Condition Management | Covid-19

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.

By Callum Campbell · Published: April 6, 2020

Please also see RCPCH’s important statement on delayed presentations at hospital.

FAQS – Understanding COVID-19 and the risks

Guidance and information on Coronavirus, or COVID-19, the risk that it poses to children and what to watch out for.

COVID-19 is an illness that can affect the lungs and airways. The illness is caused by a virus called coronavirus

The main symptoms are fever, continuous cough, and a loss or change to your sense of taste or smell. Other symptoms may include 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. Some people will experience no symptoms at all. The vast majority of children are at very low risk of series illness as a result of Covid-19.

Elderly people and adults with underlying medical conditions such as chronic respiratory disease and cardiovascular disease are more likely to develop serious illness.

The typical symptoms of COVID 19 which require self- isolation are:

  • Temperature greater than 37.8 degrees.
  • New continuous cough
  • A loss or change to your sense of taste or smell

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.

The risk of catching COVID-19 is similar for all children. Symptoms may be more severe in a small number of children with an underlying condition.

We now know that children and young people are very unlikely to become seriously unwell if they contract COVID-19.

Currently, shielding guidance is not in place for clinically extremely vulnerable people as infection rates continue to fall nationally. This means that:

  • You should continue all prescribed medications, ventilation timings and settings and chest physio programme if you have one.
  • Carers can continue to come into your home if they have no symptoms
  • It is ok to to go outside, but you may wish to reduce your contact with other households if your child is still classed as clinically extremely vulnerable (CEV).
  • 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.

The risk of catching COVID-19 is similar for all children. Symptoms may be more severe in a small number of children with an underlying condition.

We now know that children and young people are very unlikely to become seriously unwell if they contract COVID-19.

Currently, shielding guidance is not in place for clinically extremely vulnerable people as infection rates continue to fall nationally. This means that:

  • You should continue all prescribed medications, ventilation timings and settings and chest physio programme if you have one.
  • Carers can continue to come into your home if they have no symptoms
  • It is ok to to go outside, but you may wish to reduce your contact with other households if your child is still classed as clinically extremely vulnerable (CEV).
  • If your child becomes unwell, continue to follow the escalation section of your home care plan. In addition, contact your child’s respiratory team and if you do not get an answer, call 111.
  • If you you have to go to hospital, take a bag with 1 weeks worth of consumables, particularly if you are going to your local hospital.

You should follow the current government advice, which allows for outdoor meetings of up to six people or two households. Social distancing must be maintained when meeting another household.

Although shielding advice is no longer in place for Clinically Extremely Vulnerable people, the Government advises that you should be more cautious and reduce your contact with other households. For the latest Government guidance where you are, visit our page on the topic here >> or the Government website here >>

No, the yearly flu vaccination will not prevent you from getting COVID-19.

Some people may have received a Covid-19 vaccine, which provides good protection against serious illness as a result of Covid-19. Visit our vaccines page for more information >>

FAQS – Support available

Information for parents and carers in how to protect their child and their family from Coronavirus, or COVID-19 and the practical steps they can take.

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 others· If you are inside or where social distancing is not possible outside, wear a face covering.

Please keep updated with government advice on how to protect yourself and your family during this time. Visit our page with a summary of the latest guidelines or the Government website.

Avoid contact with anyone who is showing symptoms such as a temperature, cough, or sore throat.

  • Always follow the latest Government guidance. You can check the latest restrictions on the WellChild website or the Government website.
  • Minimize your time in indoor places that are not your own home, unless it is for essential trips like collecting food, medications, or if you are a key worker going to work, or are looking after someone vulnerable.
  • There are currently no limits on exercising outside, and you can meet up with up in groups of up to six, providing you socially distance.
  • When outside, try to keep a distance of at least 2 metres away from others.
  • 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.
  • Please contact your GP, Community Paediatrician, Community Nursing Team with general queries relating to your child’s medical condition.

See also WellChild’s recent advice on what to do if your child becomes unwell, but not with COVID-19 >>

Hospitals are there to help, so if you are unwell and need treatment, hospitals have measures in place to protect their patients from catching COVID-19 whilst in hospital. Please bear in mind that hospitals across UK have been under increased pressure in the past 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.

If you do need to go to hospital, take a bag with 1 weeks’ worth of consumables, particularly if you are going to your local hospital.

 

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.

FAQS – Contingency care and overcoming care challenges

Guidance on how to cope with worrying situations such as carers getting sick, or equipment breaking down and how to overcome challenges.

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 your children’s LTV service 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.

Keep a log of the consumables you use, 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 stockpile consumables in your home either.

Follow your normal Home Care Plan advice and contact your child’s respiratory team if in doubt.

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:

Bacterial filter

Can be changed once a week, unless it looks visibly dirty or wet then please change more often.

Ventilator Tubing

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:

Bacterial Filter

Can be changed once a week, unless it looks visibly dirty or wet then please change more often.

Ventilation tubing

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.

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. Covid-19 testing is now readily availible, and can be booked via the Government website here >>

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.

FAQS – Protecting mental health

During worrying and uncertain times, what can parents do to protect their own emotional 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.

WellChild have a host of wellbeing articles on our information hub here>>

Key contacts

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.

 

 

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.

 

 

 

Please contact LTV and Respiratory CNS on 02087254216 and your community team. For urgent advice overnight contact PICU.

 

 

 

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.

 

 

 

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

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.

Contacts

Respiratory Sleep Physiologists Telephone: 0203 594 1501

Clinical Nurse Specialists Tel: 0203 5940489 Mobile: 07715 038 332 Email: Paedsleep.bartshealth@nhs.net

Patient Pathway Coordinator (Appointment Queries)

Faiza Khan: Tel: 0203 594 6441 Email: bhnt.paediatricsleepreferrals@nhs.net

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.

Additional advice

As well as WellChild's information resources, please refer to the UK Government's website for the latest advice: gov.uk/coronavirus

WellChild would like to thank the following participants in the production of the above film and information

Dr Zehan Rahim - for LTV Covid advice

Dr Zehan Rahim - Consultant in Children's Respiratory and General Medicine

Dr Simona Turcu - for LTV Covid information

Dr Simona Turcu - Consultant in Children's Respiratory and General Medicine

Dr Jane Heraghty - for LTV Covid information

Dr Jane Heraghty - Consultant in Children's Respiratory and General Medicine

Victoria Powell - for LTV Covid information

Victoria Powell - Paediatric Long Term Ventilation Clinical Nurse Specialist

Tamsyn Hernandez - for LTV Covid information

Tamsyn Hernandez - Paediatric Long Term Ventilation Clinical Nurse Specialist

Dr Amelia Carton - for LTV Covid information

Dr Amelia Carton - Clinical Psychologist

Tara Parker, Director of Programmes

familyservices@wellchild.org.uk

First published 6 April 2020

Last reviewed May 2021

This information is no longer being reviewed