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2022-12-31-accounts

Fowler’s Syndrome UK (“FSUK”) Annual Trustee Report

UK Registered Charity Charity number: 1196903

27 OLD GLOUCESTER STREET LONDON WC1N 3AX

UNITED KINGDOM

For the financial period: 3 December 2021 to 31 December 2022

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CONTENTS

CONTENTS
EXECUTIVE SUMMARY 3
ABOUT FOWLER’S SYNDROME AND FOWLER’S SYNDROME UK (FSUK) 4
FINANCIAL ACCOUNTS 6
REVIEW OF ACTIVITIES AND ACHIEVEMENTS 8
CHARITY STRUCTURE, MANAGEMENT AND GOVERNANCE 10
INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS 12
KEY INDIVIDUALS 14

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EXECUTIVE SUMMARY

Since registering the charity, substantial work has gone into laying the foundation for success, both for Fowler’s Syndrome UK (“FSUK”) and for the growing community it supports. Achievements reached to date are ‘firsts’ in the advancement of Fowler’s Syndrome awareness. Some key highlights include:

The charity’s income for the financial period was GBP 40,724 with total expenditure kept lean at GBP 897. Income primarily came from the grant of GBP 30,000 as well as from donations. The charity’s results for its first financial year ending on 31 December 2022 are deemed satisfactory.

Going into 2023, the charity will continue its effort to secure future funding via grants and donations, with the aim of furthering initiatives which promote the charity’s mission, vision and objectives. Securing sizable grants in the future may allow the charity to onboard temporary and eventually paid employees, which will in turn enhance the available resources for day-to-day operations and reduce the dependency on voluntary efforts.

The Board of Trustees of FSUK presents the first annual report for the time period of 3 December 2021 to 31 December 2022, and confirms that, to the best of our knowledge, it complies with the requirements of the Charities Act 2022.

Signed: 27/10/2023.

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ABOUT FOWLER’S SYNDROME AND FOWLER’S SYNDROME UK (FSUK)

Fowler’s Syndrome UK (“FSUK”) is a unique patient and clinician led charity that works to raise awareness, promote education and encourage research into the debilitating bladder condition: Fowler’s Syndrome.

What is Fowler’s Syndrome?

Fowler’s Syndrome (sometimes known as idiopathic chronic urinary retention) is a condition in which women have problems passing urine due to a difficulty in relaxing the urinary sphincter and coordinating urination. The condition causes full or partial urinary retention and solely affects women[1] . The peak of onset is 26 years of age. It was first described by Professor Clare Fowler in 1985.

Fowler’s Syndrome was seen as a psychological condition until 1985, and is still desperately under-researched, under-funded and under-treated, with urinary retention in women being poorly understood compared to urinary retention in men.

We estimate that there are in excess of 20,000 women in the UK suffering from, but not necessarily diagnosed with, the condition. Due to a lack of awareness and guidelines amongst health professionals, it takes on average 3.8 years for a patient to be correctly diagnosed and receive the treatment they need.

About FSUK

FSUK, a registered charity since 3 December 2021, offers multi-faceted, inclusive, unparalleled access to healthcare resources for all women with Fowler’s Syndrome, or chronic idiopathic urinary retention.

To the best of our knowledge, FSUK is the only charity supporting Fowler’s Syndrome globally, and as a result, women with the condition have been left without support, information or resources. Current resources for women with Fowler’s Syndrome are scarce, with the majority of specialists based in limited centres, where there is a significant waiting time for referral. FSUK has started to bridge the gap between what the NHS offers and what patients actually need. When we first set up FSUK, we surveyed 200 women on what they would like from a charity. The overwhelming response was more information, more resources and a community/helpline – we made these the heart of our mission, vision and values. Results showed:

1 Women and Assigned Females at Birth (“AFAB”).

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Syndrome. Once diagnosed, there are few resources available for patients and limited treatment options. Many women feel alone and unsupported.

These are the women FSUK are supporting; they may not have been diagnosed with Fowler’s Syndrome yet and may have been deterred from receiving care due to stigma.

FSUK’s mission, vision and objectives

FSUK’s mission is to provide resources, promote education and facilitate research into Fowler’s Syndrome; such that women with the condition have stigma-free access to a timely diagnosis, suitable and effective treatment options, care and psychological support.

FSUK’s vision is to change the clinical landscape for women with Fowler’s Syndrome.

FSUK’s objectives are:

A central pillar of our values is that resources need to be free, readily available, scientifically driven and engaging for diverse audiences. We offer multichannel access to information and offer support and education to patients, professionals and the general public. Our trustees agree that in order to execute all of the above accurately, we need to ensure we work with a variety of medical professionals to help identify research gaps and unmet needs of women living with Fowler’s Syndrome, provide expert analysis on topics related to Fowler’s Syndrome, conduct surveys and provide access to database search facilities, as well as creating deliverables addressing the needs of Fowler’s sufferers in the areas of science, support, and education. Note we acknowledge the formal Fowler’s Syndrome diagnosis but also support women with urinary retention, whatever the cause.

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FINANCIAL ACCOUNTS

At the end of the year (December 2022), the charity received a grant for GBP 30,000 from The Fore to assist in enabling the Founder to take a salary to continue the work that was previously done voluntarily. Salary payments are expected to be seen in the charity’s payments for next year’s financial accounts.

Aside from the grant, the charity has generated income through the sale of branded T-shirts, however, most of the remaining income comes in the form of donations, through individual fundraising efforts. As the charity matures over the coming financial periods, the aim is to increase income via securing grants and donations.

Operational costs were fairly lean due to the use of volunteers; however, reviews are being conducted to assess whether technical costs can be reduced in 2023. The charity’s running costs are anticipated to increase over time as the organisation will look to convert voluntary roles into temporary employment. This is to allow for FSUK to achieve its ambitious objectives. Such employment, however, will be subject to securing funding while maintaining sufficient financial headroom. It is imperative that the charity holds sufficient liquidity reserves before it onboards sizable permanent recurring expense commitments such as for employment.

Kindly find below the financial accounts statement for the financial year.

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The charity held cash equivalents of GBP 39,941 as at year-end with a loan amount outstanding of GBP 114. The loan relates to reimbursable items from software packages needed to run day-to-day operations of the charity. In addition to this, the charity may be charged for historical website domain and hosting costs. Such charges are not expected to have a material impact on the charity’s financial situation. Also refer to the balance statement below.

Accounting Policies

Basis of Preparation: The Receipts and Payments Account and Statement of Assets and Liabilities have been prepared under historical accounting convention.

Funds: All funds are unrestricted.

Income and Expenditure: Both are shown when received or paid with the exception of loans which are recorded when they were incurred rather than paid.

Reserves: The charity seeks to keep a reasonable reserve at any given time to maintain its ongoing solvency. Cash management and available reserves are monitored on an ongoing basis. As time progresses, a detailed cash reserve policy is expected to be defined.

Accounting Period: The start date of the Charity’s accounting period aligns with the point at which the Charity was incorporated. Additionally, with this being the Charity’s first accounting period (therefore having the flexibility to define the dates thereof, so long as it is no shorter than 6 months and no longer than 18 months), along with the desire to align with the calendar year, the Charity has defined its accounting end date as 31 December, making the accounting period for this first accounting period c. 13 months. Subsequent accounting years will be 12 months following the calendar year (1 January to 31 December).

Trustee Emoluments: The Trustees receive no remuneration or reimbursement for personal expenses from the Charity.

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REVIEW OF ACTIVITIES AND ACHIEVEMENTS

Several key achievements have been reached during the charity’s first financial year. Many of these have laid the foundation for future successes to come.

Establishment of the Medical Board

The convening of the Medical Board is an impactful achievement to date that informs, influences and enables FSUK to deliver on its Mission and Objectives. The Medical Board is made up of 11 healthcare professionals; Consultant neurologists and surgeon experts in the field of urology. We are very proud that Professor Clare Fowler CBE sits on this board in the capacity of patron of the charity.

Definition of Fowler’s Syndrome

A new consensus definition for Fowler’s Syndrome was drafted, following a series of impactful meetings held by FSUK with healthcare professionals and patient partners. This new definition is recognised as more inclusive and containing references to CUIR (Chronic Idiopathic Urinary Retention). It has been ratified by the Medical Board and incorporated into FSUK literature and will be disseminated to BAUS and other medical bodies in due course. The widening of this definition is a critical milestone in ensuring more women are diagnosed correctly and that they receive the treatment they need.

Provide Support and Resources

Social Media

FSUK has established a social media presence that is considered a cornerstone of the Fowler’s Syndrome community. Instagram followers reached 928 while Facebook followers stood at 835 in December 2022. Whilst FSUK is currently a UK based charity, it is gaining followers and interest internationally.

FSUK website

FSUK launched its website in 2021 and hosts a library of information and webinars about the condition as well as important information about the charity itself. The site is easily located and is receiving interest and visits from viewers across the world.

Promote awareness, education and training

FSUK Ambassador

FSUK has partnered with @ellenextdoor as the ambassador for the charity. Elle Adams has Fowler’s Syndrome. She is a lifestyle curator on social media, with 120,000 followers on Instagram. Her reels have garnered huge interest in FSUK. Her most popular reel featuring FSUK reached +100,000 accounts and received +4,000 likes.

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Webinars

FSUK are creating a world first series of webinars on Fowler’s Syndrome. These webinars will be labelled according to the level of scientific material they contain and are aimed at both patients and clinicians. Many clinicians have limited to no understanding of Fowler’s Syndrome, meaning foundational information is critical for all parties. The initial webinars start with An Introduction to Fowler’s Syndrome and as they progress will disseminate the latest thinking on the condition. Our aim is to provide barrier-free access to the latest scientific information.

Encourage, Commission and Facilitate Research

Patient Survey

In December 2021, FSUK conducted what is thought to be the largest ever survey of women with Fowler’s Syndrome. The findings of this survey will be written into a paper by Dr Ingrid Hoeritzauer and Dr Emily Cox and is expected to be published in late 2023. The survey is informing much of FSUK’s strategy and objectives.

Roundtable on Fowler’s Syndrome

In August 2022, FSUK held a roundtable event on ‘Fowler’s Syndrome and Stigma’ with Dr Caoimhe McLoughlin and 12 women from the Fowler’s community. The session explored the stigma experienced by patients with Fowler’s Syndrome. The purpose was to gather information to help inform healthcare professionals and patients on where stigma exists and what we can do about it. Insights have informed several elements of the charity’s work including the patient leaflet and the consensus roundtable.

Fundraising

In December 2022, FSUK was successful in securing a grant from The Fore, a charity committed to supporting small charities. The grant enabled FSUK to employ founding member and charity CEO, Danielle Coombe, during the following financial year (2023).

Fundraising events held by the community have increased year-on-year and are expected to account for a larger proportion of income over time. The charity will aim to raise additional capital via fundraising events going into the next financial year.

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CHARITY STRUCTURE, MANAGEMENT AND GOVERNANCE

FSUK currently has a team of Trustees whose skills include finance, fundraising, HR, marketing, volunteer management and digital. Trustee meetings are held at least bi-annually. In addition to a small management team and Trustee Board, FSUK has a Medical Board. Our Medical Board is led by consultant Urologist Mr. David Ellis and includes esteemed professors such as Professor Jalesh N. Panicker of UCLh. The Medical Board comprises a wide cross section of specialties, including urology, gynaecology, neurology, psychology, and psychiatry. The Charity Patron is Professor Clare Fowler CBE, the eminent uro-neurologist who first described the condition. See members of the Medical Board below.

FSUK Medical Board FSUK Medical Board FSUK Medical Board
Prof. Clare Fowler (PATRON) Emeritus professor of Neurology University College Hospital, London
Mr. David Ellis Urologist West Middlesex University Hospital
Prof. Jalesh Panicker Professor of Neurology University College Hospital, London
Dr. Caroline Selai Chartered Psychologist University College Hospital, London
Dr. Ingrid Hoeritzauer Consultant Neurologist University of Edinburgh
Prof. Jon Stone Consultant Neurologist University of Edinburgh
Dr. Elisabeth Adams Consultant Uro-gynaecologist Nuffield, Bristol
Dr. Caoimhe McLoughlin Consultant Neuro-psychiatrist University of Edinburgh
Ellen Thompson 3rd year Medical student St George's Hospital, Tooting.
Ms. Helen Simpson Consultant Urological surgeon Victoria Hospital, Fife
Mr. Kostas Charitopoulos Consultant Urological surgeon West Middlesex University Hospital

The charity’s CEO is responsible for the day-to-day activities[2] , and is supported by members of the Medical Board as well as by volunteers assisting with functions such as Finance, Digital, etc. The charity, including the role of CEO, are ultimately overseen and governed by the Board of Trustees. Kindly also refer to the organisational chart on the following page.

2 Danielle Coombe, Founder, was permanently hired as the charity’s CEO post year-end in 2023.

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Trustee Recruitment and Policies:

FSUK recognises that an effective Board of Trustees are essential if FSUK is to be successful in achieving its mission. Our board members must seek to be representative of the community we serve. FSUK’s Trustee Board Recruitment policy sets out how FSUK intends to recruit a robust and effective board. Board members should possess an appropriate mix of skills and experience to provide the necessary breadth and depth of knowledge and experience to meet the board’s responsibilities and objectives. We aim for a board composition that will reflect the diversity we see in the community. We embrace and encourage differences in race, nationality, ethnicity, marital or civil partnership status, caring responsibilities, disability, age, gender identity, social class, sexual orientation, or religion/belief. Procedure: The board shall, at least annually, assess its composition in reference to:

Should the board identify areas where there are perceived gaps in skills, knowledge, and experience, they shall attempt to recruit from FSUK networks, collecting suggestions from members and stakeholders to draw up a list of suitable candidates. The board may also advertise on FSUK’s volunteer’s webpage or use external advisors to assist in the process for board openings:

In addition to FSUK’s Trustee Board Recruitment policy, the charity holds numerous policies covering areas such as, but not limited to, Social Media, Third Party Complaints, Volunteering, Diversity and Inclusion, Donation Gift Acceptance, and Privacy.

FSUK is a Charitable Incorporated Organisation registered on 3 December 2021.

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KEY INDIVIDUALS

CHARITY TRUSTEES:

FOUNDER & CEO:

Danielle Coombe (voluntary in 2022; permanently hired in the financial year 2023)

FINANCE:

Katie Parry (voluntary)

DIGITAL:

Laura Madden (voluntary)

PATIENT COORDINATOR:

Rachel Ingram (voluntary)

CONTACT DETAILS:

27 Old Gloucester Street, WC1N 3AX London, United Kingdom Email: hello@fowlerssyndrome.co.uk Website: www.fowlerssyndrome.co.uk

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