‘Do Not Resuscitate’ orders and no vaccinations: how those with disabilities have constantly been overlooked

Of the 50,888 coronavirus deaths recorded between January and November, 30,296 of them were people with a disability according to the Office for National Statistics (ONS). The ONS estimate that among severely disabled individuals, the risk of death from COVID-19 is three times higher than average.

However, the differences in the likelihood of death from coronavirus are different depending on the age and gender among groups of individuals with disabilities. According to Public Health England, people with learning disabilities aged between 18 to 34 are 30 times more likely to die from COVID than other individuals within the same age cohort.

ONS data highlighted that women with severe disabilities were 3.5 times more likely to get coronavirus. Women who had ‘less severe’ disabilities, were two times greater than women with no disabilities to die from a coronavirus related death. Men with no disabilities were 1.9 less likely to die from a coronavirus related death than a man with less severe disabilities and 3.1 times less likely to die a coronavirus related death than a man with severe disabilities. For those with medically diagnosed learning disabilities, the risk of dying from coronavirus was 3.7 times higher.

The study highlighted that disabled people account for 17.2% of the population in the United Kingdom however they account for almost 60% of coronavirus deaths in the country.

Recently released NHS figures displayed that during the five weeks since the beginning of the third lockdown, COVID-19 was the cause of death of 65% of individuals with learning disabilities. Additionally, ONS figures displayed that the cause of death relating to coronavirus accounted for 39% of the general population. Overall the ONS study found that disabled people in the UK were immensely affected by the pandemic. The study highlighted that disabled people account for 17.2% of the population in the United Kingdom however they account for almost 60% of coronavirus deaths in the country. This study suggests that six out of ten people who died from a coronavirus related death in the past year were disabled.

Charities have been desperately calling for the government to act stating that the data was “horrifying and tragic”.

A representative from the disability equality charity ‘Scope’, expressed that those with disabilities had been impacted hugely by the pandemic and the government needed to act as soon as possible. He discussed further that these tragic statistics represent the stories of individual disabled people whose lives have been significantly cut short by the COVID-19.

The Office of National Statistics said that the essential part of the findings of the study were that those with disabilities were disproportionately unprotected from a variety of disadvantageous situations.

Richard Kramer, Chief executive of national disability charity Sense, relayed a similar sentiment to Scope- disabled people have been forgotten throughout the pandemic by the government which has been shown through insufficient support and lack of communication and information. He added that it is essential that the governments’ plans for a route out of lockdown prioritise disabled people and their families.

The Office of National Statistics said that the essential part of the findings of the study were that those with disabilities were disproportionately unprotected from a variety of disadvantageous situations.

Do Not Resuscitate Orders 

Despite significant data highlighting that those with disabilities were the most affected by the virus in our society, the government has not prioritised them.

It has been suggested that DNACPR orders have contributed to coronavirus deaths that were likely avoidable during the last year.

An investigation conducted by the care watchdog has brought to light that during the second wave of the coronavirus pandemic, disabled people have been given Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices. It has been suggested that DNACPR orders have contributed to coronavirus deaths that were likely avoidable during the last year.

DNACPRs was created to be used for those that are ‘too fragile’ to gain from CPR, however, since receiving reports during January from individuals with learning disabilities having been notified that if they were taken ill with coronavirus they would not be resuscitated, Mencap stated that DNACPR has been issued to individuals based simply on the fact that they have a learning disability.

An anticipated report on the practice from the CQC is due to released soon. A representative from the Department of Health and Social care stated that it was not acceptable by any means that ‘do not attempt CPR’ orders were being handed out in a blanket fashion to any cohort of individuals. He continued that there has never been policy stating this should happen and they are responding by putting measures in place to prevent this from happening and that they have requested that the CQC review DNACPR orders issued during the pandemic. The CQC report process has begun and the findings will be revealed towards the end of the year. The spokesperson relayed that they work across work the health and care system will persist to ensure the issue is addressed.

Lack of vaccinations being given to the most vulnerable 

As these promises are relayed by the Department of Health and Social care it has also been highlighted that people with learning disabilities have not been considered a vaccination priority despite accounting for six out of ten coronavirus deaths. Numerous campaigners have been calling on the government to place those with disabilities within the top four priority vaccination groups with even those with mild disabilities are more probable to die from a coronavirus if they catch it.

At the time of writing this article, 14 million people have received the first dose of the vaccine. The Observer spoke with care providers and they stated that an abundance of people with disabilities had been vaccinated in the previous week however some are still on the waiting list.

However, a lady with Downs Syndrome discussed with the Observer that she was frustrated that she had not been given a date for her coronavirus vaccine despite the fact she is in category four. She stated she had to get in contact with her GP several times and only within the past week has her practice accepted it is a necessity for her to be vaccinated, however, she is still currently waiting. She expressed worry for others in a similar situation to her as perhaps they would not have been getting in contact with their practices as much as she has. Even though the Joint Committee on Vaccination and Immunisation (JCVI) placed those with Down’s syndrome in one of four top priority group copious individuals with the condition were put in lower categories of priority and are still waiting despite promises from the government of vaccination.

Mencap have relayed that a common issue is that GP’s do not have any details of disabled individuals on record.

Many have been having to fight for their vulnerable loved ones to receive their much-needed vaccinations. Peter Gillibrand, a journalist for LBC and his family fought tirelessly to make sure his brother Adam was vaccinated against the virus, uncovering that the vaccination of those with disabilities was largely a “postcode lottery”. Jo Whiley, a nationwide renowned BBC Radio 2 radio DJ and television presenter has been tirelessly fighting for a vaccine for her sister Frances, 53. However, an offer of vaccination came too late for Frances as on the 20th of February she was diagnosed with coronavirus and is currently fighting for her life. She pressed that the government should disregard classifications and vaccinate and protect all individuals with learning disabilities.

A consultant in learning disability psychiatry in Leeds, Dr Keri-Michèle Lodge, that part of the problem is that those with disabilities are receiving a raw deal from the health services as the largest factor surrounding the high rate of coronavirus deaths are from those living in residential settings or care homes.  They continue to state that within care homes older adults were prioritised for vaccinations over those with learning disabilities like Adam and Frances in care homes. They declared that the “government were blindsided or just neglectful”.

Mencap’s chief executive, Edel Harris stated that for the duration of the pandemic those who have learning disabilities have received shocking discrimination and barriers in being able to access adequate healthcare. He stated further that is was highly inappropriate the DNACPR orders were being placed on their files and that there was a reduction in their social care support. He continued that it was unacceptable that those who on average died 20 years younger than the general populous had been disregarded and left feeling worried for their lives. Closing, he called for the JCVI and the government to act immediately and prioritise all those with a learning disability for the vaccine to save their lives.

Care England’s Chief Executive Professor Martin Green OBE has also expressed a similar sentiment that they are highly concerned that those with learning disabilities are not a high level of priority in receiving the coronavirus vaccination. He has also called the government to remove distinctions between those with severe and mild learning disabilities and prioritise all individuals with a learning disability within the top four priority group. He closed with the statement that “People with learning disabilities must not be overlooked at any time”.