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2025-04-05-accounts

Chairperson’s Report

A message from our Chair

As I approach my 10[th] year as chairperson for PoTS UK, it is a pleasure to reflect on the changes, successes and challenges the charity has faced since it started in 2010.

Having developed our 3-year strategy in 2023-24, this year has been clearly focussed on forging ahead with our aims and goals. 2024-25 has been as busy as ever and we are proud of our achievements. As always, my primary thanks must go to our wonderful community who support us in so many ways. It has been another successful year for fundraising and we extend our heartfelt thanks to everyone who has fundraised or donated. We hosted our first PoTS UK celebration event in February 2025, and it was a joy to join together staff, fundraisers, medical advisors and volunteers to celebrate the positive impact they have on our charity.

There are many highlights from the past year, but I would like to pay particular attention to the following:

Parliamentary Campaign - Compared to this time last year, we feel the awareness of PoTS within UK governments and the NHS has increased significantly and ultimately, this will lead to positive change. In what must be our best team effort to date, the PoTS community came together in their support for our parliamentary campaign and managed to reach out via email to 575 of 650 MPs. In total, 2295 emails were sent, and we were delighted to be told by one MP that he has never received so many emails on one topic. This is something to be proud of and shows the strength in numbers! We must all play our part.

It was a pleasure to visit Portcullis House alongside a team of trustees, nurse specialists, consultants and staff to meet MPs to discuss inequitable access to healthcare for people with PoTS. MPs were given clear actions to take away and we are very grateful to those MPs who have shown interest and support.

Communications and responses from the Department of Health and Social Care are inaccurate, unhelpful and lacking in any guaranteed action. It mirrors the poor response to the January GOV.UK petition. Despite requesting a meeting, the DHSC has refused to meet with us due to time constraints. We will continue to respond and challenge them. I must say a special thank you to Sophie West who launched the petition and has shown such determination and strength in pushing it forward.

In July 2022, Jane Clarke initiated a petition to the Scottish Parliament requesting better services for people with dysautonomia. We have been working with Jane and Chest Heart Stroke Scotland to challenge the Scottish Government and NHS Scotland’s false claims that there are high quality services and national guidelines available. This work is ongoing. All responses to date can be found here: https://petitions.parliament.scot/petitions/PE1952 or https://www.parliament.scot/get-involved/petitions/view-petitions/pe1952-specialist-servicesfor-patients-with-autonomic-dysfunction

As health is a devolved matter in Scotland, Wales and Northern Ireland we need to ensure we are reaching out to the Members of the Scottish Parliament (MSPs), Members of the Senedd (MSs) and Members of the Legislative Assembly (MLAs). This will form part of our work in 2025/26.

We are forever reminded that our challenges are a marathon, not a sprint and this could not be truer than in the case of improving services. We know changes won’t happen overnight but there has been a palpable shift in awareness and strides are being taken in the right direction.

Training Event for Healthcare Professionals – In March 2024, we were delighted to host a hybrid educational training event, attended by over 300 nurses and healthcare professionals to learn more about Autonomic Dysfunction including diagnosis, management and treatment. It is always fantastic to have the opportunity to raise awareness and knowledge amongst healthcare professionals and we continue to encourage trusts, ICBs and health boards to reach out to us to deliver this important education.

National PoTS guidelines would improve awareness, understanding of PoTS, and access to healthcare. It was a pleasure to meet with a team of PoTS experts in October 2024 to drive this forward and we hope that 2025/26 will show significant progress in this area.

I remain very proud of our Peer Support Group programme that have been running for almost 4 years now. Our team of volunteers has grown again throughout 2024/25, and they are committed, caring and compassionate. They dedicate time to not only run the groups but also to review and reflect on what changes could be made to improve them. We have been pleased to answer requests for topic groups on Neurodiversity, LGBTQIA+, and living with PoTS over the age of 50. The groups are diverse, inclusive and safe spaces. I encourage everyone to attend and see how our hosts can put you at ease and make the group work for your needs.

As always, I extend my thanks to our administrative team and my fellow trustees who all share the same passion, drive and determination. 2024/25 has welcomed lots of new volunteers and I am grateful for the role played by each individual.

I look forward to the year ahead. We are working towards holding an educational Masterclass in 2026, bringing together our community at a patient event and continuing to push our parliamentary campaign in order to improve services.

Raising awareness is at the heart of what we do and what we need to achieve. I urge everyone to reflect on what part they can play and not to underestimate the value in sharing social media posts, sharing your story and answering surveys to help us grow our pool of data that is an invaluable resource.

The annual report includes further information on the financials aspects, further achievements and a look ahead to the next year.

Dr Lesley Kavi

PoTS UK

Trustees Annual Report

2024 – 2025


Charity Overview

Name of the Charity: PoTS UK.

Registration number: 1159813, Charitable incorporated organisation (from 6 Jan 2015). Address: Oakfield Cottage, Stratford Rd, Wootton Wawen, Henley-in-Arden B95 6DF.

Trustees:

Dr Lesley Kavi (Chair)

Lisa Bradford (Treasurer)

Dr Morwenna Opie-Moran

Michaela Nuttall RN

Chloe Smerklo

General Manger:

Joanne Bullingham

Charity Administrators:

Denise Chapman

Nikki Mills

Medical advisors:

Dr Nick Gall

Prof Julia Newton

Dr Arnold Deering

Dr Satish Raj

Dr Blair Grubb

Dr Ian Wilkinson

Dr Jane Simmonds Melloney Ferrar

Helen Eftekhari

Prof Melvin D Lobo

Dr Sam Waterman

Dr Robert Sheldon

Medical patrons and supporters:

Dr Nick Gall

Prof Michael Gammage

Cat Smith MP

Dr Philip Hammond

Adam Jacobs

Peter Capaldi

Primary Bankers:

NatWest Bank

Royal Bank of Scotland (Reserves Account)

Independent examiner:

Beverly Walker

Tall Horse Consultancy

SBC House

Restmor Way

Wallington

SM6 7AH


Structure, Governance, and Management

PoTS UK is a Charitable Incorporated Organisation as of January 2015, constituted from that date and is governed by the Charity’s constitution.

Organisational Structure:

The Charity is run by five trustees who are healthcare professionals, patients or carers of people affected by PoTS. Trustees are elected by mutual agreement by all other trustees and remain in post for a minimum of three years. The day-to-day operations are managed by the Chair and General Manager supported by a committed team of staff and volunteers. All members of the team work remotely and there are no office premises.

The charity employs three members of staff (making up just over 1FTE).


Charity Objectives

Our Mission, Vision and Values

PoTS UK supports and educates patients, family, friends and healthcare professionals within the United Kingdom about this under recognised and commonly misdiagnosed condition by sharing up to date evidence and resources.

Mission: To provide accessible evidence informed support, education, and awareness for our growing community.

Vision: To optimise the health and quality of life of everyone impacted by PoTS.

Values:

We are committed to supporting the PoTS community by:

To achieve our mission, vision and values, our activities include:

Strategy 2024-2026

The trustees developed a 9-point plan when developing the Charity’s 3-year strategy at the AGM in January 2024 and have a detailed plan of work for each area.

These are:

  1. Develop and grow our services to best suit the current and unmet needs of our beneficiaries.

  2. Educate and empower the public to know and understand the signs and symptoms of PoTS and take action to improve their health.

  3. Educate healthcare professionals to improve outcomes for people with PoTS.

  4. Influence the health and social care system to identify and provide services to people with PoTS and report progress.

  5. Build and improve engagement with those connected with us

  6. Improve our inclusivity.

  7. Increase our reach to raise awareness of the charity across the United Kingdom.

  8. Continue to grow a sustainable organisation.

  9. Measure and demonstrate our impact.

Public benefit statement

The trustees identify the need to have charitable aims and objectives to comply with the Charity commission's public benefit guidance.


Achievements and Performance

Impact and Outcomes


Looking ahead - Plans for 2025/26

In line with our strategy, our priorities over the next 2 years year will include:


Financial review

Total income for 2024-25 was £67,460.

Total expenditure for the year was £72,428. This is a substantial increase in expenditure from 2023-24 (a low expenditure year) due to employing an additional member of staff and funding a number of projects including our Freedom of Information work, Parliamentary Campaign and Healthcare Professional Training Event. These expenses are recorded under ‘Project Expenses’ in the CC16a of our annual accounts.

The main areas of expenditure were:

Reserves Policy

The trustees have established a reserves policy to maintain a level of unrestricted funds equivalent to 1-year of operational expenditure, approximately £45,000. This ensures that the charity can continue its activities in the event of unforeseen financial difficulties. This reserves policy will be reviewed annually at the AGM to ensure the amount remains suitable and

considers any changes within the charity. At the AGM in January 2024, trustees agreed to move a further £20,000 into the reserves account to take in to account rising costs and increase in staff.

The outlook for PoTS UK remains positive and careful management of funds will continue to be essential to ensure that the Charity remains in a healthy position.


Statement of Trustees’ Responsibilities

The trustees are responsible for preparing the Trustees’ Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards.

Report Approval

The PoTS UK Trustee Report for 2024-2025 was approved by the board on 25[th] August 2025 meeting.

The report was signed on behalf of the trustees by:

Professor Lesley Kavi, Trustee and Chair, PoTS UK.

Date: 22[nd] October 2025

Section A Receipts and payments
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
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06/04/2024
05/04/2025
1159813
PoTs UK
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A1 Receipts
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1159813
PoTs UK
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A1 Receipts
CC16a
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1159813
PoTs UK
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A1 Receipts
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1159813
PoTs UK
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A1 Receipts
CC16a
06/04/2024
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1159813
PoTs UK
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Section A Receipts and payments
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A1 Receipts
CC16a
06/04/2024
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1159813
PoTs UK
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Section A Receipts and payments
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
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Section A Receipts and payments
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Last year
to the nearest £
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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Section A Receipts and payments
Unrestricted
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Last year
to the nearest £
to the nearest £
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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ee ee ee ee-
Section A Receipts and payments
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Last year
to the nearest £
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to the nearest £
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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Section A Receipts and payments
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Last year
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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ee ee ee ee-
Section A Receipts and payments
Unrestricted
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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ee ee ee ee-
Section A Receipts and payments
Unrestricted
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Total funds
Last year
to the nearest £
to the nearest £
to the nearest £
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to the nearest £
A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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from
ee ee ee ee-
Section A Receipts and payments
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
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Section A Receipts and payments
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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To
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from
ee ee ee ee-
Section A Receipts and payments
Unrestricted
funds
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Endowment
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Total funds
Last year
to the nearest £
to the nearest £
to the nearest £
to the nearest £
to the nearest £
A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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To
For the period
from
ee ee ee ee-
Section A Receipts and payments
Unrestricted
funds
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Last year
to the nearest £
to the nearest £
to the nearest £
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A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
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To
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from
ee ee ee ee-
Section A Receipts and payments
Unrestricted
funds
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Last year
to the nearest £
to the nearest £
to the nearest £
to the nearest £
to the nearest £
A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
Period start date
Period end date
To
For the period
from
ee ee ee ee-
Section A Receipts and payments
Unrestricted
funds
Restricted
funds
Endowment
funds
Total funds
Last year
to the nearest £
to the nearest £
to the nearest £
to the nearest £
to the nearest £
A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
Period start date
Period end date
To
For the period
from
ee ee ee ee-
Section A Receipts and payments
Unrestricted
funds
Restricted
funds
Endowment
funds
Total funds
Last year
to the nearest £
to the nearest £
to the nearest £
to the nearest £
to the nearest £
A1 Receipts
CC16a
06/04/2024
05/04/2025
1159813
PoTs UK
Receipts and payments accounts
Period start date
Period end date
To
For the period
from
ee ee ee ee-
Donations 66,128 66,128 66,128 66,128 - - - - - - - - 66,128 66,128 76,744 76,744
Bank interest 1,332 1,332 1,332 1,332 - - - - - - - - 1,332 1,332 420 420
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
Sub total(Gross income for AR) 67,460 67,460 67,460 67,460 - - - - - - - - 67,460 67,460 77,164 77,164
A2 Asset and investment sales, (see
table).
-
-
-
-
-
-
-
-
-
Sub total -
-
-
-
-
Total receipts 67,460
-
-
67,460
77,164
A3 Payments
Printing, postage and stationary
2,420
-
-
2,420
1,717
————~~—=~~
Advertising and promotional costs - - - - - - - - - -
Wages and salaries 36,484 36,484 36,484 36,484 - - - - - - - - 36,484 36,484 26,564 26,564
Computer expenses and consumables - - - - - - - - - - 100 100
Fundraising costs 772 772 772 772 - - - - - - - - 772 772 672 672
Accountancy fees 8,104 8,104 8,104 8,104 - - - - - - - - 8,104 8,104 817 817
Training 1,060 1,060 1,060 1,060 - - - - - - - - 1,060 1,060 1,463 1,463
Purchase of promotional items 3,590 3,590 3,590 3,590 - - - - - - - - 3,590 3,590 4,387 4,387
Insurance 551 551 551 551 - - - - - - - - 551 551 551 551
Legal & professional - - - - - - - - - - - - - - 600 600
Depreciation - - - - - - - - - - - - - - 1,138 1,138
Software and subscriptions 5,997 5,997 5,997 5,997 - - - - - - - - 5,997 5,997 5,166 5,166
PayPal fees 604 604 604 604 - - - - - - - - 604 604 237 237
Project expenses 8,062 8,062 8,062 8,062 - - - - - - - - 8,062 8,062 1,749 1,749
Website development and maintenance 3,666 3,666 3,666 3,666 - - - - - - - - 3,666 3,666 2,703 2,703
Other expenses 459 459 459 459 - - - - - - - - 459 459 - -
Speaker Fund 480 480 480 480 - - - - - - - - 480 480 - -
Membership fees 182 182 182 182 - - - - - - - - 182 182 - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - -
**Sub total ** 72,428 72,428 72,428 72,428 - - - - - - - - 72,428 72,428 47,864 47,864
A4 Asset and investment purchases,
(see table)
Other assets
-
-
-
-
2,276
-
-
-
-
Sub total -
-
-
-
2,276
Total payments 72,428
-
-
72,428
50,140
Net of receipts/(payments)
- 4,968
-
- - 4,968
27,024
A5 Transfers between funds
-
- -
-
-
A6 Cash funds last year end
121,412
- -
121,412
94,388
Cash funds this year end
116,444
-
- 116,444
121,412
S55~~5~~—
—S=—_S===>=

CCXX R1 accounts (SS)

21/10/2025

1

Section B Statement of assets and liabilities at the end of the period Section B Statement of assets and liabilities at the end of the period Section B Statement of assets and liabilities at the end of the period
Categories
Signed by one or two trustees on behalf of all
the trustees
B5 Liabilities
B3 Investment assets
B2 Other monetary assets
B4 Assets retained for the charity’s
own use
B1 Cash funds
Details
Details
Details
Total cash funds
(agree balances with receipts and payments
account(s))
Other assets
Details
Bank accounts
Details
Signature
Unrestricted
funds
Restricted
funds
to nearest £
to nearest £
116,444
-
-
-
-
-
116,444
-
OK
OK
Unrestricted
funds
Restricted
funds
to nearest £
to nearest £
-
-
-
-
-
-
-
-
-
-
-
-
Fund to which
asset belongs
Cost (optional)
-
-
-
-
-
Fund to which
asset belongs
Cost (optional)
-
-
-
-
-
-
-
-
-
Fund to which
liability relates
Amount due
(optional)
-
-
-
-
-
Print Name
Endowment
funds
to nearest £
-
-
-
OK
Endowment
funds
to nearest £
-
-
-
-
-
-
Current value
(optional)
-
-
-
-
-
Current value
(optional)
-
-
-
-
-
-
-
-
-
When due
(optional)
Date of
approval

CCXX R2 accounts (SS)

21/10/2025

2

Independent examiner's report on the accounts

Section A Independent Examiner’s Report

Report to the trustees/ Charity Name PoTS UK members of On accounts for the year 5 April 2025 Charity no 1159813 ended (if any) Set out on pages 1 and 2 (remember to include the page numbers of additional sheets)

I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended 05/04/2025.

I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent I have completed my examination. I confirm that no material matters have examiner's statement come to my attention (other than that disclosed below *) in connection with the examination which gives me cause to believe that in, any material respect:

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Date: 21/10/2025 Signed: ~~(G.2ge| |~~ Name: Beverley Walker ~~Ps~~ Relevant professional ACCA qualification(s) or body (if any): Address: Tall Horse Consultancy Services Ltd Chartered Certified Accountants SBC House Restmor Way Surrey SM6 7AH

1

October 2018

IER

Section B Disclosure

Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).

Give here brief details of any items that the examiner wishes to disclose .

2

October 2018

IER