Swedish Patient Group Shows COVID-19 Impact

“Nothing works in the present situation – it didn’t before either.” The words from one of the respondents to a recent survey into the impact of Covid-19 by the Swedish patient group, Riksförbundet Attention, representing people with neuropsychiatric disabilities like autism and ADHD.

CHALLENGING THE MYTHS

Watching the news from outside Sweden, you could get the impression that it’s pretty much business as usual, relying on the self-discipline of its citizens to self-distance. The truth of course is more complex. 

In the follow up to the survey conducted by the patient group ADHD Ireland, we look at the recent survey from the Swedish group representing families with conditions such as Autism Spectrum Disorder (ASD), Asperger’s Syndrome, Tourette’s syndrome, ADHD/ADD and language impairment.

2050 people responded to the survey, typically families, and mostly with ADHD/ADD and Autism/ASD.

Launching the survey, the patient group argued for greater support for its community:

“The results of the survey show that people who already had a hard time before the corona crisis have now got even harder. For many people, their entire lives have been affected by the current situation. Since past inadequate support from school, health care, the social services and other bodies, the corona crisis has become even more inadequate. The coronavirus has put great pressure on the various functions of society. In times of crisis, deficiencies in society become more visible and felt than usual. If nothing is done to compensate for these, the gaps can grow and inequality will be strengthened.” – Riksförbundet Attention

RAISING THE ISSUE

The survey resulted in gained wide media coverage in Sweden, and highlighted the impact on children, parents and working adults with the conditions. 

For example:

• 39% say that they have been `severely affected’ by the impact of Covid-19, and 40% `affected to some extent’
• 58% feel that their working life has been affected 
• 53% state that COVID-19 has had an impact on their mental state. – Riksförbundet Attention

BRINGING IT TO LIFE

Patient group surveys can feel a little distant and sterile, particularly when you translate them. By contrast, Riksförbundet Attention, makes strong use of quotes from families throughout. The survey report is titled around one patient quote: “The routines are broken and suddenly we are completely unsupported.”

Sections of the report are strengthened with emotive quotes like these to bring home the reality to readers:

• “All my routines are ruined which took me years to build.”
• “I have a harder time doing the basic things like waking up on time and eating”
• “Isolation leads to increased anxiety and depression” – Riksförbundet Attention

CALLING FOR ACTION

Also, where some patient group surveys can gain coverage, but then lack a real call to action, the Swedish group concludes with a clear list of recommendations including:

• “More customized information so that everyone can understand the rules and restrictions that are being introduced. People with language disorders have special needs.
• Increased opportunities for distance counselling…
• Educational support for both children and parents when teaching in the home.
• Distance education should be adapted to the child’s disability.” – Riksförbundet Attention

GATEWAY FOR HELP

Equally, the survey offers direct support to patients and carers too.

It ends by linking to the wide range of digital support resources available from the group’s website, including videos, podcasts, `digital conversation’ groups and downloadable guides.  

The site is easy to navigate, and is a masterclass in patient accessibility features including:

• Google translate embedded into the site, so that you can instantly translate any text into more than 20 languages without leaving the page
• Talking web, another Google Chrome extension which reads text aloud for you
• An option to help track text as it is read aloud by enlarging each word as it is read
• A highlight bar which you can move down the page to focus attention on small parts of the page – which could be extremely useful for an audience with attention disorders.

LEARNINGS FOR ELSEWHERE

A small aside from outside Sweden. A chart showing the conditions of the respondents shouldn’t really be very significant, and wouldn’t be in Sweden. It shows that 80% of people have, or are related to people, who have diagnoses of ADHD/ADD, and 59% have Autistic Spectrum Disorder/Asperger’s Syndrome. 

To many countries, this simple statement is very striking. Firstly, in many places, any diagnosis of any one of these conditions is extremely hard to get. Accessing a co-morbid diagnosis as seen in a large proportion of this Swedish survey cohort, can be near impossible – despite science increasingly showing the crossover between these some of these conditions. If Sweden is in a mess in addressing this mostly co-morbid community, for sure, the rest of us are in the dark ages.

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