Covid-19: Guidance for patients

Covid-19: Guidance and frequently asked questions for patients

What is happening with the children’s sleep & ventilation service and NMD homecare service

As you may be aware, some of our routine admissions/visits have been affected by the changes that had to be made to deal with the Covid-19 pandemic. However, our teams are still here to support you and your family and we have successfully started some admissions and home sleep studies along with continued telephone contact with all our families.

Advice & support

As usual please try these numbers in the first instance although availability may vary:

Support hours:
08:30 - 17:00

Complex respiratory/NIV Clinical Nurse Specialist (Jo Gregory): 07790375338 (Mon-Fri)

NIV Physiotherapist (Ruth Wakeman): 07790 366819 (Mon, Tues, Thurs)

Neuromuscular Homecare Physiotherapist (Caroline Davies Jones): 07972527179 (Mon-Fri)

For out of hours or medical (respiratory) queries: paediatric on-call respiratory registrar: 0330128121 Bleep 1237

Equipment: please e-mail respiratory support for equipment requests (please be aware that stocks of some equipment are in demand, therefore an alternative might be sent) the team will be able to advise. Email: RSS@rbht.nhs.uk or spares@rbht.nhs.uk

Please seek urgent medical advice/review if you have concerns that your child is becoming severely unwell (e.g. via 999 or by attending children’s A&E)

Guidance about 'shielding'

We envisage most of our respiratory and NMD patients to continue their shielding as guided and follow the government advice to reducing restrictions (with care) aiming for school in September. There are several links on the government website providing up-to-date information about shielding that you can refer to during this ever-changing time but please do not hesitate to call us if you have further questions. 

Guidance about if patient becomes unwell or has symptoms of Covid-19

General guidance on managing mild Covid-19 symptoms can be found here.

If it is safe for your child to stay at home, do this and follow escalation plans e.g. use your child’s ventilator more often for rest, but do not delay seeking medical advice.

Common symptoms of Covid-19 include a temperature, new cough (possibly dry) and/or feeling more breathless and/or loss of smell and taste.

Carers coming in to the home must wear PPE (personal protective equipment, usually consisting of gloves, a mask and apron/overalls and sometimes eye protection).

If your child’s symptoms do not improve please call a member of our clinical team or the hospital's on-call respiratory registrar (senior doctor) for further advice (0330 128121 Bleep 1237).

If your child deteriorates rapidly please dial 999 and inform the operator that your child:

  • has suspected Covid-19
  • is on a ventilator
  • needs aerosol generating devices.

This will enable the paramedics caring for your child to wear appropriate PPE.

Frequently asked questions

Airway clearance routine

Equipment

Equipment if Covid-19 is suspected or confirmed

Advice on PPE for carers and safety in the home

Clinics and sleep studies

Home visits and airway clearance reviews

Returning to school/work

Airway Clearance Routine

Should I continue with my child’s routine airway clearance?

Yes. We are encouraging our patients to continue airway clearance routinely. If children develop a dry cough, we do not recommend increased treatments as this may make them more tired.  But if the cough progresses to a wet cough then we recommend you increase the sessions each day. This is part of an ‘unwell’ plan developed by your Royal Brompton physiotherapists.

Should I continue use of my child’s nebulisers?

As with any virus, there is a risk that Hypertonic Saline (HTS) nebulisers may cause airway irritation. We have consulted colleagues caring for adult Covid-19 patients and recommend that paediatric patients follow their usual care plans but closely monitor 3% or higher strength saline nebulisers. Stop immediately and seek advice from your team at Royal Brompton if there are any signs of wheeze/tightness.

Please also be aware that nebulisers generate aerosol droplets. All care staff should be in PPE whether your child has Covid-19 symptoms or not, and family members should be cautious; try keeping two metres away during nebuliser therapy (where possible) and open a window for better ventilation.

Should I give my child antibiotics?

As Covid-19 is a new virus there is no specific treatment and antibiotics won’t help, at least in the first instance. However, some of our patients may benefit from having a spare course at home. Patients should take these if they remain poorly or have a cough with green/yellow secretions (or if advised by your GP). We urge families to discuss with us if your child starts antibiotics or if you are considering starting them on antibiotics.

Equipment

Should I change my filters on my vent more frequently?

No. There is no evidence for this.

Is there a shortage of anti-bacterial filters? What should I do if I run out?

Due to the national/international demand for filters during this time, supplies are more limited.

This has led us to review our some of our practices. The anti-bacterial (yellow) filters do not need to be used with home ventilators; this is something we did historically but there is no evidence to suggest they are needed.

We do not use antibacterial filters with home ventilators that have in-built humidification and we know that you won’t come to any harm if they are removed.

Keeping a filter in over one month may increase the resistance to the ventilator circuit, affecting your child’s breathing. Therefore, if you run out, we recommend removing the last filter after a month and using your child’s ventilator without a filter.

Will this expose my child?

We would like to reassure you that taking these filters out does not put your child at a higher risk of contracting Covid-19 or any other infection. At home when your child is self ventilating, they are breathing the same air that is drawn into the ventilator from the room. Therefore, they are breathing in exactly the same air as when breathing by themselves and are not being exposed to any additional particles. Remember hand washing is key.

Please continue to replace the white internal filter every 4-6 months.

Should I change my tubing more often?

Again, there is no evidence for this. If you want to, you can sterilise it with Milton or put in the dishwasher.

Equipment if Covid-19 is suspected or confirmed

Do I need to clean or change my child’s circuits after suspected/confirmed Covid-19 or during pandemic?

It may be helpful to wipe down the ventilator daily and clean your equipment more often during and when recovering from Covid-19. We are not currently advising you to change tubing etc. however if your child is confirmed as having Covid-19 then please call us to discuss as this is an ever-changing situation.

What might happen if my child is admitted to hospital with Covid-19?

In hospitals, front line Covid-19 response and A+E staff are advised to wear PPE at all stages; use of your child’s home equipment including current circuit set up should be continued as needed.

We recommend that you take your child’s own equipment and a spare (if available) e.g. vent, vent circuit/mask/filter, cough device, tubing, filter, mask etc. along with any escalation and airway management plans you keep at home

The use of this equipment will depend on circumstances. Changing and modifying your child’s ventilator circuit without specialist guidance could be dangerous and potentially fatal. In hospital under the guidance of a medical team, the decision may be made to transfer your child on to a non-vented mask and circuit with a filtered expiratory leak. Please do not use this at home as gas exchange cannot be monitored.

Advice on PPE for carers and safety in the home

Should carers wear PPE in the home?

It is important that your carer wears the correct level of personal protective equipment (PPE) for the care that they are providing for your child.

For personal care and direct contact, this includes the following:

  • Disposable gloves
  • Disposable plastic apron
  • Fluid repellent surgical mask

Eye protection may be needed for care of some patients where there is risk of droplets or secretions from the patient’s mouth, nose, lungs or from body fluids reaching the eyes

However, if your child requires the use of a ventilator whilst having personal care or uses a ventilator all the time, the level of PPE required is different. This is because the ventilator creates a cloud of exhaust droplets (called an aerosol) which can spread the virus if the patient is shedding virus for any reason (i.e. they are contagious and can pass the virus to others).  Remember that your child may be shedding virus even if he or she has no symptoms. The level of PPE for your carer should be the following when you use a ventilator:

  • Long sleeve fluid repellent gown
  • Respirator (FFP3) mask
  • Gloves
  • Eye protection

It is the employer of the carers who is responsible for making sure they have the appropriate PPE and for arranging its disposal. They should also ensure that your carer has the necessary training to be able to apply the equipment appropriately.

If you can avoid using your child’s ventilator when your care team are with you it will make providing PPE simpler. However, if this is not possible the correct PPE needs to be worn. This may mean that your carer wears different PPE depending on whether you are using your ventilator or not. Please visit the links below for guidance (information may change under government advice):

Clinics and sleep studies

I am due to be seen in clinic/ for sleep study soon, what will happen about these appointments?

We are working as a team within the government guidelines to restart urgent hospital reviews and urgent home sleep studies (equipment is dropped to the home with videos explaining equipment set up). We are available for any advice/concerns so please do call if you wish to discuss your child.

Clinics will be done via telephone until further notice. The CNS (Jo Gregory) will call before each clinic appointment. If any airway clearance concerns are raised, a physiotherapist, usually either Caroline Davies Jones or Ruth Wakeman, will also call to discuss before clinic. The consultant or other member of the medical team will then call you around your allocated time on your allocated date – please be aware that times may vary slightly.

Home visits and airway clearance reviews

I am due to see the physiotherapist for airway clearance reviews /carer training, what will happen about these appointments?

We are in the process of setting up video calls for patient reviews and training by our clinical team members across NMD and NIV services. We also think some home visits will be necessary and are working on how this can be achieved safely for your family and our staff. We will start these as soon as we can.

Returning to school/work

I am being advised to return to work but my child is shielding. What should I do?

Government advice is that where working from home is not possible, additional precautions can be taken to reduce the risk or exposure to ‘vulnerable’ patients. You can view the government's guidance of shielding here.

Do contact us if you have any concerns about this. We can write a letter to your employer explaining the risks to your child although ultimately the decision lies with them.

When schools start to reopen for children to return what should I do as I have a child shielding at home?

Information is changing as more is learnt about Covid-19, and there may be different advice in different parts of the country. We recommend reading the government's most recent advice.

If you would like to discuss your child’s situation, please do call a member of our team.

We know the ‘vulnerable’ are your ‘everything’ and the members of our team remain available to support you and your family.

There is light at the end of the tunnel!

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