President Report 9th November:  BSPGHAN COVID-19 – guidance on clinically extremely vulnerable children and young people

President Report 9th November: BSPGHAN COVID-19 – guidance on clinically extremely vulnerable children and young people

COVID-19 – guidance on clinically extremely vulnerable children and young people

More evidence has emerged that shows there is a very low risk of children becoming very unwell from COVID-19, even for children with existing health conditions. Most children originally identified as clinically extremely vulnerable no longer need to follow this advice.

The RCPCH has been reviewing the evidence base around the impact of Covid-19 or SARS-CoV-2 infection on children and young people with comorbidities which has been developing over time.  They have worked 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 Covid-19 infection because they are ‘clinically extremely vulnerable’ (CEV). 

Those children whose doctors have confirmed they are still clinically extremely vulnerable are advised not to attend school while this advice is in place. Children who live with someone who is clinically extremely vulnerable, but who are not clinically extremely vulnerable themselves, should still attend school in accordance with the general advice and regulations set out in the national restrictions guidance from 5 November.

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

https://www.rcpch.ac.uk/resources/covid-19-guidance-clinically-extremely-vulnerable-children-young-people

BSPGHAN advises that the vast majority of children and young people that we care for are not considered clinically extremely vulnerable either because of their condition or therapies, and can go to school during this lockdown. Children who are usually CEV under normal (non-pandemic) circumstances should not attend school and these families will be contacted by their specialist team. Families should continue to follow the Government advice on national restrictions. 

  1. Children on Home parenteral nutrition (HPN) are not considered clinically extremely vulnerable either because of their primary condition or therapies.

In exceptional circumstances some patients on HPN, because of other coexisting factors may fall into the clinically vulnerable group and would be notified by their specialist teams.

Children who meet one or more of the following criteria may be discussed on an individual basis, but the majority will not be CEV:

  • Primary immunodeficiency or immunodeficiency induced by drugs as part of their therapy.
  • Other significant conditions or another organ involvement
  1. Updated guidance for children with chronic liver disease and those on immunosuppression (autoimmune liver disease and liver transplantation)

In view of the continuous evidence and increasing knowledge in the COVID-19 pandemic and its minimal impact on children and young people (under 18 years of age) with liver disease and those post liver transplant we have undertaken an update on our advice.

We identified patients who are ‘clinically extremely vulnerable’ due to the risk of severe disease caused by SARS-CoV-2 infection and categorised them in 2 groups.

All children and young people are currently encouraged to adhere to the government advice on social distancing but continue to attend school/college, unless advised otherwise by their clinical team.

As per standard advice prior to the pandemic patients in Group A and some in Group B would have been advised from time to time to not attend school due to their clinical condition or the treatment required to manage it. Similarly, their families and households would be advised to take extra care around hygiene and infectious contacts.

Families can contact their respective Paediatric Liver Centre and discuss their concerns at any point should they feel their circumstances do not fit into any of the below categories. The guideline provided here is advisory only and not compulsory and as such families can make their own decisions.

Group A

Group A lists conditions that mean a child or young person is CEV and they should practice stringent social distancing.

  • Children at risk of severe infection due to immunodeficiency induced by their disease or their drugs as part of their therapy (i.e. some post-transplant immunosuppression). This includes children who are clinically vulnerable during the immediate period after liver/small bowel/multivisceral transplant.

Group B

Group B lists conditions who are not CEV but if the individual patient is considered to be exempt by their respective paediatric liver centre that can be discussed on an individual case basis.  

The majority of children with conditions listed in Group B will NOT be CEV.

Liver disease who meet one or 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) if deemed CEV by the respective subspecialty.
  • Active or frequently relapsing autoimmune liver disease where they are likely to need increase in treatment.

Education settings

Those children whose doctors have confirmed they are still clinically extremely vulnerable are advised not to attend school while this advice is in place. Your school will make appropriate arrangements for you to be able to continue your education at home. Children who live with someone who is clinically extremely vulnerable, but who are not clinically extremely vulnerable themselves, should still attend school.

Author : Liver Steering Group November 2020

  1. Updated guidance for Paediatric inflammatory bowel disease (IBD) patients

IBD Working Group

British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN)

Coronavirus (SARS-CoV-2) and COVID-19 in children with IBD

Position Statement: Update to guidance for attending school/college for children and young people with IBD – November 2020

The UK government has announced a 4-week lockdown from Thursday 5th November. During this time, it is planned that schools and colleges will remain open. This information is intended to summarise the national guidelines. The advice here is subject to change and local restrictions may be enforced.

The previous BSPGHAN IBD working group statement from the 31/08/2020 recommended that the majority of paediatric IBD patients attend school/colleague. This is supported by data from the SECURE-IBD database which so far registered 284 cases of COVID-19 in patients with IBD aged 0-19. There have been no deaths and the intensive care admission rate was only 1% which is hugely reassuring.

The overall risk for COVID-19 related complications appear extremely low regardless of clinical phenotype or therapy and we therefore agree with the recently published RCPCH statement  that none of the paediatric IBD patients automatically classify for the highest risk group: ‘clinically extremely vulnerable’ (CEV).

An IBD patient might be considered CEV particularly in individuals with moderate to severely active disease not controlled by immunomodulator monotherapy or combination therapy with immunomodulator and biologic. A discussion with their paediatric gastroenterology team is required to determine CEV status and specific precautions for each individual. Children and families should be at the centre of this process. We recognise that there may be considerable concern and anxiety for this small group of children, young people and their families. This is the consensus advice from the RCPCH and the UK Government.

ATTENDING SCHOOL:

All children with IBD are recommended to continue attending school/college with the exception of a very small group of children who have been identified as CEV and deemed unsafe to attend by their paediatric gastroenterology team (see above). This will need to be assessed on an individual case by case basis, always prioritising patient safety.

ADDITIONAL POINTS:

  • Children, young people and families should continue to follow their own school’s policies, including year group bubbles and respect the need to self-isolate if instructed to.
  • All children with IBD should stringently adhere to government advice for social distancing, including at school.
  • If parents/carers have doubts about their child’s risk, they should contact their paediatric gastroenterology team.
  • Children and young people who test positive for COVID-19, or experience symptoms of COVID-19, should not automatically stop their medication. Decisions on medication should be made by the clinical team on an individual case by case basis. Please contact your paediatric gastroenterology team in this scenario.
  • This guidance is subject to change, even at short notice. Whilst this lockdown is initially for 4 weeks, this is subject to change. Local restrictions are likely to apply after this point. We will endeavour to keep this document updated if additional guidance is issued.

This IBD Working Group Statement is based on data available up to the 3rd of November 2020. More evidence of PIBD and the SARS-CoV-2 pandemic will emerge requiring updates. This document is a working group statement/recommendation and not evidence-based clinical guidance. The approach to PIBD patients in the SARS-CoV-2 pandemic might vary due to different individual trusts’ policies.

Author: Dr James Ashton on behalf of the IBD Working Group, BSPGHAN, 3rd of November 2020

Core References and Web-Links

https://www.rcpch.ac.uk/resources/covid-19-shielding-guidance-children-young-people#update-onshielding-18-august-2020

https://www.cicra.org/news/coronavirus/

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerablepersons-from-covid-19/covid-19-guidance-for-young-people-on-shielding-and-protecting-people-mostlikely-to-become-unwell-if-they-catch-coronavirus

https://covidibd.org/

 BSPGHAN November 9th, 2020

President Update 1st November 2020 (1) NEW – BSPGHAN AFFILIATION WITH FRONTLINE GASTROENTEROLOGY

President Update 1st November 2020 (1) NEW – BSPGHAN AFFILIATION WITH FRONTLINE GASTROENTEROLOGY

BSPGHAN Council are delighted to announce that we have consolidated an affiliation with Frontline Gastroenterology.

This arrangement offers an exciting opportunity for BSPGHAN members to receive:-

  1. Free access to the online publication as a benefit of membership.

Access will be via the secure member area on the BSPGHAN website.

  • The opportunity for publication of poster abstracts from the BSPGHAN Annual meeting in the journal.

Look out for a dedicated session introducing Frontline Gastroenterology at the 2021 virtual BSPGHAN Annual Meeting in January.

The journal

You will be aware that FG is an official publication of the British Society of Gastroenterology  and is a companion journal to Gut and BMJ Open Gastroenterology. Frontline Gastroenterology publishes articles that accelerate adoption of innovative and best practice in the fields of gastroenterology, hepatology and clinical nutrition. Frontline Gastroenterology is especially interested in articles on multidisciplinary research and care, focusing on both retrospective assessments of novel models of care as well as putative future directions of best practice. The journal also publishes articles in the domains of clinical quality, patient experience, service provision and medical education.

Frontline Gastroenterology is seeking new trainee editors

Editor-in-Chief, Professor Mark Beattie, University of Southampton, would like to highlight to BSPGHAN members that FG is seeking applications for trainee editors to work with the editorial team to produce regular blogs, podcasts and other multimedia content as well as reviewing submissions and working with the editorial team to commission content.

Find out more about the role and application process.


Please see a recent article in FG from the BSPGHAN NIFWG

Exit strategies from the COVID-19 lockdown for children and young people receiving home parenteral nutrition (HPN): lessons from the BSPGHAN Intestinal Failure Working Group experience  27 October 2020

President Update 1st November 2020: (2) BSPGHAN HAS BEEN WORKING WITH THE RCPCH TO UPDATE GUIDANCE REGARDING CHILDREN AND YOUNG PEOPLE WHO ARE CLINICALLY EXTREMELY VULNERABLE

President Update 1st November 2020: (2) BSPGHAN HAS BEEN WORKING WITH THE RCPCH TO UPDATE GUIDANCE REGARDING CHILDREN AND YOUNG PEOPLE WHO ARE CLINICALLY EXTREMELY VULNERABLE

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

President Update 1st November. (3) UPDATE FROM CROHN’S & COLITIS UK FOR HEALTH CARE PROFESSIONALS  – SEE INFORMATION BELOW FROM CCUK FOR THE ATTENTION OF BSPGHAN MEMBERS

President Update 1st November. (3) UPDATE FROM CROHN’S & COLITIS UK FOR HEALTH CARE PROFESSIONALS – SEE INFORMATION BELOW FROM CCUK FOR THE ATTENTION OF BSPGHAN MEMBERS

Life in Lockdown Survey Results

As you will be very well aware, IBD services have been disrupted one way or another by the coronavirus pandemic and we know there has been an impact on you and on patient care. Our Life in Lockdown survey gave us an insight into how services have been impacted by the pandemic from the patient perspective – we received 7,666 responses from people with Crohn’s and Colitis. Look at our blog to find out more about the results and how you can use them. 

Information and Resources for Patients 

For regularly updated information about Covid-19, please continue to signpost patients to our website: https://crohnsandcolitis.org.uk/news/coronavirus-covid-19-advice

We have recently published a list of the ‘Top 8 things to do after a Crohn’s or Colitis diagnosis’, to help people who are new to the conditions navigate the wealth of information and support available to them. You can signpost patients to the new page using this link: www.crohnsandcolitis.org.uk/new-diagnosis

We have also added a new blog for patients ‘Top tips for getting the most out of your virtual appointment’. This blog answers questions or concerns for patients who have not had a telephone or video appointment before and gives clear tips for before, during and after the appointment. 

While we cannot currently mail out patient packs, our online information is a great free resource that you can still signpost patients to.   

Flu vaccination

We have called for everyone with Crohn’s or Colitis to have free access to the flu vaccine on the NHS this season, in a joint letter from our Chief Executive Sarah Sleet and the Presidents of the British Society of Gastroenterology and British Society of Paediatric Gastroenterology, Hepatology and Nutrition to the Joint Committee on Vaccination and Immunisation. 

As you’ll know, the NHS guidelines on whether people with Crohn’s and Colitis are eligible to free vaccinations in England, Scotland, Wales and Northern Ireland are open to interpretation. Please encourage patients you consider eligible to get their flu vaccine as soon as possible. To help them with this, you can click here to download our open letter to vaccine providers explaining who with Crohn’s or Colitis is eligible for the free flu vaccine. 

GINcast: Gastrointestinal Nursing Podcast

Episode 3 of GINcast explores how the Covid-19 pandemic has changed the way IBD nurses deliver care to patients with Crohn’s and Colitis. Listen to the podcast here

Do get in touch with us at healthservices@crohnsandcolitis.org.uk if you have any queries.

Sue Protheroe
BSPGHAN  President
President@bspghan.org.uk

Preparing for the START Assessment- Parts 1 and 2

Preparing for the START Assessment- Parts 1 and 2

This is a recording of the talks delivered by Dr Jeng Haw Cheng, paediatric gastroenterology grid ST8 at Alder Hey Children's Hospital, and Dr Hina Rizvi, paediatric gastroenterology SPIN ST7 at Birmingham Heartlands Hospital at the trainees' meeting on 19 August 2020. Video editing by Helen Vanker.

These videos will be open access until the end of October.

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