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Long Term Ventilation (LTV) Service

Paediatric Respiratory Service

The Long Term Ventilation (LTV) Team works jointly with the paediatric Ear, Nose and Throat team, Tracheostomy Nursing team and Speech and Language Therapist to deliver a Multi-disciplinary approach to Long Term Ventilation and complex airways. They are a specialised area of the paediatric respiratory team working acutely within the hospital but also out in the community.

Urgent advice: Covid-19

In view of the escalating concerns of COVID-19 the Paediatric Long-Term Ventilation (LTV) team at Addenbrooke’s Hospital are:

  • Informing parents/guardians of the changes to our services during the COVID-19 pandemic. 
  • Providing information about shielding the child and family during the COVID-19 pandemic.

Communication with the LTV team at Addenbrooke’s 

Due to the demand on the NHS and resources we are having to change the way we communicate with our patients to ensure we can still support you during the COVID-19 pandemic.  With this mind we have made some changes to our usual methods of communication. 

Telephone contact

  • At present response to voicemail and emails may be slower.  Therefore please only leave non-urgent communication with us via the LTV email account (enter email address).  We endeavour to reply to your non urgent communication within 24 hours . 
  • If the request is urgent please follow your usual pathways of escalation of care via your local services. 

Changes to elective hospital care for the LTV patient group 

Outpatient appointments 

  • For the foreseeable future will be doing telephone consultations and where possible this will still be in a Multi Disciplinary Team (MDT) format including a LTV consultant, LTV Clinical nurse specialist, Ear Nose Throat Surgeon, ENT CNS, Speech and Language therapist, and at times Physiotherapy. 
  • The time slot you have been given for your outpatient appointment will be the same time as your telephone consultation.  Where possible please be available for the time allocated to ensure we can all review your child over the phone as a MDT. 

 Sleep Studies and elective admission for LTV

  • All elective in-patient sleep studies have been postponed until further notice. 
  • Elective admissions for children that require ventilation to be commenced are being reviewed on a patient by patient basis. If you are awaiting this type of treatment then the LTV will contact you individually to inform you of a plan. 

Escalation plans and ventilator prescriptions 

One of the LTV team will contact you regarding your child’s escalation plan and ventilation prescription.  We will ask you if it is up-to-date and if all relevant healthcare professionals have up-to-date copies (including GP, Community nurses, local hospital and care package).  

Shielding of vulnerable patients for 12 weeks advice from Government

There is new government guidance that came to effect as of March 21 2020. If your child is under the LTV team at Addenbrooke’s then it is very likely they are being classed as part of the vulnerable group. We would advise that you follow the guidance on shielding from COVID-19. If you would like to discuss this further please email the LTV team. More information can be found here.

Consumables and stock at home 

  • Please sort through and utilise all your stock at home, especially ventilation circuits. If required (in extreme circumstances) use the ventilation circuit for slightly longer than usual to ensure you have enough stock at home. 
  • Keep in close contact with your community team regarding ongoing stock needs. 
  • Contact Addenbrooke’s LTV team via email if you require a non-invasive ventilation mask to be sent out to you. All other stock should be available via community nurses. 
  • Contact BOC if you have concerns regarding your oxygen deliveries and stock. 

Cleaning of equipment

Please ensure you are cleaning masks, circuits and other equipment as per usual manufacturers’ guidance.  If you require further information regarding cleaning please highlight this when the LTV contacts you regarding escalation plans.  Alternatively contact the LTV team via email for instructions on cleaning. 

LTV children at home with care packages 

For children that have care packages, COVID-19 poses a risk for both children and adults.  The concern we have is also for the care packages staffed by adults and the parents of the children.   

The Clinical Commissioning Group (CCG) for your local area should be coming up with contingency plans if your care team staff become unwell. Keep in contact with your Community nursing team about what plans are in place. 

In the meantime we advise the following steps: 

  • Identify if there are any appropriate family members that could be upskilled or provide support to you and your family. 
  • With the possible reduction in carers, try and identify any times in your child’s 24 hour care needs that require a carer, or support from others.  If required, have a conversation with your care provider to plan for a worst case scenario and identify times in the day or night that are crucial to have staff to support you. 
  • Try and look at you child’s routine care needs and move to different times in the day so any additional carers/staff that may not know all your child’s care needs can be supported by trained members of child’s family.  Include any care needs that can be performed in the day time rather than the night time. 
  • If new staff members are called in to look after your child they might not be trained in all aspects of your child’s care needs.  Therefore, be mindful and open to what skills they can provide and what skills parents/guardians might need to provide alongside a new carer. 
  • Look after your own health needs as a parent/carer to ensure that you can provide care when needed and look at ways within your family dynamic that you may need support in order to prevent parent/carer fatigue. 

The team provide expert clinical care for paediatric patients requiring long term ventilation and complex airways (across the East Anglia region, home, hospice settings and Addenbrooke’s). The team provide education and training in Long Term Ventilation, tracheostomy and complex airway care to patients, families, carers and clinicians across the East of England.

They also work closely with health and social care providers across the region to help obtain the best possible support for children and families.