Doctors ignored me, a disabled woman, when deciding if I’d be resuscitated in the pandemic

I am 27 years old and from Newham in London. I love singing and watching Disney movies. I have a mild learning disability, cerebral palsy and use an eye gaze commuter to communicate. My younger sister Ferdus is my best friend and my biggest advocate.  

During the pandemic in 2020, when I was 22, I was taken into hospital due to complications related to a medical device. I was in lying in a hospital bed with my sister next to me in the room when the doctor came in and asked my sister to make plans for my end-of-life care. I was in hospital again in 2021 and this time the doctors asked if she wanted me to be resuscitated or not.  

I could hear and understand both of these conversations, but the doctor did not ask me to be involved. I just had to sit and listen to a discussion about my future with no control – just because of my disability. It upsets me when I am ignored or excluded from my own healthcare plans, but to not even ask me if I wanted to live or die was beyond what I could have imagined.

• ‘What gave them the right?’: Fury after doctors refused to resuscitate disabled man during pandemic
• Covid pandemic forever changed disabled people’s lives. History must never be repeated

It has now been five years since Covid, this gives us a chance to reflect on the impact of a truly catastrophic time in all of our lives. But the pandemic had a particularly devastating impact on people with a learning disability – we died at significantly higher rates than the general population, as well as just struggling to access the basic health and care support we needed.  

For me looking back on my personal experience, it reminds me of how people like me who have a learning disability were made to feel like second class citizens. Doctors ignored us and asked our loved ones if they would sign Do Not AttemptResuscitation notices (DNARs) simply because we had a learning disability.  

Throughout my hospital stay during Covid they did not respect my communication needs and rights – staff frequently ignored me and disregarded my hospital passport (a crucial document detailing my care needs and preferences).  

My sister couldn’t believe it when she would visit me and it came to asking for blood tests or giving updates, they wouldn’t include me. Healthcare professionals made assumptions about my capacity to consent, excluding me from discussions about my care and making decisions without my input, they would just start speaking to me or speak between themselves. 

People with a learning disability have always faced discrimination when trying to access medical care, which accounts for why so many die younger than the general population. During the first wave of the pandemic people with a learning disability were up to four times more likely to die from Covid. People with a learning disability die on average up to 23 years earlier than the general population and only four in 10 of us will reach our 65^th birthday. 

I know the NHS was under huge pressure during Covid, but there was a significant lack of reasonable adjustments made for people with a learning disability around being accompanied in an ambulance in an emergency or having visitors in hospital. I was not the only one that was denied adjustments such as having a family member with me to explain what was happening or getting easy-read information.

Mencap’s view on the decision not to resuscitate people with learning disabilities during the pandemic

In a survey of learning disability nurses run by charity Mencap, only one in five learning disability nurses reported always seeing reasonable adjustments being made and one in four learning disability nurses surveyed said they had seen examples where people with a learning disability were not allowed to be accompanied by a family member, carer or supporter into hospital. These reasonable adjustments ‘aren’t just ‘nice-to-haves’, they can be the difference between life and death.’  

For too long people with a learning disability have faced outdated attitudes, and when these are present within the NHS, they experience a healthcare system that dangerously fails to meet our needs. During the pandemic, stretched NHS resources and pressured decision-making meant that biases and discrimination became more visible and people with a learning disability suffered because of it. 

The NHS 10 Year Plan is an opportunity to right some of the wrongs for people with a learning disability and start giving them the same chance of a long and healthy life as everyone else. Government has a chance to learn from mistakes that have gone before and needs to truly listen to the experiences of people with a learning disability. 

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