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Coronavirus: Guidance for professionals

Together for Short Lives has worked in partnership with RCPCH, The CoLab and BACD to develop some advice for dealing with Coronavirus for professionals caring for children and young people with medical complexity or a life-limiting condition

Whilst you will all be referring to official NHSE guidance that has been published, including the Standard Operating Procedure published on 26 June we thought it would be helpful to draw together key information and some practical tips for those working on the frontline with medically complex and life-limited children and their families during the Coronavirus pandemic.

This is intended to provide some useful and practical tips, resources and ideas that have been shared with us by health professionals from their experience.

For official NHSE and NICE guidance and guidance from health bodies please refer to section one below “National Guidance”. We’ve also included these links in the right-hand sidebar.

Please do share your own useful tips, ideas and resources with us so that we can update this page regularly.  Email

Share your innovations

We have launched a project to capture information about the range of new service developments and innovations that have been introduced during Covid-19 and will share these on the members' area of our website. We plan to analyse these and produce a report to share all the valuable learning. If you would like to submit information about your own service developments, use the online form.

1) National guidance

2) Impact of COVID-19 on children with underlying serious illness

Severe COVID-19 related disease is rare in young adults and extremely rare in young children. The evidence suggests that in children and young adults hospitalised with COVID-19 infection this is nearly always an incidental finding unrelated to their reason for admission. This is also true for children who may be considered more vulnerable including those with neuromuscular weakness, those on some form of long-term ventilation and those with immunosuppression for any reason. We’re hearing that children being unwell from other causes (for example sepsis, meningitis, other causes of pneumonia) are appearing to recover.

3) Supporting families

It is important to find ways of supporting families effectively during COVID-19.  For example, you could provide a simple checklist of local resources and important contacts which you fill in depending on the child’s condition and the family’s circumstances at the point of admission or discharge.  You can also signpost to a range of children’s charities which have developed useful online guidance for families, including:

4) Challenging conversations during Covid-19

Here are some resources that have been developed to help professionals to have ‘difficult’ conversations during Covid-19:

5) In hospital

Here are some tips for keeping children and young people safe in hospital:

  • Observe social distancing in hospital, for example ensuring there is separation in outpatient waiting areas.
  • Although PICU services may have moved location in some hospitals, PICU services carry on as before. The pathways into hospital and PICU are exactly as they always have been.  Carers of children and young adults should be encouraged to present to acute services in exactly the same way as always if they are concerned about their children, either via their GP or through the emergency department.
  • Hospitals have worked to ensure that beds for children who need intensive care are ringfenced and there is currently not a lack of capacity.
  • There will need to be flexibility in the event of young adults presenting to hospital with severe non COVID related disease needing intensive care admission. These young adults should be considered on a case by case basis admitting them to the paediatric intensive care unit if there was no or very limited capacity in adult ICU.

6) In the community

Community service providers should be taking steps to:

  • Ensure their list of individuals in receipt of care at home support is up to date, establish levels of informal support available to individuals, and share lists with local authorities and home care providers to ensure join-up.
  • Consider which teams need to extend operational hours, or link to other services (such as out-of-hours general practice) in order to ensure the best possible care and maintain patients in the community.
  • Explore options for alternative care models, including tele-care and ‘hub and spoke’ models to provide advice and guidance to patients and potentially their families.
  • Take stock of how to maintain viable home care provision during the outbreak of COVID-19. This includes developing joint plans with local authorities, home care and care home providers and primary care colleagues to agree how and when escalation processes can be triggered.
  • Support local authorities in planning around resilience, including plans to share resources locally in an outbreak of COVID-19. This should include workforce, including the deployment of volunteers where it is safe to do so, and where indemnity arrangements are in place.
  • Consider how voluntary groups that currently support NHS services could also support teams and specific individuals. Make the links between those voluntary groups that currently support NHS services, home care providers and local authorities. View: Public Health England: Guidance on home care provision
  • Make links with local GPs who will be needing more support in dealing with children with complex and palliative care needs.
  • Work with special schools which may be able to support care for particularly vulnerable children and families.

7) Looking after yourself

It’s really important that you look after yourselves as professionals. There are some useful tips on these websites:

8) Learning from other countries

The following is shared with permission from the International Children’s Palliative Care Network website:

There is also various guidance available to help talk to healthy children about coronavirus and this could be helpful when explaining to siblings etc. For example: from UNICEF, from Child Mind Institute, and on YouTube.