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

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

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

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. 


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

President Update 26th March 2020

I know that you are all supporting each other and working together in new ways remotely and face to face.

Please do sign post your families to the excellent links that are updated regularly for patients with IBD by CCUK

See for patients with liver disease

I want to draw your attention to the Urgent message from BSG/JAG on Endoscopy 26/3/20 ( message below) and message

Summary of message

  1. Stop 
  2. Review 
  3. Re-organise NOW

Below also see Updated Intercollegiate General Surgery Guidance on COVID-19               25th March 2020

Risk situations in surgery also include:

  • Approaching a coughing patient, for example, even if COVID-19 has not been diagnosed. Protection including eye shield is needed.
  • Naso-gastric tube placement is an aerosol generating procedure (AGP). AGPSs are high risk. Full PPE is needed. Consider carrying out in a specified location.
  1. Only emergency endoscopic procedures should be performed . No diagnostic work to be done and BSG guidance followed. Upper GI procedures are high risk AGPs and full PPE must be used

GI Endoscopy Activity and COVID-19: Next steps


The BSG has produced recommendations(1,2) based on the best available evidence from China(3), Italy(4) and the USA(5) that show:

  • The virus causing COVID-19 is potentially present in all GI secretions.
  • That all endoscopic procedures, but particularly upper GI endoscopy, are aerosol generating procedures (AGP).
  • That transmission can occur at the time of endoscopy.

Endoscopy activity and COVID-19: BSG and JAG guidance (1)
BSG rationale around current advice to all Endoscopy Units (2)

We have received reports that some centres are continuing to run booked endoscopy lists, requiring patients:

  • To travel.
  • To enter hospitals already treating significant numbers of COVID-19 patients.
  • To wait in areas that do not meet any of the Government’s social isolating directives.

For these reasons, the BSG has recommended that all but emergency procedures should stop immediately.

  1. The main issues of contention remain whether Urgent 2 Week Wait (2WW) patients, (or Urgent Suspected Cancer (USC) patients in Scotland,) and patients already diagnosed as FIT positive under Bowel Cancer Screening Programs (BCSP), should be “paused” during the current crisis. 

How any potential damage from delayed diagnosis can be mitigated.


2WW/USC, and BCSP referrals: Relative Diagnostic Yield.
The Risks of Pausing

  • 2WW/USC referrals – yield of cancer = 3% 
  • Bowel cancer screening programmes (BCSP) (FIT+) – yield of cancer = 8-10% 
  • Another, small percentage of patients will have advanced disease at the time of referral and the delay will not alter their prognosis, which unfortunately will already be very poor. 
  • For this group, a delay of 3 months is unlikely to materially alter the risk of an adverse outcome.  
  • Some of those who do not have established malignancy will have benign lesions such as polyps. 

In the majority of these cases, progression to malignancy, if it occurs, may take years. 

  • Conclusion: Very few patients are likely to come to harm from a pause of 3 months.  

Risks of continuing 2WW/USC, BCSP and urgent referrals. 

  • Removing polyps, particularly those over 1 cm, carries risks of haemorrhage and perforation often requiring admission to hospital.  
  • During the COVID-19 crisis, ICU beds are unlikely to be available and even urgent surgical procedures will be restricted.   
  • The risks of death from polypectomy usually quoted, are based on entry into a hospital operating under normal conditions, but not during a COVID-19 epidemic, where the risks of death will be significantly higher. 
  • Patients who are diagnosed with cancer may not be offered surgery at the height of the epidemic. Their anxiety is likely to be equal to or even greater, than those with a positive FIT test whose colonoscopy is paused. 

In addition: 

  • All patients attending for a non-emergency endoscopy now enter a high-risk environment. 
  • The benefit of endoscopy may be offset by the risk of COVID-19 infection to themselves. 
  • The majority will be older than 60 years with higher mortality from COVID-19 if they become infected. 
  • They become a potential risk to their families and contacts. 
  • Patients with asymptomatic COVID-19 infection pose a significant risk to staff.  By definition, their infection will not be detected before having a procedure.  
  • The aerosol or droplets take up to an hour disperse, so they remain a risk to staff and other patients after they leave the room. 
  • Endoscopic procedures generate aerosols, so staff will require PPE at an appropriate level, at a time when it will be in short supply. (See PPE recommendations from the BSG pending further Government recommendations.)


There is, therefore, little evidence that a pause of 3 months will pose a significant risk to the great majority of 2WW/USC or BCSP patients, although it is accepted that a small number of patients may have a delay in their diagnosis. 

On the other hand, a much larger number of patients and staff will be put at significant risk of COVID-19 if the 2WW/USC and BCSP is continued even at a scaled-down level. 

Conclusions and Actions.

  • Stop all non-emergency endoscopy immediately. 
  • Triage plan to identify patients who fall into the emergency category. The evidence base for this is laid out in previous BSG documents. (1) and follows experience from China(3), Italy(4) and the USA(5).  
  • List all patients on to a separate Urgent Deferred Waiting List to prioritise their investigation when services resume.  

For patients needing immediate investigation, the British Society of Gastrointestinal and Abdominal Radiology (BSGAR) have issued pragmatic guidance for the Investigation of patients with lower GI symptoms during the COVID-19 epidemic. 

Conclusion: The BSG/JAG guidance on prioritisation should be followed by all units.  This will be updated regularly. 

Looking to the Future

Hospitals should ONLY resume endoscopy for 2WW/USC, BCSP patients when: 

  • National circumstance permit. Further guidance will be issued. 
  • Sufficient PPE, appropriate for the current risk level, is available for staff. 
  • Patient flow is safely adjusted through units to minimise risk. 

2WW/USC patients may need to be reassessed to determine if their cancer risk has changed by phone triage.


  1. Stop 
  2. Review
  3. Re-organise NOW


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

President update 23rd March 2020

Dear members

I would like to draw your attention to 3 important items today 23/3/20.

  1. Letter from Simon Stevens

This  sets out important actions that the NHS should put in place to redirect staff and resources, building on multiple actions already in train.

To:  Free-up the maximum possible inpatient and critical care capacity.

  • Prepare for, and respond to, the anticipated large numbers of COVID-19 patients who will need respiratory support.
  • Support staff, and maximise their availability.  Play our part in the wider population measures newly announced by Government.
  • Stress-test operational readiness.
  • Remove routine burdens, so as to facilitate the above

2. Letter from CMO Stephen Powis (attached)

Advice concerning those who are or may be at increased risk of severe illness from COVID-19

Please see a letter suitable to be sent to families in annex 3. 

Patients on immunosuppression therapies sufficient to significantly increase risk of infection have been outlined in the BSG Guidance which has been updated today 23/3/20.

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.

3. 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)

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
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

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
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.

Dr Sue Protheroe,
Consultant Paediatric Gastroenterologist,
Birmingham Women’s and Children’s Hospital.
Birmingham. B4 6NH. U.K.
Tel 0044 121 333 8705
Fax 0044 121 333 8701
Chair NHS England Clinical Reference Group, Paediatric Medicine.
President of British Society of Paediatric Gastroenterology, Hepatology & Nutrition.


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