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2025-03-31-accounts

PSEUDO OBSTRUCTION RESEARCH TRUST

FINANCIAL STATEMENTS

FOR THE YEAR ENDED 31st MARCH 2025

TIM HORNER FCCA

Chartered Certified Accountant

55 Crown Street Brentwood Essex CM14 4BD

www.hillwooldridge.com

PSEUDO OBSTRUCTION RESEARCH TRUST

Contents
Page
Trust information 1
Trustees' report 2 - 8
Independent examiner's report 9
Receipts and payments account 10
Statement of assets and liabilities 11

PSEUDO OBSTRUCTION RESEARCH TRUST

Trust information

Charity commission number 1114217
Established 22nd February 2006 by Deed of Trust
Address Steeple Lodge
Church Lane
Doddinghurst
Essex
CM15 0NJ
Website www.port-charity.org.uk
Trustees Sue Stewart (Chairperson)
Rebecca Stanier
Barry Stewart
Dr Nigel Meadows
Lesley Carmichael
Ashlee Johnson
Kilian Fitzsimmons-Wilson
Sonia Frost
Ian Frost
Abigail Andrews
Bankers Lloyds TSB
47 High Street
Brentwood
Essex
CM14 4RN
Independent examiner Tim Horner FCCA
55 Crown Street
Brentwood
Essex
CM14 4BD

Page 1

PSEUDO OBSTRUCTION RESEARCH TRUST

Report of the Trustees for the year ended 31st March 2025

History, objectives and activities

Pseudo Obstruction Research Trust (PORT) was established in February 2006 in Brentwood, Essex

The objectives of the trust are:

1)

To promote & protect the physical & mental health of UK sufferers of Chronic Intestinal Pseudo Obstruction (CIPS), Gastroparesis & Dysmotility leading to intestinal failure, through the provision of funding for medical research, support ,education & practical advice to advance the education of the General Public in all areas relating to CIPS, Gastroparesis & Dysmotility leading to intestinal failure.

The main activity of the Trust in the period under review has been fund-raising to provide sufficient reserves to enable the trust to sponsor future research into the causes of Chronic Intestinal Pseudo Obstruction.

Management and governance

The trust deed stipulated the first Trustees, who continue to serve.

There must be at least three Trustees. Were there a requirement for new Trustees, these would be identified and appointed by the remaining Trustees. In selecting individuals for appointment as Trustees, the Trustees must have regard to the skills, knowledge and experience needed for the effective administration of the Trust.

A new Trustee will be inducted into the Trust by the existing Trustees. This would involve awareness of the Trustee's responsibilities, the governing document, administrative procedures and the history of the charity. A new Trustee would receive a copy of the latest annual report and accounts.

The Trustees annually review the risks that the charity faces. To date these have mainly related to safeguarding the charity's reserves and have been satisfied by ensuring funds are held on deposit with an established bank.

Continued/…...

Page 2

PSEUDO OBSTRUCTION RESEARCH TRUST

Report of the Trustees (continued) for the year ended 31st March 2025

Achievements, performance and financial review

During the ended 31st March 2025 the Trust's activities resulted in net funding receipts totalling £41,296 and expenditure of £471.

PORT continues its working relationship with Bowel Research UK (BRUK).

PORT has access to the Medical Research Peer Panel made up of leading Consultants Doctors and Medical Researchers of Bowel Research UK who review, and score the research applications we receive, so that we focus on the best possible research.

Following on from our PORT Trustees Report Year end 31.03.24:

Research 1/2022 Salford Royal NHS Foundation Trust

‘The Effectiveness of an Acceptance and Commitment Therapy (ACT) based psychological intervention on reducing psychological distress in those diagnosed with Gastro-Intestinal Dysmotility’

This research was aborted due to Staff resignations, Maternity leave, other staffing issues, and patient recruitment failures. An Initial funding grant of £25,138.01 has been paid for the Initial set up costs of this research.

No further funding has taken place, Bowel Research UK are holding the remaining £24856.19 on behalf of PORT (Ring Fenced), upon our instruction this sum has been reallocated to fund the Dr. Rachael Harwood Alder Hey Children’s NHS Foundation Trust. Payment for this is anticipated to be paid at the end of the study, details are below in the New Research section.

- Research 4/2023 Great Ormond Street Hospital (GOSH)

‘The Utility of Motility-MRI in the assessment of Foregut Neuromuscular function in Children with Paediatric Intestinal Pseudo Obstruction (PIPO) (Prof. Osvaldo Borelli)

An Initial funding grant of £25000 has been made at the commencement of research, to fund initial set up expenses.

The start date for research was delayed to April 2023 due to recruitment issues.

Continued/…...

Page 3

PSEUDO OBSTRUCTION RESEARCH TRUST

Report of the Trustees (continued) for the year ended 31st March 2025

- Research 4/2023 Great Ormond Street Hospital (GOSH) continued

Paediatric intestinal pseudo-obstruction (PIPO) encompasses a group of rare, severe disorders affecting the gastrointestinal nerves and muscles. The inability to tolerate feeds is one of the main problems in children with PIPO representing a considerable psychological burden for both children and their families. Tools able to predict the optimisation of oral/intestinal nutritional support are scarce. Moreover, the availability of specialist equipment used for the diagnosis and management is limited to a few centres. Recent advances in motility magnetic resonance imaging (mMRI) suggested its potential use as non-invasive technique for quantifying intestinal motility in children with PIPO. We aim to demonstrate the utility of mMRI for assessing bowel movement by using a novel software able to quantify objectively segmental and global gut motor activity in the response to a liquid challenge.

By comparing mMRI biomarkers to parameters detected by antro-duodenal manometry and small bowel scintigraphy, the current diagnostic tools used for assessing the bowel motor activity, we aim to provide new insights on the underlying mechanisms responsible for the disease severity. We also aim to provide a proof of concept for the use of mMRI as a non-invasive diagnostic tool for the diagnosis and management of children with PIPO.

GOSH Interim report

Progress to date: The aim of our project is to validate the semi-automated quantitative metrics of GI motility extracted from mMRI in children with PIPO, against ADM and small bowel scintigraphy. It is characterised by a retrospective arm, with the analysis of small bowel motility in mMRI, small bowel scintigraphy and ADM in 20 patients, and a prospective arm, which involves the analysis of the motility parameters in children with PIPO and control group (non-PIPO patients), using mMRI, ADM and small bowel scintigraphy, with the aim to validate automated MRI motility biomarkers (15-20 patients). The retrospective arm has been concluded. We are moving to the prospective arm.

GOSH have completed the first part of the project PORT has agreed an extension to allow time for the IT issues to be rectified.

The revised end date was to be November 2025, Discussions with GOSH are still ongoing they do wish to finalise their research however the IT software issues are still unresolved.

At the time of writing a Final Report is still awaited.

If GOSH are unable to complete the study and produce the Final Report, sadly PORT would have to abort this research.

Continued/…...

Page 4

PSEUDO OBSTRUCTION RESEARCH TRUST

Report of the Trustees (continued) for the year ended 31st March 2025

NEW RESEARCH Agreed In this year 2024/25

The following two applications have been ‘Peer’ reviewed by BRUK (Bowel Research UK), and deemed by the BRUK Medical Advisory panel to be an acceptable standard. Grant Funding has also been approved by the Trustees of PORT and we have given the go ahead on these two research projects.

Both research teams have been notified they have been awarded their respective Grants.

Alder Hey Children’s NHS Foundation Trust - Dr Rachel Harwood

st Babies with Enterocolitis-A study of Faecal Calprotectin proposed start date 1 October 2024 ending October 2026

Grant cost £47185.50

Initial funding £24856.19, to be made from the unused Salford Royal NHS Trust aborted project above (PORT funds held at BRUK).

Lay Summary

Babies with Hirschsprung’s Disease are born without normal nerves to the end of their bowel which means they cannot poo properly, and are at high risk of infection of the bowel, called enterocolitis. 1 in 4 children with the Disease develop enterocolitis and, if not treated quickly, it can lead to death. The symptoms include a swollen tummy, temperatures and diarrhoea but it can be hard to spot, especially in the early stages, and there is no test for it. In some diseases, a substance called calprotectin is found in the poo when the bowel is inflamed. We plan to collect poo samples from children with Hirschsprung’s Disease and measure the calprotectin, to see if it can help us predict which children are at highest risk of enterocolitis. When we collect the poo we will ask parents some questions about their child’s diet and poos over the week before, and how easy it was to collect the sample. This is a pilot study, which means we don’t expect to get a definite answer to whether measuring calprotectin levels will change treatment for children. However, it will help us find out if calprotectin levels are a useful test for bowel inflammation in these children and will tell us what parents’ views are on collecting poo samples regularly. If it does look like measuring calprotectin is a useful test in Hirschsprung’s disease, we will do more studies to find out if some children may benefit from more intensive treatment.

Continued/…...

Page 5

PSEUDO OBSTRUCTION RESEARCH TRUST

Report of the Trustees (continued) for the year ended 31st March 2025

Blizzard Institute London - Prof Gareth Sanger

Mechanisms and Treatment of Nausea Proposed start date 16th November 2025

Grant cost £55698.77

Lay Summary

Nausea is highly aversive and unlike vomiting, poorly treated. This includes gastroparesis, where nausea is a dominant symptom. Researchers have identified areas of damage within the stomach of patients with gastroparesis. This includes some loss of ‘pacemaker cells’ within the stomach wall. These are cells which generate a small electrical current that passes around the stomach at regular intervals, coordinating its ability to function and empty normally after eating. Dysfunctional pacemaker cells create small disruptions in movements of the stomach. When these are recognised by a major nerve that connects the stomach to the brain, the changes can be communicated for interpretation as nausea (“queasy stomach”). Our laboratory uses human stomach (obtained following surgery for obesity) to investigate how substances causing nausea disrupt pacemaker and other functions of the stomach, and how this can be corrected by electrical stimulation of the stomach. In patients, electrical stimulation involves surgically attaching electrodes onto the stomach, connected to a stimulator outside the body. Different methods of stimulation are used, each with promising results. However, it unclear how they work and what they do to different parts of the stomach (potentially providing ‘good’ and ‘less good’ outcomes). Using human stomach, we will characterise the effects of substances causing nausea, discover how best to electrically stimulate for optimal clinical benefit and then show how electrical stimulation can alleviate nausea. The outcomes will help understand mechanisms of nausea and guide the development of stimulators and/or new drugs to help these poorly-treated patients.

New Diagnostic Equipment for Great Ormond Street Hospital

Following consultations with Prof. Osvaldo Borelli at GOSH, it has become clear that there is a need for new less invasive state of the art diagnostic equipment for PIPO (Paediatric Intestinal Pseudo Obstruction). The Alimetry system is an external belt which allows a non-invasive assessment of the gastric myoelectrical activity is similar to an ECG machine of the heart. The machine will provide useful information of the gastric involvement in children with PIPO and to help pave a way to the patients enteral feeding.

PORT have been negotiating with Alimetry, the Manufacturers of the equipment, and have obtained an enhanced deal for GOSH.

PORT will be funding the important state of the art Paediatric Diagnostic Equipment for GOSH early 2026 at a cost of £31,228.50 inclusive of VAT (2025 price, and is subject to potential change). PORT awaits NHS/GOSH approval to enable PORT to fund Alimetry purchase

Continued/…...

Page 6

PSEUDO OBSTRUCTION RESEARCH TRUST

Report of the Trustees (continued) for the year ended 31st March 2025

PORT Website Update

Our website was originally constructed in 2007 and the system had become of an age where it was in need of replacement / restructuring. We are pleased to confirm the transfer to a new website provider has taken place, and the new up to date website is fully operational, from January 2025, the website continues to be a valuable assistant to understanding CIPO.

PORT Charity PIPO booklet update

The information booklet produced by the Pseudo Obstruction Research Trust (PORT), with the help of the Gastroenterology team at GOSH, for children, remains current, and is still in use at GOSH.

The booklet has provided an ‘Easy to read’ source of information for children, and their families from PORT and GOSH.

The feedback has been very positive, and we are proud to have produced such an informative booklet.

The booklet has been added to our new website page so that it may be accessed remotely online.

Two other Books in relation to CIPO and Living with CIPO have been published by volunteer, and a trustee.

Dr. Nigel Meadows (Retired Paediatric Consultant) has published ‘Tummy Ache should I be Bovvered??’ this publication is also available on-line via Amazon Books, and

Nicola Stewart volunteer (assisted by Dr Mohammed Mutalib consultant gastroenterologist Evelina children’s Hospital) has a paperback published of her book ‘Gut Feeling’.

Facebook Page update

Our private Facebook members page continues, it is a friendly, informative group where families can converse freely, build up relationships with one another which leads to the families feeling less isolated.

This is of paramount importance to help with mental wellbeing, for sufferers. The numbers that have access to this restricted access page continue to steadily grow.

Linked-In

The PORT Charity Linked-In page is now open.

Continued/…...

Page 7

PSEUDO OBSTRUCTION RESEARCH TRUST

Report of the Trustees (continued) for the year ended 31st March 2025

Fund Raising

PORT would like to thank all the efforts of the various fundraisers, and fund-raising events that took place during this accounting period.

Rodeo Restaurant Donations & Fund-raiser collections, Brighton Marathon runners, Coffee mornings, Maharaja Indian Curry night, Zumbathon’s by Everyone active Chilterns Lifestyle Amersham, Thurrock and Drums Bowls club fundraisers.

Barney O’Driscoll has written a song ‘Starving for a Cure’ available on Spotify, and all Royalties are donated to PORT.

PORT has also received a Legacy from a supporter’s estate of £10,000.

- Looking forward Fundraising after year end March 25

Ongoing Rodeo Restaurant donations and Collections for 2025

Maharaja Indian Curry Night 2025

Barney O Driscoll’s song ‘Starving for a CURE’ continued Royalty income for PORT.

PORT have arranged PORT / GOSH PIPO Family fun day at GOSH London 18[th] October 25.

Thurrock and Drums Bowls club have offered continued support 2025.

The Fred Whitton Challenge 112 miles Cycle ride of the Lake District 2025

PORT has booked 5 places the Brighton Marathon 2025

PORT has booked 2 places for the London Marathon 2026

PORT has booked 5 places for the Rob Burrows Leeds Marathon 2026

Maharaja Restaurant will be having another Indian Curry Night again in 2026

Approval

This report was approved by the Trustees on 16th January 2026 and signed on their behalf by:

S Stewart

R Stanier

……………………………………………….. ……………………………………………….. S Stewart R Stanier Trustee Trustee

Page 8

PSEUDO OBSTRUCTION RESEARCH TRUST

Independent Examiner's Report to the Trustees of Pseudo Obstruction Research Trust

I report on the accounts of the Trust for the Year ended 31st March 2025, which are set out on pages 10 and 11.

Respective responsibilities of trustees and examiner

The charity's trustees are responsible for the preparation of the accounts. The charity's trustees consider that an audit is not required for this year (under section 43(2) of the Charities Act 1993 (the Act)) and that an independent examination is needed.

It is my responsibility to:

Basis of independent examiner's report

My examination was carried out in accordance with the General Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a 'true and fair' view and the report is limited to those matters set out in the statement below.

Independent examiner's statement

In the course of my examination, no matter has come to my attention:

have not been met; or

Tim Horner

16th January 2026

TIM HORNER FCCA Chartered Certified Accountant

55 Crown Street Brentwood Essex CM14 4BD

Page 7

PSEUDO OBSTRUCTION RESEARCH TRUST

Receipts and payments account for the year ended 31st March 2025

Receipts
General donations and fundraising proceeds
Internet donations
Website commissions
Bank interest received
Total receipts
Payments
Contributions towards medical research
Expenses
Public liability insurance
Computer and website costs
Sundry expenses
Total payments
Net receipts / (expenses)
Cash funds brought forward
Cash funds carried forward
Year
Year
ended
ended
31/03/25
31/03/24
Unrestricted
Unrestricted
Funds
Funds
£
£
17,029
13,694
18,379
18,808
-
78
5,888
5,510
41,296
38,090
-
-
-
-
151
151
202
90
118
178
471
419
40,825
37,671
290,649
252,978
331,474
290,649

Page 10

PSEUDO OBSTRUCTION RESEARCH TRUST

Statement of assets and liabilities as at 31st March 2025

Assets
Bank account balances
Prepaid expenses
Liabilities
Accrued expenses
Net assets
Reserves
Unrestricted funds
£
£
330,514
960
331,474
-
331,474
331,474
331,474
2025
£
£
290,649
290,649
-
290,649
290,649
290,649
2024

These accounts were approved by the Trustees on 16th January 2026 and signed on their behalf by:

S Stewart ……………………………………………….. S Stewart Trustee

R Stanier

……………………………………………….. R Stanier Trustee

Page 11