President Update 7th April 2020: BSPGHAN IBD Working group statement and Parent /Carer Information Leaflet April 7th 2020

President Update 7th April 2020: BSPGHAN IBD Working group statement and Parent /Carer Information Leaflet April 7th 2020

Dear Members, 

I do hope that this message finds you and your families and friends in continuing good health. It is an unsettling update today on the situation as it unfolds, as it is anticipated that there will be a rapid climb of Covid-19 to hit our hospitals and community services this week and next.  

The focus has to be on pulling together as an NHS team to incident manage life threatening situations. When we emerge from this, there will be an important recovery phase to plan for.  

Today, BSPGHAN has helped to kick start the process and contributed towards a Gap Analysis to feed back via the RCPCH to NHS E. This will help planners understand the need for time dependent diagnostic procedures and appointments for patients who are referred with commonest or high risk PGHAN conditions.    

I am indebted to the BSPGHAN IBD Working Group and the Birmingham Children’s Hospital Nutrition nurses who have prepared the following guidance for members and the two items that you can use for information for parents/carers (attached):

1.BSPGHAN IBD Working Group statement for Health Care Professionals ​ COVID_IBDWG_HCP

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

2.BSPGHAN IBD Working Group 


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

3. Parent/ Carer Information Letter for families of children on home parenteral nutrition (authored by Birmingham Women’s and Children’s Hospital Nutritional Care Team nurses)  Birmingham Letter for HPN patients

I would like to draw your attention to advice  on practice and service provision for patients with IBD. Please mitigate risks of infection to theatre teams and preserve the PPE supply by limiting all but non emergency endoscopy for now. 

Importantly, the parent carer guidance, 2. and 3. provides; –  

a] paediatric-specific advice on shielding, ​helping professionals and families interpret what ” shielding” looks like for  ‘At Risk’ children with IBD who are on immunosuppression and for those on Home PN, and 

b] advice to avoid “late presentation” of febrile episodes in patients with IBD and on home PN.  

I am mindful that I would not ordinarily send out a letter intended for families unless it had been ratified by Council, but in these exceptional circumstances, there is a need for rapid guidance, especially if there is confusion on ‘shielding’ advice. Please can I ask members to check the home PN letter and amend the content as you see fit for local use before you share it with your families.  

The next few weeks may be tough for our teams. Please look after each other and make sure that you stay protected and remain safe.   

Thank you to Jochen and the IBD working Group and a personal thanks to Elaine, Louise and Gemma and all our amazing IBD, Gastroenterology and Nutrition nurses who are working tirelessly to keep our families well informed, safe and well.  

Best wishes
Sue, President of BSPGHAN  
April 7th 2020. 

President Update 7th April 2020: BSPGHAN IBD Working group statement and Parent /Carer Information Leaflet April 7th 2020

President 2nd April 2020: Update 1. Guidance for health professionals with IBD/liver disease 2. IBD registry tool 3. Guidance for trainees 4. treatment and vaccines for covid19 from EMA

Please see the following updates 

  1. Guidance for health professionals with IBD or liver disease

  1. Cvid19 UK IBD registry tool for adult patients

 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

  1. COVID-19 – RCPCH trainee progression in the UK through 2020

  1. EMA press releases related to COVID-19:

Please check EMA’s dedicated webpage on COVID-19 for the latest updates.

Thank you all again for your continued collaborative effort to support professionals  and patients.

Best wishes

Sue Protheroe


President 2/4/20

President Update 7th April 2020: BSPGHAN IBD Working group statement and Parent /Carer Information Leaflet April 7th 2020

President update 31st March 2020 Latest NHS E HPN patient letter for circulation

Dear members

Please share this updated letter C0106 HPN COVID patient information_UPDATED_27 March  with families of children on home parenteral nutrition. It outlines plans that home care providers are putting in place and changes that families may expect. 

Please be aware of the latest advice. 

 “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”.

Kind regards
Sue Protheroe
BSPGHAN President 31/03/20

President update Monday 30th March 2020- Endoscopy and IBD statements from ESPGHAN

President update Monday 30th March 2020- Endoscopy and IBD statements from ESPGHAN

This is a challenging time but amid the concern, there are uplifting stories of how people are looking out for each other and communities pulling together. The children’s rainbows of hope in windows and the national clap for carers to celebrate the work of the NHS and care workers on Thursday were much appreciated.   

Information is useful—but too much information can be unhelpful. I have limited news updates to new information from consensus sources. We don’t generally benefit from watching the news over and over. Try to focus instead on the things you need to get done. Value the rest of the time to relax with your family or friends and reach out to those who may not have such good support networks as you may have. 

The bulletins below have some reassuring observations for our patients.

I hope that these help guide your practice while working differently.

1 )Statement “Gastrointestinal endoscopy in children and COVID 19 pandemic” – ESPGHAN  Endoscopy Special Interest Group

“..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”

3) Letter from  Lorenzo d’Antiga, Italy  “Coronaviruses and immunosuppressed patients”

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. 

2) Article “COVID-19 and paediatric inflammatory bowel diseases: global experience and provisional guidance (March 2020) from the Paediatric IBD Porto group of ESPGHAN”.   see PDF attached

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

4) Surveys – please report cases of COVID-19

  1. a)  “PedIBD and Covid-19” ESPGHAN Porto IBD Group
  2. b) “EoE/EGID and COVID-19 ”

Best wishes 

Sue Protheroe

President 30 March 2020

President Update 7th April 2020: BSPGHAN IBD Working group statement and Parent /Carer Information Leaflet April 7th 2020

BSG/JAG statement on personal protective equipment (PPE)

  • All upper GI endoscopy should be considered high risk and enhanced PPE is recommended for all patients, regardless of any risk stratification.
  • BSG also considers lower GI endoscopies to be aerosol generating procedures (AGP) but the evidence for this is less strong and there is insufficient evidence to consider these as high risk at the present time
  • Risk stratification of patients by symptoms and temperature is of limited value, given the widespread prevalence and incubation period of up to 14 days
  • We recognise the limited availability of PPE, especially FFP3 masks, and so case selection is critical, focussing only on emergency and absolutely essential procedures. Minimising the volume of emergency activity will help preserve PPE supply.

Notes on FFP3 masks and enhanced PPE

  • Proper fitting and testing prior to use
  • Although ‘single use’ can use for several hours if not removed/contaminated
  • FFP3 uncomfortable after prolonged wearing, may affect ease of procedure
  • Cannot e.g. use phone, visit, toilet, eat or drink once enhanced PPE is on
  • Meticulous removal of enhanced PPE is vital; follow PHE advice
  • For COVID-positive patients – consider wearing full visor and surgical mask over FFP3 mask. This minimises risk of contamination of FFP3 mask and prolongs use

Further Key points for Optimal Practice

For known COVID-positive patients

  • Scope in designated, different area of the department
  • Designated, separate recovery area
  • Minimal furniture and equipment in room
  • Minimum essential staff in room


  • PPE is only part of the strategy to prevent and control transmission of infection
  • Team organisation –essential staff only in procedure room
  • Don’t share PCs, keyboards, phones etc – or clean thoroughly between users

The situation is rapidly evolving and this guidance may be updated regularly

President Update 7th April 2020: BSPGHAN IBD Working group statement and Parent /Carer Information Leaflet April 7th 2020

President’s Update 27th March 2020

Dear members

I hope that BSPGHAN can help you feel as safe as possible, find guidance you need, allow remote peer support and provide clarification if existing advice is not clear. 

People are  pulling together and supporting each other locally and nationally and please keep on doing this to help us share the current burden of uncertainty. 

Buddy up. 

Ask each other “ Are you OK?”

These principles in these exceptional times may be useful to prioritise –

·         To keep our teams and patients safe

·         To support each other 

·         To be up to date and to work by the best evidence that is available

·         To manage our patients with highest standards possible, making decisions case by case

·         To work within our existing resources and use resources fairly taking account of all patients including those outside our care

·         To ensure we are not putting others at a disadvantage or at risk by what we do. 

We may reach out to ethical principles, including justice, to guide decision making under these difficult times. 

We have been lucky while working in the NHS that we haven’t had to make such tough decisions and we are seeing truly exceptional circumstances.


·         Be aware of delayed presentation to hospital of children due to family’s reluctance to come to hospital

·         Keep families well informed and signposting to regularly updated resources (eg CLDF, CCUK

·         Reinforce the vital work of all the wider team to your Trust so that they can continue support of children to help them stay well and avoid hospital admission

·         Please see guidance from BIFA / BAPEN for HPN patients during COVID19 pandemic

Paediatric endoscopy

·         The best available information for professionals in making decisions remains with the BSPGHAN endorsed BSG / JAG guidance

Endoscopy activity and COVID-19: BSG and JAG guidance 
BSG rationale around current advice to all Endoscopy Units    

·         We will not put members in a position where BSPGHAN guidance is impossible to implement.

·         The decision to go ahead with an endoscopy has to be a case by case decision.

·         There is no place for routine work

·         Endoscopy should be done only if it’s an emergency requirement to manage that patient.

·         Lifesaving management of GI bleeding is the priority

·         Local implementation of national guidance is needed since  resources ( PPE, paediatric staff, lists) are not the same in each centre.

·         Decisions to proceed to theatre will involve wider discussion and each Trust has a SOP

·         PPE is needed for all close work that may involve production of an aerosol even with asymptomatic patients who aren’t febrile, coughing or ill. 

·         If a trust has lists and PPE and operators, then diagnostic work that is deemed to be an emergency may carry on. 

·         In reality, there may be less availability of resources, PPE may be scarce, and no diagnostic work may be possible

·         BSPGHAN endorses that it is acceptable to have a  “treat first and investigate later” policy if resources are not available to proceed to endoscopy and to minimise risk to yourself, anaesthetic and theatre colleagues 

·         Case by case anonomised, remote discussion with peers can be useful to inform treatment decisions.

In summary, please  implement at national guidance at a local level to offer the best practice for patients that is safest for your team and can be provided within existing resources

Modified BSG risk criteria for paediatric IBD patients  – March 2020(adapted by Richard Russell from BSG guidance)

Highest Risk ‘Shielding’ $Moderate risk ‘Stringent social distancing’Lowest risk ‘Social distancing’
 1. PIBD patients who have a co-morbidity (respiratory, cardiac, hypertension or diabetes mellitus) and are on any therapy for IBD (per middle column) except 5ASA, budesonide, EEN/MEN or rectal therapies  
2. PIBD patients regardless of co-morbidity and who meet one or more of the following criteria: 
·         on oral or intravenous steroids equivalent to prednisolone ≥20 mg per day * 
·          new induction therapy with combo therapy (starting biologic within previous 6 weeks) 
·         moderate-to-severely active disease despite immunosuppression/ biologics 
·          short gut syndrome requiring nutritional support 
·          requirement for parenteral nutrition
Patients on the following medications: 
· Ustekinumab 
· Vedolizumab 
· Methotrexate 
· Anti-TNF alpha monotherapy (infliximab, adalimumab, golimumab) 
· Thiopurines (azathioprine, mercaptopurine) 
· Calcineurin inhibitors (tacrolimus or ciclosporin) 
·Janus kinase (JAK) inhibition (tofacitinib)
· Combination therapy in stable patients** 
· Immunosuppressive/biologic trial medication 
Patients on the following medications: 
· 5ASA
· Rectal therapies 
· Orally administered topically acting steroids (budesonide or beclometasone) 
· Exclusive enteral nutrition/minimal enteral nutrition
· Antibiotics for bacterial overgrowth or perianal disease 

$ UK government COVID 19 terminology

* For patients <40kg this means >0.5mg/kg per day of oral steroids, for patients >40kg then its 20mg per day or higher 

** Established on this for more than 6 weeks

Stay safe and I hope you all get some rest this weekend. 

Thanks for reaching out to colleagues, particularly who may be isolated,  and please ask if they are ok. 

All the best. 


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