Covid-19 FAQs – What does the new CCLG guidance mean for me and my family?

The Children's Cancer and Leukaemia Group (CCLG) updated its Covid-19 guidance for children and young people undergoing cancer treatment on 22 May 2020.

Young Lives vs Cancer and CCLG work closely together to make sure you get the best all-round support both clinically and socially. We’ve put together some FAQs to help you consider what this updated guidance may mean for you and your family.

Who is the updated CCLG guidance for?

CCLG’s updated guidance is for children aged 0-19th birthday. For the latest shielding advice for young people aged over 18 please look at Blood Cancer UK’s guidance if you have a blood cancer, or Macmillan Cancer Support’s guidance  if you have a solid tumour.

Why has CCLG’s guidance on who is ‘extremely vulnerable’ and who is ‘vulnerable’ changed?

The CCLG’s guidance has changed to reflect growing evidence about how covid-19 affects children and young people with cancer.

In the early stages of the Coronavirus pandemic we shielded people who we thought would have severe problems if they got the virus. 

Since then, countries have published data on how Covid-19 affects children with cancer. There is now enough evidence to have re-assessed who is at a higher risk of severe illness from covid-19 and who would be likely to have a mild illness if they caught it. This means some children who were previously shielded can move out of the extremely vulnerable group and instead practice social distancing.

We can now work on getting the balance right between the risk of severe Covid infection and the risk of long-term isolation. This can have a negative effect on mental health, physical health, and children’s social and learning development. 

Young Lives vs Cancer welcomes the news that fewer children need shielding. We understand the negative impact isolation has had on many of the families we support. But we appreciate this may be a big step and not everyone may feel comfortable returning to work or school just yet.   

If you have any questions please get in contact with your clinical cancer team to discuss your next steps. Then talk your thoughts and feelings through with your social care team. They can help you plan how best to handle things for your family. 

What does the data tell us?

Alongside their updated guidance, CCLG has published UK data. This provides new evidence on the levels of risk of children with cancer getting severe covid-19 infections. We know that we cannot cut out all risk, but the risk is much lower than first expected. This infographic from the UK Paediatric Oncology Coronavirus Monitoring Project helps explain this. 

What age group does this updated guidance apply to? 

The CCLG guidance is for children and young people aged 0-19th birthday. The UK government has recently relaxed the shielding advice for vulnerable people aged over 18. If your child is over 18 have a read of our guidance for young adults.  

My child is on maintenance treatment for ALL. Last week our consultant confirmed that she should not attend school. Does the guidance mean we don’t have to shield now? 

Most children on ALL maintenance treatment are no longer considered to be extremely vulnerable’. This means they could consider returning to school if they attended before the pandemic lockdown. 

Your child’s clinical cancer team will give you advice specific to your situation. Particularly if you think there are reasons why this might not be the right thing for your child Your clinical team may update their advice following publication of the new guidance, so if you’re unsure it’s best to check with them. 

The guidance keeps children on induction therapy for leukaemia in the extremely vulnerable group.  My child has finished induction but is not yet on the maintenance phase, they still have intensification blacks to go. What does the guidance mean for us? 

CCLG is planning to review the wording of the guidance to make this bit clearer, but induction does just refer to the very start of treatment. By the time you get to intensification blocks you should be moved back to the vulnerable group and be able to stop shielding. Your local clinical cancer team will provide individual information for your child.  

Is it safe to take my child outside now? 

If your child remains in the ‘extremely vulnerable’ group you should continue to shield them. If your child has moved into the ‘vulnerable’ group they can now go outside. You should follow the government guidance for the whole population about staying alert and safe. Check with your child’s clinical team if you’re at all unsure which group they fall into.

If your child has moved into the vulnerable group it may take you some time to adjust to the new guidance. Start off by taking a walk outside, while practising social distancing. Families can then take a staged approach to easing shielding restrictions. You can work you way up to taking part in other activities, in line with government guidelines. Mum Gabby has put together some top tips to help build your confidence. 

I want to continue to shield my child

You may not feel comfortable lifting restrictions completely and may want to continue shielding for longer If this goes on for a while, it’s important to get help to manage your anxiety. Talk to your clinical team, specialist nurses, Young Lives vs Cancer Social Worker or other healthcare providers for support. 

Does my child need to wear a face covering 

A face covering won’t protect you or your child from getting coronavirus. But it may provide some protection for others you come into close contact with if you have symptoms but aren’t displaying them yet. If your child is under two, or will struggle to manage a face mask, they shouldn’t wear them.

In England, Scotland and Northern Ireland the government recommends wearing a face covering in enclosed spaces where social distancing is not possible, including shops. From 15th June it will be mandatory to wear a face covering on public transport in England. 

Wales currently doesn’t recommend public use of non-clinical face coverings. You can choose to wear one if you want though. 

CCLG has more information about face coverings in their updated guidance.

I’m separated / divorced from my child’s other parent. Does the new guidance mean we can now move our child between homes?

If your child is still on the ‘extremely vulnerable’ list you should continue to shield them in one household. If your child has moved to the ‘vulnerable’ list it’s a case of assessing the risk of moving them between households. This is particularly important if one parent works in a profession where they’re likely to come into contact with people who have covid-19.

If your child no longer needs to shield and neither parent is working in a high-risk job then you could start co-parenting again to help manage work and childcare. But in line with government guidelines, any visits to or childcare provided by the parent the child has not been shielding with should take place outside with strict social distancing in place. For this reason we don’t recommend overnight stays or weekend swaps at this stage.

We understand that this is tricky. You might want to talk to your child’s clinical cancer team or social worker before making any changes. They will be able to help you work out the best thing to do for you and your family.

I’ve been asked by my employer to go back to work but I have no childcare /schools aren’t open. If my child is no longer classed as extremely vulnerable what does this mean for us?  

The first thing to do is to talk to your employer about your circumstances and why your child can’t be cared for by any other family members. Your social worker may be able to help with these negotiations. 

Secondly, talk to your local cancer team. The updated guidance may mean that you have fewer restrictions than before. You may be able to negotiate part-time work for a period of time, alongside some carefully managed childcare.  

Your employer must be able to reassure you that you are able to socially distance in the work place. They should also provide the right PPE if that is necessary for your job 

When it comes to childcare, consider the following 

  • If you have a partner in the same household, can you organise part-time working between the pair of you to cover childcare?  
  • If your child has a parent / carer living at another address are they able to support some childcare?  

The government guidance allows for such arrangements. It includes information on visits from essential carers and advice on living with other people, though there may not be a ‘perfect’ answer.   

The NSPCC has helpful guidance on childcare if you do not live with your child’s other parent. 

What are my rights at work?

If negotiating with your employer has failed, and they’re adamant you return to work, there are options available to you. You could ask to take annual leave, unpaid leave, parental leave or time off for dependants – or a combination of these. You can read more about this on the Citizens Advice website.

If your employer insists you return to work or face redundancy or dismissal, you could seek specialist advice from Young Lives vs Cancer’s Welfare Advice Service Or you may have a workplace union to refer to or local Citizens Advice. 

To find out if you’re entitled to any benefits and financial assistance, have a look at our coronavirus welfare advice page.

I’ve been told I need a sick note to claim statutory sick pay if our child is shielding, but only my partners name is on the vulnerability letter 

Having a child diagnosed with cancer can cause both parents extreme distress from diagnosis. Both of you may feel the need to take sick leave to help you cope. Under normal circumstances you would talk this through with your family GP to organise a sick note. The Coronavirus pandemic does not change this 

You can also show your GP the CCLG guidance which advises not going to work if you are shielding an extremely vulnerable child. If your child is no longer classed as extremely vulnerable you will need to return to work, unless you have other reasons for needing sick leave. 

I’m worried I’ll be putting my child at risk if I go back to work / my other children go back to school  

The recent changes to government guidelines mean that some parents may be asked to return to work and some children to return to school. This depends on the nature of your work and which school year your child is in. You can view the guidance by clicking on the following links: 

Children and young people classified ‘extremely vulnerable’ should not go to school and neither should their siblings. Those who have now shifted to the ‘vulnerable’ category can go to school, and their siblings can also. The school should assure you they have measures in place to manage social distancing.   

The government has improved its guidance on social distancing for young people. It covers returning to school for young people who are not extremely vulnerable.  

We understand it may be a big step emotionally to go straight from shielding to going to school.  So take things slowly at first, and build up the confidence to send your child back. You could begin with a daily walk together with just members of your household. Have a look at mum Gabby’s top tips for going out during lockdown.  

Check in with your child’s cancer team

With any guidance there is a balance between what is right for the majority of people and what may not be specific enough for individual children. So, as well as considering what feels right for your family, your child’s ability to follow instructions at school and the helpfulness of your child’s school, you should also check-in with your local cancer team. They will be able to talk to you about the individual risks for your child, to help you make a decision on when to stop shielding, if you no longer have to, and return to school.

National differences in guidance

National guidance on social distancing and going to school differs slightly across England, Scotland, Northern Ireland and Wales. If you are in any doubt you should check with your child’s cancer team.

I’m worried that if we stop shielding, I might be more at risk. If I come down with covid-19 how will I look after my children 

When the pandemic first started there was concern that children would be ‘super-spreaders’ of the virus. As each country has gathered more information about how Coronavirus spreads this does not seem to be the case. Enabling children to go to school, as long as social distancing can be maintained, is not thought to increase the risk of adult infections.  The British Medical Journal has published an article about this.

Even so, it doesn’t mean there is no risk. People who get Covid–19 have had a range of symptoms from mild to very severe.  So it’s important to make a plan of who could look after your child / children safely if you feel unwell or have to go into hospital

If you live in a two parent / carer household then the unwell parent should try to self-isolate as much as possible within the house. The the other parent / carer should look after the children. The government has guidance on this.

Here are some tips for being as safe as possible.    

Should I tell my child the plan for what happens if I become ill with covid-19?

It’s important to be honest with your children. They may not appreciate the full impact of coronavirus, but chances are they will have picked up that it can be very serious. Explain the situation to them and allow them time to ask questions. Not talking to your children may leave things to their imagination which can be worse than the reality. This is especially important if they’re returning to school.  

If you need some help with talking to your children check out this helpful article.

What should I do if I develop coronavirus symptoms?

If you develop coronavirus symptoms or test positive for covid-19, it’s important to notify your child’s cancer team. This will help your child’s team organise the care they need as safely as possible. Contact your social worker at the earliest opportunity. They will help you think through your personal situation and think about your support network.

In this situation you or your relatives may have to break the contact advice. You may need to move your children out to another home, or allow another family member to move into your home. The second option is preferable as it minimises the potential spread of Covid-19.

This may be difficult to think about. But planning ahead will be easier than trying to do it when you are feeling unwell.

Making a will

It can be distressing to think about what would happen to your children in the event of your death.  This is obviously more at the forefront of many parents’ minds at the current time.  Making a will is a sensible thing for any parent to do, regardless of coronavirus. The likelihood is it won’t be needed now, but it might give you peace of mind. 

My child is frightened of going to hospital now, after seeing everything on the news. How safe is it? 

It’s really important to encourage your child to talk about what they are thinking and feeling. Young children (and older ones too!) can be encouraged to explain this more if you talk about it through play or by drawing pictures about hospital. Getting them talking may help you understand what their fears are. 

CCLG Guidelines include information about attending hospital including isolation rooms, staff PPE and, other patients with covid-19. Everyone in hospitals is doing everything possible to prevent the spread of infection in hospitals. You will see how your local hospital is managing this when you arrive. 
Play Specialists are still working. It’s fine to ask for their support if your child is particularly worked up about Coronavirus or seeing staff in PPE. Many children are used to super-heroes wearing face masks. So it may help to find a super-hero they identify with, and remind them they are normal under their super-hero mask

It may also help to talk to other families on the Young Lives vs Cancer’s Parents and Carers Facebook group  about how their child coped.  

If my child is no longer on the ‘extremely vulnerable list, does that mean we won’t be able to get priority shopping slots?  

The updated CCLG guidance is encouraging for families who may be able to ease shielding. But the government guidelines on shielding have not yet changed. This means the majority of young people and families Young Lives vs Cancer supports will continue to fall under the general UK shielding list. Support to access food and medicine will remain the same until the end of July.

Young Lives vs Cancer Social Workers are able to refer people in England to the NHS Volunteer Responders Service for help with shopping, getting essential items and collecting prescriptions.

For more information visit read our Food and shopping FAQs.