By David Saffer

It is “unthinkable” blanket ‘do not resuscitate’ (DNR) decisions are being applied to vulnerable groups says Kisharon’s Hadassa Kessler.

Kisharon’s Director of Operations was responding to an article in The Guardian last Saturday highlighting Mencap findings that individuals with learning difficulties with Covid-19 were given ‘DNR orders’ during the second wave of the pandemic.

The practice was reportedly condemned last year and led to a Mencap investigation. The Care Quality Commission confirmed last month that Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices had resulted in potentially avoidable deaths last year.

DNACPRs are generally for people too weak to benefit from CPR, but Mencap said some were issued to people with learning disabilities. The CQC are to publish a report on the practice.

Ms Kessler is a champion of human rights and with Kisharon raises awareness about the valuable contribution to society people with Down’s Syndrome and other learning disabilities make.

“It is unthinkable blanket DNR decisions are still being applied to vulnerable groups, and with the numbers of people with a learning disability who died of Covid as well as the persistent lack of prioritisation of people with learning disabilities for the vaccine,” she said. “What does this say about us as a society and how we value the lives of this group of people? We must continue to raise awareness on this and champion human rights and equality for all.”

So, what is the procedure if a person that Kisharon supports goes into hospital?

“Thankfully, all the people supported by Kisharon have remained safe and well in the second wave, aside from one mild case of Covid which was treated at home,” Ms Kessler explained. “However, we do have Hospital Passports prepared for everyone we support so that if they do need to be admitted, there is information accompanying them that identifies their health, communication and cultural needs in a clear format so that everyone treating them knows how best to support them.”

She added, “We would strongly advocate for staff or a family member to be allowed in, in full PPE, to ensure that all their needs are being upheld and that the person is given the treatment s/he needs, however, this is not a given and we are aware of this. Our links with the CCG and local authority learning disability group would ensure that the Learning Disability Hospital Liaison team can intercede on behalf of the patient as well, both in terms of their admission and discharge.”

Kisharon is well known for its role in the community so how are families supported if a child is in hospital?

Ms Kessler commented, “If a family had a child in hospital we would be in regular communication with them and wherever possible we would advocate for a support worker or family member to be allowed in, in full PPE, as well as ensuring hospital staff had all their medical details and Hospital Passport.

“We have known of some cases when family members have been allowed to visit regularly in full PPE, and no doubt this impacted significantly and positively on the person’s treatment and recovery.”

Revelations in the report are disturbing, how is Kisharon supporting families affected by this story?

Ms Kessler said, “We at Kisharon are a family and will always ensure families are fully informed and supported. To anyone who is concerned we will confirm the processes we have in place.

Currently, we know much more about prevention and risk than we did in the first wave, which is really important. Ensuring all staff and people supported have regular Covid tests, and of course continuing to promote the vaccine for staff and people supported will certainly go some way to help. But equally we need to be able to challenge poor practice and blanket clinical decisions which undoubtedly can cause death and ensure that families and people’s circle of support have a say in determining decisions about treatments and hospital protocols.

“One way to ensure this is to consider application for Deputyship or Power of Attorney, something we have been strongly encouraging for many years, and another is to make sure that each Hospital Passport represents the choices of each person at the heart of their treatment and that all required interventions are carried out in order to preserve life.”

She added, “There is a halachic implication here too, which I am not qualified to answer, but we will support families to clarify these crucial questions with their Rabbi and to ensure that religious viewpoints are upheld too. Each individuals Rabbi would also ensure any choices would be noted in their Hospital Passport.”

The ‘DNR’ revelation came with Ministers under pressure to reconsider a decision not to give people with learning disabilities priority for vaccinations.

Late yesterday, the government announced 1.7 million people would be added to the shielding list, prioritised for the vaccine and asked to shield until 31st March, an extension from 22nd February in a previous shielding letter.

“The people on the new list will be added based on a new tool using complex algorithms, taking into account a variety of factors including ethnicity, deprivation and BMI,” commented Ms Kessler. “This may result in the prioritisation of more people with learning disabilities due to the variety of risk factors identified by the algorithm, but it is my understanding that the diagnosis of learning disability itself does not factor in the tool.”

Edel Harris, Mencap’s chief executive, had called on the government to save some of society’s most vulnerable people by prioritising all people with a learning disability for a vaccine.

Regarding the DNR situation, she confirmed that people with a learning disability faced “shocking discrimination” with DNACPR notices.

“It’s unacceptable that within a group of people hit so hard by the pandemic, and who even before Covid died on average over 20 years younger than the general population, many are left feeling scared and wondering why they have been left out,” she reportedly said.

The Guardian article noted recent NHS figures in the five weeks since the third lockdown where Covid-19 accounted for 65% of deaths of people with learning disabilities. Office for National Statistics illustrated the rate for the general population was 39%. Both statistics are taken from different measurements.

According to Public Health England, younger people with learning disabilities aged 18 to 34 are also 30 times more likely to die of Covid than people the same age.