Waiting for care

Understanding the pandemic’s effects on people’s health and quality of life

COVID-19 has caused around 120,000 deaths in England and Wales, and one of the biggest year-on-year increases in mortality since the middle of the last century. But the full impact of COVID-19 cannot be measured in terms of deaths alone.

Lockdown did not just shut our pubs, restaurants and social lives – it shut down parts of our health system. Most elective care was suspended, routine cancer referrals dropped and A&Es became less busy. Even now, with the NHS again ‘open for business’, longer waiting times are likely to persist for several years.

This will continue to have wide-ranging impacts on people’s health and wellbeing. This analysis explores these impacts via two case studies – hip replacements and diabetes. In doing so it unpicks how care changed (how much longer are people waiting and who is waiting the most?), and what effect this might have.

To slow transmission and to free up capacity to treat COVID-19 patients, some routine NHS services were suspended, or operated with severely reduced capacity. Some patients chose to keep away from hospitals and GP practices for fear of infection, or out of a desire not to use scarce resources.

Statistics show the scale of these impacts. 4 million fewer people completed elective treatment in 2020 than in 2019 – a 25% reduction. In addition, 6 million fewer people were referred into consultant-led elective care in 2020 than in 2019, so do not even appear on the waiting list. And in primary care, there were 23 million fewer consultations in 2020 than in 2019 – a reduction of around 10%.

These reductions in routine NHS care have affected people’s health and wellbeing – with the significance of this impact depending on the type of condition or treatment delayed. Understanding the varying consequences of these delays will help us to understand first, which backlogs are likely to be most problematic for our health and quality of life, and second, who and what should be prioritised as the NHS works through historically high waiting lists.

Consider a person who, due to the pandemic, did not or could not access care when needed. One of three things could have happened:

1. They got better on their own. There were no long-term health consequences. Possibly, an unnecessary appointment was avoided, saving NHS resources. An example might be someone with a viral infection that cleared on its own.
2. They did not get better, but they did not get worse. When the NHS reopened, they accessed the care they needed. The delay in accessing care did not make their health problem worse, though the person did have to spend longer managing the condition, affecting their quality of life. No NHS resources were saved, but use may have been shifted forward to a time when the NHS was under greater pressure. Examples might be a muscular injury, or ongoing management of established diabetes.
3. Their health condition deteriorated. When able to re-access care, they were more unwell than they would have been – leading to worse health outcomes for the individual, and potentially more expensive treatment for the NHS. Examples might be a cancer that was caught later than it could have been, or a hip that deteriorated more fully. In some cases, such as hip replacements, where patients are older they may die from another cause while waiting for treatment.

We explore this by looking at two case studies – hip replacements and diabetes – to understand what the health impacts of the COVID-19 lockdowns might have been. These are both high-volume examples of NHS care, but with very different treatment pathways. Hip replacements, if not treated, will lead almost inevitably to increasing pain; diabetes (particularly for patients who have been diagnosed for some time) can be managed quite effectively from home with more minimal clinical input, and will not in most cases lead to rapid declines in health. We summarise the changes in the amount of care the NHS provided for these conditions and discuss what impacts this may have had on broader health and wellbeing.

Hip replacements are one of the NHS’s highest-volume procedures, with the NHS typically completing around 14,000 per month pre-pandemic. Around three-quarters of hip replacements are planned or ‘elective’ surgery, with the remainder being emergency surgery, usually following a fracture. Delays to hip replacements can have significant implications. For patients, this can mean spending longer in often increasingly high levels of pain, with worsening quality of life. It can increase the risk of broken hips, and subsequent emergency admissions, and it can increase the complexity and cost of the type of hip replacements needed.

How did overall activity change?

Prior to the first lockdown in March 2020, all hospitals in England were told to cease elective operations, and discharge as many patients as possible. As expected, admissions for elective inpatient hip replacements very quickly fell to essentially zero – and remained very low (an average of two a day) for all of April. Emergency admissions also fell, though by less. This section focuses on elective hip replacements.

Admissions began increasing again in May, but there were marked differences in the pace and extent of recovery for different regions of England. London recovered fastest to pre-pandemic levels of care, and the South East nearly recovered fully. By the end of 2020, the other regions had not reached pre-pandemic rates of admissions.

Who was prioritised for care?

To understand what this drop-off in care means for patients, we look at the ‘admission deficit’ – the difference between the number of admissions in 2020, and what we might expect based on the average in 2018 and 2019. Overall, there is an admission deficit of nearly 60,000 patients, meaning 60,000 additional people waiting for a hip replacement, who would have had one had there not been a pandemic. This figure is nearly half the usual number of hip replacements carried out by the NHS in a given year.

There are big differences in the deficit in different regions, and for different groups of patients. London’s deficit is around 3,000 patients (a third of its typical annual admissions). The Midlands has a deficit of over 15,000 patients and the North East and Yorkshire of 11,000 – both around half of their annual total. This difference is not trivial. If all of England’s regions had a London-style recovery, there would have been an additional 19,000 hip replacements between mid-March and the end of 2020.

There are also patterns by age – though the variation is much less than it is by region. 80–89-year-olds now have a deficit of around 50%, 60–69-year-olds 48%, and 40–59-year-olds around 45%.

Similarly, there is a small but significant deprivation gradient, with people living in the most socioeconomically deprived areas more likely to be impacted by delayed or cancelled care. This varies substantially by region. In London there is the clearest inequity – with around a 15% reduction in care for the least deprived areas, compared with 30% for the most deprived. Even so, the reduction in care in the most deprived areas of London is much less than that across the rest of England.

Once activity returns to pre-pandemic levels, as it has in some places, the deficit will stop growing but will not shrink. To shrink the deficit the NHS would need to be carrying out more hip replacements than it typically does. From the first lockdown the deficit grew each week in 2020, and is likely to have grown further in the first few months of 2021.

What do delays mean for quality of life?

These admission deficits signify delays in care that result in people waiting longer, often in significant pain, with consequent impacts on their quality of life. There can also be post-surgery impacts, with evidence suggesting that the improvement in quality of life is slightly smaller the longer a person waits.

As of January 2021, 58,000 people had waited an average of 25 additional weeks for their hip replacement. We know from prior research that on a quality of life scale of 0 to 1 (where 0 is death and 1 is ‘perfect health’), a hip replacement raises your score from 0.34 before surgery to 0.80 after, a rise of 0.46 (135%). An additional wait of 25 weeks is therefore equivalent to loss of around 80 days in perfect health.

There is also an impact of waiting longer for care on post-surgery outcomes. We know from prior research that on the same quality of life scale of 0 to 1, waiting an additional week for a hip replacement reduces post-surgery quality of life by 0.00062. For a wait of 25 weeks, this is a 1.4% loss in quality of life, equivalent to around 5 days in perfect health per year. But unlike the pre-surgery changes, these losses will continue for the rest of a person’s life. Those having a hip replacement live on average for another 18 years, so the total loss is around 102 days of perfect health.

Applying these losses to the 58,000 people not treated in 2020 gives a total loss equivalent to 29,000 years in perfect health: 13,000 for pre-surgery waiting, and 16,000 years for post-surgery quality of life.

Of course, these figures are from January 2021, and many of these individuals are still waiting for a hip replacement – it is likely that this has now nearly doubled, and will continue to increase until headway is made in reducing the waiting lists.

Diabetes is a chronic condition that affects nearly 5 million people in the UK. There are two main types – type 1 (about 8% of people with diabetes) and type 2 (90%). Though both relate to the control of blood glucose, diagnosis, symptoms, ongoing treatment and risks vary considerably between the two (see Table 1).

Both types of diabetes are generally managed in primary care, with ongoing support from GPs and specialist nurses to monitor, maintain or improve the management of the condition. Where care is missed, there may be minimal short-term consequences, particularly if someone has been diabetic for some time. More significant consequences involve diabetic ketoacidosis (DKA) – primarily in type 1, and potentially life-threatening – and longer term issues including vascular foot disease and cardiovascular disease.

Diabetes care has been disrupted since March 2020. Services and appointments have moved online or been postponed, and public health messaging encouraged greater consideration before using the NHS. The data we have on diabetes care during the pandemic are both more limited than hip data, and harder to interpret. Rather than present a complete set of findings, this section explores three ‘vulnerabilities’: ways in which diabetes care may have been disrupted during the pandemic, alongside the data that suggests the scale and reality of the problem. In this way diabetes acts as a model for thinking about how other conditions are managed mainly in primary care.

Three vulnerabilities in disrupted diabetes care

The suspension of ‘usual’ care will not have affected everyone equally. Some patients, particularly those who had been managing their diabetes for some time, may have been relatively unaffected. The newly diagnosed (or yet to be diagnosed), and those with significant complications, may have struggled more.

Vulnerability 1: Delayed diagnosis of type 1 diabetes, and risk of severe DKA

If early signs of type 1 diabetes are missed, patients may end up in A&E with potentially life-threatening DKA. We might therefore have expected DKA-related A&E attendances to have increased during the pandemic. In reality, we see the opposite – a rapid fall in DKA attendances in the early months of the pandemic, followed by a slow rise.

But this may not be the whole picture. A national survey found that between March and June 2020, 20% of children with newly diagnosed diabetes presented to health care services later than expected due to the pandemic, with fear of COVID-19 cited as the most common reason for the delay. The same survey found children diagnosed with type 1 diabetes during the period were more likely to have developed DKA and that DKA was more likely to be severe than in previous years.

There may also have been even more serious consequences from the fall in DKA attendances at A&Es. During 2020 there were 1,450 more deaths from diabetes – a 24% increase. Some of these might have been deaths from COVID-19 wrongly recorded as deaths from diabetes, or deaths from diabetes that COVID-19 contributed to. But reduced access to health services may account for some of the additional diabetes deaths.

Vulnerability 2: Missed early detection of type 2 diabetes

Routine NHS health checks and non-urgent face-to-face contacts were suspended throughout 2020, particularly while COVID-19 rates were high. This, coupled with changes to health-seeking behaviour, contributed to 31 million fewer primary care appointments in the year from April 2020 to March 2021 compared with the previous 12 months.

In turn, this is likely to have contributed to lower rates of diabetes diagnosis. Primary care data shows a 26% reduction in type 2 diabetes diagnoses in 2020, equivalent to 40,000 ‘missed’ diagnoses. Though type 2 diabetes does not usually lead to rapidly developing complications, this will lead to delays in these 40,000 people accessing the supportive services needed to better manage their diabetes.

Vulnerability 3: Missed early detection of type 2 diabetes complications

All people with diabetes would usually have an annual check-up – including checking eyes, kidneys, feet etc for signs of diabetic complications. People may also work with nurse specialists or attend education programmes to support in their own self-management. Many of these check-ups were cancelled, delayed or moved online, leading to reductions in patient monitoring. For example, HbA1c testing (a measure of average blood glucose levels for the last 2 to 3 months) was 43% lower in 2020 than in 2019, and referrals to diabetes nurses and education programmes were 35% lower.

The impact of these changes on patients’ short and long-term health is harder to unpick. Unlike type 1 patients waiting on diagnosis, the consequences of a short-term drop-off in diabetes management are unlikely to be severe. However, missed early detection of severe diabetic complications could lead to worse long-term outcomes. Understanding what impact, if any, this has had on patients’ health will need longer term monitoring from GPs. For example, to identify whether this has led to a permanent disengagement with primary care monitoring, or even if positive changes have occurred.

Since the start of the pandemic, government policy and messaging have centred on protecting the NHS, on the basis that if our hospitals are overwhelmed all of our health care suffers.

But this also means that the health impacts of the pandemic go beyond COVID-19. We cannot simply count the cost in terms of COVID-19 deaths, nor can we expect that as the pandemic wanes, the health impacts will wane too. Instead, the almost total suspension of routine NHS care, and the consequent backlog, will have consequences that stretch well into the future.

This analysis has outlined some of these consequences for hip replacements and diabetes – and how we might think about which backlogs are likely to be most problematic for people’s health and quality of life. It shows that some delays or changes to care (eg missing a routine appointment for longstanding diabetes) are unlikely to have major health consequences, as the person is able to cope through self-management. But other missed appointments for the same condition (eg someone on the cusp of developing a complication, or someone newly diagnosed with diabetes) could be significant, particularly for those not coping with their self-management.

It also shows that the backlogs and the consequences of delayed care are not distributed equally across the country. When we look at hip replacements, London has returned more quickly to pre-pandemic levels of care than other regions. But in doing so, those from the wealthiest areas seem to have benefitted the most.

Prioritising patients and maximising efficiency in a way that does not exacerbate inequalities is not straightforward – and is a challenge that will be repeated across NHS care. Using efficient hubs could maximise the number of patients seen and reduce average waiting times, but is this worth it if it comes at the cost of increasing inequality? Should patients be prioritised based on how long they have been waiting and clinical need? Or should wider factors be considered, such as the impact on their quality of life or personal finances?

Front-line clinicians and managers will be facing these questions, again and again, for months to come. How they decide to balance the moral, financial, and political elements of fairness – and how this is approached across the country – will be one of the biggest ever challenges to the NHS’s promise to deliver high-quality care, that is fair and timely for all.

We are grateful to the support of The Strategy Unit who undertook the analysis of Secondary Uses Service (SUS) data, and helped with defining the questions and the interpretation of findings.