For many the nightmare of Long Covid is something they live with every day.

Despite the World Health Organisation declaring the COVID-19 pandemic over in May last year, coronavirus has far from disappeared. In fact, for many the nightmare of Long Covid is something they live with every day.

Chest Heart & Stroke Scotland (CHSS) recently published its Long Covid Cornerstone report, shining a light on the experiences of thousands of Scots who are living with the condition.

This report was based on our 1 in 5 survey of almost 2000 people who live with chest, heart and stroke conditions and Long Covid.  What we heard from all respondents is that they need more quality social, emotional and rehabilitation support to better recover and help them live their lives to the full.  This is especially true for the 180,000 people in Scotland living with Long Covid*.

People with Long Covid rated both their physical health and mental health lower than those living with heart conditions, people with lung conditions and stroke survivors. These results show that poor access to rehabilitation services, including access to financial support and advice, and the resulting impact on mental health were significant challenges that people have to face.

Our report revealed that:

  • 40% of people living with Long Covid were unable to work at all due to their condition
  • 72% of people with Long Covid said there was support they needed but weren’t able to access
  •  82% encountered some kind of difficulty in accessing services, with some struggling to access any medical support
  • 38% said their doctor wasn’t able to provide guidance on available support

Our 1 in 5 survey also found that people who had accessed CHSS support rated both their health and mental wellbeing higher than those who had not used CHSS services.

Crawford Flint, 59, lives in Linlithgow, West Lothian, with his wife, Karen, has been living with the symptoms of Long Covid since contracting COVID-19 in March 2020.  He has been supported by Chest, Heart & Stroke Scotland. 

Speaking about his experience he said: “The CHSS support group has been great. You’ve got folks from Shetland to Dumfries, and what’s noticeable is that you see the difference in the quality of care between different health boards and even different towns.

“It’s a lottery and it shouldn’t be. We’ve got 14 health boards and 14 different versions of Long Covid. GPs are often sending patients on a wild goose chase as there is so little understanding of this illness.

“There should be one person in charge for the whole of Scotland and everyone else feeds from that. There’s no treatment for Long Covid, but there’s also not enough information at all about the condition.”

So what needs to change to make a positive impact for people with Long Covid?

The Scottish Government’s £10 million Long Covid Support Fund comes to an end this year, with no current plans for it to be extended.

That’s not good enough. We need urgent action to provide funding and support for people living with this debilitating condition, providing access to benefits and support, particularly for the estimated 72,000 who are unable to work due to the condition.

We need the Scottish Government to consider greater financial support for people living with the condition who are navigating this economic crisis, providing clarity around access and eligibility for benefits. 

We are calling for the Scottish Government and NHS Scotland to improve care pathways for Long Covid, offering a coordinated, multi-disciplinary service across all health boards. Improved coordination with third sector organisations should also be a priority. Organisations like CHSS are on hand to provide community healthcare support services and ease the pressure on the NHS at such a challenging time.

It is so important to listen to the voices of people with Long Covid because they’re telling us what it’s like on the ground for them. By listening to them we can deliver excellent services that can help people get back into work and live their lives fully.

People with Long Covid can’t wait any longer. 

Jane-Claire Judson is chief executive of Scottish health charity Chest, Heart & Stroke Scotland.  If you or someone you know is looking for advice and support on living with Long Covid, contact our Advice Line on 0808 801 0899 or at adviceline@chss.org.uk.

* ONS states that since 2020, over 180,000 people in Scotland have developed Long Covid

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