Updated statement from BSPGHAN IBD Working Group on returning to schools for patients with IBD and their siblings
The BSPGHAN IBD Working Group and the Birmingham Children’s Hospital Nutrition Team have prepared the following guidance for Health Care Professionals (posted 7th April 2020):
Our advice today when we called families of children and young people with IBD in the high risk category, (see guidance – while on steroids prednisolone equivalent to or greater than 20mg, or within 6 weeks of starting a biological therapy, or with severe active disease), was to reassure that Covid19 appears not to cause such severe disease in children and young people.
We reinforced that patients should continue their usual treatment, including infusion therapy, and to continue to contact their IBD team by phone if they have symptoms eg fever, typical features of a relapse. The team will assess each patient case by case and advise accordingly.
BSG Guidance for the Management of IBD during the Covid-19 pandemic (Posted 19th April 2020)
The British Society of Gastroenterology (BSG) COVID-19 IBD Working Group has published service provision, medical and surgical therapy, endoscopy, imaging and clinical trials. The best available data and expert opinion has generated a risk grid for adults that groups patients into highest, moderate and lowest risk categories
The tool aims to help identify and reach moderate and high-risk IBD patients. The IBD registry tool is currently restricted to those are are aged 18 years or older but they are working on extending its use to under 18s.
Patients on immunosuppression therapies sufficient to significantly increase risk of infection have been outlined in the BSG Guidance:
- BSG COVID-19 Guidance on IBD patient risk groups
- BSG/BASL COVID-19 Advice on Hepatology patient risk groups
- BSG Guidance for health professionals with IBD or liver disease
Covid-19 in Paediatric IBD- Related Publications:
Preliminary data for PIBD patients during COVID-19 outbreak are reassuring. IBD per-se does not currently seem to be a risk factor for acquiring SARS-CoV-2, nor for a more severe infection. Standard IBD treatments including biologics should continue at present
Outcomes of COVID-19 in 79 patients with IBD in Italy: an IG-IBD study (Posted 3rd May 2020)
- Active IBD, old age and comorbidities were associated with a negative COVID-19 outcome, whereas IBD treatments were not.
- Preventing acute IBD flares in patients with IBD is important.
a) 10.1% of a cohort with coronavirus–infected pneumonia presented with diarrhoea and nausea, preceding fever and respiratory symptoms by 1–2 days
b) Endoscopy – SARS-CoV-2 was detected in the oesophagus, stomach, duodenum and rectum of the two most severe patients and also in the duodenum. The implication is uncertain but raise the issue of gastrointestinal involvement and potential faeco-oral transmission,
c) Uneventful course in patients with IBD during SARS-CoV 2020 in Northern Italy – awaiting data from Espghan Porto and SECURE-IBD database.
d)The clinical importance of continued presence of RNA in the stool is uncertain and further work is required to determine risk
e) Risk of surgery during incubation period in some does start to ask the question as to whether testing prior to surgery should become routine
BSPGHAN Consensus statement on Paediatric Endoscopy Recovery and Restoration during the COVID-19 pandemic (May 10th 2020)
BSPGHAN endorses the British Society of Gastroenterology (BSG) position paper on Recommencing GI Endoscopy with some paediatric-specific amendments:
1. The risks of transmission of SARS-CoV-2 to staff (especially those handling and cleaning the scopes) as a consequence of undertaking endoscopy are still unknown. Paediatric endoscopy takes place in a high-risk area; an anaesthetic is given by general anaesthetic (GA) or by total intravenous anaesthetic (TIVA) with laryngeal mask (LMA) which are both aerosol-generating procedures. We advise that upper and lower GI endoscopy under GA or TIVA be undertaken with level 2 PPE (FFP3 masks or respirators) until risk of transmission from faeces becomes clear. The BSG guidance acknowledges that there are other circumstances to be considered when deciding on PPE and states “It is important that consideration is given to other elements of endoscopy as well as the procedure itself. These might include but not be restricted to: use of nitrous oxide, oxygen gas (Entonox), use of nasal oxygen, administration of throat spray or enemas”
2. Careful consideration needs to be given to the risk of exposing children and their families to a high-risk environment vs. the benefit of performing diagnostic endoscopy. The risk for staff also needs to be evaluated particularly in light of the evidence of increased risk amongst BAME colleagues. Chief Executive of NHSE, Sir Simon Stevens suggests that: “regarding people from BAME backgrounds … we recommend employers should risk assess staff at potentially greater risk and make more appropriate arrangements accordingly. Organisations should continue to assess staff who may be at increased risk including older colleagues, pregnant women, and those with underlying health conditions and make adjustments including working remotely or in a lower risk area”.
3. BSPGHAN supports units trying to re-establish diagnostic endoscopy for suspected new IBD presentations where possible and to continue emergency endoscopy provision.
4. Centres should adhere to the same COVID-19 screening protocols developed by their co-located adult colleagues in gastroenterology and/or the pathways developed for paediatric surgical patients undergoing urgent and elective procedures.
5. Where possible paediatric endoscopy pathway should be in COVID-19-free areas of the hospital
6. Please refer to Gov.uk guidance on PPE (Appendix 1)
JAG accreditation: Supplementary environment guidance following the COVID-19 pandemic (Posted 17th May 2020)
This guidance provides a framework to assist endoscopy services to adapt their environment following the COVID-19 pandemic. It can be used by all endoscopy services in the UK and will be referred to during accreditation assessments. Restoration of services will vary significantly and so this guidance provides practical points for consideration locally and BSPGHAN Endoscopy Working Group is working on paediatric specific support for recovery of endoscopy services
The best available information for professionals in making decisions remains with the BSPGHAN- endorsed BSG / JAG guidance:
- An Update to Information and Guidance for Endoscopy Services in the Covid-19 Pandemic (Published 15 Jan 2021)
- BSG rationale around current advice to all Endoscopy Units
Statement “Gastrointestinal endoscopy in children and COVID 19 pandemic” – ESPGHAN Endoscopy Special Interest Group Posted 30th March 2020: http://www.espghan.org/societal-papers/covid-19-informational-statements/
“..elective procedures – especially those such as upper gastrointestinal (GI) endoscopy which is an ‘aerosol-generating procedure’ (AGP) – should be put on hold at present. Equally ileocolonoscopy, given that we know now that COVID-19 can be excreted in stools. Local and physician judgment should occur when determining which patients require urgent endoscopic diagnostic testing, but these should be kept to a minimum. Obviously, life-saving endoscopy such as GI bleeding and button battery ingestion are mandatory and should not be deferred. In the event of endoscopy being required a full personal exposure protection package should be worn by those in the immediate vicinity of the endoscopy including an FPP3 mask or equivalent”
Covid-19 and Endoscopy- Related Publications:
Gastrointestinal endoscopy during COVID-19: when less is more (posted 11th May 2020)
The BSPGHAN Eosinophilic Oesophagitis Workin Group has prepared the COVID-19 consensus document for professionals:
This is based on published evidence and expert advice, government policies, and guidance from RCPCH, BSG and other BSPGHAN WGs.
We have also assisted the PPI (Eosnetwork) with an EoE and Covid-19: Patient and Carer FAQ.
Shielding and Resources:
Updated Shielding Advice 5th January 2021
As we enter the third national lockdown, with surges of cases of the new variant of Covid19 and rates of transmission high nationally, government has issued guidance on shielding for adults. https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19
Importantly, since the first wave, our knowledge of COVID-19 has grown. We now know that very few children and young people are at highest risk of severe illness due to the virus. This means that the National Guidance for children and young people issued December 21 is current at the time of writing and I hope that it is useful for you to review it here- https://www.rcpch.ac.uk/resources/covid-19-guidance-clinically-extremely-vulnerable-children-young-people
The RCPCH guidance sets out that the evidence gathered since the start of the pandemic indicates that the risk of severe disease caused by SARS-CoV-2 or Covid19 infection in children is extremely low and although no one group of conditions has been identified as being at particular risk, specialists have identified those conditions which may make the child or young person CEV as set out in group A list (see the list on the link).
These children are usually CEV under normal (non-pandemic) circumstances, and at risk of severe disease due to a variety of infections which would result in mild disease in the majority of the population.
Lists conditions that require discussion between the clinician and the child and their family/carer to establish whether they are clinically extremely vulnerable (CEV) on a case by case basis. This decision will depend on the severity of the condition and knowledge that the secondary and tertiary care clinical teams have of the particular circumstances of the child. Of note, the majority of children with conditions listed in Group B will not be CEV.
Group B Paediatric gastroenterology, hepatology and nutrition
Paediatric inflammatory bowel disease (IBD) patients who meet one or more of the following criteria:
- Commencement of biologic therapy plus immunomodulatory or systemic steroids within previous six weeks
- Moderate to severely active disease not controlled by moderate risk treatments who may require an increase in treatment
Intestinal failure patients requiring Home Parenteral Nutrition (HPN) who meet one or more of the following criteria:
- Primary immunodeficiency or immunodeficiency induced by drugs as part of their therapy.
- Other significant conditions or other organ involvement (renal, haematology, cardiac, GI, respiratory, diabetes mellitus)
Liver disease who meet one of more of the following criteria:
- Decompensated liver disease
Receiving post-transplant immunosuppression or on Liver/small bowel/multivisceral transplant waiting list
- Liver disease and other significant conditions or other organ involvement (renal, haematology, cardiac, GI, respiratory, diabetes mellitus)
- Active or frequently relapsing autoimmune liver disease where they are likely to need increase in treatment.
As far as I am aware, the guidance shared here for children has not been updated but of course it may be updated at any time. We understand that when a considerable proportion of the most vulnerable groups have been vaccinated, there is the prospect of relaxing some of the lockdown measures, but the vaccine time table according to Prof Chris Whitty reamins “realistic but not easy”.
BSPGHAN HAS BEEN WORKING WITH THE RCPCH TO UPDATE GUIDANCE REGARDING CHILDREN AND YOUNG PEOPLE WHO ARE CLINICALLY EXTREMELY VULNERABLE 1st November 2020
Clinically extremely vulnerable (CEV) children are those who are considered to be at the highest risk of severe disease due to SARS-CoV-2 infection.
Currently , the government and public health agencies have not issued guidance that people who are CEV are advised by to ‘shield’.
The evidence base around the impact of SARS-CoV-2 infection on children and young people with comorbidities has been developing over time. RCPCH is working with paediatric specialties to review this evidence and advise on which children and young people are at the highest risk of severe disease due to SARS-CoV-2 infection because they are ‘clinically extremely vulnerable’ (CEV). This includes the following:
- Research evidence summaries
- Service evaluation and audit on the care needs of children admitted to hospital (England)
- Systematic review of evidence about milder outcomes in children
- CEV children will be determined on individual basis, in discussions between the clinician, the child and their family. Of note, the majority of children shielded before, are not CEV.
CEV Young people’s transition to adult services Government advice on who is clinically extremely vulnerable is differs for adults and children. Risk of complications from SARS-CoV-2 infection is increasingly recognised as being primarily age related. As some patient’s transition, they may have new discussions with their adult clinicians around their clinical vulnerability. Paediatricians who are treating young people who are CEV and transitioning to adult care should discuss the risk of SARS-CoV-2 infection as a patient moves between services, using the specialty guidance which will be updated.
Children who are CEV to SARS-CoV-2 infection and attending school
While there may be other clinical reasons that prevent a child with underlying health conditions from attending school, while coronavirus shielding advice is paused, the small group of children who are considered to be CEV can attend school.
Governments may reintroduce shielding advice at a local or national level. If this happens, CYP who are advised to shield because they are CEV will receive a letter from the government. This may include advice not to attend school. Parents should contact their child’s specialist or GP if their child receives a letter telling them they are clinically extremely vulnerable, and they should shield that they did not expect.
Families are understandably worried. The College will continue to update current evidence on COVID-19 and children, and members are encouraged to use this when advising families.
The full guidance from the RCPCH will be released soon.
Also see https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19
Return to Hospital Schooling Published 13th July 2020
The Department for Education has published a suite of guidance relating to school opening in September. It is the intention of the department that all pupils, in all year groups, will return to school full-time from the beginning of the autumn term. From 1 June, DfE asked schools to begin welcoming back more pupils in specific year groups. Hospital schools on hospital sites were asked to work towards a phased return of more children and young people without a focus on specific year groups and informed by risk assessments. Since then, the prevalence of coronavirus (COVID-19) has decreased, the NHS Test and Trace system is up and running, and there are clear measures that need to be in place to create safer environments within schools.
Returning to school is vital for children’s education and for their wellbeing, and we therefore need to ensure all pupils can return to school sooner rather than later. This includes pupils receiving hospital education on hospital sites .As you will see from the guidance (https://www.gov.uk/government/publications/guidance-for-full-opening-special-schools-and-other-specialist-settings/guidance-for-full-opening-special-schools-and-other-specialist-settings), we are asking hospitals to work with the relevant Infection Prevention and Control team and NHS Trust to ensure that all pupils educated on hospital sites are able to return to education in September where it is safe and feasible to do so and in line with hospital IPC measures. We expect headteachers and NHS trusts to work together over the summer holidays and beyond, to enable the return of all pupils at the start of the autumn term. We would be very grateful if you could share the guidance with the relevant members of your staff teams to ensure key messages are widely distributed and to enable planning for September to commence
Update to RCPCH advice 7th June 2020– Shielding children
BSPGHAN continues to work with colleagues in the RCPCH to produce guidance on which children remain more at risk of COVID-19 related disease. It hasn’t been straightforward to produce the update with the uncertainty of what the releasing of lockdown/ school return will mean at this stage of the pandemic. Publication of the document is expected this week. The delay will allow engagement with colleagues in primary care, and more widely across the UK through the CMOs, thereby maximising the benefits of the update into a wider policy around shielding.
Resetting, restoring and recovering services 7th June 2020
The ability of PGHAN services to deliver care during the pandemic has also been tested. Now we are moving forward re-starting services. The need for ‘COVID- safe’ practice with social distancing, will be a reality for the medium to long term and challenge our ability to manage the backlog of clinics and endoscopy cases.
A robust system of documenting patients waiting, and triaging is important.
The RCPCH has set out principles for recovery here:-
- Planning children’s health services should be reset and underpinned by data and evidence so that innovation and new models of care that meet the needs of children and young people are maintained.
- Delivery of children’s health services should be restored so that all children and young people receive high-quality, safe and effective care in every setting, ensuring timely diagnosis with a particular focus on supporting community services. There should be no diminution in facilities and adherence to current standards must be maintained.
- The paediatric workforce should be recovered, bringing paediatricians back to children’s services and their training pathway, including sharing new ways of working with a focus on wellbeing.
This advice is intended to summarise the guidelines for shielding and returning to school including both patients and their siblings.
BSPGHAN has also contributed towards the RCPCH guidance for Paediatric Services. (Posted 19th April 2020).
It is also important to recognise that during this current pandemic, children who are unwell remain more likely to be unwell due to a non-COVID-19 condition than to COVID-19 itself; this includes those with the conditions described in this guidance. However, some children may remain more at risk of COVID-19 related disease, and these children should be protected as far as is possible from infection by ‘shielding’
Update posted 3rd May2020: We are taking stock while coming through a “peak ” of hospitalisations and set to enter the second phase in the NHS’s response to Covid-19.
On April 29th we heard from the NHS CE and CEO about:-
- Increased Covid-19 testing capacity – a pilot followed by roll out of regular testing to asymptomatic staff, guided by PHE and clinical advice.
- NHS to step up non-Covid19 urgent services as soon as possible with attention to infection prevention and control and start of some routine non-urgent elective care.
- Provisional plans to factor-in the availability of associated medicines, PPE, blood, consumables, equipment and other needed supplies.
- Expanded winter flu vaccination campaign alongside a school immunisation ‘catch up programme’.
Now more than ever a safety and learning culture is vital. BSPGHAN has been working with the RCPCH, PHE and NHS England this week to:-
- identify which patients should be recommended to still “shield” (or stay at home with stringent social distancing) once lockdown restrictions are lifted and
- understand more about the impact of delayed presentations to healthcare or delayed delivery of care within our speciality
- consider recovery and restoration plans of our routine activity for children and young people.
Public Health England: Advice Posted 19th April 2020: You will have seen in reports there is now a real concern at national level regarding the shortage of PPE gowns. On 17 April, Public Health England issued emergency advice on the use of gowns in clinical areas should shortages arise. It is important to emphasise that everyone should organise care to make best use of stock. The safety of teams is our priority and access to the appropriate PPE.
Public Health England Personal Protective Equipment Hub
RCPCH Shielding Advice
Home Parenteral Nutrition
Birmingham Children’s Hospital Nutritional Care Team Nurses have produced the following information letter which can be used as a reference:
Parent/ Carer Information Letter for families of children on home parenteral nutrition (Posted 7th April 2020):
Please also share this updated letter with families of children on home parenteral nutrition, which outlines plans that home care providers are putting in place and changes that families may expect:
Please be aware of the latest advice. (Posted 31st March 2020)
“Keeping yourself safe” “The government is regularly updating its guidance on at-risk groups. In light of the latest information your hospital teams now consider that patients on HPN are a high risk group, as you/your child have significant organ impairment (GI) and a central venous access device in place. This advice is endorsed by the British Society of Gastroenterology. It advises you to follow the guidance on ‘shielding’ stringently, as outlined by the government, and you are strongly advised to stay at home and avoid any face-to-face contact for at least 12 weeks in the first instance.
This can be challenging but the consensus is it is the best way to keep yourself/your child safe”.
Please see guidance from BIFA / BAPEN for HPN patients during COVID19 pandemic https://www.bapen.org.uk/about-bapen/bapen-special-interest-groups/bifa
HOMECARE (Home Parenteral nutrition) advice from 23/3/20 issued by Susan Gibert, who is leading on COVID-19 for Homecare: This has been sent to all regional homecare leads who will disseminate to the trusts.
NHSE contract – CCGs (12 week rule) (Posted 23rd March 2020): In TVW I have gained agreement that NHSE and CCGs will not be expecting the homecare activity to have been recorded within the usual time frames. It might be a good idea to do the same in your regions.
Delivery windows – relaxation of expectation (Posted 23rd March 2020)
I have agreed with NCHA members that the NHS will not be expecting homecare providers to ‘hit’ their 2 hour delivery windows. Deliveries may need to move to all day windows in the near future, and if this is necessary can we agree to be supportive please? Homecare providers and hospitals are asked to be extra vigilant with the delivery address details as patients may no longer be at their usual work or residential addresses.
Emergency deliveries (Posted 23rd March 2020)
We may reach a time where same day, next day and emergency deliveries are no longer possible. We may need to consider adjusting buffer stock in patients’ homes. At the moment, we do not have the reassurance that there is stock to do this, but it is something that we need to bear in mind for the coming weeks.
Phone Lines (Posted 23rd March 2020)
Homecare providers are experiencing high volumes of calls, this has led to longer wait times. Patients are also reporting that their hospital clinical teams are no longer manning some NHS helplines (as specialist nurses are being called to ward and other duties). Please can you ensure that you use the correct line of communication as per local agreements. If the route of contact is via your BDM, RBM etc, please can you refrain from ringing the homecare providers?
Equally if your CNS staff are being called to the front line, please can you ensure that the homecare providers have a contact number or email for an alternative contact? If in doubt, the pharmacy homecare team will be contacted for all enquiries that have not been dealt with in a timely manner. In TVW we will be ensuring that the pharmacy contacts are up to date, if you could do the same, that would be great.
Advice for Families
BSPGHAN has been working in partnership with the RCPCH on Speciality specific advice to help describe those patients who may be extremely vulnerable. This advice is being coordinated with all stakeholders including NHS, Gov.uk and charitable partners.RCPCH
Keep families well informed and signposting to regularly updated resources (eg CLDF, CCUK):
- Crohn’s and Colitis UK – FAQs for Patients with Crohn’s and Colitis
- Child’s Liver Disease Foundation – Coronavirus Updates
- EOS Network – EOE and Covid-19: Parent and Carer FAQs
CCUK Decision tree for children – isolation/social distancing and shielding: (Posted 23rd April 2020): Applicability of “shielding” is complex for children as the evidence for risk of serious illness / mortality from Covid-19 amongst children who are immune suppressed is very limited. This Decision Tree for families is welcome. crohnsandcolitis.org.uk/news/advice-for-people-with-crohns-and-colitis-self-isolation-social-distancing#child-risk If you would like to share via social media there is also a short link.
Public Health England: Post 23rd April 2020: Vulnerable children guidance: There are unintended consequence of lockdown on some vulnerable families (i.e. those known to CAMHS, social services and those with education, health and care plans.) see PHE Vulnerable children guidance. BSPGHAN is linking up with the RCPCH and the children’s team at NHS England to consider which groups should continue shielding once the lockdown restrictions are lifted.
ESPGHAN COVID-19 parental advice guide.
This short guide provides information and guidance for parents on gut, liver and nutritional conditions in children during the COVID-19 pandemic. Please find the parental advice by clicking here.
Guidance for Trainees
Impact of pandemic on Training (7th June 2020 update)
Training have been disrupted with a loss of the usual learning opportunities, particularly where endoscopy procedures and clinics have not taken place.
As clinical services begin to be restored, the urgency to deliver on the backlog of elective care, and the need to limit face-to-face clinics will continue to compromise training opportunities.
BSPGHAN Trainees have found ways to interact and learn with weekly Zoom teaching to make up for lack of opportunities to meet the curricular requirements in the expected way.
BSPGHAN will support these sessions and endorse these as we hear that for around 50% of trainees, formal weekly teaching has not been restored.
Trainees have been advised by CSACthat changes have been made to ARCP outcomes; see https://www.copmed.org.uk/publications/covid-20 to enable as many doctors in training as possible to progress. PGHAN supervisors are asked to focus on delivering high quality supervision and teaching with clear plans to address the shortfall in experience that has resulted from the loss of training opportunities during the pandemic.
Exciting plans to support national teaching by Zoom for BSPGHAN trainee members from trainers, starting on 22nd April 2020 live from Birmingham. A national virtual meeting of interest to members may follow.
Please visit the Zoom Education Series page for details of upcoming sessions.
Treatments and Immunosuppression
Covid-19 Rapid Guideline: Children and Young People who are Immunocompromised– published May 1st 2020
This guideline is designed to be used alongside our professional guidance. It aims to maximise the safety of children, protect staff from infection and enable services to make best use of resources during the pandemic. It can be updated as necessary.
European Medicines Agency
Press releases related to COVID-19: (posted 2nd April 2020) which includes information to patients and healthcare professionals.
- Treatments and vaccines against COVID-19 under development
- Chloroquine and hydroxychloroquine only to be used in clinical trials or emergency use programmes
Please check EMA’s dedicated webpage on COVID-19 for the latest updates.
Letter from Lorenzo d’Antiga, Italy “Coronaviruses and immunosuppressed patients” (Posted 30th March 2020): https://aasldpubs.onlinelibrary.wiley.com/doi/pdf/10.1002/lt.25756
Preliminary experience so far show that children under 12 years of age do not develop coronavirus pneumonia regardless of their immune status although they get infected and can spread the infection. Immune suppressed patients are not at risk for severe pulmonary disease compared with the general population.
Paediatric Multisystem Inflammatory Syndrome Temporally Associated with Covid-19
Please see the RCPCH Guidance on this emerging phenomenon.
Most children are asymptomatic or exhibit mild symptoms from COVID-19 infection. However in the last two months a small number of children have been identified who develop a significant systemic inflammatory response which may be associated with COVID-19.
Children’s Liver Disease Foundation:
Crohn’s and Colitis UK:
BSPGHAN Survey Feedback
Survey Feedback: Thank you very much for your responses; the majority within the first few hours. It’s a helpful snapshot of views while planning recovery, restoration of paused services and supporting families as the lock down eases.
1) Covid-19 and paediatric IBD
Please report cases of Covid-19 in children with paediatric IBD to the ESPGHAN Porto group using the link below:
2) Covid-19 and Eosinophilic Oesophagitis/ Eosinophilic GI Disease
Please report cases of Covid-19 in children with Eosinophilic Oesophagitis/ Eosinophilic GI Disease to this study run by Schneider’s Children Medical Center using the link below: