Covid, common sense and compassion

 

Our Chief Executive, Lesslie Young, looks at the new Covid-19 restrictions. Also, how people with a learning disability, who are living and being cared for in supported accommodation have been largely forgotten during the pandemic.

Throughout the Covid-19 pandemic and accompanying restrictions, Epilepsy Scotland has undertaken surveys to gauge the nature and severity of its impacts upon our condition community.

It will come as little surprise that the greatest reported impact has been on peoples’ mental health – with two thirds of respondents stating that they have experienced increased feelings of stress, anxiety and depression.

The comments of carers have been particularly affecting, reflecting the strain of providing the best care and support they can amid reduced access to resources and often while feeling isolated from health and social care systems.

Another common thread has been sadness and frustration at the lack of contact with loved ones who have a learning disability and are living and being cared for in supported accommodation.

As a wider society, we are lamenting the recent tightening of restrictions. Yet the reality for many living in supported accommodation is that those restrictions and many others have effectively never been lifted.

Just prior to the most recent reintroduction of restrictions, campaigners and our colleagues in learning disability charities were calling for improved visiting and family contact arrangements for those in supported accommodation.

Families report that, even after shielding was paused, their loved ones have not been allowed or able to visit home as they had used to.

In addition, shopping, visiting cafes and other day to day activities, the rest of society had already begun to take for granted again, have been withheld from those with learning disability and associated conditions.

They and their families have seen what little freedom, social interaction and independence they experienced eroded. I would question the rationale on which these decisions are being based.

Learning disabled

 

Forgotten section of society

Together these individuals form a largely forgotten section of society which has not had any freedom since March.

As we hunker back down into partial-lockdown for what looks to be the long haul, the deterioration in mental health and wellbeing for those in supported accommodation is set to continue, particularly for those whose cognitive impairment means they struggle to understand why they are cut off from their families in this way.

Hard won progress, achievements and the realisation of potential not simply paused but lost.

What has also become increasingly apparent is that many care providers are interpreting Scottish Government guidance and implementing it in their own, varying, often contradictory ways.

Indeed, sometimes quite arbitrary ways, with service users unable to go into shops or cafes or to visit relatives but still able to use public transport or attend worship.

The Cabinet Secretary for Health addressed this directly last week, stating that “there is not the room for… reinterpreting guidance that is introduced and sent out by us from Public Health Scotland and is soundly based on that balance of risk between clinical judgment and the other non-health harms that can be brought about by people’s isolation.”

While this is helpful, a key ask is that care providers regard families as partners in risk assessing and implementing this guidance.

 

Balance needs to be struck

There is clearly a balance to be struck between managing Covid risks for those in supported accommodation and mitigating the very real harm posed to peoples’ mental health while they are physically isolated from their families.

As one mother recently wrote to Epilepsy Scotland: “I did ask if we could have a risk assessment done to enable closer accessibility, this was not seen as a possibility at this time… Our greatest concern for our son and all who are similar is the devastating effect it has had on his emotional health”.

As we move into the winter, outdoor visiting of those in residential care settings will become less viable, effectively rendering them prisoners to the pandemic for even longer than the rest of society.

We need to address this challenge with common sense and compassion.

To do so we need fair and consistent implementation of national guidance by care providers, including risk assessment which considers families as frontline carers, and robust testing arrangements for social care staff.

The stark reality is this group of people, members of our society, have seen virtually every single element of their lives not merely changed but stopped or withdrawn completely including contact with their families.

There is not one single interpretation of the guidelines which makes that right.

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