COVID-19 Recovery Committee

Meeting date: Thursday, March 10, 2022

Official Report 573KB pdf

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Excess Deaths Inquiry

Good morning and welcome to the eighth meeting in 2022 of the COVID-19 Recovery Committee. This morning, we will continue our inquiry into excess deaths in Scotland since the start of the pandemic.

I welcome Rob Gowans, policy and public affairs manager at the Health and Social Care Alliance Scotland; Lawrence Cowan, director of communications at Chest Heart & Stroke Scotland; Peter Hastie, policy and public affairs manager at Macmillan Cancer Support; Dr Lynda Fenton, consultant in public health medicine at Public Health Scotland; and Dr Francisco Perez-Reche from the institute for complex systems and mathematical biology in the school of natural and computing sciences at the University of Aberdeen. Thank you for giving us your time and for your written submissions.

This is the second of two sessions that we are holding to take evidence from stakeholders as part of our inquiry before we hear from the Cabinet Secretary for Health and Social Care on 17 March.

Each member will have approximately nine to 10 minutes to speak to the panel and ask their questions. If you would like to respond on a particular issue that is being discussed, please type the letter R in the chat box and we will do our best to bring you in. I am keen to ensure that everyone gets an opportunity to speak. I apologise in advance that, if time runs on too much, I may have to interrupt members or witnesses in the interest of brevity.

All our witnesses are appearing remotely. I ask you to briefly introduce yourselves, starting with Rob Gowans.

Good morning. I am policy and public affairs manager at the Health and Social Care Alliance Scotland.

Hi there. I am director of communications at Chest Heart & Stroke Scotland.

Hello. I am policy and public affairs manager at Macmillan Cancer Support.

Good morning. I am a consultant in public health medicine at Public Health Scotland.

Finally, we have Dr Francisco Perez-Reche. I hope that I pronounced that correctly.

Hello. Your pronunciation is great. I am a senior lecturer at the University of Aberdeen.

Thank you. We turn to questions, and I will begin. Some of the previous witnesses in our inquiry have said that, at this stage, it is still very difficult to draw any conclusions on excess deaths and that we might have to wait a considerable time to do that. However, the consultation response from Chest Heart & Stroke Scotland says that, in the past year, there have been

“1,389 more ... deaths at home from heart disease and stroke and 679 fewer in hospital”.

That could be due to people’s reluctance to visit a general practitioner. The response states:

“Latest data shows 25% of people saying they would avoid contacting their GP at the moment.”

Those statistics are very worrying. Lawrence, would you like to comment further?

You are absolutely right. The figures are concerning. I agree with your previous witnesses who said that the full magnitude of the pandemic will become known only over a longer period. We are talking about excess deaths, but we also need to consider whether cases are more complicated and there is a greater impact on people’s everyday lives because they have sought help later, and whether that will have a long-term impact on our health service that lasts more than just a few years. This may be something that will be with us for a long time.

The worry for us is that the pandemic has created a dangerous domino effect. There are a number of reasons behind that, given the figures that we have seen. First, there is the healthcare hesitancy that you talked about in relation to the number of deaths at home.

In addition, emergency admissions and presentations are still lower than average. Whether that is related to fear of coming into contact with Covid or to the view, “The NHS is overrun. I’ll be okay—I’ll see if things get better later,” that is very worrying for us. We need to address that.

We also need to take into account the wider impact of the things that we had to do because of the virus. Lockdown had a big impact in increasing isolation and loneliness. According to Scottish Government figures, 48 per cent of people say that they feel isolated and lonely. There is also the wider impact of policy priorities before the pandemic, which is worrying for us, too.

It is a question of making sure that the whole system is properly integrated. That system includes charity services such as ours. We support people who leave hospital to stay well and happy at home, which has a wider impact on their health and wellbeing, which, in turn, has a positive impact on services and pressures in the system.

We are concerned by a mix of things, which are all interlinked. The initial figures are quite concerning and point to big issues that need to be addressed.

Thank you. I agree with you. It is extremely important that people get back the confidence to visit their GP and do not ignore warning signs.

My next question is for Dr Fenton of Public Health Scotland and Dr Perez-Reche. What is your interpretation of the excess deaths data?

I think that the excess deaths measure is very helpful and has been a robust measure of the overall mortality impact of the pandemic period, through Covid-19 and other causes.

We can see three phases of excess mortality across the pandemic, which had slightly different causes. In the very early phase, in March and April 2020, there appears to have been a short period of a few weeks when there were deaths that are likely to have been due to Covid-19 but which were not certified as such because of testing or diagnostic difficulties. I think that that was a fairly short-lived issue.

The excess mortality in the period over the winter of 2021 was driven largely by Covid deaths.

Perhaps the most concerning period is that from around May to December 2021, when there was a consistent period of excess mortality, about half of which was non-Covid mortality. That excess mortality occurred across a range of causes of death, but there were substantial contributions from circulatory causes. I can go through the other group in a bit more detail, but it is likely to consist of mortality from external causes, such as drug-related deaths and liver disease. That excess mortality occurs across a range of age groups—it is not concentrated in one particular cause or age group.

Since January, there has been some improvement. We have not seen an increase in excess deaths over the past few months of reported data from National Records of Scotland.

My interpretation is that this is a substantial issue, which involves a range of causes of death and affects a range of age groups. In view of that breadth, it is likely that there will be health service factors and factors that are related to the determinants of health. As Lawrence Cowan mentioned, a lot of things have changed as a result of lockdown: people’s material circumstances, their social isolation and their access to services. We need to look at what is driving health and ill health in the first place.

To reflect on your first question a little, I think that it is possible to draw some conclusions at this point. Our understanding of the full extent of the impact will grow over time, but we can take what we know about the determinants of health, about health in the pre-pandemic period and about what has changed across the pandemic to draw some initial conclusions.

My conclusions are very much in line with what Lynda Fenton has just set out.

I looked into the variability of the excess deaths in addition to the expected value or the mean value. I agree that the main concern is that there was a consistent excess of non-Covid deaths in the second half of 2021; before that, there were periods of excess deaths and periods of deficit. It is important to bear those periods of deficit in mind; it might be that some people unfortunately died of Covid before the time they would have died of another disease. That is something that seems to come out from the data.

There was certainly a period in 2021, from July or so, when there was a consistent excess of non-Covid deaths. That is statistically robust. Sometimes, you might find one result or another depending on how you compare things. However, in that case, it is statistically clear that there was a consistent excess of non-Covid deaths. One interpretation could be that some people got to a point where their non-Covid-related disease was already at a critical stage and it took a year and a half or two years for that to appear. That is worrying, because it means that something was building up until there were those excess deaths.

In January 2022, the data is not that clear whether there was an excess or not. There is not a statistically significant deficit or excess, so it looks as though, at the moment, we are back into normal times in relation to non-Covid deaths.

My impression is that it will probably fluctuate, because there is a balance between the number of people who have died before their expected time and then the deficit of non-Covid deaths. It might be that the second half of 2021 was one of those times when there were more deaths than expected and now we might go through a time when there might even be a deficit. However, given the backlog, I think that there will be more periods of excess deaths in the future. That is more or less my interpretation.

Thank you very much for your valuable input. We will probably wait to see the data from this year a bit further down the track.

Good morning. I would like to follow up on the convener’s questions, both of which are important.

On the data question, the submissions from Chest Heart & Stroke Scotland and Macmillan Cancer Support both make the point that there is anecdotal evidence of people who have been suffering from heart disease and stroke in one case, and from cancer in the other case, presenting later at hospital but, so far, it is only anecdotal and there is not enough data.

First, can Peter Hastie from Macmillan Cancer Support elaborate on that? Also, when would you expect the data to appear? Then perhaps I can go to Dr Francisco Perez-Reche, whose paper suggests that there is a bit more concrete information available rather than just anecdotal evidence.

09:45  

The figures are starting to come through. We know that there were excess cancer deaths in 2020 and 2021, but we do not yet know how significant those figures are. Naturally, people who died of Covid might have gone on to get cancer, so, as Dr Perez-Reche has said, the figures can fluctuate.

However, there is no debate whatever that cancer patients are presenting later. Indeed, Macmillan GPs, nurses and our extensive benefits staff the length and breadth of Scotland are saying that, which, as we know, means more advanced treatments, poorer prognosis and more likelihood of death. The cancer system was not good before the pandemic, and all the problems that we knew existed have been exacerbated by it.

The data that we know is the most recent staging data, which showed a reduction in stage 1 diagnosis. The fact is that, if you are going to get cancer, you will want it to be diagnosed as early as possible. In 2020, there was a reduction in stage 1 diagnosis; we expect to see the same for last year, but we will not get that staging data until later this year. In April, we have cancer incidence and cancer survival statistics coming out, which might help us and, later in the year, we will have more cancer mortality and staging data, which might help us, too.

There is one piece of evidence in which the numbers are crystal clear. When the Scottish Government suspended the cancer screening programmes in March 2020, it said that, per quarter, that would mean 248,000 fewer bowel kits being sent out, 46,000 fewer breast-screening examinations and 101,000 fewer cervical screenings. Because the suspension lasted six months, that meant that there were 500,000 fewer kits sent out, 100,000 fewer breast screenings and 200,000 fewer cervical screenings. We know from the Scottish Government’s own figures that cancer would have been detected in around 850 people in each quarter—or 1,700 diagnosed in the first six months of Covid. It is plain what will be happening with that cohort.

One real concern is that there is still a six-month delay to the bowel-screening programme. In other words, when you turn 52, you do not get your kit until you are 52 and six or seven months, and the same when you turn 54, 56 or 58. That backlog and that delay have continued. The situation will right itself eventually—once everybody has done the test, we will back in a two-year pattern—but long-term issues such as the lateness of cancer diagnosis and poorer prognosis will last for years.

Some of the statistics that you have given us are stark and, as a gentleman of a certain age, I am in that category of those who have missed their bowel-cancer screening. I therefore recognise what a problem this is.

In your submission, Dr Perez-Reche, you are a bit more definitive than citing just anecdotal evidence; indeed, you are quite clear that there is evidence of patients presenting with more acute conditions. What have you found?

That is a tricky question, given the data that I had access to. I tried to make the most of that, and I realised that, if you look at the delay between with hospital admissions and deaths, you will see that, at the beginning of the pandemic, the delay was between two and 15 days. Again, I point out that the data is limited, but if we look at later periods, when there were more excess non-Covid deaths—when I talk about excess deaths, I mean excess non-Covid deaths—the data seems to support the idea that there is a shorter delay between admissions and deaths. That might be due to many factors, including deaths not being registered at the same pace, and it might have nothing to do with more acute disease and so on.

There is evidence that people who died in the late stages of the pandemic—the second half of 2021—died in a shorter time. One would need more data to see whether that is the case, because my evidence is not so strong. I would ask for more data on how long it takes for someone to get admitted to hospital or get diagnosed and die. It would be great to have that measure, but I could not find it anywhere.

The other measure was the proportion of deaths by admission—that is, what is the proportion of people who are admitted to hospital and die? Again, that is based on limited data, but it shows that we have been above the normal trend. That is in figure 3 in my report. In the period when there was an excess of non-Covid deaths in 2021, it looks like the proportion of people who died after being admitted to hospital is higher. I thought that that could also indicate a signature of more acute disease. It would be great to have more detailed data in order to be more solid on that.

If there is time, I would like to ask another question following up the convener’s first line of questioning on access to GPs. I direct my question initially to Rob Gowans from the Health and Social Care Alliance Scotland. When we speak to the British Medical Association about access to GPs, it assures us that GPs are working harder than ever, that GPs are still seeing patients and that there has never been a problem for patients getting to see a GP. However, the evidence that we hear from people such as you—it is in your written submission—is that the public are concerned that people have not been able to get GP appointments or have been reluctant to approach a GP. How much of that is a supply issue? In other words, has it been difficult to get appointments with GPs because of Covid restrictions? How much is it a societal and cultural issue whereby people have not sought GP appointments, because they are concerned about leaving the house and catching Covid, or because they feel that there has been so much emphasis on Covid that they do not want to distract GPs from dealing with Covid patients to deal with what they might view as a more trivial matter? Do you have any insight on that?

There is a range of issues to consider, some of which you have mentioned. During the pandemic, the impression was created for many people that they should not go to the GP unless they had Covid, and that Covid was the priority. People found it difficult to get appointments in the early stages if they did not have Covid. We recently did a survey of people’s experiences of accessing GPs during the pandemic. The initial findings are that only around a third of people felt that their expectations were not met when they called the GP surgery.

Experiences included things such as people feeling uncomfortable when discussing issues with receptionists who were exercising the triage function, and preferring to speak to the GP. We found that phone appointments have worked well for some people, but others were concerned about how effective they were.

Similarly, although digital services such as NHS Near Me are suitable for some people, they are more difficult for people who do not have access to a device, do not have a good internet connection or do not feel comfortable coming forward in that way.

There is a mix of issues. One relates to supply, particularly in the earlier parts of the pandemic. Another relates to being able to cope with demand, which might be caused by people putting off going to their GP and then presenting in a worse condition.

The Health and Social Care Alliance highlights that health inequalities have widened during the pandemic. In its submission, Chest Heart & Stroke Scotland says that cases of poor diet, lack of exercise and isolation all increased during the period. What action does the Government need to take? Is the data available to demonstrate clearly that people from lower socioeconomic backgrounds have poorer health and that the impact on them has been greater?

In relation to Chest Heart & Stroke’s submission, a wide and varied range of public services are out there; we are not just talking about health services. Is any planning taking place? Should specific planning be done on inequalities and deprivation in order that we can recover from that?

You are right that the impacts of the pandemic, including economic and societal impacts, have been more marked in areas of deprivation. The British Heart Foundation produced a report recently on non-communicable diseases that showed that there have been significant increases in unhealthy behaviours, such as eating unhealthily and smoking, and an increase in isolation and loneliness. Those unhealthy behaviours have an impact on people’s risk of stroke, heart disease and chronic obstructive pulmonary disease, which are among the main conditions that we deal with in Scotland.

Are services joined up as well as they should be? The clear answer is that they are not. That goes back to a point that I made earlier: some of the problems that we see now have been exacerbated by the pandemic, but those problems existed before the pandemic.

The model that has been used for health has been very much a medical one. In relation to the services that we provide, when we say that we keep people happy and healthy at home, that is about helping people to adjust to life after a life-changing event such as a heart attack, a stroke or a COPD diagnosis, but it is also about improving their exercise, diet and wellbeing. Those simple interventions can have a massive impact. We do that work across the country, including in areas of deprivation. The interventions can have a significant impact on a person’s health, which has a knock-on positive impact on the health service.

We have not joined up such work properly; it needs to be integrated a lot more readily. What do I mean by that? We need to make the diagnosis pathway and the referral pathway to services such as ours very clear. That works in some health board areas; in other areas, the pathways do not exist. The process needs to be a lot easier.

At the moment, we are doing a lot of partnership working with health boards, which is really positive. However, we are doing the running on that and it should be an automatic system, so that when a patient is discharged from hospital, they are discharged automatically to a wealth of services. That happens in some areas, but not in others. That needed to be addressed before the pandemic, and it must be addressed now. It is partly about providing a valve to release pressure on the health service, but it also improves people’s health and, most markedly, it improves it in areas of deprivation. That is a big priority for the future.

10:00  

That is helpful. Rob, on the question of the widening inequality gap, what needs to happen to bring services together to work together?

A number of things need to happen. We know that the number of excess deaths in the most deprived areas is twice what it is in the least deprived areas. We need better data and, in particular, data that is disaggregated by age, sex, race and other aspects in order to understand the impacts fully. We need to take an equalities and human rights based approach to ensure that people’s human rights are at the heart of healthcare access so that health inequalities are tackled. Holistic care and support are really important, including the house of care model, which I particularly recommend.

As Lawrence Cowan suggested, we need the involvement of the third sector, which has a key role to play in supporting healthcare. It should be an equal partner, so the issues to address are underfunding and undervaluing of the third sector. It should be allowed to be a meaningful and valued partner in the design and delivery of care and support. That would require ensuring of adequate funding for the sector, as well.

I think that Dr Fenton wanted to say something on that.

Thank you for the opportunity to come in while we are on the topic of health inequalities. I am keen to highlight that we know well that in Scotland there are substantial socioeconomic health inequalities that preceded the pandemic. They worsened not only throughout the pandemic period but in the immediate period running up to it.

Unfortunately, from around 2012, overall life expectancy stopped improving in Scotland—the same happened in a number of high-income countries. The stalled improvement in mortality was much more acute in populations in our more deprived areas, to the extent that mortality rates were increasing in the most deprived areas in the run-up to the pandemic. That has been overlaid by the situation in which Covid mortality was 2.5 times higher in the more deprived populations. That begins to speak to some of the underlying factors that are common across Covid and non-Covid health that influence people’s wellbeing and their ability to cope with challenges.

On action, we want income support that people can access. We welcome the welfare support that has been available throughout the pandemic through furlough and the universal credit uplift, but we recognise the challenges that are likely to exist now that people’s income has been hit hard and the cost of living is going up. That will limit the choices and opportunities that people have and will further straiten their material circumstances. The consequent psychosocial impacts of that are likely to play out across the current period and the period ahead.

We want a focus on our other universal services outside health, including education, early years support and housing, and on improving places and spaces for people. That brings us to thinking about a “health in all policies” approach. We strongly advocate for that in the Covid recovery period, so that we think about how we can address wellbeing and inequalities across a range of policy areas.

Okay. Thank you. I will bring in Peter Hastie on that question, and I have another question for him. You gave the good example of bowel testing, in which there is now a delay. Is Covid still having a major impact in hospitals, or can we see a shift to non-Covid conditions being seen as a public emergency? In relation to bowel cancer, the importance of bowel testing seems to be quite clear. What other actions do we need to consider for the national health service in Scotland, specifically in relation to cancer?

Health inequalities remain at the heart of everything that Macmillan Cancer Support wants to do. If a person lives in a deprived area in Scotland, they are more likely to get cancer, to be diagnosed later and to die. I cannot see how it would be possible for the pandemic to have improved that situation.

Given that the committee is looking into excess deaths, it would be great if it could start to look into palliative and end-of-life care. We know that there has been a dramatic shift, but what does that mean? Some families might have a household that can cope with that situation, but many others—particularly in the poorest areas—will not be able to cope. We still do not have a palliative and end-of-life care strategy in Scotland—the previous one ended 14 months ago. It is key that we understand the excess deaths and what has happened to patients during the pandemic. Obviously, Macmillan Cancer Support would offer input to that in relation to cancer.

It is clear that the pandemic is not over. Yesterday, the weekly figures from Public Health Scotland showed that more than 4,000 NHS staff were off because of Covid, and hospital cases are rising again. We are really concerned that we are going into yet another wave, and we have only just come out of the omicron wave. It is really hard to see how we will continually catch up with cancer backlogs as they build up each time.

Macmillan Cancer Support desperately needs modelling of the cancer workforce to see how we deal in particular with patients who come through at later stages. They need far more treatment, including more end-of-life treatment. There are workforce issues, so we look forward to the publication of the delayed Scottish Government workforce strategy, which must talk about modelling the cancer workforce. It was not good before the pandemic, and we are deeply concerned about the long-term trends.

What can we do to retain staff in the workforce? We know that staff are burned out. Can there be more learning and development for staff to learn about cancer and to move up grades? We have a wonderful cancer workforce, but it needs to be supported in respect of learning and development and time off for training in order to keep people motivated and keep them in their posts.

There are huge issues but, as suggested, health inequalities remain at the centre of what Macmillan Cancer Support tries to tackle in Scotland.

We have covered a bit of ground so far. To start, I have a general question about the balance between Covid and other conditions. Have we, as a society, put too much emphasis on Covid and taken our eye off all the other issues?

Given that we have faced a novel organism with high transmissibility and high virulence, it was appropriate that we approached it on an emergency footing, that it was a priority for not only Public Health Scotland but across a range of public agencies, and that it has dominated our response over the initial period. Public Health Scotland has recognised throughout that there would be a balance between harms and benefits in how we approached it. Part of our role is to balance the evidence and to try to provide information to inform decision making.

As I have mentioned, there were substantial pre-existing health issues in our population, and we are now seeing, in excess mortalities, those issues continuing to play out and be exacerbated.

I would support a focus on the underlying determinants, but it is difficult to view the situation as a direct competition between Covid and non-Covid causes because there are many commonalities in the factors that will influence health and outcomes across both sets of conditions. The very fact that we see such substantial inequalities in Covid mortality shows us that if we can do something about people’s pre-existing health, and their ability to control their lives and their employment, perhaps there would be much lower Covid mortality, as well as improved health in general.

Let me press you on that. I take the point that there are big inequalities between those who are better off than those who are less well off and so on, but within a particular group, whether that be the better off group or the less well off, did we put too much emphasis on Covid? Should we have been looking at cancer in richer people and cancer in poorer people?

Is your question specifically about the allocation of resource within the NHS?

Yes.

Public Health Scotland’s role is focused on prevention and early intervention and less on the allocation of resources within the health service.

I understand that.

I therefore do not have detailed information about clinical decisions that were taken within front-line services.

Thank you. That is helpful. Mr Cowan would like to come in.

I totally agree with what Dr Fenton said. It is a debate that will need to happen within the health service for a long time. How do we—[Inaudible.]—My microphone was muted.

We lost you for a moment there.

I agree with what Dr Fenton said. This could be a more consistent challenge for health service planning because the virus will still be with us and we will still have to manage its impacts while improving how we deal with existing serious conditions such as chest, heart and stroke.

To answer your question about focus, the focus was quite rightly on a virus that was ready to overwhelm society and the NHS. We now have the space to think about what we would need to ramp up to make sure that there are not more deaths from things like stroke, or indeed more people experiencing disability in the community because they present late. That is why we need to reinvigorate the FAST campaign and other awareness campaigns to remind people that they need to get urgent treatment for stroke. We now have that space and we need to make those calls to remind people that they need to seek urgent treatment for stroke and remember what its symptoms are.

I am sorry; I have to move on to somebody else. Mr Gowans would like to come in.

On the balance between Covid and non-Covid treatment, the pandemic is certainly not over, especially in terms of the impact that people are feeling and the need for healthcare, particularly among people who were shielding, or still are. Equally, as was said earlier, people faced significant barriers to access to healthcare during the pandemic, and that situation has not fully recovered.

It was not necessarily wrong to focus on Covid, but, equally, people’s health has worsened as a result of reduced access and, in some cases, that has, unfortunately, reduced their faith in the NHS. It is important to increase our efforts in both areas.

10:15  

Dr Fenton, I was interested in a couple of points in your paper and I would like you to expand on them. You say:

“Cancer is one of the few conditions where staging is routinely carried out and recorded. It is therefore presented as a proxy”

that might help our understanding. I do not understand why we are using cancer as a proxy.

You also mention the number of years lost, or YLL. I am not familiar with that phrase, although I assume that it is commonly used in some circles. Should we focus more on that kind of thing rather than on the number of deaths or some of the more simplistic measures?

On the point about cancer, when we try to understand the point in a disease at which people seek care and the impact that earlier or later presentation has on the outcome, cancer is clearly important in its own right, as one of the main causes of mortality and morbidity. It is also useful because we have quite rich data around it, as well as a clinical staging system. At the time of diagnosis, patients are given a stage between 1 and 4 that describes the spread of the cancer. For other conditions, such as coronary heart disease and angina, there is not such a consistent way of describing the point that someone’s condition has reached when they present. Cancer staging is also closely linked to the anticipated survival and treatment response. It provides us with a way of tracking into the post-pandemic period whether those things are deviating from what we would have hoped for before the pandemic. Cancer as a condition will function as a kind of tracker of this delayed presentation issue.

I agree that we could broaden our use of measures. Years of life lost is a measure that describes healthy life expectancy. Life expectancy is a summary measure of deaths across the population, which is helpful for comparisons of time and place and remains important as an overall measure. Healthy life expectancy sits alongside that, but provides an assessment of the years of life spent in good health and sums those up into this summary measure. Healthy life expectancy is in the national performance framework indicators, and it will be helpful to continue to measure it. Unfortunately, it was also falling in the pre-pandemic period, and will continue to do so.

There are some other measures that we could consider as ways of monitoring. For example, NRS recently published the avoidable mortality measure, which concerns specific conditions that are thought to be amenable to healthcare. There is a range of other options.

Thank you.

I want to follow on from John Mason’s questions about data.

In my time on the Health and Sport Committee in the previous session of Parliament, before Covid, one of the recurring themes was that we seem to be behind the curve in relation to not only how we collect data but how we analyse it. That has been exacerbated greatly by the pandemic. Do we now have an opportunity to reset how we collect data, to the benefit of the healthcare system, and use that data to drive Government policy on health?

It is a good opportunity to make relevant data available more regularly. Now, after all, perhaps there is an awareness of how important it is to have good, up-to-date data.

Something that might help in that respect is consultations with data scientists such as me or professional researchers to see what kind of data would be needed. Sometimes, the connections are not that clear. Someone might come up with an idea about what kind of data it would be good to have.

That might not be data. What I mean by that is to do with the formulation of how data is shared or collected and so on. It would be good to reformulate that in consultation with people who will ultimately analyse it. That would help. Maybe it has been like that in the past and I was not aware of it.

In the previous parliamentary session, there was a recurring theme about how we could improve the way in which we collect and analyse data. To take that a stage further, I was interested to hear what Lawrence Cowan said about inequalities and how access to the work that his organisation does around group physical activity has been restricted because of Covid. That is more likely to happen in areas that are lower in the Scottish index of multiple deprivation. I am thinking about the collection of data on physical activity throughout the pandemic and the impact on excess deaths related to that. Using that data alongside or cross-referencing it with the health data that we are talking about would probably help us to integrate the third sector offering into NHS offerings. Lawrence Cowan, do you have an opinion on that?

We need to see a lot more of that data. We have a lot of data about the impacts of physical activity levels on people’s general health and the lack of physical activity opportunities in areas of deprivation. There is also a wider issue about making sure that the services available are meeting those needs.

A key point is that data presentation is one thing and data collection is another. The sharing of patient data is at the centre of integration, and that is not happening. To put it politely, it is very difficult for a third sector organisation to work with the NHS without a data sharing agreement. That needs to change, because that is what is standing in the way of interventions being more smoothly and widely available, which could reduce pressure in our NHS and help staff to do their work.

Another data issue is about making sure that data sharing is a lot smoother and that data is more easily accessible to everyone who is helping people’s wider health and wellbeing.

The question that you have raised about who owns the data and therefore how it can used that has exercised the Health, Social Care and Sport Committee and its predecessor for a while. We will not get into that in this committee.

Lynda Fenton would like to come in.

I recognise the need for on-going development of the collection of healthcare data. It might be helpful to recognise the opportunity that the pandemic gave us to develop some of our data presentations. We have made big strides in making data available in a more timely way, not just through the Covid daily dashboards, but through our wider impact dashboards, which provide monthly data on the pandemic’s impact on health services.

One thing to highlight in relation to restart and recovery is the importance of our health surveys, particularly the Scottish health survey, which is one of our main sources of information about people’s health and wellbeing and does not rely on healthcare statistics. Bringing those back to a status that is comparable to their status before the pandemic would be really valuable. This year’s census will be invaluable in helping us to begin to know our population accurately, such as where they live, and to understand their needs. The surveys will be very helpful.

I will finish off my line of questioning by tying up what Dr Fenton has just said and Lawrence Cowan’s comments about the need to share data. This is probably a difficult question to put to you, Dr Fenton, but do we have an IT system that enables us to collect and analyse the data?

There is a range of IT systems across our health service. Some of those support collection and analysis more easily than others. We do not have a single system that easily supports that, and it is certainly the case that some areas would benefit from the development of such a system.

I want to go back briefly to Murdo Fraser’s question to Dr Perez-Reche about patients either being unable to access a doctor or choosing not to go to a doctor, because of a belief that the NHS could not allow it. What is your understanding of that? You seem to be saying that although the data is not definitive, it supports the view that the period from diagnosis to death is shorter as a result of people not seeing their doctor. I hate to be so blunt, but, unfortunately, that is what I am asking about. Is there no way of telling from your data whether death could have been avoidable had the period between diagnosis and treatment been shorter? Is that correct?

Actually, my measure was from admission to death, not from diagnosis to death.

My apologies.

That data might exist, but I did not look into that.

There would be ways of seeing whether deaths could have been avoidable, but that would require mathematical modelling. It would not be just a matter of someone having an idea about what that would be—they would have to carry out the work. The best way of considering the issue would be to get data on the length of time from admission to death and look at that over several periods. I think that the data, rather than the modelling, would be more definite.

Thank you.

Dr Fenton, my next question is for you, although I appreciate that you might not have the answer. My previous question has sparked a train of thought. How has people’s inability to get access to treatment after diagnosis contributed to excess deaths? Has that been a contributory factor?

That is one of the areas where we are still gathering information. With cancer, for example, the main issue was people not presenting with symptoms or not being identified through screening. I think that the evidence from the cancer data is that, certainly in 2020, once people presented, the time from their diagnosis to their beginning treatment was the same.

We can hypothesise from what we understand. With conditions such as coronary heart disease, a patient might present to their GP with chest pain that occurs when they exercise. If people decide not to take that problem to their GP, they will not be started on the medications that help prevent that condition from progressing. It might then become more severe and lead to a heart attack sooner than would have been the case had they gone to their GP when the problem was milder and had they been started on medications that would have prevented disease progression. We can use our knowledge about the impact of secondary prevention—prevention through healthcare services, for example—to understand the impact that delays in seeking care might have had.

10:30  

So there was no delay in people getting treatment after a diagnosis had been established.

The 2020 data for cancer shows that, once patients had been diagnosed, they progressed to treatment as they would have done before the pandemic. The majority of issues were about patients being diagnosed initially, either by presenting to services or through screening.

Okay. Would any of the other witnesses like to come in on that question?

Earlier, I talked about the screening issues, including the on-going issue in relation to bowel cancer. As Dr Fenton has said, our health services are superb once someone is in the system and being treated for cancer, but getting people into the system has been the problem. That has been due to a mixture of issues, including screening programmes not existing and the various reasons why people did not go to their GP. Sadly, a lot of people are diagnosed with cancer at accident and emergency departments, and the fact is that people were reluctant to come forward at the start of the pandemic.

Figures that came out a couple of weeks ago show record cancer diagnostic waiting times. However, those waiting times do not apply just to cancer; there are also record waiting times for people who are trying to get an endoscopy. The problem comes at the beginning of the cancer journey; once the decision to treat has been taken, the 31-day target is normally hit in Scotland.

The issue is people coming into the system with a red flag and their being flagged up via a GP, via screening or via another condition that they present with at an A and E department. It is about whether the diagnostics can be done so that the decision to treat can be taken and the treatment can begin. During the early stages of the pandemic, a lot of decisions were taken about people not coming in for chemotherapy and radiotherapy. We understand why that happened, but those decisions were very difficult.

As has been said, healthcare hesitancy, which we have discussed quite a lot this morning, has had an impact. It is essential that strokes, in particular, are treated quickly. As for the performance of the health service, there is no doubt that professionals on the ground have been moving heaven and earth to make things happen during the pandemic.

The stroke care bundle is a bundle of targets specifically for ensuring that people get treated quickly when they arrive at hospital with a suspected stroke or a transient ischaemic attack, which is also known as a mini stroke. Those targets were being missed before the pandemic, and the data shows that, early in the pandemic, they were missed again. We need to keep an eye on that. It relates to the question about the wider impact of the pandemic with regard to, for example, deaths from strokes and more disability from strokes, and that information will soon be coming through from the stroke care audit. Indeed, the issue was identified as something to flag up and be worried about in the previous stroke care audit.

Dr Fenton, following up on that process, I note that, in its evidence, Health and Social Care Alliance Scotland states that access to doctors was an issue. Doctors have talked to the committee about the enormous strain that they are under, but there seems to be a perception among the public that people cannot get to see their GP. Clearly, it has been necessary for processes to change in order to deal with the pandemic, but will people just have to accept that getting access to a GP will have to be done differently?

Primary care is fundamental to delivering effective and efficient healthcare, so I would very much advocate for investment in our primary care services. I think that determining how those services best meet the health needs of the population is almost a conversation that needs to be had with the population, because we need to understand those healthcare needs and meet them appropriately.

The pandemic has led to major shifts in how we provide healthcare. There will be beneficial learning from some of them, while others will have had adverse effects. However, there is an opportunity to review how we provide services and how they are best meeting need.

Before the pandemic, the inverse care law in primary care was substantially in operation, with the people in the most deprived areas having the worst primary care provision per head of population compared with those in the least deprived. It is of fundamental importance that we appropriately match our primary care offer to the health needs of the population.

Having listened to all the evidence, can I conclude, then, that we clearly still have a major problem with the disparity between richer and poorer areas, because the health inequalities are still there; that the service, once a person got into it, was actually as good as it was prior to the pandemic; that we might have to change the way in which primary care is delivered; and that our screening levels have to get back up at least to where they were before—if not to a better level—to allow us to get out of the current situation? Is that a fair assessment of what you have told us today?

I think that those are reasonable points, but I would add the need to act on the drivers of ill health. We needed to do that before the pandemic, and we still need to do it. We need to act on the fundamental determinants of health in terms of people’s opportunities and chances to build a healthy life.

Right. Would you like to come in on that as well, Lawrence?

Yes. On GPs, it is fair to say that patients have absolutely benefited from some of the things that have been done differently. At the moment, however, the emphasis is on GPs doing things differently to manage pressure rather than to improve the situation.

For us, the issue is really making sure that we can take the pressure off GPs with some of the services that we offer. Long Covid, for example, is a condition that is putting a lot of pressure on general practice, and the similar problems that we are seeing in matching up and sharing data in primary care are exacerbating that pressure. On a policy level, we need to ensure that we do things differently to improve services rather than to manage pressure.

As for service delivery, targets for stroke, in particular, have been missed time after time. When you get to hospital, the care that you get is exemplary, but there are real warning signs of pressure in the system that we are incredibly concerned about.

The last point that I would make is that we are not quite out of the pandemic yet, either.

Absolutely.

Thank you, Mr Fairlie.

I thank the witnesses for their evidence and for giving us their time this morning. If you would like to raise any further evidence with the committee, you can do so in writing. The clerks will be happy to liaise with you on how to do that.

I suspend the meeting to allow for a changeover of witnesses.

10:39 Meeting suspended.  

10:43 On resuming—