Updated 11 June 2021
The Coronavirus pandemic has been an incredibly worrying time for families caring for a seriously ill child.
Over the past year we pulled together information to help families navigate Government guidance as it was published by Government. As Government advice and local guidance is changing regularly at this time, we would recommend that you continue to 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.
1. My child is susceptible and vulnerable to infection, should we continue to shield them?
From Thursday 1 April 2021, individuals identified as clinically extremely vulnerable no longer needed to shield due to coronavirus. The Department of Health and Social Care has produced guidance for this group, and steps that people can take as to how to reduce risks.
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. 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.
3. 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.
Meanwhile, the NHS has worked with some disease specific charities to produce tailored guidance and advice for different health conditions.
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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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: