Coping with changes to shielding and guidance for the clinically extremely vulnerable

Across the UK, shielding is now paused and coronavirus (COVID-19) restrictions have eased . We hope the information below will help as you and your family adjust to this changing situation.

Last updated: 26 August 2021

In March 2020, across the UK people with cystic fibrosis (CF) were advised to ‘shield’ due to the COVID-19 pandemic, and their household members were advised to follow ‘stringent social distancing’. This has been tough for many affected, and every household has faced their own individual challenges. Shielding is now paused, and restrictions have eased across the UK. As this situation continues to evolve, we have tried to provide answers to some of your frequently asked questions.

Shielding is hard – will I have to do it again in the future?

For the clinically extremely vulnerable (people who were advised to shield), although shielding is officially paused, UK governments still advise taking extra precautions to protect themselves from COVID-19. More details and links to guidance by nation can be found here..

The Government and UKCFMA advice has always been to follow the shielding guidance issued by the Government, until shielding is paused or reviewed where you live in the UK. Following shielding guidance is not straightforward for many people – you have to balance your physical and mental health needs and do what is right for you and your household.

The advice on shielding has always been guidance, designed to keep all of those thought to be clinically extremely vulnerable to the virus as safe as possible. You can decide whether your household follows the guidance, and you can decide what exactly shielding means for you. This will continue to be the case if shielding is reintroduced locally or nationally at any point. Although all adults with CF will now have been offered two doses of the COVID vaccine, the government is currently keeping the ‘shielded persons list’ in case any restrictions increase again in future.

As an adult, if you want to, you can ask to be removed from the shielding list altogether which would mean you wouldn’t receive government advice to shield again in the future. If you are thinking about doing this, it’s important that you consult with your CF team in detail. You should also consider wider factors – for example, the support you may need to ensure your workplace is risk-assessed and made ‘COVID-safe’ for you. There may be implications for your rights now or in the future if you are not ‘on the list’ so it’s worth thinking this through when making your decision.

What if I want to continue to follow shielding guidance when shielding is officially paused?

The is very much a personal decision for you and your family, and may also depend on practical things like the type of work you do. If everyone in your household can work from home, you can access online shopping, and have a support network around you if you need help, you may feel you want to carry on following the guidance to remain as safe as possible. Equally, you may be asked to return to your workplace and you may have concerns about this – we have information on your employment rights to help you make decisions about this.

What evidence is there to help me make my decisions and who can help me?

One of the key challenges for all of us is that COVID-19 is still very new, and this means there is limited knowledge available for the CF community to be able to make decisions based on scientific evidence. We are monitoring outcomes for people with cystic fibrosis who are diagnosed with the virus and update the statistics for COVID-19 in people with CF reguarly.

In making any decision about what to do, the key people who can advise you are your CF team – they will know your CF health or your child’s CF health best and can provide individual tailored advice. The Cystic Fibrosis Trust cannot give medical advice and we can’t tell you whether something is safe or not.

Making decisions about levels of risk is not new to the CF community – it’s something people with CF will have faced many times in their lives, and something parents of children with CF will have dealt with frequently. While the pandemic has been a new experience for all of us, the same skills and thought processes you have used to deal with potential risks in the past will be useful to you. You will need to think about all the pros and cons for you (and your family) and think about specific situations that you might be or might not be comfortable with. 

There is a huge amount of information online about the virus and what may or may not be safe or what risks there might be in different activities, and we know there is a lot of misinformation too. Some people find detailed research studies helpful in supporting their decisions, and some people don’t. When looking at information online, it’s important to consider whether the source/study is reliable – when we look for information online to support our work, we stick to official guidance (e.g., NHS) and look for research in well-known published journals (e.g., the British Medical Journal, The Lancet). You could discuss research you have read with your CF team

What do I do if I feel nervous about starting to go out after spending so long at home?

It’s understandable that you might feel worried about going out and resuming some normal activities, even if and when you are advised that these carry very low risk to you and/or you have been double vaccinated.

You can speak to your CF team about your concerns about risks, and you may also want to seek support from a specialist CF psychologist if you are struggling to cope with anxiety about going out. You may have stopped some of your usual exercise while at home, so you may want to speak to your CF physiotherapist about how to build your exercise back up again when you feel ready.

In our video, you can hear from two CF psychologists about managing uncertainty and assessing risk.

What about school? Are children with CF now back at school? What about children whose parents have CF?

In Autumn 2021, schools across the UK will be opening after the summer holidays and following the success of the vaccination programme, many of the previous COVID restrictions in schools have now been lifted. Children and young people with CF are now expected back at school as usual.

For some this might bring new worries, not just about COVID-19 but about the spread of other germs such as colds, coughs and flu.

We know that everyone with CF is different – if you are worried about any risks related to the school environment please do seek specialist advice from your CF team. If your child has CF, it is important to ensure they have an up to date Individual Healthcare Plan which sets out how they should be supported at school. You can find template plans on our school webpages.

What if I’m worried about the risk of going to my workplace?

We have information on your employment rights in relation to COVID-19 and you may want to seek advice from your CF team about any potential risks to you in your workplace. If you have financial worries, our helpline team can support you to look at any financial support that may be available for you. You can contact them on helpline@cysticfibrosis.org.uk or 0300 373 1000.

Coronavirus updates and FAQs

Important information for people affected by cystic fibrosis about coronavirus (COVID-19), and the latest guidance on how to stay safe.

Financial support and welfare advice

Resources and information from the Trust, as well as useful external websites and services, that can provide financial and welfare support to families living with cystic fibrosis during this time.

Mental and physical health

Helpful advice on how you can maintain your emotional and physical wellbeing through a range of activities.

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