Conclusions and recommendations
1.Too many people are waiting too long to find out if they are eligible for CHC, and to receive the essential care that they need. The Department’s national framework states that in most cases people should not wait more than 28 days for a decision, but in 2015−16 one-third of assessments (almost 25,000) took longer. About 10% of clinical commissioning groups (CCGs) reported that assessments took longer than 100 days on average between November 2015 and October 2016. Delays have meant that some people have died whilst waiting to hear whether they are eligible. Even when funding is agreed, there may be a delay in getting the appropriate care package in place, meaning that people are not receiving essential care when it is needed. For too long NHS continuing healthcare (CHC) has been treated differently to other NHS services—for example, someone needing dialysis would not be asked to wait for months to receive the treatment they need to stay alive. It often falls to families to provide informal care whilst they wait for care packages to be put in place, and in some cases people have developed other conditions or complications whilst waiting.
Recommendation: NHS England needs to hold CCGs to account for delays in assessments, and needs to find out the extent of further delays by CCGs in providing care packages once funding is agreed, taking remedial action where needed.
2.Some patients are not receiving the care that they are entitled to because they are not made aware of the funding available, or because the system is too difficult for them to navigate. The Continuing Healthcare Alliance told us that around two-thirds of people did not find out about CHC until very late in their journey through the health and social care system. Often health and social care professionals are not signposting CHC to patients; for example only around 3% of people find out about it through their GP. The CHC process is hugely complex; written evidence to the Committee indicates that 78% of health professionals believe the system is difficult for patients and their families to navigate. We are also concerned that different patient groups may have different levels of awareness and engagement. For example, awareness may be low if English is not the patient’s first language. There are also concerns that CHC assessors do not always communicate well with patients and their families. NHS England currently funds Beacon to provide independent advocacy and advice to patients and their families, but it acknowledges that this is not enough.
Recommendation: The Department and NHS England need to improve awareness of CHC amongst patients and their families, and amongst health and social care professionals, by
- establishing where there are awareness gaps, with different patient groups and different health and social care professionals; and
- reporting back to the committee by April 2018 on how awareness has been raised.
3.Patients’ likelihood of getting CHC funding depends too much on local interpretation of assessment criteria, due to poor quality assessment tools and inadequate training. There is huge variation between CCGs in access to funding, as well as the amount that they spend on CHC. For example, the number of people that were assessed as eligible for CHC ranged from 28 to 356 people per 50,000 population in 2015−16. The Department’s assessment tools are unclear, so CCGs interpret them differently, which results in inconsistent decisions being made, depending on where a patient lives. Stakeholders told us that some CCGs have introduced arbitrary additional local rules which are not set out in the formal assessment tools, and the Equality and Human Rights Commission is concerned that the way some CCGs are applying CHC policies may be unlawful. Too often assessors in multidisciplinary teams are inadequately trained, have never met the person they are assessing and do not involve the patient or their family in the assessment. Furthermore, a report by the Continuing Healthcare Alliance found that around 60% of healthcare professionals are assessing people without sufficient specialist knowledge of the medical condition that they are looking at. Whilst there are examples of good practice, these are not being systematically identified and replicated across the country.
Recommendation: The Department and NHS England should report back to the Committee by April 2018 on:
- what action they have taken to improve the quality of assessment tools and training for staff carrying out assessments; and
- how it plans to monitor the impact of these changes on reducing variation between CCGs.
4.NHS England is not adequately carrying out its responsibility to ensure CCGs are complying with the legal requirement to provide CHC to those that are eligible. CCGs are legally required to provide funding in all cases where a patient’s healthcare needs are beyond the responsibilities of local authorities. However, there has been a shortage of data on CHC which makes it difficult for NHS England to know whether CCGs are fulfilling their duty. For example, analysis suggests that on average people are receiving funding for a shorter period than they did previously, but NHS England does not have data on why this is happening, nor does it have data on the number of local appeals or their outcome. Furthermore, there are limited assurance processes in place to ensure that eligibility decisions are consistent, both between and within CCGs. Since April 2017, NHS England has expanded the data that CCGs are mandated to provide, but it recognises that the dataset is not yet complete. NHS England has started undertaking sample audits and analysing data for CCGs that are in the top and bottom 5% in terms of access to CHC. But we are concerned that these measures may not go far enough to address the variation in performance.
Recommendation: NHS England needs to establish a consistent oversight process, using the new data available, to ensure eligibility decisions are being made consistently both within and across CCGs, including by setting out what criteria they will use to identify and investigate outliers, and undertaking an annual sample audit.
5.It is not clear how CCGs can make £855 million in efficiency savings by 2020−21 without restricting access to care, either by increasing eligibility thresholds or by limiting the care packages available. NHS England wants CCGs to make £855 million of savings by 2020−21 against its predicted growth in spending on CHC and NHS-funded nursing care. However, we are concerned that this ambition will result simply in giving CHC funding to fewer people, or giving people less care, or both. The Department and NHS England assured us that there is no cap on access, and that eligibility criteria have not changed. However, between 2011−12 and 2015−16, the proportion of people assessed as eligible for standard CHC fell from 34% to 29%. Stakeholders also told us that CCGs are increasingly placing arbitrary financial caps on the cost of care packages and may be forcing people to accept lower cost packages that do not meet their care needs. NHS England told us that CCGs could make the savings by adopting best practice, speeding up assessment work, reducing administrative costs and using better case management. However, CCGs spent just £149 million on assessment costs in 2015−16, so any efficiency savings in that area cannot come close to the amounts required, and NHS England has not provided a costed breakdown for how CCGs can achieve the £855 million of savings.
Recommendation: NHS England should provide us, by April 2018, with a costed breakdown of how these efficiency savings will be achieved, and assurance that they will not be achieved by restricting access to care for vulnerable patients.
15 January 2018