Together for Short Lives
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Coronavirus Q&A

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Updated 22 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. Call 999 for an ambulance if you have serious concerns about your child.

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.

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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?

If your child has a serious underlying health condition, they are likely to be at a higher risk of severe illness as a result of COVID-19. It is strongly advised that your child stays at home at all times for a period of at least 12 weeks. This practice, called shielding, can help to protect vulnerable people from coming into contact with COVID-19.

You may have received a letter from NHSE stating that your child is vulnerable and that you should practice shielding, but you may wish to do this whether or not you have received a letter from NHSE (see also Q7). 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.

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.

You may find the below ‘Covid-19 and your child with palliative care needs’ Q&A useful. The Q&A is led by parents Jodie and Warren whose child has very complex care needs. The questions were collected from our Family Support Facebook Group.

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. Can I use my direct payment to buy PPE for PAs I employ?

If your existing direct payment includes funding to purchase PPE for your PA, you should continue to use that funding to purchase PPE.

If you, or your PA, cannot obtain PPE in this way, or your direct payment is not set up to fund PPE, you should ask for assistance from the LA or CCG that provides your direct payment who should help you to get the PPE you require.

If the LA/CCG does not have stock, then they should contact the Supply Distribution Service (supplydisruptionservice@nhsbsa.nhs.uk) on behalf of the individual employer/PA.

6. 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 or have symptoms can obtain an alternative to the fit note (Isolation Note) to cover this by visiting NHS 111 online, rather than visiting a doctor. This can be used by employees where their employers require evidence.

7. 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.

8. 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. General advice is that you should only attend hospital in an emergency situation, but you know your child best and if you are concerned about them don’t delay in seeking help. It is best to contact the hospital directly to find out about their individual procedures. You might find this general information helpful about who to contact and when.

9. 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.

10. 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’.

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

We have provided details of many of the children’s hospice policies on COVID-19 on our website page here. We have also 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, but we understand that there are currently still issues with supply.

12. 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.

13. 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 asked NICE to clarify whether something specific for children with medical needs is going to be published and their reply is provided below:

Our COVID-19 rapid guideline: critical care in adults [NG159] makes recommendations only in relation to adults.

Since publishing the guideline we have updated recommendation 1.1 to advise that the Clinical Frailty Score (CFS) should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism. We have also changed the title of the guideline to clarify that it only applies to adults.

We have not been asked to develop a COVID-19 rapid guideline on paediatric critical care at this time. In the absence of guidance from NICE, healthcare professionals would be expected to exercise their clinical judgment, guided by critical care and other relevant specialists, in line with relevant local and national guidance and policy, and in discussion with the patient, their families and carers.

14. 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.

15. 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.

16. We are struggling to access supplies. What can we do?

In response to families’ requests for help with getting access to some vital services and supplies, Wellchild have set up a special resource helpline which can help with:

· Access to food delivery service

· Prescription collection

· Delivery of Personal Protective Equipment for your care team (including handwash, alcohol gel, gloves, aprons, surgical masks and eye protection)

· Scrub style uniforms for care staff

17. 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

Wellchild

CLICSargent

Cystic Fibrosis Trust

18. What will happen if my child dies of COVID-19?

We know how important it is for you to know that your child is cared for kindly and with care and dignity after their death just as they were during their life.

The government have produced guidance for those caring for people after they have died if they have had COVID-19. This focuses on trying to reduce the risk of further infection, so it is probable that those involved will be wearing protective clothing such as disposable gloves and aprons and a mask. Importantly, the care of your child will continue – with viewing, washing and other procedures being permitted when undertaken by trained professionals.

The professionals caring for your child at the time of their death and immediately after this are the best people to talk to about what will happen as they will know who is going to be looking after your child and where your child will be cared for. There may be local arrangements – for example funeral directors in some areas are working together on a rota basis, but the care team you already know will be able to tell you more about this. They will also be able to tell you about the arrangements for collecting the necessary paperwork to register your child’s death and more about the telephone registration procedure that has been brought into use at this time.

If your child dies in a hospice you may have already had conversations about how they would care for your child, again it would be useful to ask if the current arrangements are different.

Family Resources