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 (which should be published on either on 23 or 24 April) and NHSE and NHS Improvement guidance for different specialties including palliative care, we thought it would be helpful to draw together some practical tips for those working on the frontline with medically complex and life-limited children and their families during the Coronavirus pandemic.
This resource is intended to provide some useful and practical tips, resources and ideas that have been shared with us by health professionals from their experience. We’ll be updating this resource over the coming weeks.
For official NHSE and NICE guidance and guidance from health bodies please refer to section one below “Overall Guidance”. We’ve also included these in the right-hand sidebar.
We have divided the information into seven sections:
- Overall guidance
- Community and primary care
- Hospice care
- Palliative and end of life care
- Tips for supporting families
- Looking after yourself
Please do share your own useful tips, ideas and resources with us so that we can update this document regularly. Email email@example.com
1. Overall guidance
Key guidance for professionals
1.1 Guidance from NHSE, NICE and other health bodies
NHS England and NHS Improvement – Specialty Guides
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
1.2 Planning continuity of care
- Collate a list of patients and make sure a pool of colleagues know their clinical details.
- Ensure plans are in place for medications and consumables for the next two to three months.
- Update symptom management plans/dystonia escalation plans/Advance Care Plans etc
- Reassure families that we are doing these things and ensure they have clear lines of contact with you.
1.3 Using telehealth
Consider how you can use telephone-based or digital/video-based approaches to provide consultations and advice for families. For non-clinical staff, consider how they can continue to contribute remotely. Microsoft Teams, Zoom, WhatsApp or Facebook Live can all work well. Further guidance will be made available by NHSE
MyQuality website: This been developed specifically to meet the needs of families of children with life-limiting conditions, to allow for remote monitoring of symptoms or other family priorities for care. It is free to use, both for patients and health and social care professionals, and is data is patient/family-led. If you want your patients to use it then register on there as a professional, send them the website address and invite them to register as a patient, identify and monitor the issues relevant to them, and share their data with you. Access My Quality website
Do get in touch if you need further info: firstname.lastname@example.org
1.4 Personal Protective Equipment
Guidance about the risks posed by the coronavirus was circulated to NHS employers on 18/3/2020.
It advises NHS trusts to put measures in place so they are fully prepared. The guidance states that Personal Protective Equipment (PPE) is now in adequate national supply and says to call or email if you experience problems:
0800 915 9964
0191 283 6543
Email for supplies: email@example.com
1.5 Top Tips for managing conversations at a challenging time
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.
Download the Top Tips to keep talking like human beings when the going gets tough. The human stuff: managing conversations with families and colleagues at a challenging time.
For more information contact firstname.lastname@example.org
Guidance for professionals working in hospital and palliative care services.
2.1 Enabling children and young people to get out of hospital
You may need to think about how to enable medically well long-stay patients to get out of hospital with a ‘managed risk’ rather than a perfect housing/care/OT solution. Consider whether any independent or voluntary sector services in your area might be able to help, such as hospices.
2.2 Working in PICU - updates and current capacity
Here are some reassurances for our work with children and young people with life-limiting or complex conditions that we have received from a paediatric intensive care consultant on three counts:
- 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.
- 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. There is a national discussion about ways to ring fence and protect beds for children who need intensive care should the pandemic become overwhelming in hospitals with co-located services, but at the moment there is NOT a lack of capacity. 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.
- 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.
2.3 Increasing workforce capacity in hospital
Consider having a rota of community/disability paediatricians who can provide a rapid response to try to prevent children with medical complexity/life-limiting conditions from being admitted and to support rapid discharge planning if they are in hospital.
3. Community and primary care
Guidance for professionals working in primary care and the community
3.1 What should community paediatrics and CCN teams be doing?
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
- Observe social distancing in hospital, for example ensuring there is separation in outpatient waiting areas.
3.2 Supporting GPs
Make links with local GPs who will be needing more support in dealing with children with complex and palliative care needs.
3.3 Special schools
Special schools are endeavouring to remain open including over the Easter holidays and may be able to support care for particularly vulnerable children and families.
4. Hospice care
Guidance for professional working in children’s and adult hospice services.
4.1 Impact on children's hospices
Together for Short Lives is collating information from children’s hospices about their services during Coronavirus. They are being advised to restrict visitors and put planned short breaks on hold.
View our family page FAQs on Coronavirus and links to the latest information about children’s hospice and palliative care services across the UK.
To update or add your link email: email@example.com
4.2 Hospice support for families at home.
Together for Short Lives is working with Demelza children’s hospices to set up a new online Community of Practice for those in family support roles in children’s hospices to enable them to share tips and resources on supporting families isolated at home.
If you would like to share your practice email: firstname.lastname@example.org
4.3 Impact on adult hospices
Hospice UK has produced guidance and are running a weekly ‘Echo’ session 15.30 – 17.00 on Wednesdays, as well as signposting to resources. Although not a specific paediatric focus, there will be valuable overlap for children’s hospice and community services.
Reuse of Medicines Scheme in hospice and care home settings
NHS England have published new guidance of running a medicines re-use scheme in a care home or hospice setting during the Coronavirus crisis. In response to additional demand for end of life medicines, a guie to medicines reuse for care homes and hospices has been developed which will help to ensure people get the medicines they require in their hour of need. The new guidance, published by DHSC on 28 April, supports care home and hospice providers and offers a framework to run a safe and effective medicines reuse scheme that is in the best interest of patients.
You can access the new guidance here.
5. Palliative and end of life care
Key information about symptom control and end of life care.
5.1 Best use of the children’s palliative care workforce
Workforce and resource planning for symptom management and end of life care should be incorporated into overarching Coronavirus plans in all localities.
Paediatric medical and nursing staff need to be identified to take a lead on providing symptom management and end of life care for children with underlying health conditions. Redeployment of these staff to provide acute technological care must be a last resort.
5.2 ACP and DNAR during the Coronavirus pandemic
The DNAR decision should be part of overall advance care planning discussions between parents or carers, professionals and where appropriate children or young people themselves, with the aim of identifying the child or young person’s future needs and considering how they may best be met.
Advance care planning may include discussions around withholding or withdrawing life sustaining treatment. These will be based on the child’s quality of life, best interests, the likely nature of future deterioration in the child’s condition and whether such deterioration is likely to be reversible. However, the most important outcome of discussions is to put in place a plan for appropriate management of the child’s condition in the event of sudden or unexpected deterioration in their condition.
There is a helpful joint statement from RCGP, BMA, CQC and others stating the importance of considering individual circumstances when advance care planning and NOT applying DNACPR in a blanket way to groups of people. Download here
5.3 Guidance on providing symptom control and end of life care
You might find it helpful to look at resources that have been developed such as the APPM Formulary, the Basic Symptom Control Manual and the Guide to End of Life Care by Together for Short Lives.
There is also some guidance that was developed to prepare for providing symptom management and end of life care for children during the 2009 flu pandemic. Although not all relevant to the current Coronavirus pandemic, many of the messages remain valid.
5.4 Providing palliative care in a humanitarian crisis
There are two chapters of the field manual for palliative care in humanitarian crises aimed at non-palliative care professionals. These two chapters have been made freely available by Oxford University Press.
Oxford medicine online: A Field Manual for Palliative Care in Humanitarian Crises
Oxford medicine online: Care of the dying patient
6. Supporting families
Useful documents for sharing with families caring for seriously ill children.
6.1 Providing information for families
Think about providing 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.
Many children’s charities have developed useful online guidance for families, including Together for Short Lives.
Council for Disabled Children has published COVID-19 Support and Guidance resource
Contact has published: Coronavirus: Information for families with disabled children
The information from WellChild is also recommended. They have produced tips for families on ways to keep a child with complex needs safe and on managing carers in the home.
WellChild – guidance for parents and carers
WellChild – ways to keep my child safe
WellChild – rules for managing carers in the home
The Childhood Bereavement Network have collated lots of useful information about supporting bereaved children in different ways and talking to them about Coronavirus.
6.2 Supporting the mental health and wellbeing of children and young people and their families
There are various charities producing resources and holding sessions to support the wellbeing of children, young people and families.
Watch this space for more information and links.
6.3 Learning from other countries
6.4 WHO guidance
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 WHO guidance can be found here
- WHO infection control guidance can be found here and we encourage everyone to follow this guidance.
- WHO’s interactive map with updated data or confirmed cases and mortality rates, can be found here.
- 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, on YouTube.
7. Looking after yourself
Looking after your wellbeing and mental health
7.1 Looking after your own mental health and wellbeing
It’s really important that you look after yourselves as health professionals. There are some useful tips on these websites.
Centers for Diseases – Control and Prevention: Manage Anxiety and Stress
Mental Health Foundation: Looking after your mental health during the Coronavirus outbreak
Intensive Care Society: Wellbeing Resource Library.