Why, for many, has “extremely vulnerable” become “completely abandoned”?

Most medicine needs active communication. In consultations patients need to talk about their lives and symptoms to a health care professional. They in turn need to listen before they talk about possible diagnosis and treatment. Then patients need to listen. Patients may then ask questions – and so on.

We all know that if any of these communications don’t work very well, it’s difficult for medicine to work. A hesitant patient might, in their anxiety, communicate less serous symptoms.  A professional, wanting to come to a conclusion, may miss that hesitation. For all sorts of reasons miscommunication can lead to a very suboptimal health care outcome.

But however hesitant – communication takes place. And for much of the last three months, for many of the sickest people, there has been no personal communication at all.

A few weeks ago I mentioned that National Voices had set up a web site to record experiences of Covid – called “Our Covid Voices”. I’m not ill myself so I am not on the “extremely vulnerable” list, but I shield someone who is. So I recorded my experience on their web site and have since been invited to a Zoom meeting with others who have posted.

I’ve spent some time listening to very different stories of 15 weeks of total lockdown. Straight away you comprehend how different everyone is from each other. Given there are more than 2 million people in this category, I am sure that there may be many more groups of people with similar experiences. However listening to 20 experiences, it’s the differences that are most important.

Different combinations of long-term conditions mean that people’s minds and bodies are suffering in very different ways. But even more significant than this, everyone organises around themselves a support group of friends, relatives, people that pop in and help – and yes health and social care professionals.

So as each person tells their story of 15 weeks of lockdown, it is very different from the one before. There are, of course, a lot of similarities. Most people were quite right to be anxious about catching the virus. If they did, they all knew how much worse it was likely to be for them than for the average person.  This has resulted in the prospect of coming out of lockdown being scarier for the extremely vulnerable than for most others.

Many – like my partner and I – had started to go out for their daily walk. But reported having to do all the swerving about because they were more anxious than the people they were manoeuvring to miss. Partially sighted and hard of hearing people found this much scarier than others. Others were too scared to go out at all and didn’t know when that would end.

Everyone had received one letter at the beginning of lockdown and another more recently. The first letter said “stay in!”, the second – talking about ending lockdown – was less clear to people. The main reason it was less clear to them was that 15 weeks of intense and varied experiences had made them all different. Given the long period of anxiety the words meant different things to different people.

Of course the Government cannot write individual differentiated letters, reflecting their different circumstances, to all 2 million people. But if we had a system of universal health care that provided individualised care for each person, it could communicate a personalised message to every individual. Since medicine has to be organised around the specific experience of each individual’s mind, body and lived circumstances, a universal health care system could meet this need for individualised communication.

If only we had such a system…

But… hang about!  We do of course. GPs and hospitals provide it. They keep notes about people and over 15 weeks they could have recognised who was on the extremely vulnerable list and who wasn’t.

And then they could have communicated with every one of them. Not every week but perhaps twice…

For some extremely vulnerable people the NHS has maintained a regular relationship. Those requiring regular blood tests ensured a constant relationship with a nurse and a consultant. Here consultants could give personalised advice about coming out of lockdown. They could also listen to patient responses and recalibrate that advice. Unsurprisingly, since they helped to create the advice, patients who received it were much more likely to go along with it.

But for most of these 2 million people, there has not been any contact with a health care professional for 15 weeks. For many this has been the most difficult and worrying three months of their lives. They recognise that the NHS has been dealing with an enormous crisis, they don’t put themselves above Covid patients in the ICU, they don’t expect the earth, but they would like some support.

People feel abandoned. And there is something very odd about that. Everyone, Government and NHS, have told them that they are ‘extremely vulnerable’. That’s an important label. But many of them with this label have received only 2 impersonal letters. Having been told they are extremely vulnerable – they are abandoned.

Let’s change this.

How about a commitment to everyone of the offer of a phone call from the health care professional that knows them best? Let’s offer them a 10-minute phone discussion about what to do. Some wouldn’t feel they need it. Fine. But some who do  are very scared and others are getting desperate. Being scared and desperate is not a good place to be. It’s not conducive to good health.

Let’s put the universal health care system we have to good use. Let’s promise a conversation to everyone that is extremely vulnerable.