Updated 6 August 2020
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.
The Q&A is a write up of a webinar session we held, led by parents Jodie and Warren, whose child has very complex care needs. The questions were collected from parents who are members of our and were answered by 3 paediatricians with expertise in complex and palliative care for children.
1 What do the changes in the shielding guidance mean for families with a seriously ill child?
In England, Scotland and Northern Ireland, shielding guidance was updated on 31 July 2020 and states that shielding is not currently necessary because the rates of transmission of coronavirus (Covid-19) in the community have fallen significantly.
There is specific guidance on what will happen if there is a local lockdown in your area. This is government advice and although recommended, it’s your personal choice whether to follow it. In Wales guidance on shielding is expected to change from 16 August, to recommend that shielding for children and adults on the vulnerable list is paused unless the number of COVID-19 cases in the community starts to rise significantly.
Changes to this guidance has understandably led to a lot of confusion with families. Whilst it is important to stress that children, even those with underlying complex medical conditions, do not seem to be seriously impacted by Covid-19, it is important that you are able to trust your instincts and do what feels best for your family. It is also worth remembering that the risk of contracting Covid-19 outside is extremely low, even when briefly passing someone at less than 2 metres; this may help when balancing the advantages of fresh air and exposure to sunlight against a small risk of infection and an even smaller risk of serious illness. If you have concerns or questions about this we would advise you to get in touch with your GP or consultant for clarification and advice.
2 Should I send my other children back to school?
It is important for a child’s wellbeing to be with their friends and to play and learn, but you will need to weigh up your decision in a measured way with advice from your care team and your child’s school about the risks involved in your own situation. If you have concerns, do speak to those responsible for adhering to the national guidance at the schools concerned.
3 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
4 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.
5 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. Also think about whether 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.
Palliative and end of life care
6 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 listen carefully to families with regards to their wishes and to look at any plans already in place for end of life care. Some plans may need to be amended in light of Coronavirus, but this should all be discussed with you in advance.
7 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. 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. Some are now beginning to restart planned short breaks and open up their in-house facilities such as gardens and hydrotherapy pools in a carefully controlled way.
8 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. Remember that it is very unlikely that your child will die of Covid-19.
The government have 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 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.
Medical and hospital care
9 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. 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.
10 Should I put off routine hospital appointments/procedures for my child?
No, its 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.
11 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.
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.
Talking to children about COVID-19
13 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.
14 Are there any other sources of 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: