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2025-03-31-accounts

www.panspandasuk.org Charity Number: 1178484 | SC053206

Year ending 31st March 2025

PANS PANDAS UK Annual Report 2024/25

Annual Report | Period ending 31st March 2025

Introduction

I am pleased to present this Annual Report for 2024-25, which as usual describes what the charity has achieved over the last year, and how our income has been used to further our objectives. We have made some great strides this year, and it is my pleasure to outline some of these achievements in this report.

We may be a small team, but we are a powerful one, and before sharing the progress we’ve made, I want to take a moment to recognise the incredible people behind it all.

First, my heartfelt thanks go to our Board of Trustees, whose unwavering commitment ensures that PANS PANDAS UK remains a wellgoverned and forward-thinking organisation. I’m continually inspired by our dedicated staff team, whose passion and perseverance drive our mission forward. It’s truly a privilege to work alongside such talented and compassionate individuals.

I also want to extend sincere appreciation to our amazing volunteers. Your contributions are invaluable. Whether you’ve taken on a fundraising challenge, made a donation, shared a post, contacted your MP, or handed a leaflet to your GP. Every action you have taken has made a difference. The awareness raised and the support we receive are thanks to your efforts, and I am deeply grateful. We are acutely aware of the ongoing cost-of-living crisis and the additional pressures it places on our community. Your continued support during these challenging times is deeply appreciated and never taken for granted.

While you’ll find a full overview of our key achievements later in this report, I’d like to highlight a few milestones that stand out.

Our collaboration with the PANS PANDAS Steering Group has been particularly impactful, with significant progress made toward developing clinical guidelines in partnership with the Royal College of Paediatrics and Child Health (RCPCH). We’re also proud to support the first NHS-led research into PANS and PANDAS through a national surveillance study, which is an important step forward for recognition and understanding of these conditions.

This year also saw the launch of a CPDaccredited GP training module. The uptake has exceeded expectations, clearly demonstrating the demand for education in this area and reinforcing the importance of our ongoing work to support clinical guideline development.

Our teacher training programme continues to grow from strength to strength, now being delivered across the UK. We’re also expanding this work to include tailored training for Educational Psychologists, further helping to ensure that children affected by PANS and PANDAS are better supported in educational settings.

Our Youth Board has been incredibly active,

Annual Report | Period ending 31st March 2025

leading the way with our 2024 Awareness Day campaign, Ask the Experts. This was the first youth-led initiative of its kind internationally, and we’re excited to build on its success by involving even more professionals and young people themselves, as experts by experience in answering questions from our young people.

We’re also expanding our network of in-person support groups, led by our wonderful volunteers. These groups offer vital opportunities for connection and community, helping to combat the isolation that so many families experience. Alongside this, we’ve launched our Friends of PANS PANDAS UK programme, giving us a clearer picture of the community we represent and reminding us that we are indeed stronger together.

Finally, I’d like to share some personal news. In June 2025, I stepped down as Chair of the Board after 7 years as a trustee, to take on the new role of Chief Executive Officer of PANS PANDAS UK.

I’m thrilled to be able to dedicate myself fully to the charity in this capacity and to continue championing the needs of the PANS PANDAS community across the UK.

I’m also pleased that we were able to announce that an existing Trustee, Andrew Koss, will be taking over as Chair. With his significant experience and commitment, I have every confidence that the governance of the organisation will remain as robust as ever.

Warmest regards,

Vicky Burford Chief Executive Officer, formerly Chair of Trustees

PANS PANDAS UK have been so incredibly supportive to us as a family, without them and the PANS PANDAS UK community I don’t know if we would have made it through this hell. This condition is like no other and is often misdiagnosed leaving children disabled unable to leave the house and with no support or treatment options available on the NHS.

Annual Report | Period ending 31st March 2025

This report is laid out in the following manner:

Section 1: What are PANS and PANDAS, and what is PANS PANDAS UK Section 2: This Annual Report - General Section 3: Meeting Our Legal Requirements Section 4: Reference and Administrative Details Section 5: Structure, Governance and Management Section 6: Objectives and Activities Section 7: Achievements and Performance Section 8: Financial Review Section 9: Funds Held as Custodian Trustee on Behalf of Others Section 10: Public Benefit Statement Section 11: Plans for Future Periods Section 12: Signed Statement Section 13: Appendices

Annual Report | Period ending 31st March 2025

Section 1: What are PANS and PANDAS, and what is PANS PANDAS UK?

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Auto-immune, Neuropsychiatric Disorders Associated with Streptococcal Infections) are a set of immune-mediated conditions causing a variety of neuro-psychiatric conditions such as Obsessive-Compulsive Disorder (OCD), tics and eating disorders in addition to other equally distressing symptoms. These are cruel and complex conditions which require a multi-disciplinary team of medical professionals as well as understanding and support from schools, and in some cases social care, to ensure the very best support is offered to affected families.

PANS PANDAS UK (PPUK) operates nationally across the UK and was granted charity status in England and Wales on 22 May 2018 and then in Scotland on 20 March 2024. PPUK has 7 part time employees (3.03 FTE) and utilises the experience of three independent contractors.

Please visit our website for more information: www.panspandasuk.org

PANS PANDAS UK was a lifeline of hope for my family when our daughter suddenly fell unwell with this condition. This charity work tirelessly to raise awareness and support families and young people affected by the devastating condition.

Annual Report | Period ending 31st March 2025

Section 2:

This Annual Report - General

This Annual Report for the financial year 2024-25 explains our aims and how we have gone about achieving them.

It has been prepared in accordance with the applicable legal requirements.

It gives a balanced view of the charity’s structure, aims, objectives, activities and performance. Importantly, it describes our primary sources of funding and describes how the money was spent.

It highlights the main activities we have undertaken.

Section 3: Meeting Our Legal Requirements

SORP (FRS 102) is the Charity Commission’s Statement of Recommended Practice - Accounting and Reporting by Charities. We have therefore prepared this report, and our accounts, in accordance with that guidance, as we were founded after 1 January 2016.

Because we anticipate our income rising in future to above £250k, we have prepared our accounts on an accruals basis. This means that our accounts contain a statement summarising all money received and paid out in the financial year, and a statement of our assets and liabilities at the end of the year. Our accounts have been subject to independent examination.

The detailed legal requirements for this report are set out in The Charities (Accounts and Reports) Regulations 2008 which provide a legal underpinning for many of the recommendations made in the applicable Charities SORP.

The headings used in our report follow this guidance, as follows:

Annual Report | Period ending 31st March 2025

Section 4: Reference and Administrative Details

4.1 The Charity's Name

The Charity's name is PANS PANDAS UK.

4.2 The Charity's Registration Number

PANS PANDAS UK is registered with the Charity Commission for England and Wales: 1178484 and the OCSR in Scotland: SC053206

4.3 The Address of the Principal Office

The Charity does not operate from premises, but by a network of people operating from their own homes. The Charity's formal legal contact in 2024/25 was through the then Chair of Trustees, Mrs Vicky Burford, who can be contacted at vicky.burford@panspandasuk.org or via the Charity’s registered office below.

The Charity’s Registered Office is as follows: Greville House, 10 Jury Street, Warwick CV34 4EW

4.4 Names of Charity's Trustees

Mrs Vicky Burford: resigned as Chair of Trustees on 2 June 2025 Mr Philip Edwin Hall: Treasurer

Mr Andrew Koss: appointed trustee 31 May 2024 appointed to Chair of Trustees 2 June 2025 Mr Chris Derrer: appointed trustee 31 May 2024 Ms Rebecca Huitson: appointed trustee 31 May 2024, resigned 18 April 2025 Mrs Victoria Queralt: appointed trustee 12 October 2024 Diane Palmer: resigned 30 August 2024

No other people served as a charity trustee or custodian trustee between 1 April 2024 and 31 October 2025.

Annual Report | Period ending 31st March 2025

Section 5: Structure, Governance and Management

5.1 The Governing Document

The Charity has a formal Constitution, the founding one being approved by the Charity Commission on 22 May 2018. A review of the Constitution was made by the Trustees in early 2024 with a view to simplifying the document and clarifying our charitable objects.

The Charity is governed by the Board of Trustees which meets via videoconference once per quarter. Minutes are formally recorded following each board meeting. Trustees may be appointed at any time by the Board of Trustees.

The Charity benefits from 7 part-time employees and utilises the expertise of 3 contracted staff to undertake the day to day running of operations.

5.2 Our Organisation Chart

The governance and operational structure of PPUK for the year ending 5th April 2024 is shown on the organisation chart below.

----- Start of picture text -----
Board of Trustees
Phil Hall Andrew Koss Dr Vicky Queralt Chris Derrer Vicky Burford Rebecca Huitson Zoe Van Den Bosch
Treasurer Trustee Safeguarding Lead Trustee Chair of Trustees Trustee Trustee
& On Sabbatical
Operational Team
Line Manager
PANS PANDAS UK Team
Fundraising Team
David Head Tauna Shields Tina Coope Katy Hindson
Finance ManagerContractorvarious Grants and TrustsSophie Dziwinski Community FundraisingLouise Holgate Office Manager18 hours Development LeadEducation22 hours Communications LeadHealth Development &23 hours
Contractor 18 hours
7 hours
Trustees
Part-time Staff
ContractorsVolunteers Helen HuitsonCommunity Champion Social Media & ContentFourie PretoriusAssistant Gillian MathewsonRepresentative forScotland Elizabeth MullengerComms Assistant20 hours
7.5 hours 10 hours Volunteer
various
Teacher Trainer
1 hour
----- End of picture text -----

Annual Report | Period ending 31st March 2025

5.3 Board of Trustees

PPUK is led by the Board of Trustees with a Chair. Trustees may be appointed at any time by the Board. The Board operates by means of trustee meetings, held on a video-conference basis, or physically meeting if necessary.

5.4 Our Operational Team

The work of the charity is carried out by an operational team. As at the end of the financial year, the charity currently has 7 employed staff all working on a part time basis.

Alongside the employed staff, the charity is supported by 3 contracted staff members, Finance Manager, Grants and Trusts Manager and Teacher Trainer.

The total part time hours worked are equivalent to 3.03 full time employees.

The work of the team is also supported by some excellent and committed volunteers.

5.5 Corporate Governance Standards

In this reporting year, PPUK continued developing its corporate governance framework following the board approved plan set out during 2022/23 to ensure that we follow industry-specific best practice standards.

As part of this PPUK is strongly committed to further enhancing its risk management framework, with work actively being undertaken to mitigate risk and help the charity continue to grow and become more resilient.

5.6 Risk Management

Following the implementation of a robust risk management framework for the charity during the previous reporting year, work on a risk identification and assessment process for greater clarity on the charity's risk profile continues. Further developments will be implemented during 2025/2026 to ensure that effective risk management remains fully integrated into the charity's strategic and operational activities.

Annual Report | Period ending 31st March 2025

Section 6: Objectives and Activities

The charity’s purposes concern the medical conditions PANS (Paediatric AcuteOnset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections).

In particular, the objects are:

PANS PANDAS UK have been a great support to us over the last 9 months, and I admire all of the incredible strides forward you are making.

Annual Report | Period ending 31st March 2025

6.2 The Main Activities Undertaken

Some of the more notable achievements over the last year have included the following:

6.2.1 Policy Development

During 2024/25 some significant milestones were met towards improved healthcare for people with PANS and PANDAS in the UK.

6.2.1.1 All Party Parliamentary Group

The PANS PANDAS All Party Parliamentary Group (APPG) was relaunched following the change in Government with 32 members including 4 officers.

6.2.1.2 NHS Scotland

NHS Scotland wrote to outline their support for patients with PANS and PANDAS.

6.2.1.3 Education Briefing Document

PANS PANDAS UK responded to the Children’s Wellbeing and Schools Bill and wrote an Education Briefing Document.

6.2.1.4 Manifesto for Change

PANS PANDAS UK and the PANS PANDAS Steering Group (PPSG) wrote to the Secretary of State for Health and Social Care, Wes Streeting MP. Baroness Merron responded, inviting PANS PANDAS UK, Chair of the APPG Wendy Chamberlain MP and a clinician to meet with her in parliament. We presented a manifesto outlining what needs to change and how that fits within the NHS 10 Year plan.

Annual Report | Period ending 31st March 2025

6.2.2 PANS PANDAS Steering Group

For more information about the PANS PANDAS Steering Group please visit www.theppsg.org.uk

6.2.2.1 Clinical Guidelines Working Group

This year, the PANS Clinical Guideline Development Group was established with support from RCPCH. Two independent co-chairs were appointed, terms of reference established, the scope drafted, consulted on and finalised. A literature review was undertaken (completion due Summer 2025) and work began to identify candidates to participate in the Delphi study.

6.2.2.2 Education, Social Care and Health Working Group

On 23 May 2024, the Education, Social Care, and Health Group (ESCHG) convened its inaugural online meeting. This multidisciplinary group brings together 18 professionals from educational psychology, psychotherapy, social care leadership, teaching, SEND and Inclusion, and commissioning. It is co-chaired by a Designated Clinical Officer and the Education Lead from PANS PANDAS UK.

PANS and PANDAS are complex conditions requiring coordinated, multiagency responses. To address disparities in awareness and support across Local Authorities, The ESCHG is developing a position statement. This will clarify the roles and responsibilities of professionals in health, education, and social care when supporting children and young people with suspected or diagnosed PANS/PANDAS. The statement will also highlight training needs and outline current care and education pathways. The ESCHG has completed a first draft.

6.2.2.3 Research Working Group

The PANS PANDAS Research Working Group was formed to expedite high quality UK research into these conditions. One of the key initiatives of the PANS PANDAS Research Working Group has been to submit applications to the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatry Surveillance Service (CAPSS) to better understand the incidence of PANS and PANDAS in the UK. We await results from the stage 1 application but expect the response to be positive. Subsequent research will centre around early phase treatment and will map out service development including acute presentations, the refractory group of patients and the relapsing group of patients. The intention is that this should lead into early intervention and antibiotic studies.

Annual Report | Period ending 31st March 2025

6.2.3 Rebranded and launched new website

We were delighted to launch our new branding and new website in May 2024 which we hope represents our mission more clearly. Our new website is easier to navigate and contains an accessibility widget to enable as many people as possible to access our resources and information more easily.

6.2.4 Awareness Day ‘ask the experts’ campaign with Youth Board

During Awareness Day our amazing Youth Board asked international expert clinicians some of the questions for which they have been seeking answers. Recordings of the clinicians answering those questions were used as part of our Awareness Day campaign and are now live on our website here: Ask the Experts

6.2.5 Collaboration with Taming Olivia - Youth Board

Our amazing Youth Board has been working closely with OCD support organisation, Taming Olivia, on an exciting creative project to share information about PANS and PANDAS with young people. The Youth Board have co-created a character called Glitch, to represent the conditions and development of a comic strip is underway.

Annual Report | Period ending 31st March 2025

6.2.6 Launched our Friends of PANS PANDAS UK scheme

We launched our Friends of PANS PANDAS UK (FOPP) scheme which is so much more than a regular giving scheme. FOPP will help create a sense of belonging and togetherness, enabling us to use our collective voice, but also providing us with a better understanding of the number of people who we are supporting.

6.2.7 Development of two Community Reference Groups

To ensure that the voices of our communities are at the heart of our work, we established two Community Reference Groups in May 2024, one for England and Wales, and one for Scotland and Northern Ireland. These groups were created to provide a structured and meaningful way for us to listen to, learn from, and collaborate with the people and communities we serve.

6.2.8 Appointment of a CEO

Interviews for a Chief Executive Officer were undertaken and the former Chair of Trustees, Vicky Burford was appointed as CEO, with a start date of June 2025.

6.2.9 Community Survey

A survey of our community to understand better the ways in which they would like us to be communicating with them was undertaken in January 2025. The results of this survey will be shared with our community and used to develop a communications strategy during the next financial year.

6.2.10 CPD Accredited Teacher Training

Due to the popularity of our CPD Accredited Teacher Training, we increased the number of sessions we are delivering and recruited 2 new trainers and one new support assistant. During the 2024/25 financial year we delivered 38 training sessions attended by a total of 1,163 educational professionals.

Thank you for helping us, we will be forever grateful.

Annual Report | Period ending 31st March 2025

6.2.11 Annual Community Fundraising Campaign

In July 2024 our second ‘Choose your Challenge’ campaign took place during the month of July. Living with PANS and PANDAS is a challenge every day, and so we ask people during the month of July to get out of their comfort zones and challenge themselves to do something difficult and raise money for PPUK at the same time. Our incredible community got behind us and raised over £30,000 during the course of this campaign.

6.2.12 CPD Accredited Learning Module for Doctors

We worked closely with MIMS Learning to create a CPD accredited e-learning module for UK healthcare professionals in primary and secondary care.

This short module is the first of its kind and aims to improve awareness of childhood acute neuropsychiatric conditions, describing what PANDAS is and how to diagnose it and what the current recommendations are for treatment. Since launching the PANDAS-specific module in October 2024, MIMS Learning has reported hundreds more completions than they would usually anticipate in a module of this kind. This demonstrates healthcare professionals’ growing interest in learning more about acute neuropsychiatric conditions.

This table demonstrates the number of anticipated views and completions expected within the first 12 months of the module launch (blue) and the actual number of views and completions within only the first 4 months (green).

----- Start of picture text -----
Actual within first 4 months Expected within first 12 months
14000 13614
12000
10000
8000
6000
4000
2000
2000
417 250
0
No of page views No of completions
No of people
----- End of picture text -----

Annual Report | Period ending 31st March 2025

6.2.13 Health and Education Conference Attendance

We attended a variety of health and education related conferences during the 2024/25 financial year including:

6.2.14 Council for Disabled Children

We delivered a presentation to the Council for Disabled Children in September 2024 highlighting the need for greater recognition of PANS and PANDAS within disability and inclusion frameworks. The session sparked valuable connections with other organisations and charities, inspired new initiatives such as our manifesto, and provided an opportunity to share updates on the health and education system streams currently underway.

I could not have survived to this point without the incredible wealth of knowledge offered by the charity.

Annual Report | Period ending 31st March 2025

Section 7: Achievements and Performance

We report on our performance and achievements on several measures.

7.1 Our Main Mission

At PANS PANDAS UK, our purpose is to serve the community affected by PANS and PANDAS. We understand that this community is made up of individuals and families with a wide range of shared experiences, and we are committed to listening and responding to their diverse needs. We try to ensure that everything we do is guided by ongoing engagement with the community, helping to shape our direction and ensure our work remains relevant and impactful.

Our mission is to improve the health and wellbeing of everyone affected by these conditions across the UK.

We work closely with healthcare and education professionals to build knowledge and understanding, so that individuals presenting with symptoms potentially linked to PANS or PANDAS receive appropriate assessment, and those diagnosed have equitable access to care, diagnosis, and treatment, no matter where they live or how much money they have.

We are also committed to providing clear, accessible information and resources to support families and individuals. This includes guidance on diagnosis, healthcare pathways, symptom management, and educational support.

Above all, we are striving for lasting, systemic change, so that everyone affected by PANS or PANDAS receives the excellent, effective, and equitable care they deserve.

7.2 “Members”

We did not have a formal membership scheme in place during the last financial year and so we have used our Facebook support group as our measure. We continue to see a steady growth in numbers joining our Facebook support group year on year.

----- Start of picture text -----
7000
6995
6000 6358
5549
5000
4745
4000
3621
3000
2674
2000
1703
1000
0
2019 2020 2021 2022 2023 2024 2025
----- End of picture text -----

Annual Report | Period ending 31st March 2025

7.3 Our Impact at a glance

----- Start of picture text -----
32
APPG
members
----- End of picture text -----

----- Start of picture text -----
6 Steering groupmeetings held
----- End of picture text -----

----- Start of picture text -----
Royal Colleges
5 [represented]
----- End of picture text -----

----- Start of picture text -----
6
Working Group
meetings held
62
professionals
supporting the
Steering Group work
Awarded
4
financial grants
----- End of picture text -----

----- Start of picture text -----
Updates sent to
People accessing
our website
Local Offers 234
318,328 Local Authorities
151
3,238
people
Professionals
receiving our
274
receiving our
newsletter
quarterly health bulletin
This charity has saved
our family and our sanity
54Friends by providing unwavering
support and help when
we needed it the most.
6,995
People accessing our
Facebook support group Fab charity!
56
38
Volunteers
Teacher training
sessions delivered to educators
Youth board
members 1,163 people
attended
15 teacher
training
Community
Reference
GP Training
Group
members page
13,614 views
417 completedmodules
30
----- End of picture text -----

Teacher Training Impact

100% agreed or strongly agreed that presentation materials were relevant and clear

98.5% agreed or strongly agreed that pace and content was appropriate for audience

agreed 100% or strongly agreed that the programme content would raise awareness of PANS and PANDAS

100% would recommend our teacher training to colleagues

Follows up by 59% Visits up by

40%

Content Interactions up 100%

----- Start of picture text -----
Visits up by
1.5%
----- End of picture text -----

Teacher Training Feedback

The slides were great, and the trainer was very knowledgeable. It was helpful that it covered all areas of PANS/PANDAS including presentations in school and things we should be mindful of.

Knowledgeable and passionate host

----- Start of picture text -----
Reposts
----- End of picture text -----

----- Start of picture text -----
130
----- End of picture text -----

Reactions

1,935

Incredibly informative - detailed and breadth of information

Clear and easy to understand information with very helpful tips on PANS PANDAS in the school setting and highlighting the unique challenges in a way that is easy to understand.

Due to new charges by the social media platform X, we are unable to access our analytics, however we believe that our twitter presence has grown in line with the activity on our other social media platforms. the activity on our other social media platforms.

Annual Report | Period ending 31st March 2025

Section 8: Financial Review

The Charity’s financial performance reported below is for the period from 6 April 2024 to 31 March 2025 (a minor adjustment of the reporting year-end to align with our monthly reporting software).

We use a financial software package called Xero to manage and monitor our financial transactions, as it is a piece of software compatible with HMRC requirements, and familiar to our Examiner.

Our financial results have been independently examined and the examiner reported that there were no issues of any concern.

This Annual Report contains three relevant appendices:

Appendix A is the Charity Commission Form CC16a;

The Notes to the Accounts.

To follow is a brief summary of those statutory documents.

PANS PANDAS UK are a lifeline of information and support. We would be completely lost and alone without them.

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Annual Report | Period ending 31st March 2025

8.2 Income in 2024-25

The chart below presents the sources of income during the financial year, together with the percentage represented by each source.

----- Start of picture text -----
Total income £159,413
Other
Merchandise 9%
0.5%
Corporate Donations
6.7%
Regular Giving
2.5%
Donations
44.7%
Grants & Trusts
13.3%
Community Fundraising Events
23.6%
----- End of picture text -----

8.3 Historic Income Trends

The graph below shows the historic income trends.

----- Start of picture text -----
200000
150000 159400
145400
100000
90500
76300
50000
50700
22700
0
2019/20 2020/21 2021/22 2022/23 2023/24 2024/25
Financial Year
£
----- End of picture text -----

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Annual Report | Period ending 31st March 2025

8.4 Expenditure in 2024-25

The chart below presents the sources of expenditure during the financial year, together with the percentage represented by each source.

----- Start of picture text -----
Total expenditure £149,242
Governance
11.9%
Healthcare Services Development
21.2%
Cost of Generating Funds
23.1%
Education Development
25.8%
Teacher Training
0.9%
Support & Information
17%
----- End of picture text -----

8.5 Historic Expenditure Trends

The graph below shows the historic expenditure trends.

----- Start of picture text -----
200000
150000
149200
120000
100000 106600
63100
50000
16800 18500
0
2019/20 2020/21 2021/22 2022/23 2023/24 2024/25
Financial Year
£
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Annual Report | Period ending 31st March 2025

8.6 Reserves

The appropriate level of reserves was based on a risk-based approach for both restricted and unrestricted funds. This approach, which considered a number of plausible threats to income and expenditure, resulted in a figure representing about 6 months’ turnover, which is consistent with advice from the Charity Commission for a charity of this size.

The table below presents the reserves position at the start and the end of the financial year.

Table 8.1 Reserves Table 8.1 Reserves
Total Reserves Held as at 31 March 2025
st
£87,208
Of which, held in Restricted Funds £65,354
Of which, held in Unrestricted Funds £21,854
Total Reserves as a Proportion of Annual Turnover 55% (6.5 months of
turnover)

The level of unrestricted reserves represents only 14% of our annual turnover, less than 2 months. The level of reserves will be kept under review in 2025-26.

The chart below presents the reserves held at the end of each financial year.

----- Start of picture text -----
100000
80000 87200
82000
77000
60000
54600
40000
38300
20000
22400
0
2019/20 2020/21 2021/22 2022/23 2023/24 2024/25
Financial Year
£
----- End of picture text -----

8.5 Funds in deficit

The charity has no funds in deficit.

Annual Report | Period ending 31st March 2025

Section 9: Funds Held as Custodian Trustee on Behalf of Others

PANS PANDAS UK does not hold any assets in respect of other charities.

Section 10: Public Benefit Statement

It is PPUK’s belief that the charity has complied with the duty to have due regard to the guidance on public benefit published by the commission in exercising their powers or duties.

Section 11: Plans for Future Periods

11.1 Financial Year 2025/26

Although only larger charities subject to statutory audit are required to provide details of plans for future periods, we nevertheless provide headlines for planned activity in the financial year 2025/26.

11.1.1 Building Momentum for Change

As we look to the year ahead, PANS PANDAS UK is entering an exciting phase of growth, collaboration, and impact. Our plans span across the UK and touch every area of our work; from clinical progress and research to community engagement and professional education.

11.1.2 All Party Parliamentary Group

We’re excited about the next phase of our work with the All-Party Parliamentary Group (APPG) on PANS and PANDAS, and we have some ambitious plans in motion.

To begin with, we’re preparing to host a special session in early summer, where clinical experts will be invited to meet with APPG members. This will be a valuable opportunity to deepen understanding of PANS and PANDAS among parliamentarians, ensuring they are well-informed and equipped to advocate for meaningful change.

Following this, we’re planning a drop-in event at Parliament. There will be an open invitation for MPs to hear directly from members of our community. These personal stories and lived experiences are powerful, and we believe they will help bring the realities of PANS and PANDAS to the forefront of political discussion.

Looking further ahead, we’re working towards a second Backbench Debate, this time with a dedicated focus on the challenges around access to healthcare experienced by our community. This will be another important moment to raise awareness, push for progress, and ensure that the voices of those affected by PANS and PANDAS are heard at the highest levels.

st March 2025

Annual Report | Period ending 31st March 2025

11.1.3 PANS PANDAS Steering Group (PPSG)

To increase visibility and accessibility, we’ll be launching a dedicated website for the PPSG. This platform will showcase the group’s work and serve as a central hub for related documents and updates.

11.1.4 Engaging NHS Trusts

We’ll be reaching out to all NHS Trust Chief Executives across the UK with an update on the PPSG’s work, encouraging them to share this information with their GP and paediatric teams to raise awareness and improve clinical understanding.

11.1.5 Clinical Guidelines Working Group

The literature review that will inform the Delphi process is nearing completion. Once finalised, the Delphi process will begin. This is an essential step in developing robust, evidence-based clinical guidelines.

11.1.6 Pathway/Service Specification Group

As the Delphi process concludes, we’ll begin shaping a clear referral pathway and service specification. This will help clinicians navigate diagnosis and treatment once the guidelines are published.

11.1.7 Education, Social Care and Health Working Group

The first draft of our guidance is complete and now undergoing internal review. We will then be identifying key external stakeholders to provide feedback, before the guidance is published ensuring the guidance is comprehensive and practical.

11.1.8 Research Working Group

Our applications for the Child and Adolescent Psychiatric Surveillance System (CAPSS) and British Paediatric Surveillance Unit (BPSU) surveillance studies are progressing to the second phase. If successful, they will move forward to ethics approval, marking a major milestone in NHS-led research into PANS and PANDAS.

11.1.9 Virtual Conference for Parents and Carers

We’re excited to host a week-long virtual conference filled with expert-led webinars and workshops designed to support and empower parents and carers. We will bring together experts from education, psychotherapy, occupational therapy, speech and language therapy, social work, benefits support, and so much more to provide our community with practical and useful information and support.

st March 2025

Annual Report | Period ending 31st March 2025

11.1.10 Educational Psychologist Training

We will expand our teacher training provision by developing a CPD accredited training module for Educational Psychologists, with a view to launching this training in September 2025.

11.1.11 Youth Advisory Board

Our Youth Board continues to lead with creativity and passion. The Taming Olivia comic strip collaboration is set to launch soon, and we’re planning to expand this work with new resources and merchandise. We’re also hopeful that National Lottery Community Fund support will allow us to recruit a dedicated Youth Worker to help deliver a youth-led project.

11.1.12 Building Organisational Resilience

To secure the future of our work, we’re investing in our organisational resilience, strengthening our foundations so we can continue to grow and support our community for years to come.

11.1.13 Communications Strategy

We are developing a new communications strategy following feedback received from our community via a survey launched in the last financial year, to ensure we’re engaging with our community in meaningful, accessible, and responsive ways.

11.1.14 Supporting the Devolved Nations

We hope to secure funding to launch a scoping exercise to better understand the specific needs of our community members in Scotland, Wales, and Northern Ireland. This will help us tailor our support and advocacy efforts, ensuring that no one is left behind, regardless of where they live.

11.1.15 Conferences, Webinars and Workshops

We’ll be attending a range of health and education conferences to raise awareness and share knowledge with professionals. Highlights include:

Annual Report | Period ending 31st March 2025

Section 12: Signed Statement

I, Vicky Burford, hereby sign this Annual Report as a true record of the activities of the Charity for the year from 6th April 2024 to 31st March 2025.

Signed:

Name: Vicky Burford

Position: CEO, Former Chair of Trustees, PANS PANDAS UK

Date: 31 October 2025

Having been duly authorised to do so by the Trustees of the Charity.

Section 13: Appendices

Appendix A

Independent Examiner’s Report

Appendix B

Statement of Financial Activities, containing:

The Profit and Loss Account;

The Balance Sheet;

The Notes to the Accounts.

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF PANSIPANDAS UK Independent examiner's report to the trijsteès of PANSIPANDAS UK I rèport lo the charity trustees on my examination of the accounts of the Charity for the period ended 3151 March 2025 Responsibilities 3nd basis of rèport As the charity Trustees ol the company land also its directors Iof the purposes ol company lawl you are responsible for the preparation ol the accounts In accordance with the requirements of the Companies Act 20061'lhe 2006 Act'l Having satisfied myself that the a¢counts of the company are not required to be aLJdited under P3rt 16 of the 2006 Act and are eligible lor Independent examination. I report in iespect ol my examination ol your compally's accounts as carried out under section 145 of the Charities Act 2011 1.the 2011 Act'l. In carrying out my exdniination I have lollowett the Oireclions given by the Charity Cornrnission under section 14515llbl of the 2011 Act Independent examinèr's statement I have completed my examination I confirm that no material matters have come lo my attention In connection with the examination giving me cause to believe that in any inalerial respect. accounting recoids We￿ not kept In respect ol the company as required by section 386 of the 2006 Act.. or the accounts do not accord with those records., or the accoLJnls do not comply with the accounting requirements ol section 396 of the 2006 Act other than ny reqLJirement that the accounts give a 'true and lair view. which is not a matter considered as part of tn Independent examination, 01 4 the accounts have not been prepared in accordance with the methods alld principles c>f the Statement of Recommellded Practice for accounting aiid reporting by Gharities applicable to charities preparing their accour)Is in accordarlce wrth the Financial Reporting Standard applicable in the UK and Republi¢ of Ireland IFRS 1021. I have no concerns and have come across no other matters in connection with the examination lo which altentiori should be drawn in this report In order lo enable a proper understanding ol the accounts lo be reached. Mark Harwood FCA BFP FMAAT Michael Harwood & Co Chartered AccoLJntanls Greville House 10 Jury Street Warwick Warbvickshire CV34 4EW Oale" 124 ￿￿12*￿.

PANS/PANDAS UK

STATEMENT OF FINANCIAL ACTIVITIES for the Period 6[th] April 2024 – 31[st] March 2025

6th April 2024 – 31st March 2025
Notes Unrestricted
Restricted
Total
£
£
£
Income from:
Donations & legacies
2
79,270
77,354
156,624
Other trading activities
647
-
647
Other
2,142
-
2,142
Total income
82,059
77,354
159,413
Expenditure on:
Charitable activities:
3
Health services development
29,766
2,000
31,766
Education development
28,526
10,000
38,526
Patient information and support
25,430
-
25,430
Youth Advisory Board
-
-
-
Research
-
-
-
Teacher Training
1,301
-
1,301
Total charitable activities
97,023
12,000
97,023
Raising funds
4
34,439
-
34,439
Governance
5
17,780
-
17,780
Total expenditure
137,242
12,000
149,242
Net income/(expenditure)
(55,183)
65,354
10,171
Transfers between funds
-
-
-
Net movement in funds
10
(55,183)
65,354
10,171
Fund balances brought forward
77,037
-
77,037
Fund balances carried forward
21,854
65,354
87,208
6th April 2024 – 31st March 2025
Notes Unrestricted
Restricted
Total
£
£
£
Income from:
Donations & legacies
2
79,270
77,354
156,624
Other trading activities
647
-
647
Other
2,142
-
2,142
Total income
82,059
77,354
159,413
Expenditure on:
Charitable activities:
3
Health services development
29,766
2,000
31,766
Education development
28,526
10,000
38,526
Patient information and support
25,430
-
25,430
Youth Advisory Board
-
-
-
Research
-
-
-
Teacher Training
1,301
-
1,301
Total charitable activities
97,023
12,000
97,023
Raising funds
4
34,439
-
34,439
Governance
5
17,780
-
17,780
Total expenditure
137,242
12,000
149,242
Net income/(expenditure)
(55,183)
65,354
10,171
Transfers between funds
-
-
-
Net movement in funds
10
(55,183)
65,354
10,171
Fund balances brought forward
77,037
-
77,037
Fund balances carried forward
21,854
65,354
87,208
Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024
Unrestricted
Restricted
Total
£ £ £
144,134 - 144,134
406 - 406
815 - 815
159,413 145,355 - 145,355
31,766
38,526
25,430
-
-
1,301
22,328 - 22,328
24,765 - 24,765
14,295 - 14,295
880 - 880
4,368 632 5,000
- - -
97,023
34,439
17,780
66,636 632 67,268
28,128 - 28,128
11,191 - 11,191
149,242 105,955 632 106,587
10,171
-
39,400 (632) 38,768
24,669 (24,669) -
10,171 64,069 (25,301) 38,768
77,037
12,968 25,301 38,269
87,208 77,037 - 77,037

PANS/PANDAS UK

BALANCE SHEET As at 31[st] March 2025

31/03/2025
31/03/2025
31/03/2025
Unrestricted Restricted
Total
Note
£
£
£
Current assets
Debtors
8
1,010
-
1,010
Cash at bank and in hand
23,489
65,354
88,843
Total current assets
24,499
65,354
89,853
Current liabilities
Creditors
9
(2,645)
-
(2,645)
Net current assets
21,854
65,354
87,208
Total assets less current
liabilities
10
21,854
65,354
87,208
31/03/2025
31/03/2025
31/03/2025
Unrestricted Restricted
Total
Note
£
£
£
Current assets
Debtors
8
1,010
-
1,010
Cash at bank and in hand
23,489
65,354
88,843
Total current assets
24,499
65,354
89,853
Current liabilities
Creditors
9
(2,645)
-
(2,645)
Net current assets
21,854
65,354
87,208
Total assets less current
liabilities
10
21,854
65,354
87,208
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
05/04/2024
Unrestricted
Restricted
Total
£ £ £
- - -
77,122 - 77,122
89,853
(2,645)
77,122 - 77,122
(85) - (85)
87,208 77,037 - 77,037
87,208 77,037 - 77,037

The financial statements were approved by the Trustees on 24[th] October 2025.

On behalf of the Trustees

Mr Andrew Koss Chair

PANS/PANDAS UK

NOTES TO THE ACCOUNTS

for the Period 6[th] April 2024 – 31[st] March 2025

1. ACCOUNTING POLICIES

a) Basis of preparing the financial statements

PANS/PANDAS UK is a Charitable Incorporated Organisation registered in England & Wales and Scotland. The charity constitutes a public benefit entity as defined by FRS 102. The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland issued in October 2019, the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102), the Charities Act 2011, Charities Accounts (Scotland) Regulations 2006 and UK Generally Accepted Practice.

The financial statements are prepared on a going concern basis under the historical cost convention and are presented in sterling which is the functional currency of the charity and rounded to the nearest £1.

The significant accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied to all years presented unless otherwise stated.

b) Income

All incoming resources are included in the Statement of Financial Activities (SoFA) when the charity is legally entitled to the income after any performance conditions have been met, the amount can be measured reliably and it is probable that the income will be received.

For donations to be recognised the charity will have been notified of the amounts and the settlement date in writing. If there are conditions attached to the donation and this requires a level of performance before entitlement can be obtained then income is deferred until those conditions are fully met or the fulfilment of those conditions is within the control of the charity and it is probable that they will be fulfilled.

Donations, grants and gifts given for specific purposes are treated as income in the year of receipt. Unspent restricted income is included under restricted funds as it is fully committed.

No amounts are included in the financial statements for services donated by volunteers. Further detail is given in the Trustees’ Annual Report.

Income from trading activities includes activities to raise funds for the charity. Income is received in exchange for supplying goods and services in order to raise funds and is recognised when entitlement has occurred.

c) Expenditure

Expenditure is included on an accruals basis, and has been classified under headings that aggregate all cost related to the category. Expenditure is recognised where there is a legal or constructive obligation to make payments to third parties, it is probable that the settlement will be required and the amount of the obligation can be measured reliably. Where costs cannot be directly attributed, they have been allocated on a basis consistent with the use of resources (see 1.d) below).

Irrecoverable VAT is charged as an expense against the activity for which expenditure arose.

Redundancy and termination costs are recognised as an expense in the SoFA and a liability on the Balance Sheet immediately at the point the charity is demonstrably committed to either: terminate the employment of an employee or group of employees before normal retirement date; or provide termination benefits as a result of an offer made in order to encourage voluntary redundancy. The charity is considered to be demonstrably committed only when it has a detailed formal plan for the termination and is without realistic possibility of withdrawal from the plan.

d) Allocation of expenditure

Salaries - The salaries of project workers are allocated directly to the projects on which they work, alongside the charity’s contribution to pensions where appropriate.

PANS/PANDAS UK

NOTES TO THE ACCOUNTS

for the Period 6[th] April 2024 – 31[st] March 2025

1. ACCOUNTING POLICIES - continued

d) Allocation of expenditure - continued

Other costs - Core costs are allocated to the expenditure headings in the Statement of Financial Activities as follows:

Administration Communications
Costs Costs
% %
Health services development 30 20
Education development 30 20
Patient information and support 30 20
Youth Advisory Board 0 0
Research 0 0
Cost of generating funds 5 40
Governance 5 0
100 100
Administration Communications
Costs Costs
£ £
Health services development 10,665 1,617
Education development 10,665 1,617
Patient information and support 10,665 1,618
Youth Advisory Board - -
Research - -
Cost of generating funds 1,778 3,235
Governance 1,777 -
35,550 8,087

e) Taxation

The charity is an exempt charity within the meaning of schedule 3 of the Charities Act 2011 and is considered to pass the tests set out in Paragraph 1 Schedule 6 Finance Act 2010 and therefore it meets the definition of a charitable company for UK corporation tax purposes.

f) Fund accounting

Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.

Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes. Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.

g) Debtors and creditors receivable / payable within one year

Debtors and creditors with no stated interest rate and receivable or payable within one year are recorded at transaction price. Any losses arising from impairment are recognised in expenditure.

h) Pension costs and other post-retirement benefits

The charity operates a defined contribution pension scheme. Contributions are expensed as they become payable.

PANS/PANDAS UK

NOTES TO THE ACCOUNTS

for the Period 6[th] April 2024 – 31[st] March 2025

2. DONATIONS AND LEGACIES INCOME

6th April 2024 – 31st March 2025
Unrestricted
Restricted
Total
£
£
£
Regular giving
3,913
-
3,913
Major donors
-
60,354
60,354
Individuals
10,863
-
10,863
Companies/Organisations
10,677
-
10,677
Trusts & foundations
4,133
17,000
21,133
PPUK fundraising events
22,244
-
22,244
Community-led events
15,304
-
15,304
Gift Aid
12,136
-
12,136
Total donations and
legacies
79,270
77,354
156,624
6th April 2024 – 31st March 2025
Unrestricted
Restricted
Total
£
£
£
Regular giving
3,913
-
3,913
Major donors
-
60,354
60,354
Individuals
10,863
-
10,863
Companies/Organisations
10,677
-
10,677
Trusts & foundations
4,133
17,000
21,133
PPUK fundraising events
22,244
-
22,244
Community-led events
15,304
-
15,304
Gift Aid
12,136
-
12,136
Total donations and
legacies
79,270
77,354
156,624
Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024
Unrestricted
Restricted
Total
£ £ £
3,163 - 3,163
15,307 - 15,307
23,316 - 23,316
21,494 - 21,494
- - -
6,386 - 6,386
57,862 - 57,862
16,606 - 16,606
156,624 144,134 - 144,134

3. CHARITABLE ACTIVITIES EXPENDITURE

6th April 2024 – 31st March 2025
Unrestricted
Restricted
Total
£
£
£
Project costs
20,316
-
20,316
Project staff costs
27,860
12,000
39,860
Administration
31,995
-
31,995
Communications

4,852
-
4,852
Total expenditure on
charitable activities
85,023
12,000
97,023
6th April 2024 – 31st March 2025
Unrestricted
Restricted
Total
£
£
£
Project costs
20,316
-
20,316
Project staff costs
27,860
12,000
39,860
Administration
31,995
-
31,995
Communications

4,852
-
4,852
Total expenditure on
charitable activities
85,023
12,000
97,023
Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024
Unrestricted
Restricted
Total
£ £ £
12,790 632 13,422
34,726 - 34,726
15,965 - 15,965
3,155 - 3,155
97,023 66,636 632 67,268

4. COSTS OF GENERATING FUNDS

COSTS OF GENERATING FUNDS COSTS OF GENERATING FUNDS
6th April 2024 – 31st March 2025
Unrestricted
Restricted
Total
£
£
£
Merchandise
527
-
527
Resources & materials
1,345
-
1,345
Event costs
494
-
494
Platform fees
2,456
-
2,456
Professional fees
14,815
-
14,815
Other fundraising costs
656
-
656
Staff costs
9,133
-
9,133
Administration
1,778
-
1,778
Communications

3,235
-
3,235
Total expenditure on
raising funds
34,439
-
34,439
Year Ended 5th April 2024
Unrestricted
Restricted
Total
£ £ £
48 - 48
1,279 - 1,279
7,699 - 7,699
3,063 - 3,063
12,360 - 12,360
20 - 20
669 - 669
887 - 887
2,103 - 2,103
34,439 28,128 - 28,128

PANS/PANDAS UK

NOTES TO THE ACCOUNTS

for the Period 6[th] April 2024 – 31[st] March 2025

5. GOVERNANCE COSTS

6th April 2024 – 31st March 2025
Unrestricted
Restricted
Total
£
£
£
Trustee expenses/costs
3,081
-
3,081
Insurance
974
-
974
Accountancy software
442
-
442
Bookkeeping
7,200
-
7,200
Independent examiner
2,340
-
2,340
HR services
1,951
-
1,951
Other costs
15
-
15
Administration
1,777
-
1,777
Total governance costs
17,780
-
17,780*
6th April 2024 – 31st March 2025
Unrestricted
Restricted
Total
£
£
£
Trustee expenses/costs
3,081
-
3,081
Insurance
974
-
974
Accountancy software
442
-
442
Bookkeeping
7,200
-
7,200
Independent examiner
2,340
-
2,340
HR services
1,951
-
1,951
Other costs
15
-
15
Administration
1,777
-
1,777
Total governance costs
17,780
-
17,780*
Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024 Year Ended 5th April 2024
Unrestricted
Restricted
Total
£ £ £
1,604 - 1,604
832 - 832
384 - 384
4,212 - 4,212
2,040 - 2,040
1,232 - 1,232
- - -
887 - 887
17,780 11,191 - 11,191

6. STAFF COSTS

STAFF COSTS STAFF COSTS STAFF COSTS STAFF COSTS STAFF COSTS
6th April 2024 –
31st March 2025
Year Ended
5th April 2024
£
£
Gross wages
66,484
45,764
Pension costs
1,922
1,270
Other employee costs
3,425
-
Total salaries, wages and related costs
71,831
47,034
Average number of employees
6
4
No employee earned £60,000 per annum or more.
£
45,764
1,270
-
71,831 47,034
6
4

Total redundancy/termination payments amount to £3,425 (2024 - £nil) and related to the Administration Manager position which was deemed to be no longer required following a restructure.

7. TRUSTEES' REMUNERATION AND EXPENSES

No Trustee or connected person received any remuneration or expenses either directly or indirectly.

8. DEBTORS

Prepayments 31.03.25
£
05.04.24
£
1,010
-
1,010
-
31.03.25
£
05.04.24
£
1,010
-
1,010
-
-

PANS/PANDAS UK

NOTES TO THE ACCOUNTS for the Period 6[th] April 2024 – 31[st] March 2025

9. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR

Trade creditors
Other creditors
Accruals
MOVEMENT IN FUNDS
Funds at
06.04.24
Incoming
resources
Expended
resources
£
£
£
Unrestricted (General) fund
77,037
82,059
(137,242)
Restricted funds:
Hospital Saturday Fund
-
2,000
(2,000)
Education Fund
-
10,000
(10,000)
Information & Support Fund
-
5,000
-
The BIG Give
-
20,354
-
Caudwell Fund
-
40,000
-
-
77,354
(12,000)
TOTAL FUNDS
77,037
159,413
(149,242)
31.03.25
£
05.04.24
£
264
-
941
85
1,440
-
2,645
85
Transfers
Funds at
31.03.25
£
£
-
21,854
-
-
-
-
-
5,000
-
20,354
-
40,000
-
65,354
-
87,208
31.03.25
£
05.04.24
£
264
-
941
85
1,440
-
2,645
85
Transfers
Funds at
31.03.25
£
£
-
21,854
-
-
-
-
-
5,000
-
20,354
-
40,000
-
65,354
-
87,208
65,354
87,208

10. MOVEMENT IN FUNDS

11. RESTRICTED FUNDS

The purposes for which the restricted funds are held by the charity are:

Hospital Saturday Fund

Grant funding received from The Hospital Saturday Fund for the development of UK Clinical Guidelines for PANS and PANDAS.

Education Fund

Grant funding received from the James Tudor Foundation for the delivery of teacher training.

Information & Support Fund

Grant funding received from the Quilter Foundation for the development of information resources about PANS and PANDAS, specifically for the community of children and young people affected.

The BIG Give

Christmas Campaign income towards delivery of an online community conference in 2025 and an inperson international conference in 2026.

Caudwell Fund

Donation received from Rebekah Caudwell towards the costs of the CEO salary and Health Services Development work.

12. RELATED PARTY DISCLOSURES

There were no related party transactions during the year.