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

Sample size and appropriate powering of randomised controlled trials in IBD: A Delphi study to achieve minimum recruiting targets for UK studies

Sample size and appropriate powering of randomised controlled trials in IBD: A Delphi study to achieve minimum recruiting targets for UK studies

Why is this project being done?

A recent project has investigated every RCT in IBD in both adults and children published globally since 1996 (the year the first publication guidance in the CONSORT statement were released). We found that 20% of studies have no sample size estimate to guide how many patients should be recruited to the project. However, for the studies that did calculate power, they used variable and often highly spurious figures of the difference between groups that they expected which leads low numbers of patients included. This has left many studies underpowered and impacts the entire evidence base, as we often see when completing systematic reviews. Guidance, based on actual observed effect sizes, could support trial designers and most importantly ensure funded studies are completed to an appropriate power.

What will participation involve?

We will ask you to attend a face to face session in one of five locations across the UK for approximately 2-4 hours with 5-12 other professionals working within IBD. We will present the actual data for effect size seen over trials in a number of different settings, categorised by disease (UC or CD), current state of activity (induction or remission studies), specific agents of study and age of patients. We will then ask you, based on the actual data presented and the quality and certainty of that data, to estimate what you would think a minimum and maximum likely effect size would be for a trial in a similar setting. Once all the sessions are complete, you will be invited to participate in a second and third stage online, consistent with a Delphi approach. This will present the data from all the sessions analysed and allow a national expert consensus to be reached and this paper published.

Who can get involved?

We are looking at a range of professionals involved with the care of IBD. This can involve consultants, specialist nurses, researchers and indeed patients. We are particular keen on those who have practical experience with a range of treatments with their patients and the success rates / impact of these with their patients, as this will allow practical expert view to enhance the decision making based on the data we represent. No research experience is needed.

Can you tell me more about the face to face session?

These will take place in February and March 2020 in London, Cardiff, Glasgow and Preston. We will have a local meeting space and provide refreshments and also reimburse travel up to £60.

How else can I get involved?

If participants are keen to support this work, they can discuss with our team and potentially support the analysis and write up of the project. We also invite anyone involved in this and other Cochrane works to contact us.

If you are interested in getting involved, please contact

New 2019 IBD Standards launch

In June the new IBD Standards has been launched with the aim to improve how we care for people with Inflammatory Bowel Disease (IBD) across the UK. These have been created by IBD UK, a partnership of 17 patient and professional organisations, including BSPGHAN, the BSG, CICRA and Crohn’s & Colitis UK.

The IBD Standards say what high-quality care should look like at every point of a patient’s journey – from first symptoms, to diagnosis, treatment, and ongoing care, whatever their age and wherever they live in the UK. They also set out how an IBD service should be organised and managed to deliver this. Paediatric and adolescent care has been considered throughout.

Announced at the BSG annual conference, these 59 statements set out what good care and treatment looks like for patients with IBD, with the aim that every IBD service in the UK will work to meet these.

A new digital IBD Benchmarking Tool has been developed to help with this, so that services can assess how they are doing against the IBD Standards and plan to improve. A new UK-wide IBD Patient Survey will give people with IBD the opportunity to rate their experience of care, allowing patient experience to support the development of a service. This will provide an opportunity to push through real change, support with business cases and make the case for additional resources needed.

Through this process, healthcare professionals and patients will be able to work together to improve standards of care for everyone with IBD across the UK.

What your team needs to do to make the IBD Standards a successful reality:
• Register for the IBD Benchmarking Tool – from now!
• Promote the IBD Patient Survey in your service from 8th July
• Incorporate the IBD Standards in your overall service design and work, and making opportunities to discuss and raise awareness of the IBD Standards at meetings, events and talks
To see the full list of IBD Standards, register for the IBD Benchmarking Tool and find more information visit For any queries, and to obtain flyers to promote the IBD Patient Survey, email

Yours sincerely,

Dr Rafeeq Muhammed
Chair of BSPGHAN IBD Working Group

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