Together for Short Lives
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Coronavirus Q&A

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Updated 2 April 2020

The outbreak is a developing situation and we would recommend that you seek information directly from Government websites as the situation is changing so rapidly:

NHS England

The Department of Health in Northern Ireland, the Scottish Government and the Welsh Government have also published information.

An easy-read guide to COVID-19 is available here.

You should dial 111 to discuss particular health concerns about your child, yourself or other members of your family.

We are not a medical advice line, so for advice about your own situation and care provision, we would recommend that you contact your care team and talk it through with them.


We have provided practical answers to some of the questions that we have been asked on our Helpline.

As mentioned above, we would recommend that the first port of call should be NHS websites, dialling 111 or talking directly to your care team about your own individual case.

1. Is there specific advice for children who have serious life-limiting conditions?

Currently there is no specific government advice for children with serious health conditions. The main recommendation is to continue to follow government advice which may change on a day-to-day basis.

As with the whole population, if your child has symptoms, call 111 as soon as possible and explain your child’s underlying health condition. In an emergency situation, dial 999 immediately.

If your child has a serious underlying health condition and you have received a letter from the NHS, they are at a higher risk of severe illness as a result of COVID-19. Shielding is a practice used to protect such vulnerable people from coming into contact with COVID-19.

Regardless of whether you have received a letter from NHSE, it is strongly advised that your child stays at home at all times and avoids any face-to-face contact for a period of at least 12 weeks. Please note that the period of time you are asked to shield your child could change. You can read the full NHSE guidance on shielding here.

2. As a parent of a child with a serious illness, do I need to do anything differently?

If your child has any worrying symptoms, either with regard to their underlying condition or of COVID-19 you are encouraged to raise these with your care team without hesitation.

We recommend that everyone should follow the NHS advice on reducing the risk of picking up infections including staying at home, thoroughly washing your hands frequently and practicing good hygiene.

It is important that you continue to have routine procedures that are essential to your child’s health, for example having PEGs changed, so that your child’s illness remains well managed.

3. What should I do as a parent caring for a life-limited child if I get COVID-19?

If you think you’ve been in contact with someone with COVID-19, or if you have any non-emergency concerns about your health or those in your household call 111 as soon as possible. Tell them that you are a carer and explain your situation. For emergency situations, call 999 immediately. Discuss the situation with your care team.

4. How do I manage carers coming into my home?

Make sure you agree a plan with any carers or staff who enter your home and ensure they are strictly following the NHS guidelines and wearing PPE. Put reminder notices around the home if that helps. You can download a ‘Catch it, Bin it, Kill it’ poster from the NHS. If carers are employed through an agency, you could contact the agency to confirm their policy if you are worried.

Don’t forget to discuss a plan for what happens if you’re left without care. Involve your care agency and find out what they have in place. Your CCG or local authority should be able to tell you if they have any contingency plans such as using staff from local hospices. Do you have family members or friends who could help? Make sure that any family and friends who may visit to help with caring responsibilities also follow NHS guidelines.

5. What are my rights around work/time off and sick pay if I need to keep my child at home?

The 2020 budget announced what benefits would be available for those unable to work because of COVID-19. Their guidance states:

• Statutory Sick Pay (SSP) will now be available for eligible individuals diagnosed with COVID-19 or those who are unable to work because they are self-isolating in line with Government advice. This is in addition to the change announced by the Prime Minister that SSP will be payable from day 1 instead of day 4 for affected individuals.

• People who are advised to self-isolate for COVID-19 will soon be able to obtain an alternative to the fit note to cover this by contacting NHS 111, rather than visiting a doctor. This can be used by employees where their employers require evidence. Further details will be confirmed shortly.

6. Our child’s health makes them extremely vulnerable to COVID-19 but we didn’t receive a letter or text from the Department of Health this week. Can we be added to the list so we can ask for help if needed?

The Department of Health letter was sent to those living in England who belong to one of the defined condition groups that may make them extremely clinically vulnerable to COVID-19. If you did not receive a letter but have concerns on how your child’s condition may be impacted by COVID-19, you should speak to your clinician or GP to see if there is coordinated support for those with other serious health conditions in your area. If you require further help, do contact a mutual aid group near you.

7. Should I attend hospital or GP appointments?

It is important to continue to follow your agreed treatment plans as much as possible. Many GP surgeries, community teams, children’s hospices and palliative care teams are now offering virtual appointments. It is advised that you only attend hospital in an emergency situation. It is best to contact the hospital directly to find out about their individual procedures.

8. Will there be disruption to surgery and other procedures?

At this point in time the NHS is cancelling all elective surgery and other non-essential procedures. Clinicians will prioritise surgery or procedures that are clinically important and in the best interests of the child, in consultation with patients and families.

9. Will deliveries of medicines or other supplies be affected?

Whilst there is no need to stock-pile large quantities of medicines, it is important as ever to ensure you have adequate supplies of medicines and other consumables. The NHS Action Plan issued on 3 March says that the ‘chief focus will be to provide essential services, helping those most at risk to access the right treatment’.

10. How is COVID-19 impacting on children’s hospices?

We have been asked by NHS England to gather information from all the children’s hospices about their capacity to deal with COVID-19 and we will share the results of this survey when it has been collected. Most children’s hospices have closed their short break services and are linking with the NHS and other providers locally to enable a joined up response to COVID-19. Many are focusing on core services such as symptom management and end of life care as well as finding creative ways to provide family support virtually. We recommend that you contact your local hospice service directly to ask what their policy is.

NHS England has included hospices in their list of settings prioritised to receive essential supplies such as hand gel and other personal protective equipment (PPE) items.

11. My child has an EHCP, how does COVID-19 affect SEND arrangements?

The Council for Disabled Children has comprehensive guidance on their website including details of a dedicated Department for Education (DfE) COVID-19 Helpline, set up to offer guidance for anyone with education related questions. Vicky Ford MP, the government Minister responsible for SEND has written this open letter to families caring for children and young people with SEND and their families and the letter includes links to the most up to date Government guidance on this issue.

12. Does the frailty scale apply to my child?

NICE have published guidelines and recommend the use of a frailty scale to help clinicians decide who would most benefit from critical care. This scale is designed for use when assessing elderly patients and not for children. Clinicians continue to make decisions about care based on the best interests of the child on clinical grounds. We have asked NICE to clarify whether something specific for children with medical needs is going to be published.

13. Is my child’s ACP affected?

Do talk to your children’s palliative care team about your child’s ACP and any DNAR decisions. You may need to simplify your plans or discuss and document your wishes specifically with regard to COVID-19.

14. My child and their siblings have been asking questions about COVID-19. Is there any information that’s been written specifically for children?

The Office of the Children’s Commissioner has developed this presentation, specifically designed to answer questions that children may have.

Other useful resources have been developed by Childline and, for older young people, Young Minds.

15. We are struggling to access food delivery slots. What can we do?

To talk to someone on how you may be able to secure provisions for your household at this time, call our Helpline 10am-4pm Monday – Friday on 0808 8088 100.

16. Are there any other sources of information?

Other children’s and mental health charities have produced information which you may find helpful, such as:

Mental Health Foundation



Cystic Fibrosis Trust


Family Resources