New research reveals shielding experiences of millions with arthritis

31 July 2020
Lady sat on the sofa.
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Shielding is being paused in England, Scotland and Northern Ireland tomorrow, marking a huge milestone for millions of people who have shielded throughout lockdown. But whilst the easing of lockdown was a moment of relief for most of the UK, people with arthritis have mixed feelings about the future. For Wales, people shielding will have to wait until the 16 August.

Lots of people have shared their individual experiences of shielding with us, but new research we’ve carried out gives a clearer picture of the past few months.

Our research shows that whilst 4 in 10 people with arthritis shielded during lockdown, only 1 in 4 of those people received a Government letter advising them to, meaning many made the decision to do so on their own.

The results of our survey* highlight the widespread confusion around shielding advice from the Government, which is still present now, leaving many feeling worried and anxious about their future prospects.

What has our survey revealed?

Our research shows that the UK Government’s approach to shielding was not clear and left many people feeling uncertain and confused about the steps they should be taking to manage the risk of Covid-19.

This confusion led to nearly half (47%) of people with arthritis taking matters into their own hands and making the decision to shield themselves without ever having received Government guidance, while around a quarter (28%) were advised by HCPs and 20% were advised to by friends and/or family members. 

Nearly a third (30%) of people with arthritis also said they were unclear about whether the shielding guidance even applied to them or not, and 29% had to actively search for information about shielding to know what to do.  

What’s more, over a third (34%) of people with arthritis said they don’t trust the UK Government’s advice around shielding, and 45% don’t think that the UK government’s guidance was clear. Over half (53%) also said that the differences in official advice between each nation was confusing. 

Joel and Rebecca share their shielding experiences and thoughts about the future

Joel, 35, lives in Norfolk with his wife and one-year-old son, Dylan. Joel has juvenile arthritis, ankylosing spondylitis and psoriatic arthritis.

“I was frustrated to never receive a Government shielding letter, despite my hospital informing me to shield before it was formally announced. It made getting access to help difficult. In the end, the hospital sent me a detailed guidance letter. Some people didn’t get a letter at all though – it was all pretty chaotic.

“While I appreciate what the Government has tried to do, a major problem with their approach was the vagueness of it all – it just wasn’t clear, which has unfortunately led to people interpreting the advice differently.

“Even though shielding is coming to an end, I still don’t feel comfortable going out and putting myself at risk. It’s an arbitrary date and it doesn’t change my attitude. But now that shielding is ending, employer and family attitudes are changing, and support is dwindling, which makes maintaining a shielded lifestyle impossible.

“If we don’t get proper guidance and help from the government, then our mental health, jobs and relationships will be seriously affected.”

Rebecca Wynne, 35, lives in Saffron Walden and has rheumatoid arthritis.

“I’ve had to make it up as I go along. The thing with the shielding letter is that it was completely impractical. The advice is: stay at home and stay two metres apart from people in your house. Of course, you can’t do that with children. So, we’ve had to all shield together as a family. It’s tough. There’s no acknowledgement that you might live with kids.

“I don’t really know what to think. I only know that if I am going to manage the risk for myself then I need clear knowledge and advice from the government – which I haven’t been getting so far. For example, we were told for weeks to stay in, and then out of the blue we were told it was safe for us to go out for exercise. I’m glad that we can go out because it’s so important to be active, especially with arthritis. But how can we trust the advice when it is changed so suddenly?

“Better and more frequent communication would help us feel like we’ve not been forgotten and that we’re being supported. Keeping some of the shielding support in place is important too because things like priority delivery slots from supermarkets have taken so much stress away. We can’t afford to lose this kind of support.”

Our asks to the Government

In the potential event of a second wave and further shielding needed, we’re concerned that this level of confusion, uncertainty and lack of support will be repeated, having greater impacts on peoples physical and mental health.

There’s a clear and urgent need for Government to learn from this. That’s why we’re putting forward four clear asks moving forward. We’re calling for:  

  1. Clear communication: As the shielding programme is paused, Government should work with people with arthritis who have been shielding to ensure there is clear guidance and they can make informed decisions about their life choices as the pandemic continues. 
  2. Ongoing support: Central Government should work with local Councils and the voluntary sector to ensure there is support available for people with arthritis who are vulnerable to COVID-19 as the pandemic continues, including appropriate financial support for people who cannot work from home or return to a COVID-19 safe workplace. 
  3. Better data collection: Arthritis and related conditions should be included in the development of the ‘risk stratification tool’ which will help identify those at greatest risk of COVID-19 in future. This could be supported by better data collection about the numbers of people with arthritis and other co-morbidities or risk factors.  
  4. Access to Work: The Department for Work and Pensions should undertake immediate and ongoing promotion of the ‘Access to Work’ scheme through a range of channels and at scale, to people with arthritis and related conditions and their employers, so that people can access the additional support they need to work from home or in their workplace.  

If you have been shielding...

Remember, it is your decision on how you choose to follow government guidance on shielding.

If you are still feeling worried or uncomfortable about going outside, it may help to speak to a member of your healthcare team, such as your GP or rheumatologist about your situation.

For updates on specific areas of the UK, read our dedicated resources for EnglandNorthern IrelandScotland and Wales.

We’re here whenever you need us.

If you’re feeling isolated from family and friends during these uncertain times, we’re here for you.

  • If you would like to talk to someone, you can call our free helpline on 0800 5200 520 (Monday to Friday, 9am to 8pm)
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*The stats are from our survey conducted from 2 to 8 July 2020. The sample size is 1003 people with arthritis, broadly representative of adults with arthritis in the UK, as well as a comparison group of 250 people with other long-term health conditions (but not arthritis).