Comment

COVID-19 and learning disabilities: reach out and connect

Clear communication on safeguards is vital for vulnerable people during the pandemic

Clear communication on safeguards is vital for vulnerable people during the pandemic

Picture: iStock

COVID-19 has presented many ethically challenging and clinically contentious issues.

Over the past few months the pandemic has challenged our ways of working and how we as nurses support people with learning disabilities.

It has brought into sharp focus the need for people with learning disabilities to be recognised and consideration given to communicating clear messages about what COVID-19 means for them.

An even greater need to be inclusive, reach out and connect

People with learning disabilities already experience high levels of social isolation, deprivation and vulnerability, not to mention the health inequalities that inevitably lead to premature deaths.

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Clear communication on safeguards is vital for vulnerable people during the pandemic

Picture shows person in face mask and back to front baseball cap. Clear communication on safeguards is vital for people with learning disabilities during the COVID-19 pandemic

Picture: iStock

COVID-19 has presented many ethically challenging and clinically contentious issues.

Over the past few months the pandemic has challenged our ways of working and how we as nurses support people with learning disabilities.

It has brought into sharp focus the need for people with learning disabilities to be recognised and consideration given to communicating clear messages about what COVID-19 means for them.

An even greater need to be inclusive, reach out and connect

People with learning disabilities already experience high levels of social isolation, deprivation and vulnerability, not to mention the health inequalities that inevitably lead to premature deaths.

Services have had to change rapidly and adapt to new ways of working. With this comes an even greater need to be inclusive, reach out and connect with those who may rely on our skills, support and ability to reduce the potential for inequality and indifference.

As concerns about the pandemic increased we saw ‘othering’ about who COVID-19 would affect ‘only’ older people, the vulnerable and those with underlying health conditions.

Reinforcing that all people have equal rights to life, care and treatment and to be counted was highlighted with the publication in the early weeks of the crisis of the National Institute for Health and Care Excellence’s (NICE) COVID-19 Rapid Guideline: Critical Care.

Contained in the guidance was the Clinical Frailty Scale, which prompted concerns from families, carers, people with learning disabilities and professionals who support them that people with learning disabilities could be ruled out for escalation of care based on an inability to carry out personal care activities.

Most people with learning disabilities would be assessed at point five or more on the scale, which may be appropriate for the general population but not for those with learning disabilities.

NICE moved to clarify the guidance, updating it to say that the tool should not be used for people with learning disabilities.

If we get it right for people with learning disabilities, we get it right for everyone

The response reflecting the inappropriateness of the use of this tool for people with learning disabilities was reassuring.

However, guidance and decisions have continued to be made and clinicians, self-advocates and stakeholder groups have then unpicked and challenged, and prepared accessible information to support understanding and application to practice.

We have long sought to convey the message that if we get it right for people with learning disabilities, we get it right for everyone.

This has been highlighted by the need for clear and easy communication, which has supported people to make decisions about their health and contact with others during the pandemic. Where the messaging has been loose, unclear or open to individual interpretation it has been challenging for all members of society.

A gilded cage is still a cage for people with learning disabilities

A mother’s post on social media described the challenge for her grown-up son in understanding the need to stay at home and stay safe while neighbours continued to move freely and make their own choices about conforming to government guidance.

Equally, the feeling remains that a gilded cage is still a cage when thinking about people with learning disabilities without the capacity to make a decision to wear face coverings or masks while others were doing this all around them.

As we continue to live in a COVID-19 world we have to acknowledge and challenge the potential for people with learning disabilities to experience restrictions greater than the general population.

In supporting people to stay safe in a communal setting, we must ensure that we do this in the least restrictive way possible. We have to be inclusive, open, honest and reflective in our decision-making about this.


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