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 email@example.com
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
- NHS England and NHS Improvement – Specialty Guides
- NICE – COVID-19 rapid guideline on: Managing symptoms (including at end of life) in the community
- APPM – COVID-19 and Paediatric Palliative, End of Life and Bereavement Care (England)
- RCGP – COVID-19 (Coronavirus) Guidance
- RCPCH has excellent summary guidance with embedded links which is being reviewed daily. RCPCH members can sign up to be alerted to updates.
- RCPCH COVID 19 – Key Topics
- RCPCH COVID 19 – Guidance for paediatric services
- Hospice UK – Coronavirus 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 pneuomonia) 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:
- Together for short Lives – Coronavirus Q&A
- Council for Disabled Children – COVID-19 Support and Guidance resource
- Contact – Coronavirus: Information for families with disabled children
- Wellchild – Coronavirus information
- The Childhood Bereavement Network – useful information about supporting bereaved children in different ways and talking to them about Coronavirus
4) Challenging conversations during Covid-19
Here are some resources that have been developed to help professionals to have ‘difficult’ conversations during Covid-19:
- The Medical Mediation Foundation have developed guidance The human stuff: managing conversations with families and colleagues at a challenging time. Health professionals work under stress and have difficult conversations with patients and families all the time. Now it’s not just families and patients who are frightened and living with uncertainty. We all are. That makes the way we talk to each other more important than ever. Just because we’re living through a challenging time doesn’t mean the way we communicate has to be challenging or confrontational. For more information contact firstname.lastname@example.org
- The RCN have also developed guidelines to support nursing staff who are having to initiate challenging and courageous conversations with patients remotely.
- The Child Bereavement Network have put together some useful information about supporting grieving children 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:
- Centers for Disease Control and Prevention – Manage Anxiety and Stress
- WHO – Mental Health Considerations during COVID-19 Outbreak
- Mental Health Foundation – Looking after your mental health during the Coronavirus outbreak
- Intensive Care Society – Wellbeing Resource Library
8) Learning from other countries
The following is shared with permission from the International Children’s Palliative Care Network website:
- WHO has a webpage with updates on the disease and a short online course – Infection, Prevention and Control (IPC) for novel coronavirus (COVID-19)
- Comprehensive guidance from WHO.
- We encourage everyone to follow the WHO infection control guidance.
- WHO’s interactive map with updated data or confirmed cases and mortality rates.
- WHO’s guide on integrating palliative care and symptom relief into responses to humanitarian emergencies and crisis is a useful resource and can be found here.
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.