COVID-19 LTV Advice
In partnership with the South Thames and North Thames Paediatric Networks, Evelina London, St George’s, King’s College, GOSH, Barts and Brompton hospitals, we have put together the following films, information, FAQs and contacts for families caring for a child who requires home ventilation.
Whilst the advice contained on this page has been compiled with help from London LTV centres, much of it may also be relevant to other parts of the UK.
- Understanding the risks of COVID-19
- Support available
- Contingency care and overcoming care challenges
- Protecting mental health and wellbeing
- Useful contacts
- Links to additional information and guidance
Guidance and information on Coronavirus, or COVID-19, the risk that it poses to children and what to watch out for.
What is Coronavirus or COVID-19?
COVID-19 is an illness that can affect the lungs and airways. The illness is caused by a virus called coronavirus
The symptoms are fever, continues cough, headache, body ache and gastrointestinal symptoms.
Most people infected with COVID-19 will experience mild to moderate respiratory illness and recover without requiring special treatment.
Elderly people and those with underlying medical conditions such as chronic respiratory disease and cardiovascular disease are more likely to develop serious illness.
When should I self-isolate?
The typical symptoms of COVID 19 which require self- isolation are:
- Temperature greater than 37.8 degrees.
- New continuous cough
The cough may not occur in some children, particularly with a neuromuscular condition, however changes in oxygen saturation may be a feature. Likewise change in secretions may also occur. Your child may also experience myalgia (aches and pains).
If your child has an indwelling intravenous access line (central line, portacath etc.), please be more vigilant of signs and symptoms.
If you need advice about your unwell child, call your child’s Respiratory Team and if you do not receive an answer call 111.
My child is on a ventilator, is there a higher risk of getting COVID-19?
The risk of catching COVID-19 is similar for all children; however symptoms may be more severe than in children without an underlying condition.
For children on ventilation, you should try to follow the current shielding guidance:
- Continue all prescribed medications, ventilation timings and settings and chest physio programme if you have one.
- Stay at home. Shielding measures are not appropriate for all NIV patients (e.g. children with Obstructive Sleep Apnoea on nocturnal CPAP; who only need to adhere to the same social distancing as other children).
- Carers can continue to come into your home if they have no symptoms
- It is ok to use your garden if it is only your household that uses it.
- Do not have any contact with anyone other than those in the household or carers.
- If your child becomes unwell, if you have a home escalation plan please continue to follow this. For all other children call your child’s respiratory team for guidance or 111 if you do not receive an answer.
My child uses oxygen at home, what is my risk?
The risk of getting COVID-19 is the same for all children; however symptoms may be more severe than children without any underlying condition.
Advice for children who are on oxygen is to follow the current shielding guidance:
- Continue all prescribed medications, oxygen and chest physio programme if you have one.
- Stay at home.
- Carers can continue to care in your home if they have no symptoms.
- Do not have any contact with anyone other than those in the household or carers.
- If your child becomes unwell, please continue to follow the escalation section of your home care plan. If you do feel there is no other option than coming to hospital, take a bag with 1 weeks worth of consumables, particularly if you are going to your local hospital.
- In addition, contact your child’s respiratory team and if you do not get an answer call 111
Can I take children out and in the community?
Follow government advice. It is best not leave your home for any unnecessary travel. Children on Non-invasive ventilation that are not required to “shield” can go out once a day for exercise as government advice. It is permitted to go to the park once a day for exercise provided that
you practice strict social distancing and maintain 2 meter distance between people outside of your household.
My family had flu vaccination this year. Am I protected from COVID-19?
No, the yearly flu vaccination will not prevent you from getting COVID-19
What is the best way to prevent and slow down transmission?
The best way to prevent and slow down transmission is be well informed about COVID-19 and follow government advice.
· Protect from infection by washing your hands with soap and water or sanitizer
· Not touching your face
· Practice respiratory etiquette (coughing into tissue or flexed elbow)
· Avoid crowded places
· Practice social distancing – Keep a 2 meters distance from other · https://www.gov.uk/coronavirus Please keep updated with government advice on how to protect yourself and your family during this time.
What can parents do to protect their vulnerable children?
· Avoid contact with anyone who is showing symptoms such as a temperature, cough, or sore throat.
· Do not leave your house unless it is essential as per current government advice, which includes collecting food, medications, or if you are a key worker going to work, or are looking after someone vulnerable.
· You are also allowed to leave the house once a day for solo exercise or a walk with members of your household.
· If you do go outside: keep distance of at least 2 meters away from all other people
· Make sure wash hands regularly for at least 20 seconds
· If you are a key worker and you are concerned about COVID-19 exposure in your work place, please liaise with your employer regarding this.
· Keep in close contact with your community team by phone.
· Contact your child’s social services team to enquire about help with utility bills and other extra costs.
· Currently some hospices will be considering when and if they can offer emergency respite to children who are well where families are exhausted. If your child is known to one locally, contact them and explore this. The London Respiratory Centres will highlight our most vulnerable children and families to the hospices that support our children.
· In London The Children’s LTV service will support the training of additional carers/family members if this might be a temporary solution that works for you.
· We are asking you NOT to contact your hospital for routine advice if your child is WELL as we are having an increasing number of phone calls and want to prioritise our time to those who have clinical concerns.
· Please contact your GP, Community Paediatrician, Community Nursing Team with general queries relating to your child’s medical condition.
My child is not on ventilation but usually get sick with chest infection often and is under the respiratory team – should I avoid going to hospital to reduce risk of catching COVID-19?
Also see WellChild’s recent advice on what to do if your child becomes unwell, but not with COVID-19.
Hospitals across UK will be under increased pressure in the coming months so if you can manage at home and do not need hospital treatment please make every effort to avoid going to hospital and use alternative services such as GP, Community Paediatrician, Community Nursing Team or telephone services.
However, hospitals are there to help, so if you are unwell and need hospital treatment most hospitals will be protecting their patients from catching COVID-19 whilst in hospital.
If you do feel there is no other option than coming to hospital, take a bag with 1 weeks’ worth of consumables, particularly if you are going to your local hospital.
Also see WellChild’s recent advice on what to do if you need Medical assistance that is not related to Covid-19.
What to include in your hospital bag?
If you are very worried about your child’s health, go to your local urgent care centre or to A&E. Hospitals have measures in place to help protect people from COVID-19. Make sure you prepare an admission bag for use in the event that your child needs an admission to hospital. We would recommend a 1 or 2-week supply of consumables including spare tracheostomies, ties and HME’s in addition to your usual emergency tracheostomy box. Furthermore, spare ventilation circuits, water for irrigation, swivel elbows and in circuits HMEs. If there are items listed here that you do not use or have then please do not worry. Also please include your latest LTV summary and/or escalation plan and anything that you use with your child on a regular basis that may or may not be included here. The aim is simply that we wish to ensure that your child has easy access to all of the consumables that they may need, and that the wards have ample time to place any orders for any additional specific items.
What should I do if my child’s carer can no longer look after my child because of sickness or self-isolation?
With reduced carers available, consider when your child’s needs are greatest (for example daytime versus night-time). Have a discussion with your care provider and prioritise staff to the busiest or most care-demanding part of your child’s day. Accept that new or temporary carers may not be trained in all skills e.g. trained in tracheostomy cares but not ventilation, so try to use their skills appropriately.
If you do not have symptoms and you have other family members who can support you, get in touch with your Children’s LTV service and they will provide your family member with some essential training.
For some families, having a trained parent/family member asleep next to your child with the alarms on the ventilator switched on and an oxygen saturation monitoring with an alarm attached to your child could be an acceptable option for providing care and to prevent your family from becoming exhausted. Discuss this with your community team staff when you call
them. It may be that they need to contact us to tighten alarms to improve safety in this instance. DO NOT attempt to adjust the ventilator settings without prior permission and an agreed prescription/any wish to increase settings in the community should be discussed with the LTV clinical team.
If you have symptoms and do not have other family members who can provide support, contact your community team by phone. Currently hospices are considering when and if they can offer emergency respite to children who are well where families are exhausted. If your child is known to one locally, make contact with them and explore this.
How do I get my consumables?
Keep a log of the consumables you, so that you are aware of what is missing.
Liaise with your community team to discuss your needs in case your family require a period of self-isolation.
Currently it is not possible to stockpile oxygen and suppliers will only replace empty cylinders with full.
We ask too that you don’t stock pile consumables in your home either.
Where can I reach out if my equipment is not working – I do not want to risk coming to the hospital?
Follow your normal Home care plan advice and contact your child’s respiratory team if in doubt.
How do I manage if equipment can't be delivered in time?
During the current pandemic, some equipment may take slightly longer to be delivered than normal. For that reason, we have reviewed the longevity of some equipment for both Non-invasive and Tracheostomy ventilation.
Please continue to change/clean your equipment as you have been taught. However, if a stock issue does become apparent, then equipment can be used for the stated time below if absolutely necessary.
Please ensure you give plenty of time to your community teams for reordering of equipment in the meantime and be aware that they will only be able to provide you with the usual required amount of supply.
Non Invasive ventilation equipment:
Can be changed once a week, unless it looks visibly dirty or wet then please change more often
To be washed every week in soapy water and left to dry. It is to be changed every 6 months unless the tubing becomes visibly damaged.
Humidifier water dome (not every non-invasive ventilator will have this)
Empty the water out of the chamber every morning when not in use. To be changed every 6 months. Can be washed out monthly with lemon juice or white vinegar if the chamber has a lot of lime scale.
Tracheostomy Ventilation equipment:
Can be changed once a week, unless it looks visibly dirty or wet then please change more often.
Ideally, the circuit is changed weekly, however if at any point stock becomes delayed, then the tubing can be used for up to 2 weeks. Please check the integrity of the tubing every day for any leaks, visible damage or discolouration. If the tubing is required to be used for longer than 2 weeks, then please contact your Respiratory team for discussion.
Heat Moisture exchanger
To be changed daily or more often if visibly dirty.
I am carer, if a child I am looking after has any COVID-19 symptoms would I treat them as positive until confirmed and use full Personal Protective Equipment (PPE)?
Current advice is for the family to reach out to the appropriate services as per their home care plan if their child is showing any signs of being unwell.
PPE needs fit testing to ensure that it is used correctly and you should check with the individual agencies’ overseeing the care package. Please direct individual queries to the agency or employer.
- We would encourage you to continue to visit the family home, as a front line carer, with the appropriate PPE and guidance if there are suspected COVID-19 symptoms in the household.
- Please continue to follow government advice for home carers. See advice here >>
What can parents do to protect their mental health and wellbeing?
It is a difficult time and it is important to remember that there is no right or wrong way to respond to this totally unprecedented crisis. It is important for family members to acknowledge the feelings they are having and to talk to one another. These could be feelings of anger, frustration and worry.
Given how uncertain and unpredictable these times are, it can be helpful to focus on what you can control. This could mean:
Making a timetable and flexible routine for your day that includes activities that are fun for the whole family, that promote connection with others and that give you a sense of achievement. See WellChild’s recent article about fun activities you can do in the Spring.
If you have any concerns about your child, or if your child becomes unwell you should contact your local respiratory team. If they do not respond, call 111. For emergency situations, always call 999.
If you are very worried about your child’s health, go to your local urgent care centre or to A&E. Hospitals have measures in place to help protect people from COVID-19. Make sure you prepare an admission bag for use in the event that your child needs an admission to hospital.
Here is some useful information and contacts for different respiratory teams. We will review contacts regularly and update as needed.
Evelina London patients
Please continue to contact the LTV CNS or Physio during normal working or Snow Leopard ward in the evenings, weekends and holidays if you would like clinical or technical advice.
St George’s patients
Please contact LTV and Respiratory CNS on 02087254216 and your community team. For urgent advice overnight contact PICU.
Royal Brompton patients
Please continue to contact the LTV team during normal working hours or the on-call Paediatric Respiratory SpR via switchboard out of hours if you require clinical or technical advice.
Please continue to contact the NIV and TrLTV CNS at this time, however we may be deployed to other clinical areas at any time point and the NIV service may have limited cover. If you have medical concerns and are unable to get hold of the long-term ventilation team, call 111 or 999 as appropriate.
Kings College Hospital
Please follow your child’s emergency respiratory care plan.
Contact the CNS team on 020 3299 4580 for urgent queries in office hours. Listen carefully to all voicemail guidance. This may mean contacting PICU on 020 3299 2312 for advice who can contact the respiratory consultant on call 24 hours a day.
King’s College Respiratory team
Barts Health NHS Trust
We are advising children and families to follow the government advise on isolation and protecting vulnerable members of your family. www.nhs.uk/conditions/coronavirus-covid-19
Do not come to clinic unless you are called to do so. The trust is changing most clinics to a telephone call on the day of your appointment . We will only see your child at the hospital if it is absolutely necessary.
We will let you know once clinics are back to normal.
Due to the COVID some staff may become deployed to assist in other services or may have to work from home. The service may not run as usual for some time. Things likes annual service of machines may be delayed so please bear with us. However we will try to respond and resolve your queries as soon as possible.
If your child is unwell do not wait for us to call you. Call 111 or go to A/E.
Please make sure you know what to do if your child becomes unwell. Some patients will have a ventilation summary with a plan of what to do when your child is unwell.
If you are not sure please email the team. Make sure that you have a supply of any rescue medication and a care plan if advised to do so by the respiratory team.
For NIV patients make sure that you have a spare mask and tubing. Patients with a back-up machine make sure that you use it regularly to stop the battery from dying.
If your child does become unwell and needs to come to hospital please make sure that you bring their care plan, machine, tubing, mask, humidifier and oxygen connector if you have been given one.
Please be aware if your child needs an admission you may have to transferred to another hospital due to the current situation.
Respiratory Sleep Physiologists Telephone: 0203 594 1501
Clinical Nurse Specialists Tel: 0203 5940489 Mobile: 07715 038 332 Email: Paedsleep.email@example.com
Patient Pathway Coordinator (Appointment Queries)
Faiza Khan: Tel: 0203 594 6441 Email: firstname.lastname@example.org
What to include in your hospital bag
We would recommend a 1 or 2-week supply of consumables including spare tracheostomies, ties and HME’s in addition to your usual emergency tracheostomy box. Furthermore, spare ventilation circuits, water for irrigation, swivel elbows and in circuits HMEs. If there are items listed here that you do not use or have then please do not worry. Also please include your latest LTV summary and/or escalation plan and anything that you use with your child on a regular basis that may or may not be included here. The aim is simply that we wish to ensure that your child has easy access to all of the consumables that they may need, and that the wards have ample time to place any orders for any additional specific items.