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FOWLER’S SYNDROME UK (FSUK) ANNUAL TRUSTEE REPORT 2023

UK registered charity Charity number: 1196903

London Borough of Richmond upon Thames

42 York Street

Twickenham TW1 3BW

For the financial period: 1 January 2023 to 31 December 2023

EXECUTIVE SUMMARY ............................................................................................................... 3 ABOUT FOWLER’S SYNDROME AND FOWLER’S SYNDROME UK (FSUK) ................................... 5 FINANCIAL ACCOUNTS ............................................................................................................... 7 REVIEW OF ACTIVITIES AND ACHIEVEMENTS ............................................................................ 9 CHARITY STRUCTURE, MANAGEMENT AND GOVERNANCE .................................................... 14 INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS ...................................................... 16 KEY INDIVIDUALS ..................................................................................................................... 18

EXECUTIVE SUMMARY

We are delighted to present the Annual Trustee Report 2023 for Fowler’s Syndrome UK (FSUK). I am new to the position of Chair but not new to FSUK, having worked with FSUK for two years and with patients with Fowler’s Syndrome as a neurologist for nine years before that.

This year has been a pivotal one for FSUK. As a patient led charity, we continue to put women with Fowler’s Syndrome at the heart of everything we do. Our focus on empowering those with Fowler’s Syndrome has driven our efforts to increase public awareness and expand our research initiatives.

Key Achievements:

1. Increased Public Awareness

As Chair of the Board of Trustees, I am proud of the work we have done to engage with both the medical community and the public. Our outreach efforts have grown, with more stories shared on social media and a noticeable increase in public engagement. For instance thanks to FSUK ambassador Elle Adams (@elleadams), our social media campaigns have reached over 20,000 people this year, significantly increasing engagement and awareness. This is crucial, as raising awareness is a key part of our mission; too few people, including healthcare professionals, are familiar with Fowler’s Syndrome. By expanding our outreach we are ensuring that more women are diagnosed correctly and earlier, leading to better treatment outcomes.

2. Research Advocacy

Alongside awareness, research has been a major focus this year. We have made significant progress in advocating for increasing funding for research into the causes and treatments of Fowler’s Syndrome, and funding to support women with the condition. Our participation in important meetings, such as a two day national workshop to create non-surgical treatment recommendations for patients with Fowler’s Syndrome, has enabled us to build partnerships with medical professionals and research institutions (University of Edinburgh, UCLh, St George’s). These engagements have resulted in increased interest from research institutions to prioritise studies related to Fowler’s Syndrome, representing a significant step forward for our advocacy efforts.

3. Educational Resources

FSUK has hosted webinars featuring experts in women’s health and Fowler’s Syndrome. Professor Fowler, who Fowler’s Syndrome is named after, created a film about Fowler’s Syndrome for FSUK to increase awareness of the condition.

4. Enhancing Governance

Equally important has been our work in strengthening our governance. We have implemented a range of policies that support the effective governance and operation of FSUK. These include a Social Media Policy, Diversity and Inclusion Policy, and Privacy Policy. Each policy has been designed to enhance transparency, avoid ethical conflict, and safeguard the rights of women with Fowler’s Syndrome. Our policies help to create a framework that fosters trust and accountability, guiding our interactions with stakeholders and the public. These policies ensure that FSUK continues to operate with transparency and integrity, always putting the needs of women with Fowler’s Syndrome first.

5. Fundraising

Fundraising has been a crucial focus for FSUK this year, enabling us to expand our initiatives and support of women with Fowler’s Syndrome. Our community-driven efforts such as the Wild Run West, where participants completed five marathons in 72 hours and raised over £19,514, demonstrated the power of grassroots fundraising. Special thanks to Aoife Madden. Additionally, individual marathons, including the Manchester Marathon and London Marathon contributed another £2,775 combined, showcasing the commitment of our supporters.

The charity’s income for the financial period was £29,820, with expenditure totalling £28,074. Income primarily came from grants and donations. While the charity aims to boost its income going forward, the results for the financial year ending on 31 December 2023 are deemed satisfactory. Going into 2024, the charity will focus on securing funding with particular focus on grants, with the aim of furthering initiatives which promote the charity’s mission, vision and objectives. The charity expects to onboard paid employees to support the CEO in driving initiatives and the daily operations. Notably, it is also expected that the charity will establish a helpline in 2024. We look forward to reporting on the charity’s progress in the upcoming report covering the next financial year of 2024. In closing, I want to extend my thanks to the CEO, our dedicated volunteers, supporters, and to the Board of Trustees.

The Board of Trustees of FSUK presents the annual report for the charity’s second financial period of 1 January 2023 to 31 December 2023, and confirms that it complies with the requirements of the Charities Act 2022.

Anne Ingrid Hoeritzauer, Chair of Fowler’s Syndrome UK (FSUK) October 2024

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

Fowler’s Syndrome UK (FSUK), established by Danielle Coombe in December 2021, is a unique patient and clinician led charity that works to raise awareness, promote education and encourage research into the debilitating bladder condition of Fowler’s Syndrome.

What is Fowler’s Syndrome?

Fowler’s Syndrome (sometimes known as chronic idiopathic 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.

We have found that: i) 85% of women with Fowler’s Syndrome said the condition has had a severe or devastating impact on their life; ii) there is low awareness of the condition among the medical community outside of specialist hospitals. Only an estimated 30% of GPs are aware of Fowler’s Syndrome; iii) once diagnosed, there are few resources available for patients and limited treatment options. Many women feel alone and unsupported; and iv) 76% of those with Fowler’s Syndrome have been told their urinary symptoms are due to anxiety or ‘all in their head’.

FSUK’s mission, vision and objectives :

FSUK’s mission is to provide resources, promote education and facilitate research into Fowler’s Syndrome; so 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.

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

FSUK’s objectives are:

to provide support and resources to both patients and professionals regarding the symptoms, diagnosis, management and treatment of the condition
to promote national level awareness, education and training that is scientifically driven and engaging on Fowler’s Syndrome and related conditions
to encourage, commission and facilitate research on Fowler’s Syndrome and related conditions, causes and treatments.

A central pillar of our values is that resources are free, readily available, scientifically driven and engaging for diverse audiences. We offer multi-channel access to information and offer support and education to patients, professionals and the general public. The charity executes all of the above while working with a variety of medical professionals to help identify research gaps and unmet needs of women living with Fowler’s Syndrome. We provide expert analysis on topics related to Fowler’s Syndrome, conduct surveys and provide access to database search facilities and deliverables addressing the needs of women with Fowler’s Syndrome in the areas of science, support, and education. We acknowledge the formal Fowler’s Syndrome diagnosis but support all women with urinary retention, whatever the cause.

FINANCIAL ACCOUNTS

FSUK’s income was £29,820 for the financial year ending on 31 December 2023, down from £40,724 in the previous financial year. Income was primarily driven by donations (£25,735), of which £19,514 generously came from The Wild Run West. In addition, a grant of £4,000 was received from The D’Oyly Carte Charitable Trust, intended for FSUK running costs. Only de minimis income was received from the charity’s activities and operations in line with the fundraising strategy to focus on grants and donations going forward.

The charity’s costs increased to £28,074 in 2023, mainly driven by operational costs, including CEO salary payments starting in the year. CEO employment costs for the year were more than covered for from the grant of £30,000 generously received from The Fore in the previous financial year. Other operational costs include the charity’s occupation of shared office space and costs related to travel, marketing and fundraising activities.

Going into 2024, FSUK will focus its fundraising strategy on grants with income from such expected to increase materially over the coming years. Subject to securing grants, operational costs are also expected to increase as more paid employees are expected to be onboarded to support FSUK’s operations and activities.

Kindly find below the financial accounts statement for the financial year: 1 January 2023 to 31 December 2023:

The charity held cash equivalents of £39,827 at the beginning of the financial year. FSUK’s cash balance net of liabilities was £41,573 as at 31 December 2023, resulting in a net movement of £1,746. The loan from the CEO outstanding at the end of 2022 for software packages needed for operations was repaid in 2023, with the charity’s liabilities solely related to remuneration payments as at end of 2023.

Kindly find below the balance statement for the financial year: 1 January 2023 to 31 December 2023:

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

Income and Expenditure: Both are shown when received or 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. The charity’s cash reserve policy focuses on keeping a reasonable and sufficient buffer at any time and the charity will not commit to long term expenses for which funding will be considered highly uncertain.

Accounting period: The charity’s accounting period is 1 January to 31 December following the calendar year.

Trustee emoluments: The Trustees receive no remuneration or reimbursement for personal expenses from the charity.

REVIEW OF ACTIVITIES AND ACHIEVEMENTS

2023 was a transformative year for FSUK. Due to receiving The Fore grant at the end of 2023, Danielle Coombe was employed by FSUK from April 2023, resulting in our biggest year of growth yet. Our three key objectives are to: 1) provide support and resources; 2) promote awareness; and 3) encourage research. In the following sections, please find selected highlights covering each of these categories as well as an update on fundraising activities.

1. Provide Support and Resources

Patient Information Leaflet

A free, downloadable, patient information leaflet launched on 26 May 2023. The 4-page leaflet provides an overview of what Fowler’s Syndrome is, what symptoms may be experienced, as well as information on different treatment options available. The leaflet also includes information on co-existing conditions and resources, which women have found helpful to present to the medical professionals caring for them. The Patient Information leaflet was created by FSUK’s Medical Board, led by Professor Jalesh N. Panicker, and agreed with FSUK and FSUK’s Patient Partners.

Film

On 16 November 2023, we launched a short film featuring Professor Clare Fowler. The film included Professor Fowler’s journey to defining Fowler’s Syndrome, her thoughts on why knowledge is power and the abnormalities in EMG and urethral pressure testing that led to women finally getting recognition of what their condition was. The film had at least 901 Instagram views and 235 YouTube views.

Webinars

We provide barrier-free access to the latest scientific information and in 2023 started a world first series of webinars on Fowler’s Syndrome. The initial webinar was An Introduction to Fowler’s Syndrome, by Mr. David Ellis, and post year end in February 2024 we launched Fowler’s Syndrome and urinary retention in women , by Professor Jalesh N. Panicker.

Social Media

Our social media page is a growing community where those with Fowler’s, and their families and clinicians, can find information, support, guidance, signposting, news, events, resources and more. Our social media following has grown by 29% in the last year, with 1,259 (vs. 928 in December 2022) followers on Instagram and 1,012 (vs. 835 December 2022) followers on Facebook in December 2023. For the same time period, our reach was c. 3,800 on Facebook

and c. 8,200 individuals on Instagram. Whilst FSUK is currently a UK based charity, it supports women internationally and has international followers and interest. Our social media highlight was Fowler's February, our community’s opportunity to raise extra awareness around Fowler's Syndrome together.

FSUK Website

FSUK launched its website in 2021. It hosts a library of information about the condition as well as important information about the charity itself. The site is easily located and receives interest and visits from users across the world. In 2023 we added several sections in our resources area, including a patient information leaflet, webinars, a film of Professor Fowler, and a section on Functional Neurological Disorder (FND).

Anxiety and Fowler’s Syndrome

77% of women with Fowler’s Syndrome also have a diagnosis of anxiety. Our survey showed that 96% of women experienced stigma around the condition, and 76% of women have been told the condition is ‘all in their heads’. It is vital for us to dispel myths around mental health and Fowler’s Syndrome, and our Anxiety and Fowler’s Syndrome series is a vital part of that stigma-breaking. In December 2023 we launched a short film featuring our excellent ambassador Elle Adams (@ellenextdoor) discussing Fowler’s and anxiety with Dr. Caroline Selai, Senior Lecturer in Clinical Neuroscience at UCL, chartered psychologist and Associate Fellow of the British Psychological Society.

2. Promote Awareness

FSUK Ambassador

FSUK are delighted to have Elle Adams, @ellenextdoor, as our ambassador. Elle has Fowler’s Syndrome and is a lifestyle content creator, with 120,000 followers on Instagram as of December 2023. Her reels have garnered immense interest in FSUK. Her most popular reel featuring FSUK reached +100,000 accounts and received +4,000 likes. We are so grateful for Elle’s involvement.

Press

We have had some fantastic press this year thanks to Elle Adams, FSUK’s ambassador, and Rachel Ingram, FSUK trustee. Highlights include articles in The Sun, The Express, The Daily Mail, The Mirror, Metro, and The Daily Star, with a total reach of 4.1 million people. Notable articles include Elle’s Daily Mail piece ‘I woke up one day unable to urinate - now I need a

bladder pacemaker’, published on 22 March 2023, and Rachel Ingram’s Metro piece, ‘After giving birth I couldn’t wee for 5 years’, published on 7 June 2023.

3. Encourage, Commission and Facilitate Research

Medical Board

The Medical Board is made up of 9 healthcare professionals in the field of urology, neurology, psychology, psychiatry and gynaecology. We are very proud that Professor Clare Fowler CBE sits on the board as Patron of the charity. We are so grateful to all of our medical board.

Definition of Fowler’s Syndrome

A new consensus definition for Fowler’s Syndrome was created by FSUK’s incredible Medical Board, following a series of impactful meetings held by FSUK with healthcare professionals and patient partners. The new definition is recognised as more inclusive and contains references to Chronic Idiopathic Urinary Retention (CIUR). 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.

Research

In December 2021, FSUK conducted the largest ever survey of women with Fowler’s Syndrome. In 2023 this was written up for publication by Dr. Ingrid Hoeritzauer and is expected to be published in late 2024. The survey is informing much of FSUK’s strategy and objectives.

Survey on Non-Surgical Interventions

To improve knowledge about treatments for Fowler’s Syndrome, a survey of neurophysiotherapists and specialist women’s health physiotherapists was undertaken, investigating what nonsurgical treatments professionals are using in patients with Fowler’s Syndrome. This was led by Dr. Ingrid Hoeritzauer and is expected to be published in 2024.

First ever Consensus Meeting on Fowler’s Syndrome

A UK national meeting with physiotherapists, urologists, occupational therapists, specialist nurses, neurologists, a psychiatrist and psychologist occurred over two days in September 2023 to create the first consensus recommendation for non-surgical treatment in Fowler’s Syndrome. The meeting was led by Dr. Ingrid Hoeritzauer, Dr. Helen Simpson and Dr. Caoimhe Mcloughlin. This is being written up and is expected to be published in 2025.

Webinar on Fowler’s Syndrome and FND

In June 2023, FSUK held a live webinar event on ‘Fowler’s Syndrome and Functional neurological Disorder (FND)’ led by FND expert, Professor Jon Stone. The session explored the comorbidities experienced by patients with Fowler’s Syndrome and Functional Neurological Disorder. The purpose was to inform those with FND about Fowler’s Syndrome, and inform those with Fowler’s about FND.

4. Fundraising

Fundraising events held by the community have increased year-on-year and are expected to account for a larger proportion of income over time alongside grants.

Wild Run West

In March 2023, Ailbhe, Eimear and Bob from the brilliant Wild Run West ran 5 marathons in 72 hours. They raised a monumental £19,514 for FSUK. The Wild Run West said ‘Fowler’s Syndrome is a little known chronic bladder condition that has massively impacted the life of our fantastic friend Aoife, and this charity is working tirelessly to improve the outcome for so many women.’ We are deeply grateful for this contribution to FSUK. A massive thank you goes out to everyone who donated, and especially the incredible runners Ailbhe, Eimear and Bob, and the brilliant Aoife Madden of @bisforbladder. You can see more of their incredible feat on @thewildrunwest on Instagram.

Amy Curwen

In April 2023, the inspirational Amy Curwen ran the London Marathon for FSUK, and raised an amazing £2,175. Amy said: ‘In a moment of insanity, in October, after spending 6 weeks in hospital over the course of summer, I signed up for the London Marathon. In a further moment of insanity, after getting a place, despite only being able to run for 30 seconds, I decided I was going to do it. Not thinking that was enough, I also decided in mid-January to give up chocolate until the marathon. So on 23 April I will be running the London Marathon for Fowler’s Syndrome UK. FSUK is a charity very close to my heart as I myself suffer from Fowler’s Syndrome. In 2013 at the age of 19 my life changed overnight, as my bladder stopped working. After 6 years of suffering with pain, spasms and constant infections my Fowler’s led to me having my bladder removed and a Urostomy Stoma formed in 2019’. Amy, we think “urinecredible”.

Andy and Emma Harrop

In April 2023 Andy and Emma ran the Manchester Marathon in support of FSUK. This dynamic duo also ran for us in 2022 and we cannot thank them enough for their continued support. They raised a brilliant £600.

Emma Hathaway

In July 2023, Emma Hathaway at The Greyhound Freehouse and Dining in Dorset ran a pub quiz ‘raising money for a charity that’s close to our hearts’. They raised £1,125 for FSUK. Thank you so much to everyone at the Greyhound!

Grants

A grant of £4,000 was received from The D’Oyly Carte Charitable Trust in December 2023. We are immensely grateful to the foundation for their support of our continued work.

Going into 2024, we will focus our fundraising strategy on securing grants with several notable prospective funders in the pipeline.

CHARITY STRUCTURE, MANAGEMENT AND GOVERNANCE

Danielle Coombe, the charity’s Founder and CEO, is responsible for the strategy and day-today activities as well as the running of the charity. She is supported by members of the Medical Board as well as by volunteers. The charity is governed by its Board of Trustees.

FSUK has a team of Trustees whose skills include finance, fundraising, HR, marketing, volunteer management and digital. Trustee meetings are held at least annually. New members Jesper Jensen and Marguerite Michael joined in May and June 2023, respectively. Danielle Coombe resigned from her position on the Board of Trustees as she became a paid employee in the function of CEO.

In addition to the management team and Trustee Board, FSUK has a stellar Medical Board. 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
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. Caoimhe McLoughlin	Consultant Neuro-psychiatrist	University of Edinburgh
Ellen Thompson	5th year Medical student	St George's Hospital, Tooting.
Mr. Kostas Charitopoulos	Consultant Urological surgeon	West Middlesex University Hospital

Trustee Recruitment and Policies:

FSUK recognises that an effective Board of Trustees is essential for FSUK 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 our 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.

The board shall annually assess its composition in reference to:

Necessary areas of expertise
Balance between experience and newer members
Desirable diversity in relevant areas
Contributions from relevant stakeholders.

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:

All candidates will be evaluated using a standardised process
All candidates will be required to complete an application form which will identify their skills, experience, suitability for the board, as well as any potential conflicts of interest
Appointed members of the Board and the CEO will review, shortlist, and interview appropriate candidates
Identified candidates will be presented to the full board for consideration and recruitment decision and election.

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.

INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS

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KEY INDIVIDUALS

Management:

Board of Trustees:

Contact details:

42 York Street | Twickenham | London Borough of Richmond upon Thames | TW1 3BW Email: hello@fowlerssyndrome.co.uk | Website: www.fowlerssyndrome.co.uk

2023-12-31-accounts