Since March 2020, across the UK people with cystic fibrosis (CF) have been advised to ‘shield’ due to the COVID-19 pandemic, and those living with them have been advised to follow ‘stringent social distancing’. This has been tough for many of you, and every household has faced their own individual challenges. As shielding is paused, we have tried to provide answers to some of your frequently asked questions.
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. The dates for shielding to be paused vary across the UK, and have also been affected by local lockdown restrictions. 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.
Increasingly, children and young people are being advised that they do not need to shield now, or may not need to shield again in the future. This may mean individual children are removed from the shielding list, but this will be done in consultation with your CF team and, if this applies where you live in the UK, your CF team will be in touch with you to discuss.
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 really 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.
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.
One of the key challenges for all of us is that COVID-19 is completely 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 every week.
However, the number of people with CF who have had the virus is still very low – too low for us to be able to provide data for specific groups at this stage (eg children or those with high lung function). It’s difficult to draw any conclusions about levels of risk from this data, but it does suggest that shielding has protected people with CF from catching the virus through the height of the pandemic.
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 is new to 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 – for example, you may feel safe going for a socially distanced walk with a friend and that your mental and physical health will benefit, but going to your local supermarket (when permitted) may fill you with anxiety and you might feel the worry that would come from it means it isn’t worth a trip to the shops, so you might decide to continue to rely on online shopping deliveries.
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 (eg NHS) and look for research in well-known published journals (eg the British Medical Journal, The Lancet). You could discuss research you have read with your CF team.
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. If you have been home throughout shielding, you may find some things are different to what you remember before the pandemic – queues outside shops, people wearing face-coverings, socially-distanced conversations with friends you pass in the street. It has taken time for us all to adjust to this, and you may need some time too.
You can speak to your CF team about your concerns about particular 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.
The shielding group has so far included everyone with CF, adults and children. Most parents of children with CF have told us that their families have been OK with their children being at home while schools are closed. As shielding guidance is paused, some families feel very positive about their children returning to school and others feel more anxious.
If you have any concerns about your child returning to school, You may also want to discuss with the school as they will have conducted a risk assessment and should have included children who have been shielding (and those in a household with someone who has been shielding) in this. You could ask to see a copy and also ask them to talk you through their plans to keep everyone safe – different schools are taking different approaches and all have different buildings, settings, outside space, etc.
As the pandemic changes, governments across the UK have begun to set out their plans for schools reopening. The Government in England has now published detailed guidance for schools ahead of the Autumn term. We will continue to monitor developments in the other nations.
The guidance for schools in England states that all children are expected back at school from the start of the Autumn term. Attendance will be compulsory and parents could face fines if they do not send their children to school. However, the guidance does say:
“Where a pupil is unable to attend school because they are complying with clinical and/or public health advice, we expect schools to be able to immediately offer them access to remote education.”
The guidance then specifies that if a child is unable to attend school as parents are following clinical advice, the “absence will not be penalised”. This follows updated guidance from the Royal College of Paediatrics and Child Health (RCPCH) which suggests the majority of children and young people may no longer need to shield, and this is reflected in the latest guidance from the UK CF Medical Association.
The government in Scotland has stated that as shielding will be paused on 1 August, children who have been shielding can return to school unless they have been specifically advised not to by a clinician, so do discuss any concerns you might have with your CF team.
Schools in Wales and Northern Ireland are also planning for a full return of all pupils after the summer holidays.
In all cases, you may want to discuss any concerns you have with your child’s school. For children with CF, this is likely to be a really good opportunity to check they have an up-to-date individual healthcare plan (IHP). This plan should be put together between parents, the child and the school with input from the CF team, and should be reviewed every year. We have a template you can download and complete. All pupils with medical conditions at school in England should have an IHP, and elsewhere in the UK it is considered good practice. The plan is not specific to COVID-19 but covers a wide range of topics to ensure the child is supported at school. There is a section on infection risk where you could include anything specific to COVID-19, and the school will also have produced specific risk assessments to ensure everyone is as safe as possible.
We also have comprehensive information packs for pre-school and primary school and secondary school, which include information for schools and teachers and explain more about cystic fibrosis. These are not specific to COVID-19 but could be helpful in ensuring the school have up-to-date knowledge and understanding of the condition as children return to school.
The Government guidance for schools in England is also clear that children’s mental wellbeing should be taken into account as they adjust back to going to school. We know many children who have been shielding have been understandably anxious about the virus, and it may be important to let the school know if this has been the case for your child.
We know that everyone with CF is different – if you don’t feel your child will be safe to return to school (either because they have CF, or because someone else in the household does), please do seek specialist advice from your CF team.
The new detailed guidance for schools in England also sets out the position for people who work in schools and are clinically extremely vulnerable or live with someone who is, or has been, shielding. When shielding is paused in England on 1 August, people with CF are advised to follow strict social distancing, and the guidance says that after 1 August:
“School leaders should be flexible in how those members of staff are deployed to enable them to work remotely where possible or in roles in school where it is possible to maintain social distancing. People who live with those who are clinically extremely vulnerable or clinically vulnerable can attend the workplace.”
If you have concerns about what this means for you, we are regularly updating our information on your employment rights and your CF team may be able to advise on the level of potential risk to you or your household as you return to work.
Many people with CF have shared their concerns that shielding will be or has been paused before they feel safe returning to their usual 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 firstname.lastname@example.org or 0300 373 1000.