Specialist advice for LTV patients in relation to Covid-19

See PPE guidance for the community below:

PPE for employed carers of children receiving LTV during Covid-19 sustained transmission

Any ventilation provided in an unsealed circuit is classed as an AGP. Masks and/or circuits in the community would have a CO2 outlet and/exhalation port which are therefore not sealed. There is no difference between wet/dry circuits.

If you are unsure about any of the masks/circuit for specific patients then please contact the respective respiratory centre. Changes to equipment are not recommended unless specifically requested by the respiratory specialist teams.

Tracheostomy ventilated patient would only be classed as having a sealed circuit if they have both in-line suction in place  and a double limb circuit. We understand that this is very rare in the home setting and therefore the majority (if not all) of these patients would also be classed as AGP.

Consider testing respiratory asymptomatic patients as risk of droplet dispersion is high and risk to staff and other patients is high if positive. PHE PPE guidance for non-aerosol generating procedures should be followed unless an Aerosol generating procedure is performed.

Aerosol generating procedures in relation to LTV are as follows:

  • Open suction
  • Tracheostomy removal or insertion
  • Single limb ventilation via tracheostomy or NIV with unfiltered exhalation port (this is the majority of LTV children in the community).
  • Tape changes.
  • Inner tube changes.
  • Cuff deflation/inflation.
  • Filter changes.
  • Circuit changes

All unnecessary personnel should leave the immediate environment during such procedures to reduce the risk and the amount of PPE used.

HMEF-bacterial-viral filter between the machine and patient

To prevent contamination of the patient gas pathway, and internal components, use separately sourced HMEF-bacterial-viral filter between the machine and patient. These filters will be place at the exhalation and inspiration ports of the device I.E. ports for breath in and out. Instructions on the method of changing these filters, as well as the frequency that change is required, should be detailed in the device’s instructions for use.

Be mindful of the increased resistance when using a HMEF as the filter could potentially cause a problems with triggering for some of the smaller babies. If the filter has a resistance of, say 2 cmH2O at 30 lpm, the ventilator needs to output 37 cmH2O to achieve a set 35 cmH2O at the patient. This will need further detailed consideration. Viral filtering filters may have much higher resistance that may be clinically relevant.

MHRA, Document RMVS001 – Rapidly Manufactured Ventilator System

Bacterial filters

Current paediatric advice is to use a filtra-guard filter and change 1-2 times a week. There is a huge stock problem of these at the moment as they are being used for unwell patients. Lane Fox unit does not use bacterial filters for patients at home on their own ventilators.

Ventilator equipment is kept in close proximity to patients, and while the ventilator itself does not come into direct or invasive contact with the patient, it will be physically connected to equipment that does. Therefore, it is important that all ventilators can be thoroughly decontaminated by health care professionals in the health care setting.

Preferably all components into direct contact with the patient’s breath will be disposable, where this is not possible the process for sterilising reusable components should be detailed in the instructions for use.

The external surfaces of the device will need to be regularly decontaminated, once every 24 hours minimum for multi day single patient use, and between each individual patient use (damp dusting). This decontamination will be carried out by a nurse or other health care professional, using either a single use disinfectant wipe or a liquid disinfectant applied with a disposable cloth. All external surfaces of the device will be cleaned, including screens, buttons and control switches. 

MHRA Document RMVS001 – Rapidly Manufactured Ventilator System

In children receiving long-term tracheostomy ventilation an individual patient risk/benefit assessment should be carried out by the tertiary respiratory team in regards to changing to a cuffed tracheostomy to reduce laryngeal flow.

For tracheostomy patients on the trilogy, the trilogy is not able to ventilate on a single limb circuit with a cuff fully inflated. So if the home ventilated tracheostomy patients are to be changed to a cuffed tracheostomy – they would still need some form of leak around the cuff. Different for an astral or a PICU vent where you could use a double limb circuit.

The advice for DGHs and community is not to change.

As stocks for circuit change is low during this time, the Network endorse a two weekly change of the circuit for tracheostomy ventilated patients. With the exception of two sets of patients: Oncology and Bronchiectasis not to be included in the 2 weekly circuit changes. Centres across the Network will review the safety for their patients.

Where equipment and skills allow to safely change to a non-vented mask this should be done but incorrectly assembled circuits can cause significant patient deterioration and so the tertiary respiratory team should be consulted. The Non Vented mask will need to have a source of exhalation to prevent carbon dioxide retention. Each centre has taken a different approach to this method and consumable availability may dictate specifics but the following options apply:

  • Devices with single limb NIV (passive expiration) must have a filtered exhalation port close to the patient and the mask must have anti-asphyxia valve.
  • Devices with double limb NIV (active expiration) usually invasive ventilators should not have an exhalation port.

For the majority of community and DGH setting the safest option is not to change the mask or circuit not to change circuit rather to use PPE for managing patients and isolate to cubicle or cohort if absolutely necessary.

Differently from advice in NHS Specialist Guide, the Network’s advice is for these to continue this at home where possible as stopping may contribute towards the risk of the child needing admission / deteriorating further.

In hospital we suggested that it should be risk assessed by the physio who could determine whether an alternative (potentially less AGP) could be used instead.

We recommend shielding for children on LTV (not CPAP for sleep apnoea). However, if unwell they should:

  1. 1.  still seek advice from their community nurses or LTV team
  2. 2.  not delay seeking review in hospital

Both community nurses and respiratory teams should be particularly mindful of those families for which have safeguarding concerns have been raised in the past and/or in which one or both parents that are self-employed/on zero hours contracts as lot of them are not eligible for the Government financial support. We recommend implementing a risk mitigation procedure directly related to safeguarding.

Please find the RCPCH advice here and the Government advice here

As clearer communication on schools reopening is released we will update this advice.

The Network endorses the Department of Health and Social Care’s Guidance for individuals in receipt of personal budgets and personal health budgets See also: Furloughed family members as Pas: If contractually allowed, your employees are permitted to work for another employer whilst you have placed them on furlough. For any employer that takes on a new employee, the new employer should ensure they complete the starter checklist form correctly. If the employee is furloughed from another employment, they should complete Statement C. More information can be found here PPE: Refer to the Network’s PPE in the community guidance Guidance Updates: Coronavirus (COVID-19): Guidance for people receiving direct payments Coronavirus (COVID-19): Financial support for education, early years and children’s social care Coronavirus Job Retention Scheme: Step by step guide for employers Coronavirus (COVID-19): Guidance for unpaid carers Coronavirus (COVID-19): SEND risk assessment guidance What parents and carers need to know about schools and education during the coronavirus outbreak

In partnership with the South Thames and North Thames Paediatric Networks, Evelina London, St George’s, King’s College, GOSH, Barts and Brompton hospitals, WellChild have put together resources for families caring for a child who requires home ventilation. Click here for information.

WellChild also put together information for families about life after the end of coronavirus restrictions. Click here for information.

Emergency Respite and Stepdown for LTV children in London and Surrey, Sussex and Kent

Hospices across London and Surrey, Sussex and Kent are committed to being part of the overall South and North Thames Paediatric Networks’ effort to deliver care and support through the COVID-19 emergency period.

  1. There are 5 children’s hospices which cover London and the South East region and are able to provide emergency step down and respite beds for LTV children, particularly to prevent breakdown of care packages.
  2. The hospices are Noah’s Ark in Barnet; Haven House in Waltham Forest; Richard House in Tower Hamlets; Shooting Star Children’s Hospices in West London and Surrey and Demelza covering South East London and Kent.
  3. All the hospices regularly have LTV children for overnight stays.
  4. All the hospices are regulated by the CQC.
  5. Richard House, Haven House and Noah’s Ark each have up to 4 beds available at any one time and Shooting Star Children’s Hospices and Demelza each have up to 9 beds available.
  6. Children being admitted to hospices for step down from hospital would need to have had a CV19 test.
  7. We have access to PPE, but may need additional stock of PPE from a hospital as part of a discharge for LTV children as they require constant aerosol generating procedures.

We work together to share our expertise, experience and resources to advance children’s hospice care across London. We look for collective solutions to the challenges we face to make our resources go further so that more children and families will receive a consistent quality of care right across London, Surrey, Sussex and Kent.

We have created a single point of access for referrals. Please send all enquiries and referrals for emergency respite or step down at any of our 5 children’s hospices to: ssch.paedltv@nhs.net

The Children’s LTV team’s education service continue to be able to provide training of a parent, carer or health care professional to facilitate the discharge of a tracheostomy long-term ventilated patient from hospital to home.

They are able to train additional carers and/or family members so that they are available to support a child who is already in the community.

 They can deliver training in the following areas:

  • Tracheostomy training including tracheostomy basic life support and ventilator training.
  • Complementing parent and carer training that has already been received. To ensure an optimal level of training is achieved we will work closely with the original trainers to ensure continuity.
  • Additionally the team can deliver training to individuals who have yet to receive any formal training and tailor it to the environment they currently work in e.g. hospices.

Due to COVID-19 external team teaching by the child’s bedside or home environment is currently inadvisable. To ensure the needs of individual patients are met, each request received will be thoroughly risk assessed. To mitigate possible risks as an option we are able to provide simulation based training and assessments. 

To get in touch contact childrensltv@rbht.nhs.uk