Calls for government action tackling healthcare inequalities faced by people with a learning disability during pandemic

A new report from Mencap reveals unacceptable healthcare inequalities and discrimination during the pandemic towards people with a learning disability.

After news last week that people with a learning disability would not be some of the first to receive the COVID-19 vaccine – despite evidence that people with a learning disability are six times more likely to die from COVID-19 – a scathing new report is highlighting just how people with a learning disability experience shockingly high levels of health inequality.

Learning disability charity, Mencap’s new report My Health, My Life documents a stream of failures to protect one of the most marginalized patient populations in the country.

INEQUALITY

“With widespread inequality as a backdrop, when the healthcare sector was hit by the COVID-19 pandemic it resulted in a range of new and worsened problems for people with a learning disability,” emphasises Edel Harris, chief executive of Mencap. 

“NHS staff have been working incredibly hard and doing everything possible to keep people safe but this is against a backdrop of inadequate and confusing guidance that has ultimately failed to protect people with a learning disability.”

FINDINGS

Key findings from the new report, released today (7 December), details the results from a survey of learning disability nurses conducted at the height of the pandemic. 

It highlights the significant obstacles people have faced to accessing healthcare. Some people were told they would be denied life-saving treatment, and others had vital support removed, while some were discharged too early from hospital.

In some instances, people with a learning disability were told that they may not receive life-saving treatment – with do not attempt cardiopulmonary resuscitation orders (DNACPRs) being placed on some people’s records during the height of the pandemic.

One learning disability nurse surveyd by Mencap in June/July 2020 commented: “DNACPRs are constantly being put in place for people with a learning disability and often inappropriately… [We] challenge them daily but still these are happening.”

Some GPs are reported to have told patients with a learning disability that they were unlikely to be offered ventilation and encouraged them to consent to DNACPRs.

Even now, Mencap is still receiving reports that DNACPRs are being placed on people’s records without their consent.

From not receiving adequate care while government guidance on visiting resulted in the removal of critical support including reasonable adjustments. 

Father of a daughter who has a learning disability, Roy added: “Our real worry and concern is that if my daughter has to be admitted to hospital for whatever cause or condition then we dread that it will be to her demise. 

“If we as parents cannot be with her and she refuses support, and we are not able to give support or encourage her, then she will die.”

TIME TO ACT

Long before COVID-19, Mencap’s Treat Me Wellcampaign – which launched in February 2018 – has aimed to transform how the NHS treats people with a learning disability. Today’s report shows that the COVID pandemic has made this even more critical.

Mencap is calling for:

  • The government to prioritise vaccination for all people with a learning disability, as people with a learning disability have died from COVID at up to 6 times the rate of the general population 
  • Clearer healthcare guidance that specifically addresses the needs of people with a learning disability
  • Reasonable adjustments to be made where possible – these can be a matter of life and death
  • DNACPRs to be reviewed and removed from the records of patients who did not give informed consent, or where proper decision making did not take place
  • An urgent review to take place into the impact of remote consultations on people with a learning disability
  • The forthcoming inquiry into the handling of the pandemic to look closely at why so many people with a learning disability lost their lives 
  • Prioritising training to ensure that all healthcare workers are confident in providing flexible, personalised care for people with a learning disability within their area of specialty. 

Edel continues: “Health inequalities can no longer be ignored. The current crisis is a wake-up call that must result in urgent system change to address the shocking levels of premature death and health inequalities that people with a learning disability continue to face. 

“And this change must start with prioritising people with a learning disability for the COVID vaccine.” 

Read the full report from Mencap here.