People with a learning disability were treated in a ‘bias’ way during the pandemic and were written off, with doctors and nurses being advised to refrain from giving emergency care and even resuscitate them simply because they had a learning disability, according to evidence from a leading charity given at today’s Covid Inquiry.
Learning disability charity Mencap’s Executive Director of Strategy and Influencing Jackie O’Sullivan, today spoke out as part of module three of the inquiry which is looking into the health response to the 2020 outbreak.
She revealed that people with a learning disability have always faced deep-seated and damaging 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.
At the inquiry, Mencap revealed:
· GPs contacted care settings where people with a learning disability lived advising that they shouldn’t be treated or even resuscitated if they were admitted to hospital with Covid symptoms. They were being assessed using a clinical tool meant for assessing over 65s.*
· 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. Many were isolated and afraid with no one to offer comfort or explain what was going on and with clinicians missing out on getting crucial health information.
· People with a learning disability were being discharged from hospital without adequate support, ending up in unfamiliar care settings which caused distress and confusion.
· Remote GP appointments meant many people with a learning disability were unable to effectively communicate their pain or symptoms with or understand their GP properly resulting in missed diagnoses.
More than 1.5 million people in the UK have a learning disability which is a reduced intellectual ability, which affects their ability to do many day-to-days tasks people take for granted. Some people with a learning disability need full-time care and support with every aspect of life, while others are able to work and socialise. Communication needs can vary, so it is a legal requirement for healthcare professionals to make adjustments to effectively ensure they understand patients and their health information.
But Mencap says during the pandemic many people with a learning disability were denied adjustments such as having a family member with them to explain what was happening or getting Easy-Read information. Many found it harder to communicate with doctors and nurses because PPE obscured their facial expressions.
In a survey of learning disability nurses run by the charity, 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.***
The charity says these reasonable adjustments ‘aren’t just ‘nice-to-haves’, they can be the difference between life and death.’ A report into premature deaths for people with a learning disability found that a lack of reasonable adjustments to care had contributed to a significant number of deaths.
People with a learning disability die on average up to 23 years earlier than the general population and only 4 in 10 will reach their 65th birthday**.
Mencap was also deeply concerned to hear that more than half of the learning disability nurses it surveyed indicated a concerning level of risk of people with a learning disability being given a ‘Do Not Resuscitate’ order (DNACPR), meaning if they have a cardiac arrest they would not be resuscitated.
This was being applied in a blanket way because someone had a learning disability, failing to take into account that many were fit and healthy.
The charity has urged Government to ‘right the wrongs’ so many people with a learning disability have faced when accessing healthcare by including their views and needs in the NHS 10-year-plan. Mencap has a series of recommendations to tackle the inequalities people with a learning disability face including mandatory training for doctors and nurses on learning disability and autism, and for new learning disability improvement standards. It also needs to address pressures on NHS staff to allow them to have enough time to support people with a learning disability with reasonable adjustments.
Jackie O’Sullivan, Executive Director of Strategy and Influencing at Mencap says:
“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 their 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. They were treated in a that caused fear, distress and put their lives at risk.
“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 will need to truly listen to the experiences of people with a learning disability throughout this consultation process.”
April Sly, 63, from Castle Donington in Leicestershire feels her brother Nigel was discriminated against by doctors and nurses for having a learning disability when he was admitted to hospital with Covid in April 2020. She says:
“A doctor asked me if I would want Nigel to be ventilated saying they often don’t do it ‘for people like Nigel’. I was shocked as it felt like they were writing him off just because he had a learning disability. My brother was only 60 and led a happy, healthy life.
“A nurse later told us they had made a decision not to resuscitate and to withdraw treatment but the reasons didn’t stack up – they said he had no quality of life but this was simply not true. He loved his busy life up to Covid: he read, had a season ticket at his favourite football club and, like everyone, deserved to live a long life. I fell ill and couldn’t be with Nigel in his final moments and the lack of training and learning disability nurses meant he had no one to help him communicate or advocate for him.”
April says she saw discrimination in the healthcare system before the pandemic as well as during it. She says: “Doctors shouldn’t assume patients with a learning disability can’t make decisions or make decisions for them. We need to remember these are people with needs and wants just like everyone else and if anything they need more support and consideration as they are at a disadvantage. The NHS needs to better consider people with a learning disability and give better training for healthcare professionals.”
Mencap is calling for a healthcare system that works for people with a learning disability. People with a learning disability deserve to be respected by the healthcare system, and have their needs understood and catered for every time they require healthcare.
As the Government has launched its consultation into the future of the NHS, Mencap says it wants to see people with a learning disability prioritised so they are respected by the healthcare system, have their needs understood and catered for every time they require health care.
The charity says the NHS’ long-term plan must ensure reasonable adjustments can be made for people with a learning disability, that they have better access to care and treatment, that there are more learning disability nurses and better training for staff so that people with a learning disability get the support and care they deserve. These vital changes will deliver transformational, life-saving changes for people with a learning disability.
