I read a tweet yesterday from a social care worker who was grieving for the loss of a person with learning disabilities to Covid-19. He referred to the isolation that the person had had to endure, and the fact that he and other’s who worked with this person couldn’t be with them at the end, and for a moment I found it hard not to imagine the horror of what that might mean for many people with learning disabilities diagnosed with Covid-19. It also made me wonder if we’ve really understood the different ways in which people with learning disabilities and others can be vulnerable to this virus. Vulnerability that doesn't just come from the perspective of pre-existing health conditions, something that Chris Hatton reflected on in a blog on a potential risk factors published this morning:
The evidence is clear that people with learning disabilities are more likely to experience a range of health conditions associated with a greater likelihood of a more severe reaction to COVID-19 infection. Even when overall rates of a particular health condition are similar between people with and without learning disabilities, people with learning disabilities are more likely to be experiencing these conditions are earlier ages. There are also particular groups of people with learning disabilities at particularly high risk of having a poor reaction to COVID-19.
This physical vulnerability has also been recognised in the guidance that has just been issued to clinicians treating autistic people and people with learning disabilities for Covid-19, which states:
People with a learning disability have higher rates of morbidity and mortality than the general population and die prematurely. At least 41% of them die from respiratory conditions. They have a higher prevalence of asthma and diabetes, and of being obese or underweight in people; all these factors make them more vulnerable to coronavirus.
But as I’ve said the underlying vulnerability of people with learning disabilities to Covid-19 is likely to extend beyond underlying health conditions.
Like many parents who have disabled sons and daughters, I’ve spent a lot of time in hospitals. And one of the characteristics of a visit to a hospital with a person who has a learning disability succeeding, is the willingness and the ability of the clinicians to be able to accept the role of the family member or carer, as somebody who knows the person well. Somebody who can act as a kind of intermediary between the hospital and the person who is being treated and cared for. It doesn't really matter if this "intermediary" is a family member or support worker, what matters is that they know the person really well and can share their knowledge with clinicians, and that their presence acts to re-assure the individual as they undergo medical assessment and treatment. But what happens if that intermediary can’t be there as seems to have been the case in the tweet that I read and is often likely to be the case with people suffering from Covid-19.
The guidance to clinicians treating autistic people and people with learning disabilities for Covid-19 recommends that clinicians speak to somebody who knows the individual well stating:
The family or carer will have a wealth of information about the individual and how they have been, including any other co-morbidities and the medication the person is taking. Listen to them as well as the person you are caring for. They know the person who is unwell best and how to look after them when they are not in hospital. They also know how the person’s current behaviour may differ from usual, as an indication that they are unwell.
What is less clear in that specific guidance is whether or not the person who knows the individual well will be with them, especially if they are in segregated or critical care. However, the guidance on infection control is more specific on this:
6.2.5 Visitors to segregated/cohort areas
Visitors to all areas of the healthcare facility should be restricted to essential visitors only, such as parents of paediatric patients or an affected patient’s main carer. Local risk assessment and practical management should be considered, ensuring this is a pragmatic and proportionate response, including the consideration of whether there is a requirement for visitors to wear PPE or respiratory protective equipment (RPE).
For some autistic people or people with a learning disability, the presence of a family member or carer who they know well, would play an important role in re-assuring them and in ensuring that the knowledge required to support their treatment was always at hand. Without that presence and without that insight, an individual with learning disabilities or an autistic person becomes even more vulnerable to the pressures that our health practitioners will be subject to and to Covid-19. A kind of vulnerability that has nothing to do with a person's underlying health conditions and everything to do with the way that things are done.