The experience of shielders and why shielding needs a more personalised approach

Joe and Andrew from our policy team look at the anxieties around shielding, the lifting of lockdown, how difficult shielding has been in practice and the need for future guidance to be more personal.

During the Covid-19 pandemic, up to 2 million extremely vulnerable people have been shielding. About 40% have a lung condition including severe asthma, COPD, cystic fibrosis, bronchiectasis and ILD. Asthma UK and British Lung Foundation have provided health advice, helplines and making sure that people who are shielding are being heard at the centre of government even when they are cut off from society.

14,208 people took our Covid-19 survey – including 8,827 who are currently shielding – we have been able to share this experience with policy makers. We now look forward to a new, more personally tailored, phase of shielding where you are able to talk about your risks with a GP, specialist nurse or hospital consultant and can take decisions with then about protecting yourself and your family.

We have used the self-identified shielding group (so those people with lung conditions who said they were shielding, whether or not they got a letter from the NHS telling them to shield). We know that about half of people shielding are doing so without a letter.

Breakdown of respondents and shielding status

  All respondents Shielding Shielding with a letter Shielding without a letter
Number of respondents 14,208 8,827 4,171 4,656
Percentage of total respondents   62.1% 29.4% 32.8%

Shielders are more anxious, particularly as lockdown is lifted

Our survey asked people with lung conditions how anxious they were about coronavirus. We found that those shielding had increased anxiety levels (on a scale of 0-10, an average of 7.65) compared to those who were not shielding (7.03).  This includes nearly a quarter (21.6%) of shielders rating their anxiety level at the maximum.

This reflects the understandable anxieties for shielders – the stress of trying to follow very stringent rules and difficulties with obtaining supplies, on top of deep fear about catching coronavirus. Over half (59%) of shielders are especially worried about getting coronavirus.

In fact, shielders are even more anxious about the lifting of lockdown than they were during lockdown (see chart below comparing anxiety levels), with anxiety increasing to 7.88. Two thirds (66.8%) rated their anxiety level at either 8, 9 or 10. The idea that the rest of society is going back to some form of normal life – plus the fear of increased transmission of coronavirus – is making this period of transition even more distressing for many shielders.

Anxiety has been heightened by uncertainty about the rules

We have seen how anxiety has been ever-present in those who are shielding, exacerbated by the poor communication of the shielding criteria, late shielding letters and confusing text messages. 45.2% had to wait two weeks or longer for confirmation of their shielding status, and 12% waited more than a month putting them at risk of exposure during the coronavirus peak. Fortunately, 82.6% were shielding before they received their letter or text, having followed the advice on Asthma UK’s and BLF’s websites. We have also heard many stories from people with lung conditions who have had to chase their GP for a shielding letter.

Recently some people with lung conditions received messages that they are no longer on the shielding list (and no longer receiving food parcels), which has added to the confusion and uncertainty in the guidance. These were only supposed to be sent to people after they had had a conversation with their clinician, and following Asthma UK and BLF complaints, the government has apologised and promised to improve their systems so that no one should receive a text before they have heard from their clinician.

The recent change in the shielding rules in England, Wales and Northern Ireland not only surprised shielders but also their GPs and some NHS leaders when it was announced in the media. Despite providing greater freedoms, it has sadly added to the anxiety and confusion for many shielders. We are calling for future changes to shielding guidance to be clearer, coordinated and evidenced, and for shielders to share their lived experience of shielding.

Shielding guidance has not been practical for most people’s daily life

Our previous research found that 98% of people who received a letter advising them to shield said they followed the advice. However, adhering to all the shielding requirements is very difficult. We found that only 31.8% of respondents who said they were shielding had not been outside at all (this was slightly higher – 52% - for those who had a letter). Some have had to leave the home for healthcare or essential food and medicine when deliveries have not been available. Interestingly, over half of shielders (32% of those who had a letter) have chosen to take some exercise outside their home, so the recent change to guidance in England and Wales reflects existing behaviour for many. This is not to pass judgement on those who shield and go outside, but to recognise how difficult it has been to be confined to your home for such an extended period.

Shielders are also expected to “socially distance” from the people they live with – staying two metres apart and separating kitchen and bathroom facilities if possible – which has again proved very difficult. For those living with people who are not shielding, unsurprisingly only a third (38.6%) of shielders were able to observe social distancing within their own homes. This creates its own conflict as partners and family are then required to shield as well, or face the fear of bringing a deadly infection home to their loved one.

Shielding needs to move from a blanket to a personalised approach 

Shielding has been a traumatic but probably necessary policy that the most vulnerable have had to endure during the peak in transmission, to protect themselves and the NHS. This may have protected thousands from the worst effects of Covid-19 during the initial peak, and protected the NHS from being overwhelmed or critical care being rationed. But the practical reality of trying to observe blanket guidance, never leaving the house and staying apart from loved ones, has been stressful and impossible in practice for many. Despite this, the vast majority (77.7%) said they are willing to continue shielding because of their underlying fear about catching covid-19 and the continued high rates of transmission.

This drives home the need for the rest of society to keep transmission low so that the most vulnerable are not put at risk. But if – as Scotland and Wales have already announced – extending  shielding for longer is necessary, we would like to see people being able to assess their personal risk with the support of their GP, consultant or specialist nurse and deciding what it is safe for them to do and what they feel comfortable with. Guidance must be adapted to reflect both scientific evidence and the reality of lived experience, with shielders properly heard.

Thank you to all 14,208 respondents. Please support Asthma UK and British Lung Foundation to continue providing advice, help and a voice for the vulnerable during Covid-19

This content originally appeared on Asthma UK.