Updated 19 March 2021
The Coronavirus pandemic has been an incredibly worrying time for families caring for a seriously ill child.
We have pulled together some information that we hope will help you to navigate the guidance that is available and have provided answers to some specific questions that have been asked by parents caring for a seriously ill child.
As Government advice and local guidance is changing regularly at this time, we would recommend that you seek information directly from Government and local area websites:
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.
We have put together some Q&As below about the implications of Covid-19 for a child with palliative care needs.
Part of the following Q&A is a write up of a webinar session we held during the first lockdown, led by parents Jodie and Warren, whose child has very complex care needs. The questions were collected from parents who are members of our family community, and were answered by 3 paediatricians with expertise in complex and palliative care for children.
1. My child is susceptible and vulnerable to infection, should we continue to shield them?
The Department of Health and Social Care will be sending out letters to all those identified as clinically extremely vulnerable and on the shielding list during the last two weeks in March. It will inform them how from Thursday 1 April, individuals identified as clinically extremely vulnerable will no longer need to shield due to coronavirus. The letter includes updated guidance, and steps that people can take as to how to reduce risks.
Local councils and supermarkets will continue to provide support for those shielding until March 31.
If you have questions on how this change in policy may affect your child, do speak to your lead clinician or to your GP.
2. Should I or my partner be going to work and what benefits are available?
Where possible people should work from home except if they are a key worker. However, if you cannot work from home, for example if your employer can’t adjust your role to work from home, then a number of financial support options are available, including the Coronavirus Job Retention Scheme, Statutory Sick Pay (SSP) or Employment Support Allowance (ESA).
3. My child has an EHCP, how does COVID-19 affect SEND arrangements?
The Council for Disabled Children has comprehensive guidance on their website and the Department for Education (DfE) has a COVID-19 Helpline, set up to offer guidance for anyone with education related questions. Telephone: 0800 046 8687, Monday to Friday, 8am to 6pm, Saturday to Sunday, 10am to 6pm.
Vicky Ford MP, Parliamentary Under Secretary of State for Children and Families to children and young people with SEND, their families, and those who work to support them released this open letter to families on 14 Jan 2021.
4. 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 continue to run 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
5. What if I get Coronavirus?
It’s important to plan ahead for this eventuality, if you have symptoms or confirmed Covid-19 you should follow the instructions given by your GP / NHS 111 when you disclose that you are a carer for a child who has a life-limiting condition.
7. When will my child receive the vaccine?
Currently the government is not prioritising children under the age of 16, even those with an underlying health condition. The Government are working through the prioritisation list for the Joint Committee on Vaccination and Immunisation (JCVI). Read the committee’s latest advice on priority groups for the Covid-19 vaccination.
Trails testing the safety and efficacy of vaccinating children is currently underway. A decision on whether to include children on the vaccination programme will be taken in light of the data from this research.
There is an ongoing campaign being led by the charity Contact to press for children with rare conditions to be prioritised. You can support the campaign here.
8. As my child’s carer, am I included in this priority vaccine list?
The government’s vaccine committee now recommends unpaid carers who get Carer’s Allowance or who are the main carer of an elderly or disabled person (child or adult) whose welfare may be at risk if the carer falls ill should be prioritised alongside people with underlying health conditions. This means unpaid carers are now in priority group 6: (see Table 3 of the green Book).
If you are in receipt of Carer’s Allowance you can book your vaccination via this link: https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/book-coronavirus-vaccination/?fbclid=IwAR15KQOr6uE-av1UdyhdS1C0FGLU6aSXVkT10DpoWWzQEX4t0eDQYHeC-BY
If you are an unpaid carer who does not receive Carer’s Allowance you can contact your GP surgery, Contact have produced this template later which may help you to do this:https://contact.org.uk/news-and-blogs/contact-produces-template-letter-to-help-carers-struggling-to-get-the-covid-vaccine/
Palliative and end of life care
1. Will children still receive palliative care at this time?
Yes, children should still receive good quality palliative care. Your palliative care team will continue to provide clinical care and symptom management for your child and provide emotional, practical and spiritual support for you and your family. They will also continue to work with you to discuss your wishes for your child’s life and plans for end of life care where appropriate. Some plans may need to be amended in light of Coronavirus, but this should all be discussed with you in advance.
2. 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 this webpage, but please contact your local hospice or check their website for further information. Many are providing more care at home and new forms of virtual support, whilst continuing to provide emergency short breaks, symptom management and end of life care. Most, if not all, children’s hospices have suspended their in-house planned short breaks. Each hospice will be risk-assessing their provision, based on factors such as the layout of their facilities and staffing levels. Their provision is constantly being reviewed as the pandemic changes.
3. 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.
It remains uncommon for children to die from Covid, although some cases have been reported. It is currently unclear if this is a higher number than would have died from other respiratory infections. Such infections have actually reduced in the pandemic.
The government has produced guidance for those caring for people who have died of 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 being permitted in a controlled way.
The legal requirements of verifying death, getting a death certificate and registering death have not changed but the processes for achieving these may have changed slightly.
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 verifying and registering your child’s death and more about the telephone and online procedures that have 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.
As there are restrictions on the numbers of people who can attend a funeral, your extended family and friends may have to watch the ceremony remotely. It may be helpful to talk with your local teams or hospice about additional/ or alternative ways to plan your child’s funeral so that you can still celebrate their life with your friends and family.
Medical and hospital care
1. Will my child be expected to travel alone in an ambulance or be alone in hospital if they need to go?
Children should be accompanied by a parent or carer when in an ambulance or when in hospital. Most NHS Trusts will only allow one parent to be with the child throughout to reduce the risks of infection. Some trusts will ask that you take a lateral flow covid test before getting into the ambulance and you will be expected to where a mask whilst in the ambulance and when you are in hospital. If your child is over the age of 16 and has PMLD you could contact your consultant to request a letter explaining their circumstances and encouraging staff to allow a parent or carer to be with the young person throughout.
2. Should I put off routine hospital appointments/procedures for my child?
No, 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. Each hospital will have detailed plans for ensuring the risk is minimized by ensuring patients with Covid-19 symptoms are separated from those without. Some hospitals have set up dedicated helplines to answer your questions about this.
3. Does the frailty scale apply to my child?
The frailty scale published by NICE is designed for use when assessing whether elderly patients would benefit from critical care. It is not designed for use with children. Clinicians will continue to make decisions about care based on the best interests of the individual child on clinical grounds.
Talking to children about COVID-19
1. 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.
2. Are there any other sources of support or information?
We have produced a Factsheet to help families with their physical and mental Wellbeing at this difficult time.
Other children’s and mental health charities have produced information which you may find helpful, such as: