Updated: 2 days ago
On the 12th of March I was on Twitter and first saw the diagram and discussions about flattening the curve. I queried the graphic saying that it didn't seem to be reducing the overall number of infections but just spreading them out over a longer period. I have to say it was hard to tell because there was no axis on the graph which made it especially difficult to interpret.
The graph niggled me for a little while. I have always been interested in public health and prevention and although I understood the argument for keeping infections at a level at which our health service could cope, and thereby save lives, it still didn't seem like we were doing much to prevent.
I decided that I needed to find out much more about what was happening and get a much better understanding of what the graph meant.
I also got a bit of pushback for my comments querying the graph and people like Jason Leitch. One comment was 'We need to listen to the science. While it may feel as though "doing something" is essential, it could be counterproductive'.
I studied their daily situation reports to try and get a sense of how things were changing in different countries around the world.
After a few days of studying, listening and reading I began to ask more questions;
Why were we not following the World Health Organisation guidelines and advice in relation to testing, tracing and isolating contacts?
What was herd immunity and how would it work?
The World Health Organisation advice has been very clear and consistent. You need to identify and test cases, including those with mild symptoms. Once a case has been identified you trace their contacts and identify and test and keep going until you reach the end of the cluster, group, area etc. Ideally once a case is identified you isolate the person. If it is a mild case they should be isolated somewhere where they can receive medical monitoring so that if they start to decline, which it seems can happen quickly, they can get quick treatment and potentially avoid an admission to intensive care. Isolating people with mild symptoms also enables their families, communities and the wider public to be protected. They suggest using community facilities for this type of isolation to leave hospital beds free for those that are more sick.
From the 15th of March, armed with all this information, I started querying posts on Twitter and asking why we were not following the World Health Organisation guidelines. I also queried posts saying we were expanding testing and one that said we are doing better in Scotland than England.
On the 17th of March I asked a question via Twitter for Jason Leitch asking why we were not following the guidelines and testing. There was a reply from which said "Why is (insert country of choice) not doing what (insert country of choice) is doing? Well perhaps there is another question to ask first? Do all countries have the same political system, same institutional governance, same demographics, same population distribution, same geography, same economy, same disease vectors, same cultural and social norms, same health and care system, the same people? If we are all the same, we should all do the same (assuming that the first country to do it was right). But if we are not, we should learn, and we should apply that learning to our own situation and then we should decide what to do."
My reply was "Whilst each country is different but WHO advice remains the same - we should be using the whole suite of measures with their key message being 'test, test, test' and track down all cases because to do otherwise is to try and fight this 'blindfolded' "
There was also a comment about if you want to go fast, go alone. Well funnily enough I am used to being unpopular and sharing views that upset other people. When I was Vice Chair of NHS Highland I was very supportive of the 4 clinical colleagues that shared concerns over a bullying in the organisation. I got absolutely mauled at a board session for being supportive, for urging communication with them, rather than a campaign to try and garner support from people saying there was no issue. I also reached out to them privately to try and get a dialogue going with the board. Again this was very unpopular. My card has been marked by the Scottish Government for some time. When they appointed a new Chief Executive to NHS Highland I was unsupportive of the appointment and shared my views with why I felt the candidate was not suitable for a long term appointment. My concerns were brushed aside and in a private one to one discussion with the head of NHS Scotland I was called a "silly girl" for being upset that as Vice Chair no one had bothered to let me know that a new Chair had been appointed when the old one had resigned. My point here isn't to say I am always right, far from it, my biggest learnings have come from my biggest mistakes and I continue to make them. My point is that I am used to speaking up for something even if if that means I am in the minority or a lone voice. Whilst I still find this an uncomfortable position to be in I end up there quite regularly and it was starting to feel that way about our response to Coronavirus.
By now there I was also aware of much more prominent and louder voices than mine querying these things too. Owen Jones, Carole Cadwalladr, George Monbiot, The Guardian newspaper etc to name a few. There were also calls for the Government to share the science that they were basing their approach on and a robust challenge from the editor of the Lancet.
On the 18th of March I started to see that those that were querying the approach our Government was taking were receiving a bit of a backlash. There seemed to be some that thought we should be supportive of the leaders and their approach. Reasons for this varied and included;
They are doing the best they can in the situation.
We have never faced anything like this before.
You must be a Labour, Liberal i.e. other voter.
We are all in this together so be supportive, kind, helpful etc.
This niggled me too. If the time to query and question wasn't now, when there was an opportunity to do something when is/was the right time?
On the 19th of March Boris Johnson said we were going to scale up tests to 25,000 per day. I am guessing he meant for the whole of the UK. There was no reply to my question "By when?"
On the 20th of March Matt Hancock appeared on Sky News and said "Fortunately we are further behind in the growth of this virus than in Italy and our early measures, especially in the contact-tracing of those early cases meant that the growth here in the early days was slower than in the rest of the Europe. That has bought us valuable time to prepare the NHS'.
I am not sure Matt Hancock had actually read the advice to people with mild symptoms but it said, as it has done from the beginning, and continues to say (on the 22nd of March) that if you have mild symptoms stay at home for 7 days. There is no need to contact or advise anyone of this unless your symptoms worsen. The policy was, at that point, the only serious cases requiring hospital admission would be tested and frontline medical staff would be tested. Frontline staff had already spent several days working with cases that they suspected were coronavirus (these were not tested to confirm either way) and the staff did not qualify for tests after this contact either.
I am clearly not a doctor, not an epidemiologist or anything very clever, special or talented in any particular way but this one question has stayed with me throughout this time;
If we do not know who has Coronavirus and where cases are how can we protect people?
For a few days I thought that the reason the UK was taking a different approach was that the UK had a lack of test capacity. However, during a World Health Organisation media briefing there was a specific question on this and the answer was unequivocal. There was not a shortage of testing kits or ability across Europe - the reason for a country not testing was down to the strategic choices it was making in how to deal with the epidemic.
So now it is the 22nd of March. I have been reading the heartbreaking figures from Italy and crying at the thought of all those people and families affected, and still being affected because of all the people still in critical care. I watched the video from Bergamo hospital. It also made me cry - to see medical teams under such intense pressure and people gasping to stay alive. I lived in Northern Italy for a couple of seasons when I first started working in tourism so I have always had a soft spot for the place that played such an important part in my life. I lived at Lake Garda for one season and Lake Como for another. It was heartbreaking to see and to think about but the message from their medical team was clear - we didn't know this was coming, Europe has had warning and the UK should be locking down now to protect people.
People that I speak to and hear about are confused. Advice has been changeable. It was only on the 3rd of March that Boris Johnson was proudly saying that he had shaken hands with everyone who had been suspected of having Coronavirus.
Then came the advice to stop 'non essential travel' but again there was no definition of this. Perhaps the assumption was that everyone would understand that but every person views that term through their own values and experience. Rural areas, including here in the Highlands, are seeing a huge influx of travellers looking to escape areas where there are potentially more infections. There has been much criticism of these people but put yourself in their shoes - if you had the opportunity to move to somewhere that you thought was lower risk would you go?
This mass movement of people shouldn't have been a surprise to the Government who are now busy issuing warnings to people and advising them not to travel. In Italy when Lombardy and other areas were locked down thousands and thousands of people moved from the North to the South. The current increase in cases in Italy are in the South.
We now have the same thing - large numbers of people moving from urban and more densely populated areas to rural areas in the hope that they might protect themselves. Of course for those of us that live in the rural areas we realise what a risk this is because they may well have less access to healthcare then in the area they travelled from. The Highlands is the size of Belgium, with a population of around 250,000 people, a third of which live in Inverness. It is one of the least densely populated areas in Western Europe which means healthcare can work quite differently here. This influx of numbers may also mean that all the preparations going on in rural areas for predicted numbers of beds etc are at risk of being an underestimate due to this influx of people, which again risks more lives.
People are ignoring advice. A friend of mine who lives in Birmingham went out to the pub on the night the closures were announced, as did most of his friends, because they knew it was the last chance they would get. A similar approach to those at Cheltenham who felt it would be the last time there would be a race gathering. Another friend of mine is in the very high risk category because of underlying health issues. I emailed his wife to explain why I thought there was an increased risk in the UK of exposure to people with this virus and that I would urge extra caution. She said she wasn't going to bother telling him because he wouldn't listen anyway.
Then of course there are older people. My Dad and I had a huge argument when I first suggested he should get organised when it seemed that some sort of isolation was coming. He didn't know the symptoms to look out, he didn't know what to do if he had symptoms, he didn't know what symptoms would mean things were worsening or what to do. The final straw came when I asked him about washing his hands and did he know how to do it properly. He got very angry and said of course he did so I told him if he knew everything he best sort it out himself and we didn't speak for two days. I think even he has realised it is more serious than he thought and we are speaking, albeit by phone now. My Aunt, who is older than my Dad, seems to think that social distancing means that you don't travel that far so she is as she puts it 'staying local' as if the Norfolk town where she lives is some sort of protected zone.
In the meantime I am finding it difficult to sleep. I have an increasing sense that our approach needs changing. I keep coming back to the same question again and again;
If we do not know who has Coronavirus and where cases are how can we protect people?
We are still in that position. The advice remains for those with mild symptoms to stay at home, despite the Imperial College report recognising that 25% of people advised to do this probably wouldn't. This also assumes that you are able to recognise the symptoms and that you are able to stay at home, physically and financially.
In the last day I have heard mention of the fact that Boris Johnson is saying that is people don't follow the social distancing rules things will be worse than Italy. It is looking like they might be but that will not be just down to social distancing, it will be down to the failure to identify, test, trace and track and to allow free movement of people throughout the country - and to continue to do so.
24th March 2020
Well today we are on lockdown - although some people still seem a bit confused about what that actually means.
It has been another rollercoaster of a few days and yesterday I have to say I found it all too much and just hid on the sofa all day, not going anywhere and not doing anything other than losing myself in a couple of box sets. I was feeling rotten and feeling quite down mentally as well - it just seemed so unbelievable to me and the path the UK is taking makes no sense to met at all.
However, last night I realised that something was changing. I watched the Boris Johnson briefing giving clear instructions on the lockdown that was going to happen for the next 3 weeks. Whilst I felt relieved to hear this news, I am terrified that it has come too late and that in two weeks time we will be overwhelmed, not least because we will still have no idea of where cases are.
The guidelines for people with mild cases has been changed to say do not get in touch because you will block the line for people who are more sick. Until we get to know where cases are I can't see how we will find the end of the outbreak. Staying at home will simply not be enough.
If our cases are going to be higher than Italy then our hospitals simply won't cope, especially given the numbers of staff being affected by lack of testing or in some cases lack of PPE.
So Covid19 is now invading my dreams. I woke up in the middle of the night having had a dream about testing. I was thinking a lot about testing yesterday because we just don't seem to be testing very much at all at the moment. Without testing how are we going to be able to lift a lockdown because we still won't know where cases are? Here in the Highlands they are setting up 13 testing centres but where is the testing capacity coming from?
NHS and care staff are going to made a priority with testing and given the numbers that work in this sector (approximately 3 million people) I just can't get the maths to work. Let's say we get to 25,000 tests a day. As of 25th of March we are not at that capacity and on the 18th of March the Government said it would take 4 weeks to get to that capacity. Anyway, let's use 25,000 for now. With 3 million personnel it will take 120 days or 4 months to test everyone in the NHS and that is using all the test capacity. Put another way that 25,000 test capacity means there is only enough to test 1.2% of the total NHS and social care workforce each day, and that is using the full amount of testing available in the UK i.e. none is being used for patients, to identify mild cases etc.
This makes me wonder whether we will run out of staff? Particularly given there are reports from the Doctors Association and the Royal College of Nursing about a lack of protective equipment. What a dreadful position we are putting these people in. They don't have enough protective equipment and they are going to find it difficult to get tested if they have symptoms so will have to self isolate for 7 or 14 days depending on their living arrangements.
If large numbers of personnel start disappearing for a week or two at a time that is going to be a huge risk, just at the time when we will be having an influx of people needing care and treatment. If I was a volunteer coming back to help out and there was a lack of PPE and testing I would be thinking very hard about whether I wanted to come back after all.
I've been thinking about testing a lot and there is something that doesn't quite add up for me. Currently the criteria for testing is if you are going to be admitted to hospitals or having severe symptoms and a hospital admission looks likely. Those with mild symptoms are excluded and most staff are currently excluded. However as of the 26th of March there were 104866 tests carried out of which 93208 were negative. (Figures from Department for Health and Social Care daily tweet.)
While of course it is great to have so many people not having Covid19 there does seem to be something at odds with the testing policy versus the results. Are that many people exhibiting serious symptoms and requiring hospital admission which is turning out to be something else?
The daily Government briefing mentions testing and talks about ramping up testing but this doesn't seem to be happening.
On the 5th of March there were 18083 tests done and by yesterday (26th March) 104866. Yesterday there were 7847 tests done through the country which is enough to test 0.4% of the NHS and Social care staff, is they qualified for testing, which they mainly do not. It is a long way from the 25,000 tests that have been mentioned a number of times and now a figure of 250,000 per day has been mentioned too.
In relation to testing per million of population we have, as of 26th of March, completed 648 tests per million population. This is a long way behind China and South Korea which are in the 4,000 per million population.
There seems to be a new test that is going to be available soon - an antibody test. The Government are testing it this week and hope to release it next week. They have apparently ordered 3.5 million tests. Let's see what happens next week.
In the meantime cases of Covid19 are climbing significantly. Here are the dates for how long it has taken to reach each 100,000 cases (numbers are taken from daily figures at WorldOMeter so not quite 100,000 rather daily cases)
Jan 22nd - March 5th 98,425 cases
March 5th - March 17th 198159 cases
March 18th - March 21st 304,979 cases
March 22nd - March 23rd 378,830 cases
March 24th 422,574 cases
March 25th 471,035 cases
March 26th 531,865 cases
As I write this at 2pm on the 27th of March cases are 552,943. That is a big growth with the biggest number of cases coming from the US.
The UK is of course on lockdown but I wonder how we will be able to get out of this lockdown? If our testing capacity is not adequate enough we will not be able to release the lockdown without risking more people becoming infected. If we aren't testing care staff then we are in danger of losing large numbers of them as they become exposed to more people with symptoms i.e. right when we need them most.
Finally, I read today that we are not recording all Covid19 deaths - only those where the person was tested and identified as a confirmed case in hospital is being recorded. This means not only are our actual case figures looking much lower than other countries, because we are only reporting more serious cases, our deaths are going to look lower if we don't record properly. As cases rise this is likely to worsen ie. we will be even less accurately recording death rates.
Without accurate recording how are we ever going to be able to properly analyse what has happened and learn the lessons for any future pandemics, or indeed the potential second wave that is being talked about? If we are not accurately recording the cause of death, testing and tracing contacts how can we make the decision about when the time is right to lift the lockdown?
I am finding these things difficult to deal with because I feel so small and helpless about doing anything about them. I wonder why people can't see what is happening? There seems to be a great deal of support for the Government's approach to this situation. I am aware that I must be sounding, to my friends and family particularly, like a doom merchant. I have been warning them to be extra careful, explaining the lack of testing and the difficulty therefore in knowing who has the virus and who does not. I really am trying to find some positives - there just don't seem to be too many at the moment.
A huge positive is the amount of meaningless stuff our NHS has been able to dump in order to free up capacity and focus on this virus. I hope we keep that lesson - so much of what happens every day in the NHS seems to prevent people from doing the most meaningful parts of their job. I hope we keep the new ways of delivering services that are more streamlined.
I also hope we realise the important of public health. This is all the preventative stuff and it receives about 1% of the total NHS budget. Just imagine what a health service would look like if that was 10% of the resources. Imagine what this situation would have been like if we had focussed more on prevention rather than just flattening the curve so that NHS services could cope with the total number of cases (I know that this also saves lives of course but my point is there seemed less discussion about reducing total numbers).
For those of you reading this who say you can't prevent the virus, I agree, you can't but you can prevent the spread.
I feel sick. I have just read the figures on the WorldOMeter and UK deaths are 563 already. That doesn't include deaths outside hospitals so this figure is likely to be an underestimate too. This figure is half the total that Italy had at the peak of their outbreak and we are supposed to be 2 weeks behind them. If these numbers continue our rates are going to be higher than Italy and of course out total case numbers are skewed because we are not recording milder cases. It seems we are not going to have adequate testing until the end of April at the earliest which makes me wonder how we plan to get on top of this outbreak? Will the peak pass before we have enough testing? Frontline staff are still not being tested so it makes me wonder what we will run out of first - frontline staff because they are quarantining themselves, beds or ventilators? Without testing how can we lift the lockdown measures?
I have had to take a bit of break over the last few days because it has been really getting me down. For now I am focussing on the fact that myself and my family are safe at home and I warned my friends to take extra care because of the risks caused by our lack of testing approach. I feel like I should have been able to do more but I am a pretty insignificant so that seems all I can do for now.
5th April 2020
Today we did another 'window visit' to see Mum. It didn't go very well, the staff hadn't been told we were coming and they sat Mum down on the sofa in her room so that she couldn't see us very well and we couldn't see her very well either. The member of staff who brought Mum in opened the window past the safety catch so it was opened a good few inches at the bottom. We waited until she left and closed the window back up to just being an inch or so open as we didn't want to expose Mum to any droplets.
Vascular dementia is very up and down anyway and perhaps Mum was just having a bad day but she wasn't very aware of our being there today and a bit out of sorts. I think she found the situation a bit confusing and could hear us but not see us properly. Her teeth have deteriorated quite badly and are much browner just over the course of a week. I am taking weekly photos of her so we can document her progress. One of my neighbours works at a local care home and she says the residents are going stir crazy and finding the lack of connection to families and friends very difficult which is resulting in different types of behaviour. We still have not had any communication from Sanctuary Care about ways to stay in touch with family members in their homes and everything we have done we have done ourselves. We have set up a blog site so that the home can show Mum photos and videos - although we actually have no idea if they are actually doing it. The National Institute for Clinical Excellence used quality of life as a measure when making judgements about the benefits of treatments. I think we are in danger of forgetting that a life with no contact with family or friends, no activities and no access to the outside is not a very good quality of life at all.
I read, with horror, that 13 residents died in the Burlington House Care Home in Glasgow. None of them were taken to hospital and none of them were tested for Covid19. The home had stopped all visiting, as I think most care homes have. Two members of staff went to hospital and have tested positive for Covid 19. I also read, with equal horror, about people being told their doctors were writing Do Not Resusitate order for them, even if it was against their wishes.
That leaves me struggling to understand what is going on. I thought the reason we were isolating people in care homes was to protect them from Covid19. However, if they then get it why are they not able to access hospital treatment? It seems too much of a coincidence that out of 13 people in Burlington House the clinical decision in each case was that none of them required hospital treatment? Does that mean we are now making clinical decisions based on groups of people - for example those that are older and potentially nearer to end of life are not going to get access to hospital care on the basis that this could be used by someone with a) better potential outcome b) more life expectancy?
I read a letter today by the Chief Executive of an organisation that supports people with learning difficulties and they have been written to by various GP practices to say they are putting in place Do Not Resusitate Orders for these people. This again seems to be a blanket decision made in relation to a group of people i.e. those with additonal needs. The whole point of advanced care planning is that the decision for one person will be different to another. Our Mum for example does not have any underlying health conditions - she is fit and healthy generally and two years ago recovered from a huge blood clot in her lungs that the doctor said would have finished off many people much younger than her.
The decisions about advanced care planning should be made individually and should be regularly reviewed. As a family we all have power of attorneys and I have a Living Will. We recently had a family discussion about our wishes in light of Covid19 and what we would like to happen if we contracted this and required hospital care etc and our wishes in relation to various scenarios. We have also discussed and reviewed Mum's advanced care plans and discussed what we would do in the situation that she got it etc. However, these discussions will be ongoing as things change - they are not a one off conversation.
Likewise the decision about visiting and contact should be made individually. Dementia is one of the reasons to visit people as this is classed as essential, as is end of life care. However, there seems to be an interpretation of the rules that there is no visiting. It is possible for family members to wear protective clothing and visit with people who are dying and it is likewise possible for family members to visit those with dementia who may be experiencing difficulties due to separation. These decisions need looking at on an individual basis and then reviewing. Someone who may cope well at the beginning of the period of separation may not cope so well in a few weeks time.
Again with dementia there needs to be some thought about quality of life. What is the point of keeping people safe if there is no quality of life, or that the impact of separation and lack of contact has an adverse impact on their quality of life
I have Power of Attorney for Mum's health decisions but there has been no consultation or discussion about this by the care home company or the local GP. Surely now would be a good time to review our advanced care plan, which I did a while ago, and make sure we were all on the same page.
Despite complaining to the care home company about the total lack of communication and sending them lots of suggestions about ways that families can stay in touch with loved ones they have done nothing. Not only are their actions having an impact on residents but there is also a big impact on families.
Likewise the decisions to not let families visit at the end of life when someone probably has Covid19 - that is likely to create trauma which will take years for families to recover from. This decision needs to be weighed against the risks of visiting and if people can visit safely then this should be facilitated. My concern is that the lack of personal protective equipment is so severe that this is infact the real reason people cannot visit.
With regard to the overall approach to Covid19 there is now some more confusing messages being shared. The Government shared that everyone should stay at home, despite the warm weather forecast for this weekend, leading many to think this meant stay indoors. They then said that if people kept going outside and gathering they would increase the restrictions so people would not be able to leave their homes. Again there needs to be balance here. The impact on people's mental health of not being able to go outside, if they don't have access to a garden for example, is likely to be significant if this type of condition was imposed for any length of time. The whole of the UK suffers from a Vitamin D deficiency anyway, and even more so in Scotland so the benefits of 20 minutes of sunshine should not be overlooked, alongwith the mental health benefits of connecting with nature and the physical benefits of exercise.
There seems to be a move to blame the public for the virus spreading but the spread is also down to a lack of tracking, tracing isolating.
The Chief Medical Officer in Scotland went to her holiday home this weekend, despite that being against her own guidance. She issued an unreserved apology which didn't seem that unreserved as she talked about their being reasons for her going, although they weren't justified. The ill judgement that this action shows is staggering and it also shows a huge level of naivety. That is not a political statement - it is just a statement that would apply to anyone in that position who did something similar.
For me the biggest struggle through this whole experience has been the lack of open and honest communication. In my experience, people can deal with bad or difficult news if you are open and clear about it, including being clear about whether you have all the information or not etc. There has been a consistent blurring of messages throughout this process. There was the bragging of having shook hands with lots of Covid19 patients at the early stage, alongwith confusion about that message was being given out socialising. Cheltenham went ahead when many other large events had been cancelled, leading to another mixed message.
The messages around testing have been altogether confusing. Firstly there was talk about ramping up testing but it is only in the last couple of days we have managed to get to 10,000 tests a day for the whole UK. Then there was much talk about the new antibody tests coming out, then news that these would not be for the public but purely health personnel and then no mention of these tests at all. Then there was talk of getting to 100,000 tests and 250,000 and then back to 100,000 tests by the end of April. The figures for cases are blurred by only including those that have had a test confirmed and in hospital and the figures for deaths are equally blurred by not including anyone who died out of hospital and anyone who has not been tested and had it confirmed in hospital also.
The message today has been changed to say 'act like you have got coronavirus'. I am guessing this is because of the new research about people with no symptoms being infectious but perhaps it would be helpful to explain that more clearly? I am finding the daily press briefings difficult or often impossible to watch. There are so many slogans, with talk of fighting a war, defeating the enemy etc. I don't find this information helpful when there is such a lack of equipment, testing and confusing messages and policies. As such it seems we are ill equipped to win the war at present.
My mental health has been taking a battering through all this. Thinking through options and scenarios for family members is difficult, as is reflecting on my own mortality and my wishes should I get it and need hospital treatment. I range from feeling dread at what is to come, to having to shut myself off from the news entirely and focussing on something else.
I am trying to find joy in the immediate things - sparrows occupying the nest box by my front door, blackbirds building a nest in the conifer tree, my family being OK, laughing at a silly video, singing or connecting with friends via Zoom. It requires constant work
Imperial College Report giving mathematical modelling on outbreak