President Update 14th June 2020

President Update 14th June 2020

Dear members

COVID-19 has sadly shown that colleagues and patients from BAME communities have been disproportionately affected by COVID-19. Acknowledging and actively mitigating health inequalities is rightly high on our agenda. Recent events have additionally brought into sharp focus the need to tackle discrimination of any kind.  Many young people have led the way and seized the opportunity to highlight  these issues peacefully. Thinking of the  young people we look after, an opinion piece in The Lancet Child & Adolescent Health   https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(20)30186-3/fulltext

has highlighted the damaging long term consequences of lack of face to face contact among young people and their peers.

We are now actively offering personalised discussions with families and young people to support continued shielding or easing of restrictions.  Not all those children and young people who are currently advised to shield need to continue to do so and can  return to school as it reopens where the benefits of school – in terms of access to therapies and developmental support – far outweigh the risk of infection.

This week, we will all wear face masks more widely and continue social distancing to keep our patients safe. The impact of the 2m social distancing rule in hospital impacts on our  ability to reset, restore and recover health services. In England, today the Government announced that it is undertaking a review of 2m rule regarding economic recovery and we await their deliberation. 

1. Shielding update for children and young people

On June 10th, the RCPCH released advice this advice on shielding guidance for children. Its aim is to support clinicians in their discussions with patients and their families/carers about the risks and benefits associated with shielding.   It specifically considers children with paediatric gastroenterology, hepatology and nutritional problems using the available evidence  More information is available from  British Society for Paediatric Gastroenterology, Hepatology and Nutrition.

The update seeks to support the trusted relationship between patients and their doctors. 

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

RCPCH have offered advice regarding returning to school https://www.rcpch.ac.uk/resources/covid-19-talking-children-families-about-returning-school-guiding-principles


In England, the NHS sent  a letter to NHS trusts and primary care on 4 June which outlines changes and the process for maintaining list of shielded patients (additions and removals) – see here:  https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/06/C0583-nhs-update-on-shielding-june-2020.pdf

1. Shielding update for children and young people

On June 10th, the RCPCH released advice this advice on shielding guidance for children. It’s aim is to support clinicians in their discussions with patients and their families/carers about the risks and benefits associated with shielding.   It specifically considers children with paediatric gastroenterology, hepatology and nutritional problems using the available evidence  More information is available from  British Society for Paediatric Gastroenterology, Hepatology and Nutrition.

The update seeks to support the trusted relationship between patients and their doctors. 

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

RCPCH have offered advice regarding returning to school https://www.rcpch.ac.uk/resources/covid-19-talking-children-families-about-returning-school-guiding-principles


In England, the NHS sent  a letter to NHS trusts and primary care on 4 June which outlines changes and the process for maintaining list of shielded patients (additions and removals) – see here:  https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/06/C0583-nhs-update-on-shielding-june-2020.pdf

Further advice is expected to be released this week from June 15th.

.2.  Updated shielding guidance for children with chronic liver disease and those on and those on immunosuppression (autoimmune liver disease and liver transplantation) June 11th https://bspghan.org.uk/wp-content/uploads/2020/06/Updated-shielding-guidance-for-children-with-chronic-liver-disease-and-those-on-immunosuppression_TG-1.pdf

In view of evidence and increasing knowledge in the COVID-19 pandemic, the 3 paediatric Liver Centres updated the advice to children and families with chronic liver disease. This advice is generated following communication with colleagues from other societies (BTS, BLT, BSG, BASL)  and referencing to documents released by PHE, GOV, ERN-Rare Liver, RCPCH and NHSE.

  1. Exit strategy from the Coronavirus (Covid 19) lockdown and ‘enhanced social distancing’ (shielding) for children and young people receiving home parenteral nutrition (HPN); a decision making framework from the BSPGHAN Nutrition and Intestinal Failure working group

https://bspghan.org.uk/wp-content/uploads/2020/06/Exit-strategy-from-the-Coronavirus-lockdown-and-HPN-.pdf 

Key points

  • children and young people receiving HPN were advised to ‘shield’ when lockdown commenced in March 2020
  • it is now apparent that gastrointestinal manifestations of Covid19 in children are mild and self limiting
  • we have not identified any reports of severe complications of covid19 in short bowel syndrome (SBS), intestinal failure (IF) or HPN from Covid19,  in the adult and paediatric medical literature
  • mental health of children required to take quarantine measures is well described with anxiety, distress and increased risk of major mental health disorders
  • all HPN children should no longer be considered ‘extremely vulnerable’ since negative social and developmental effects would appear to outweigh protection
  • patients and families should have a balanced conversation about returning to school. They may wish to take a tailored approach, such as following in two weeks behind their peers to assure that initial logistics of social distancing are being followed
  • If a child has coexisting disease, e.g. cardio-respiratory, neurodisability, immunodeficiency, inflammatory bowel disease (IBD) or is on certain immunosuppressive treatment that would not in itself be severe enough to warrant shielding, clinicians may wish, in conjunction with other speciality teams and families consider that the patient should continue shielding from cumulative multi-organ risk.
  1. The BSPGHAN motility working group has produced guidance on

Restarting neurogastroenterology and motility investigations in paediatrics. BSPGHAN Motility Working Group guidance (June 2020).

This describes restoration of neurogastroenterology for the common GI functional testing based of the best available evidence

https://bspghan.org.uk/wp-content/uploads/2020/06/Restoration-of-neurogastroenterology-and-motility-investigation-in-paediatrics-June-2020.pdf

During the height of Sars-CoV-2 transmission there were almost complete halt to gastrointestinal motility investigations as they are considered non urgent aerosol generating procedures (AGP). With the infection rate recessing in the UK, most NHS Trusts are slowly increasing capacity for elective work. Particular attention is drawn to AGP to minimise the infection risk to children and healthcare professionals.

The Motility Working Group aim is to provide guidance for clinicians on the safe restoration of selected gastrointestinal motility investigations; this guidance is based on the current evidence but this is a rapidly evolving subject and the guidance many change over time. The working group will endeavour to update this document if new information become available

  1. ESPGHAN Advice Guide – Treatment of Chronic Hepatitis C Infection in children

https://bspghan.org.uk/wp-content/uploads/2020/06/Treatment_of_Chronic_Hepatitis_C_Virus_Infection_in_Children._ESPGHAN_Advice_Guide._2020._Ver1.2.pdf

  1. BSG advice

 In guidance on restarting endoscopy services the BSG has suggested treating patients (< 55 years) with suspected coeliac disease and a tTG >x10ULN without biopsy.

Here is the protocol further detailing this advice, which is specific to the COVID-19 environment and has been issued as interim guidance pending the publication of the new BSG Coeliac Guideline expected to be published in 2021.   https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/

Management of acute severe ulcerative colitis (ASUC) during the novel coronavirus 2019 (COVID-19) pandemic presents significant dilemmas. The BSG panel includes members of BSPGHAN and aimed to provide COVID-19-specific guidance using current British Society of Gastroenterology (BSG) guidelines as a reference point.

https://www.bsg.org.uk/covid-19-advice/adaptation-of-the-bsg-guidelines-on-the-management-of-acute-severe-ulcerative-colitis-in-the-context-of-the-covid-19-pandemic-a-rand-appropriateness-panel/

With very best wishes to you all. 

Sue 
BSPGHAN  President, e-mail President@bspghan.org.uk
June 14th 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

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

https://www.bsg.org.uk/covid-19-advice/bsg-basl-rcp-guidance-for-healthcare-workers-with-moderate-risk-inflammatory-bowel-disease-and-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

https://www.bsg.org.uk/covid-19-advice/covid-19-uk-ibd-tool-for-patients-is-now-live/

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

https://www.rcpch.ac.uk/resources/covid-19-rcpch-trainee-progression-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

e-mail President@bspghan.org.uk

President 2/4/20

PFIC trial

PFIC trial

Mirum Pharmaceuticals is striving to bring transformative medicines who have rare cholestastic liver conditions.  In keeping with their mission they have instituted a a Phase 3 study called MARCH to evaluate the safety and efficacy of maralixibat in pediatric patients with PFIC. Eligible patients in this clinical study may help provide new insights into PFIC and could lead to the first approved drug therapy.  For full details please visit https://pfictrial.com/

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