The disproportionately high mortality rates that people with learning disabilities and autistic people suffered from Covid-19 has been flagged in a damning report about the government’s response to the pandemic in England.

The report - Coronavirus: Lessons learned to date - from the Health and Social Care Committee and the Science and Technology Committee, draws on evidence from more than 50 witnesses, including James O’Rourke, family carer, and Steve Scown, Chief Executive, Dimensions UK.

Since March 2020 both Committees have been holding separate inquiries and in October 2020, they launched a joint inquiry to consider several key issues that emerged during the first wave of the pandemic and identify what lessons need to be learnt.

In its conclusion, the Committees recommended that the NHS should improve the data it holds on people with learning disabilities so that this group of patients can be more appropriately considered for vaccination.

It should also ensure the guidance on DNA-CPR notices is clear and properly understood by healthcare professionals and individuals, especially in circumstances where a patient’s carer or advocate may not be able to be present in hospital.

Findings from the report for people with a learning disability

In November 2020, Public Health England concluded that the death rate from Covid-19 among adults with learning disabilities was 3.6 times the rate of the population as a whole. The committees said this disproportionate mortality risk was multifaceted, but there was a high degree of consensus that existing inequalities, which pre-dated the pandemic, played an important role.

Evidence was given by Steve Scown, Chief Executive of the learning disabilities charity Dimensions UK, who said in his experience, pre-existing health conditions had increased the risk of mortality.

He said: “People with learning disabilities have a much shorter life expectancy than people without. That is a well-known fact. I think I am right in saying that it is at least a decade, so there is an inherent disparity to begin with. Also, people with learning disabilities often have underlying health conditions that make them more susceptible to Covid.

“Some of the difficulties they have had accessing the NHS during the last nine months have made treating their usual, normal illness - if I can use that phrase - much harder. We have had instances where people we support have not been admitted to hospital because they are not deemed poorly enough, whereas in the past they would have been. We have had difficulty getting GPs to visit. Often, the only way we have been able to access medical treatment is to dial 999.

“We have had 43 people admitted to hospital during Covid. On no occasion have families or staff been allowed to go with them. That has made their treatment much more difficult for our health colleagues.”

Impact on family carers

While pre-existing health conditions undoubtedly contributed to the increased mortality risk, the committee heard that these were compounded by inadequate access to the care people with a learning disability needed at a time of crisis.

This was a result of restrictions on non-Covid hospital activity, and, significantly, because of access restrictions which prevented family members and other carers accompanying people with learning disabilities in hospital to perform their expected advocacy role.

Family carer James O’Rourke explained that his brother Tony “would not be able to tell you where the pain is” without this support.

James also told the Committees that lockdown meant those people with learning disabilities who lived independently in supported living were completely shut off from the outside world, friends, and family. 

He said: "The second lockdown, for us as a family, was horrendous. I need to put in some context. Tony lives in a one-bedroomed flat, which he shares in a block with others. There are 12 flats. It is allegedly supported living, but the care provider treated it like a residential care home and completely locked it down, not giving us any access to Tony whatsoever." 

The Committees also heard that the lockdowns, and in particular, the loss of social support that came with them, were extremely damaging to the wellbeing of some people with learning disabilities.

Helen Spalding, who cared full time for her daughter Maja during the pandemic, described the serious impact that the loss of her usual support had on Maja’s mental health. She said: "Maja would usually be at college five days a week. She goes to clubs and activities, run by various different organisations. As soon as we went into lockdown, obviously the college closed. She was at home every day. All the clubs and activities stopped; everything stopped. For Maja, that was completely dreadful. It sent her into a tailspin."

DNA-CPR notices

The Committees heard that the Care Quality Commission review of the use of DNA-CPRs throughout the pandemic found that “all voluntary sector and some other stakeholders said they had either actual or anecdotal evidence of concerns about the issuing of inappropriate DNA-CPR orders”.

The report highlighted that this may have been due to “confusing guidance, pathways and protocols”. It added that while it is clear that national NHS guidance was never to apply blanket DNA-CPRs to any group, the pattern of delayed and unclear guidance to the sector created widespread confusion on their appropriate use and certainly contributed to the perception in the sector that people with learning disabilities were not being valued in the same way as the general population during the pandemic.

Steve Scown of Dimensions UK told them that his organisation had seen several DNA-CPRs placed on the records of people that the charity supports “without any consultation with their families”.

He added: "We had medical staff placing those on medical records without due process. That basically means that if the person becomes ill you do not attempt to resuscitate. The fact that they were placed on files without any meaningful conversation with families or any other professional is, frankly, disgraceful.

"We have to admit the point that people with learning disabilities are not valued as equal members of society."