number of CHC assessments that took longer than 28 days. Some CCGs may be incorrectly excluding stages of the assessment from the 28-day time frame if there are delays outside their control, such as when the family postpones the assessment.

6.4 From 1 April 2017, NHS England expanded the data it publishes on CHC to help address some of these gaps and improve data quality. The data set now includes:

the number of referrals received and the number that lead to full assessments;

the number of referrals that are assessed as eligible and not eligible;

more detailed information on cases exceeding 28 days (CCGs will also be asked to investigate the reasons why some cases take longer than 28 days); and

the number of assessments in acute hospital settings.

The CHC strategic improvement programme

6.5 In 2016, NHS England and the Department of Health (the Department) began scoping work aimed at providing fairer access to CHC funding and identifying opportunities for efficiency savings to help close the widening gap between NHS resources and overall patient needs. This led to a NHS England target to reduce growth in CHC spending (see paragraph 4.5). An NHS England document setting out its early thinking on where savings could be made included reducing the number of people eligible for CHC and reducing the average cost of the CHC package. Figure 16 shows some areas where the Department and NHS England now expect CCGs can deliver CHC savings. NHS England has established a strategic improvement programme aimed at providing fairer access to CHC in a way which ensures better outcomes, better experience and better use of resources. The programme includes workstreams to develop and test best practice involving 26 CCGs, and to share learning more widely across CCGs. NHS England also runs regular webinars to encourage CCG engagement and knowledge sharing.

6.6 The Department has been working with NHS England, local authority representatives and charity groups to understand the impact of the national framework on delivery of CHC and where there might be scope for improvements.

Appendix One

Our investigative approach

Scope

1 This investigation sets out the facts relating to NHS continuing healthcare funding (CHC) and, in particular, access to CHC funding. It covers:

who is eligible for CHC funding and what the assessment process is;

how long the assessment and decision-making process takes;

access to CHC funding;

the cost of CHC to the NHS;

variation in access to CHC funding; and

what the Department of Health’s (the Department’s) and NHS England’s arrangements are for reviewing access to CHC funding.

2 We carried out our investigation between February and April 2017. Our investigation did not examine individual eligibility decisions or the delivery of CHC-funded services.

Methods

3 We interviewed relevant officials from the Department and NHS England. The work was designed to understand:

the scope of NHS England’s strategic improvement programme and the measures taken to improve data quality;

what support NHS England provides to help CCGs achieve the required efficiencies;

the Department’s current review of the national framework; and

the assurance processes for CCGs and NHS England.

We also interviewed other stakeholders including the Association of Directors of Adult Social Services, Beacon (a social enterprise that offers a CHC support service), the Continuing Healthcare Alliance (comprising a range of bodies), Marie Curie, the Parliamentary and Health Service Ombudsman and the Wales Audit Office to seek their views on access to CHC funding.

4 We reviewed the data analysis performed by NHS England and carried out our own analysis of the data provided by NHS England and NHS Digital. The data and analysis covered access to CHC and the costs, including numbers and outcomes of cases relating to previously unassessed periods of care. We also analysed data collected by the Continuing Healthcare Alliance, from 115 CCGs through Freedom of Information requests, on the average length of CHC assessments.

5 We reviewed relevant policy documents and announcements, operational guidance reports and meeting minutes relating to CHC from NHS England and the Department. We also reviewed reports and analysis from the Continuing Healthcare Alliance and the Wales Audit Office.

6 We reviewed information provided by individuals directly to the National Audit Office. See Appendix Two for further details.

Appendix Two

The main concerns raised by correspondents

1 Between February 2016 and July 2017, we received over 100 letters from members of the public raising concerns about NHS continuing healthcare (CHC). As the sample is self-selecting, with those who have experienced problems more likely to contact us, we cannot generalise the findings to the whole population that are assessed for CHC funding. However, the concerns raised helped us to understand the nature of potential problems and the impact that these can have on individuals. The table below summarises the most common concerns raised in this correspondence and Figure 17 shows how the concerns raised relate to the eligibility process.

Appendix Three

CHC data

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