Too many vulnerable people, when asked, described their experience of the Covid crisis so far with the phrase “I feel abandoned”. This is a graphic description of what for many people is a very long and traumatic experience. Abandonment is an awful experience which often leaves a sense of loss and has a traumatic impact upon the ability of those affected to ever trust again. Rebuilding trust after abandonment is often very difficult.
In today’s post I want to suggest that in preparing for a second wave, we need to make sure that many fewer people endure that experience. To learn from the first wave, we must ensure that we alleviate the pain it has caused wherever we can.
It is of course a good thing that by the end of this phase of the crisis most vulnerable people have had some contact with some form of service or a volunteer, but at the beginning, when anxiety was at its highest, most people felt abandoned. For many, all they had was a letter that was sent not just to them but to everyone else on a list. They also received a letter from the Prime Minister that went to every adult in the country.
This is just not good enough when you are very frightened. It must be done better next time.
The original estimate, in March, was that there were at least 2 million people listed in the “extremely vulnerable” category. But now, in July, we have better knowledge of the way in which the virus works with existing conditions. I would expect that number to now be nearer 3 million.
The first purpose of the list is to identify all of those for whom the virus is much more likely to be fatal. For them we need to reduce their likely contact with the virus to zero. We know a lot more about the mortality that flows from the virus with its prevalence around age, existing conditions and ethnicity. (It is difficult to imagine, for example, anyone in residential accommodation who would not be on this list). So we expect a new and bigger list.
The second purpose, (one that overlaps a great deal but not entirely) concerns the people who have had their treatment interrupted. This happened when the NHS had to turn its complete attention to preparing for the virus. We understand that in the first wave services had to be interrupted at breakneck speed but we now know that there are very many people who are anxious about their conditions and who have not yet had the treatment or diagnostic tests that they should have. If the second wave interrupts their treatment for another 6 months these people should not be abandoned either.
With luck we have some weeks yet before any second wave and therefore time to answer the question of who should be on the new list. Let’s use these weeks for local primary care and social service organisations to draw up a more comprehensive list developed from real relationships in localities. In some it has been the voluntary sector running relationships with vulnerable people and their experience needs to be used.
(Since they are sometimes the only people asking, I have heard of a number of examples where volunteers ringing up to ask about about shopping needs have had to try and work out some complex health and health service conditions to try and give people some idea about what to do. In these situations it would have been much better for them to talk to a health care professional, but talking to anyone helps more than nothing).
Now that we can have a better list and more time, let’s use it to develop the best way of communicating with the extremely vulnerable – and it will be different for different people. Spending a bit of time finding out what works, and for whom, would be a worthwhile effort.
One of the good outcomes of the crisis has been the discovery by some public service that digital communication works both ways. Phones and texts are not exclusively set to receive, they can also be switched to send.
Texts do not work for everyone, but they can be an easy first line of communication so why not send a text to everyone who can receive one and ask if it is the way they wish to be contacted in the future – or do they need a phone call?
This action alone could probably at least halve the number of phone calls to be made – but it would still need quite a bit more than a million phone calls to reach everyone (and a couple of million texts).
And this is where we get to the business end of the problem.
Health care professionals understandably think they should be in charge of this communication. They have the skill and the experience to carry it out in a way that will both elicit and give the best information. But they will look at their diaries and say – quite rightly – “we can’t send a few million texts and make a million phone calls. There simply aren’t enough of us”.
First of all one of the experiences that primary care was developing before the virus hit was that the primary care team now contains many new people. Health care link workers, navigators and many other roles are now all playing a big part in primary care. And they all need to be included in this communication team.
But even then there will not be enough.
At the moment the big mistake we are making is that because there are not enough professionals or para-professionals to communicate – we are not communicating at all.
And this is where we continue to make the mistakes of the past. Assuming that nothing at all is in some way better than something which is not delivered by professionals is a very big mistake.
Soon after the beginning of this crisis, 750,000 people offered to do voluntary work for the NHS. Let’s say that 100,000 of those would be prepared to communicate by phone with the extremely vulnerable. What if they phone up and say, “I am Paul and I am a volunteer. Your GP has asked me to contact you about your health. Are you happy for me to do that? If not then I will let your GP know. If you are, what would you like to talk about and what would you like me to do?”
Of course many people would rather have a GP or a nurse talking to them. But people know that this is a big crisis, and so far the alternative for most extremely vulnerable people has been no communication at all. Given the crisis a primary care developed triage would provide some form of communication.
Now that we have some time to prepare it would be outrageous if the second wave experience for a few million extremely vulnerable were to be completely abandoned – again.