This post originally appeared on the UCL website.
The Covid-19 pandemic has caused the UK population to live in uncertainty, fear and isolation. A national and global emergency brings with it new challenges, but for people with learning disabilities, many of these challenges already exist as a result of unequal access to health, social care and education. A system that does not meet the needs of people with learning disabilities before a pandemic, is not well placed to meet them in the event of one.
The experiences of two self-advocates with learning disabilities, Adrian and Celia Brown, husband and wife, illustrate just this. Adrian and Celia shared their Covid-19- related story after coming through the other side safe and well. It is worth noting that Adrian and Celia are experienced self-advocates, are aware of social injustices that affect them, are assertive and used to asking for help when needed, and have a support network in addition to each other. This is not the case for many people with learning disabilities and it is easy to see how their story could have ended differently for others.
The Equality Act 2010 says that reasonable adjustments or changes should be made to ensure people with disabilities can access services. Adrian highlights that reasonable adjustments were not considered after he became unwell with Covid-19 symptoms, Celia tried to contact their GP and then 111 for help.
“We were told to self-isolate. What does self-isolating do? We then got a letter saying to self-isolate from the government”… “The letter was not accessible. We are not thought of, we are not catered for. They send out a letter, we had no help to understand the letter, we are supposed to do what we are told.”
For guidelines to be followed, they must be understood. Celia had spoken to her GP and to the 111 service, yet neither explained what ‘self-isolate’, an unfamiliar and broad term, means or looks like in practice, nor why they were expected to self-isolate. For many people with learning disabilities placed in the vulnerable category for Covid-19 due to having underlying health conditions, their understanding of the government guidelines was crucial. Reasonable adjustments should never be optional, especially not at a time when life is so vulnerable.
Given that services knew about their learning disability, an Easy-Read version of the letter could have prevented some of the sadness and neglect felt by Adrian and Celia during an already difficult and uncertain time.
Stay at home, suffer in silence
To seek help and advice, the government advised that everyone should ‘stay at home’ and call 111. Celia’s experiences of the NHS 111 helpline left her feeling like she was expected to suffer in silence.
“Two weeks later, I still felt ill. I phoned 111 and they said stay at home, the 111 service were unhelpful, they did not give good information out. All they said is to stay at home and suffer silently”.
The government’s message ‘stay at home’ was shared via the media and healthcare platforms for all to abide by. A simple and catchy phrase that is accessible, ironically raising problems of its own. Without having an accessible explanation for the context in which the message ‘stay at home’ was coined, a lack of understanding of exceptions to such a rule arise. Many people with learning disabilities and autistic people will have found it difficult to apply this command to different contexts and the risk of not seeking help when needed due to the ‘stay at home’ rule for many compounded pre-existing barriers to accessing help.
Celia did make the decision to leave her home to seek help at her local A&E department, she sought help to take her prescribed medication for epilepsy, which she was having difficulty swallowing due to her cough. At A&E, Celia was told again that she should ‘stay at home’ with no help provided and no Covid-19 test offered. A few days later, Celia was admitted to hospital due to having epileptic seizures. Only then was she tested for Covid-19, testing positive.
Managing without support
Celia spoke of her experience of being examined in hospital as confusing and scary with no preparation or clarity with regards to the “scans” that she “went under” and their purpose, which she is still unclear about. She felt “annoyed” that she was not listened to.
A Hospital Passport is a useful communication tool for people with learning disabilities to keep and share with others to help understand their health needs. Having this might have helped and prevented some of Celia’s negative experiences. However, it is often only those with an allocated healthcare professional within a learning disabilities health team that have access to or know about such a resource.
Whilst Celia was in hospital, Adrian was left feeling very unwell at home alone with Covid-19 related symptoms.
“Celia’s my carer. I don’t want to go through all that again”… “No one checked up on me, no one contacted me while Celia was in hospital, I was completely on my own. I felt angry”.
A Carer’s Emergency Card is a useful tool for carers to keep on them for if they find themselves in a vulnerable position in order to alert others that the person they care for is in need. This card scheme is available through local authorities or health care providers, however not all areas have this scheme in place.
The main focus of the government’s social care strategy concerning Covid-19 seems to be on those living in residential care, however in 2018/19 77% of adults with learning disabilities in England live in their own home or with family. While 77% of adults with learning disabilities were not known by health and social care services in 2015, which is suggested to have increased since.
Adrian and Celia were not known by their local social care team, and Celia did not have access to a Carers Emergency Card. The hospital therefore did not know that Adrian was on his own and once they did know, they did not know who to contact, if anyone, to support him. Thankfully Adrian and Celia have other supportive family members who were able to help, but this is not the case for everyone.
Being dismissed, feeling uncared for, nothing new
Asked how they feel now, looking back on their experiences of Covid-19,
“I haven’t had the coronavirus test, I still don’t know if I had it. No one cares, the NHS do not care”.
Their answer became less about Covid-19 and more about “the bad things, all the bad experiences” that have left them feeling uncared for by public services throughout their lives, from the uncertainty of “waiting in waiting rooms” to being “insulted by doctors” and waiting for tests and diagnoses that they found difficult to understand.
For people with and without learning disabilities, the Covid-19 pandemic has caused feelings of fear, confusion, frustration and anger, as a result of uncertainty, isolation and inaccessible and inconsistent information. However, these feelings and experiences are not new for people with learning disabilities, with systemic inequalities that exist through health, social and economic platforms.
People with learning disabilities are four times more likely to die than people without learning disabilities, due to preventable means. Perhaps we should learn from our experiences of the Covid-19 pandemic and rather than seek to ‘return to normal’, create a new normal that benefits all. For if we get it right for people with learning disabilities, we are a lot closer to getting it right for all.