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2024-04-05-accounts

Charity Registration No. 1175427

PSC SUPPORT TRUSTEES' REPORT AND ACCOUNTS FOR THE YEAR ENDED 5 APRIL 2024

PSC SUPPORT

CONTENTS FOR THE YEAR ENDED 5 APRIL 2024

REFERENCE AND ADMINISTRATIVE DETAILS

Name PSC SUPPORT Charity registration no. 1175427 Address Unit 23056, UK Postbox PO Box 4336 MANCHESTER M61 0BW Independent Examiner Wenn Townsend Chartered Accountants Victoria House 10 Broad Street Abingdon Oxon OX14 3LH

Trustees serving on the date the report was approved

Tim Waterson (Chair) Harrison Moller Mark Dean Helen Elder Rick Dallaway Nicholas Kane James Brown David Adams Charlene Oke (from 26/6/23)

PSC SUPPORT

CONTENTS FOR THE YEAR ENDED 5 APRIL 2024

Trustees report 1-6
Statement of trustees' responsibilities 7
Independent examiner's report 8
Statement of financial activities 9-10
Balance sheet 11-12
Notes to the accounts 13-17

PSC SUPPORT

TRUSTEES’ REPORT FOR THE YEAR ENDED 5 APRIL 2024

The Trustees present their report and financial statements for the year ended 5 April 2024. The accounts have been prepared in accordance with applicable accounting standards, SORP 2015 (FRS 102) Accounting and Reporting by Charities and the Charities Act 2011.

Structure, governance and management governing document

The charity uses a constitution as its governing document.

PSC Support is a Charitable Incorporated Organisation (CIO)

Trustees use the Charity Governance code as a framework to build and improve governance standards.

Recruitment and appointment of trustees

Trustees are interviewed and then appointed by existing trustees.

Public benefit statement

The Trustees confirm that they have referred to the information contained in the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in planning future activities. As a matter of course, reference is made to our agreed objectives to aid decisionmaking.

Our prioritised short-term goals are as follows:

We will advocate for the highest standards of care for people living with PSC

OBJECTIVES AND ACTIVITIES

Our charitable objects are:

Our related activities include (but are not limited to) the following:

  1. Funding high quality research, helping to shape clinical and other research trials and funding co-applicants for PSC research

  2. Providing high-quality, medically checked information on our website, social media, newsletters and at PSC Support events

  3. Providing support for those affected by PSC via our Helpline service and our moderated, private PSC Support Facebook group

  4. Advocating for those affected by PSC both in the UK and internationally.

1

PSC SUPPORT

TRUSTEES’ REPORT FOR THE YEAR ENDED 5 APRIL 2024

ACHIEVEMENTS AND PERFORMANCE

Fundraising/ Income

The charity received a total income of £405,606 including £381,601 from fundraising, donations and merchandise sales for the year ending 5th April 2024. Fundraising income was again dramatically up on the previous year with a 54% increase. While the general economy remains difficult this increase is a testament to our work and our supporters who are motivated by our charity’s aims and objectives, particularly in relation to funding high quality research. £90,576 of the total was in restricted income which was broken down as £10,426 for Information Days, £21,225 for a new e-learning platform on PSC guidelines and £58,925 for PSC research.

Expenditure

PSC Support trustees place the utmost importance on spending the charity’s money best possible way for our beneficiaries. Our expenditure in this FY was £308,593 up from £127,077 the previous year. Research funding, an additional staff member, freelance support and bolstering our back-office systems including fundraising accounted for this rise in our expenditure.

Staff

The charity recruited a new member of staff during the year. Mark Chatterley became the new Administration Manager and has proved to be a great asset to the charity.

Martine Walmsley become our new Head of Research Strategy in line with her strengths and significant experience in this area of work.

Volunteers

Our volunteers make an immense contribution to the charity and trustees recognise their pivotal role.

In particular they would like to recognise the following: Keith Anderson, the charity’s long-standing Treasurer, who resigned after 12 years of service during the financial year and Facebook moderator Lorraine Failes another long-standing volunteer for the charity.

They are also very grateful to long term Facebook moderators Vicki and Gareth Weeks and Josie and Malcolm Eddy who manage merchandise and assist with fundraising. Trustees would also like to recognise the contribution made by our webmaster Iain McClenaghan and Noelie Srivastava for her graphic design services.

Trustees would like to recognise all those affected by PSC who have provided different perspectives in this year’s support, advocacy and research initiatives. As well as being a Facebook moderator Gareth Weeks also sits alongside Chris Forde, Jenny Nelson and Gary Taylor as patient representatives on our Expert Panel; they all play a crucial role in this capacity. Additionally, Gareth Weeks and Chris Forde are also lay members of our Scientific Review Committee.

PSC Support works with dedicated medical professionals, who give their time and expertise to PSC Support at no cost. This year, we are grateful for support from:

Professor David Adams Professor Doug Thorburn Professor Annika Bergquist Professor Angsar Lohse

2

PSC SUPPORT

TRUSTEES’ REPORT FOR THE YEAR ENDED 5 APRIL 2024

Professor Catherine Williamson Professor Shaid Khan Professor Alaistair O’Brien Dr Palak Trivedi Dr Roger Chapman Dr Deepak Joshi Dr Simon Rushbrook Dr Emma Culver Dr Luke Boulter Dr Richard Aspinall Dr James Ferguson Dr Jess Dyson Dr Andrew Yeoman Dr Kate Lynch Dr Francesca Saffioti Dr Christoph Schramm Dr Brijesh Srivastava Dr Nora Cazzagon Dr Norman Junge Dr George Mells Dr Amera Elzubeir Dr Nicholas Ilott

Fundraising Products

20K Your Way was a new fundraising product designed to engage our community more and provide another way to fundraise for the charity. This campaign produced over £22k in revenue for the charity in its first year and will now become an annual fundraising campaign.

Support from the Pharmaceutical Industry

The following companies sponsored Information Days:

While we are incredibly grateful for their financial support, these companies have had no influence over content or the agendas of the events.

Information and Support

Social media – the charity has over 10k followers across all social media platforms. We post daily to engage with the community and to provide up to date information. Our well-moderated private Facebook group of over 4,000 people offers peer support. Huge thanks go to our volunteer moderators and staff moderator, Martine Walmsley, who work tirelessly to make sure the private support group is moderated to a very high standard even during holiday periods.

Ask the Experts – Over 700 people attended our webinars which were scheduled as monthly events in the second half of the financial year. These events gave those affected by PSC access to expert clinicians, helped them find out the latest developments and ask questions about PSC and related conditions.

3

PSC SUPPORT

TRUSTEES’ REPORT FOR THE YEAR ENDED 5 APRIL 2024

Information Days – we delivered one face-to-face event in this financial year in Oxford. 105 people attended the event (despite a national train strike) and we received excellent feedback. Attendees rated the event 4.9 out of 5.

‘I thoroughly enjoyed the event and catching up with others or finally meeting some of those I've only known through the Facebook group. There was a great mix of speakers and either personal experiences or medical information, for those newly diagnosed and those pre or post-transplant. The panel discussion sounded interesting too from the feedback and good to have a wellbeing session. Well done to you and the volunteers who helped make the day possible, they are so valuable for PSCers. Thank you.’

Helpline – We had over 100 emails to or calls to our Helpline. Special thanks to Martine Walmsley who has managed this service for a number of years. We receive excellent feedback from those who have accessed the helpline and they were very grateful for her support.

'Thank you so much for listening to me talk and addressing my worries and concerns'

Research (including publications)

PSC research remains a priority for the charity. We launched a new research campaign called Mission 2030 in an attempt to do everything we can to find an effective treatment for PSC. This campaign committed to fund £1 million worth of research by 2030. Funding will include research projects and a Research Training Fellowship.

Mission 2030 includes:

We were delighted to agree funding for five research projects in the first year of the campaign with a total value of £207,500.

The charity also continued to dedicate time to support clinical trial development by working with pharmaceutical companies to ensure trial protocols and patient information were fit for purpose and appropriate for our UK community.

Additional research activities included:

  1. Being a co-applicant on national and international PSC research study funding applications

  2. Representing people with PSC on trial steering committees and trial management groups for national research projects, studies and trials.

  3. Running focus groups of 8-10 people living with PSC each to provide patient and public involvement to inform academic research studies. We are very grateful to the people with PSC who joined our research panels to provide feedback to researchers.

  4. Representing PSC patients in the European Reference Network (ERN RARE-LIVER) as the Co-Lead of the PSC Working Group (MW).

Publications:

1. Rushbrook S, Kendall TJ, Zen Y, Albazaz R, Manoharan P, Pereira SP, Sturgess R, Davidson B, Malik H, Manas D, Heaton N. British Society of Gastroenterology Guidelines for the Diagnosis and Management of Cholangiocarcinoma. Gut. 2023 Sep 5.

  1. Hussain N, Hirschfield B, Ferguson J, Abbas N, Bhandal K, Rogers P, Burke E, Hull D,

4

PSC SUPPORT

TRUSTEES’ REPORT FOR THE YEAR ENDED 5 APRIL 2024

Gungabissoon U, Casillas L, Mukherjee S. P34 Burden, impact and variability of pruritus i primary sclerosing cholangitis (PSC) over time: a prospective observational study. Gut. 2023 72 S3

3. Walmsley M, Tornai D, Cazzagon N, Leburgue A, Mrzljak A, Lenzen H, Carbone M, ‐

Madaleno J, Lleo A, Junge N, Schramm C, Bergquist, A. Patient reported quality of care in primary sclerosing cholangitis. Liver International. 2023 Jun 13

4. Hussain N, Hirschfield B, Ferguson J, Abbas N, Bhandal K, Rogers P, Burke E, Hull D, Gungabissoon U, Casillas L, Mukherjee S. Burden, impact and variability of pruritus in primary sclerosing cholangitis (PSC) over time: a prospective observational study. Journal of Hepatology. 2023. Jun. 78, SUPPLEMENT 1, S398-S399

5. Bergquist A, Walmsley M, Tornai D, Cazzagon N, Leburgue A, Mrzljak A, Lenzen H, Carbone M, Madaleno J, Lleo A, Junge N. Patient reported gaps between current practice and new practice guidelines for primary sclerosing cholangitis. Journal of Hepatology. 2023 Jun 1;78:S383-4

6. Kowdley KV, Safer R, Gomel R, Hatchett J, Walmsley M, Burman JA, Weinbaum S, Goldsmith K, Garner W, McKibben A, Chien E. Tu1587 IMPACT OF PRURITUS IN PRIMARY SCLEROSING CHOLANGITIS (PSC) FROM THE PATIENT PERSPECTIVE: A MULTI-NATIONAL STUDY. Gastroenterology. 2023 May 1;164(6):S-1426

Advocacy

PSC Support continued to provide strong advocacy for those affected by PSC both at a national and international level.

Organisational Risk, Limitations and Stability

PSC Support Trustees continued to hold quarterly meetings and kept in close contact with the CEO during the year.

The Board receives a full Financial Report every quarter, which takes into account the forecast, expenditure, income and any designated funds to ensure they are fully aware of the charity’s current and expected financial position as an ongoing concern.

The staff base increased with the appointment of the Administration Manager.

During the financial year the charity moved its accounts onto the accountancy software package, Xero.

FINANCIAL REVIEW

The detailed accounts for the year ended 5 April 2024 are shown on pages 10-20. The accounts show that at the end of the financial year PSC Support held £639,187 in funds. This was broken down as total unrestricted £617,412 and total restricted £21,775.

At the end of the financial year the charity held £43,500 of committed funds for research.

No funds were materially in deficit.

Policy on reserves

5

PSC SUPPORT

TRUSTEES’ REPORT

FOR THE YEAR ENDED 5 APRIL 2024

In 2023-24 reserves contingency was nine months operating costs. These reserves would enable normal operating activities to continue over a period of 9 months should a shortfall in income occur. It also takes into account any potential risks and contingencies that may arise from time to time.

In order to establish the reserve, the Trustees consider the financial circumstances and risks annually (expenditure and unrestricted income).

The Trustees review the charity accounts on a quarterly basis.

The Trustees regularly reviewed funds/reserves levels throughout 2023/24, focusing funds on the most important priorities.

The reserves value held by the charity (which equals 9 months of running costs), stands at £134,162. This includes the increased pay expenditure allocated to new staff.

Future plans

These include the following:

Independent Examiner

A resolution will be proposed at the Trustee Meeting that Wenn Townsend be re-appointed as Independent Examiner to the charity for the ensuing year.

Approved by the Trustees and signed on their behalf on 22[nd] January 2025 by:

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…………………..
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Tim Waterson (Trustee)

6

PSC SUPPORT

STATEMENT OF TRUSTEES' RESPONSIBILITIES

The trustees are responsible for preparing the Trustees' Report and the accounts in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England and Wales requires the trustees to prepare accounts for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources of the charity for that year.

In preparing these accounts, the trustees are required to:

The trustees are responsible for keeping sufficient accounting records that disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the accounts comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

7

PSC SUPPORT

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF PSC SUPPORT

I report to the charity trustees on my examination of the accounts of the charity for the year ended 5 April 2024 which are set out on pages 9-17.

Responsibilities and basis of report

As the charity’s trustees you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

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

Independent examiner's statement

Since the charity’s gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the Act. I confirm that I am qualified to undertake the examination because I am a member of the Institute of Chartered Accountants of England and Wales, which is one of the listed bodies.

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

  1. accounting records were not kept in respect of the charity as required by section 130 of the Act; or

  2. the accounts do not accord with those records or

  3. the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair view’ which is not a matter considered as part of an independent examination.

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

Stuart Bates FCA CTA Wenn Townsend 10 Broad Street Abingdon OX14 3LH

……………………….. 28 January 2025

8

PSC SUPPORT

STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 5 APRIL 2024

Unrestricted
funds
Notes
£
Income
Donations and legacies
263,648
Grants
2
-
Investment income
3
15,410
Gift aid
29,967
Other charitable activities
6,005
Total
315,030
Expenditure
Research payable
-
Fundraising
22,286
Direct charitable expenditure
142,654
Governance costs
13,943
Total
4
178,883
Net Income (Expenditure)
136,147
Transfers between funds
(21,137)
Net movement in funds
115,010
Fund balances at 5 April 2023
502,402
Fund balances at 6 April 2024
617,412		 Restricted
funds
£
34,454
31,651
-
6,471
18,000
90,576
86,000
-
43,710
-
129,710
(39,134)
21,137
(17,997)
39,772
21,775		 Total
2024
Total
2023
£
£
298,102
242,667
31,651
550
15,410
2,223
36,438
16,928
24,005
1,319		 Total
2024
Total
2023
£
£
298,102
242,667
31,651
550
15,410
2,223
36,438
16,928
24,005
1,319
405,606
263,687
86,000
22,286
186,364
13,943
8,542

3,925

114,010

600
308,593
127,077
97,013
136,610
-
-
97,013
136,610
542,174
405,564
639,187
542,174

9

PSC SUPPORT

STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 5 APRIL 2023 (COMPARATIVE FIGURES)

Income
Donations and legacies
Grants
Investment income
Gift aid
Other charitable activities
Total
Expenditure
Grants payable
Fundraising
Direct charitable expenditure
Governance costs
Total
Net movement in funds
Fund balances at 6 April 2022
Fund balances at 5 April 2023		 Unrestricted
funds
£
216,657
-
2,223
10,678
1,319
230,877
8,504
3,925
114,010
600
127,039
103,838
398,564
502,402		 Restricted
funds
£
26,010
550
-
6,250
-
32,810
38
-
-
-
38
32,772
7,000
39,772		 Total 2023
£
242,667
550
2,223
16,928
1,319
263,687
8,542
3,925
114,010
600
127,077
136,610
405,564
542,174

10

PSC SUPPORT

BALANCE SHEET FOR THE YEAR ENDED 5 APRIL 2024

Notes
Fixed Assets
Tangible Assets
6
Current Assets
Stocks
Debtors
7
Cash at Bank and in hand
Creditors: amounts falling
due within one year
8
Net current assets
Total assets less current
liabilities
Income funds
Restricted Funds
Unrestricted Funds		 £
3,119
60,749
581,975
645,843
10,015		 2024
£
£
3,359
635,828
639,187
21,775
617,412
639,187		 2023
£
2,776
1,162
15,472
525,971		 2023
£
2,776
1,162
15,472
525,971

542,605

3,207
539,398
3,207
542,174

39,772
502,402
542,174

The accounts were approved by the Trustees on 22[nd] January 2025

Tim Waterson (Trustee)

………………………………………

11

PSC SUPPORT

BALANCE SHEET FOR THE YEAR ENDED 5 APRIL 2024

1 Accounting policies

1.1 Basis of preparation

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 (FRS102) issued in October 2019, the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS102), the Charities Act 2011 and applicable regulations.

The charity has applied Update Bulletin 1 as published on 2 February 2016 and does not include a cash flow statement on the grounds that it is applying FRS 102 Section 1A.

PSC Support is a charity in England and Wales. The address of the registered office is given in the charity information contents page of these financial statements.

The financial statements are prepared on a going concern basis under the historical convention (modified to include certain items at fair value). The financial statements are presented in sterling, which is the functional currency of the charity and rounded to the nearest pound.

The financial statements have been prepared under the historical cost convention as modified by the inclusion of investments at market value.

1.2 Incoming resources

Donations, legacies and other forms of voluntary income are recognised as incoming resources when receivable.

1.3 Expenditure and liabilities

Expenditure is accounted for on an accrual basis and recognised at the time the liability is incurred.

1.4 Tangible fixed assets and depreciation

Tangible fixed assets are stated at cost less depreciation. Depreciation is provided at rates calculated to write off the cost less estimated residual value of each asset over its expected useful life, as follows:

Fixtures, fittings & equipment 25% straight line

1.5 Investments

Fixed asset investments are stated at market value.

Unrealised gains or losses are recognised each year within the Statement of Financial Activities.

1.6 Stock

Stock is valued at the lower of cost and net realisable value.

1.7 Financial instruments

A financial asset or a financial liability is recognised only when the entity becomes a party to the contractual provisions of the instrument. Basic financial instruments are initially recognised at the amount receivable or payable including any related transaction costs, unless the arrangement constitutes a financing transaction, where it is recognised at the present value of the future payments discounted at a market rate of interest for a similar debt instrument. Current assets and current liabilities are subsequently measured at the cash or other consideration expected to be paid or received and not discounted.

1.8 Restricted funds

Restricted funds are subject to specific conditions by donors as to how they may be used. The purposes and uses of the restricted funds are set out in the notes to the accounts.

12

PSC SUPPORT

NOTES TO THE ACCOUNTS (CONTINUED) FOR THE YEAR ENDED 5 APRIL 2024

2
Grants
Information Days
E-Learning
Clinical Trials
3
Interest Receivable		 2024
£
10,426
21,225
-		 2023
£
-
550
31,651 550
15,410 2,223

13

PSC SUPPORT

NOTES TO THE ACCOUNTS (CONTINUED) FOR THE YEAR ENDED 5 APRIL 2024

4
Total resources expended
Grants
Restricted funds
Unrestricted funds
Direct charitable expenditure
Salaries unrestricted (including employer NI and
pensions)
Salaries restricted (including employer NI and
pensions)
Other Staff costs
General administration
Advocacy
Awareness and Support (unrestricted)
Awareness and Support (restricted)
Other
Depreciation
Fundraising
Advertising and promotion
Merchandise
Governance costs
Accountancy
Legal cost
Independent examiner
Total resources expended		 Total
Total
2024
2023
£
£
86,000
38
-
8,504
86,000
8,542
100,597
86,341
31,806
-
12,398
6,409
3,042
3,140
15,994
4,072
9,139
9,845
11,904
-
-
3,148
1,484
1,055
186,364
114,010
19,371
2,678
2,915
1,247
22,286
3,925
5,529
-
7,664
-
750
600
13,943
600
308,593
127,077

14

PSC SUPPORT

NOTES TO THE ACCOUNTS (CONTINUED) FOR THE YEAR ENDED 5 APRIL 2024

5 Trustees

Trustees were reimbursed a total of £358.48 during the year for travel expenses (2023: £122).

£

6 Fixed Assets

Cost at 6 April 2023
Purchases at cost
Cost at 5 April 2024
Depreciation at 6 April 2023
Charge for the year
Depreciation at 5 April 2024
Net book value at 5 April 2024
Net book value at 5 April 2023
7
Debtors
Accrued income
Prepayments
Other Debtors
8
Creditors: amounts falling due within one
year
Aged creditors
Accruals		 2024
£
55,712
1,855
3,182		 4,680
2,067
6,747
1,904
1,484
3,388
3,359
2,776
2023
£
15,448
24
-
60,749 15,472
2024
£
6,260
3,755		 2023
£
-
3,027
10,015 3,027

15

PSC SUPPORT

NOTES TO THE ACCOUNTS (CONTINUED) FOR THE YEAR ENDED 5 APRIL 2024

9 Restricted Funds

PSC Research
Information Days
Education
As 5 April 2024
PSC Research
Education
As 5 April 2023		 Movement in funds
Balance at 6
April 2023
Incoming
Resources &
Transfers
Outgoing
Resources &
Transfers
Balance at 5
April 2024
£
£
£
£
39,222
78,584
117,806
-
-
11,904
11,904
-
550
21,225
-
21,775
39,772
111,713
129,710
21,775
Balance at 6
April 2022
Incoming
Resources &
Transfers
Outgoing
Resources &
Transfers
Balance at 5
April 2023
£
£
£
£
7,000
32,260
38
39,222
-
550
-
550
7,000
32,810
38
39,772

Description of restricted funds

Research – to be spent on research projects relating to PSC.

Information Days – to be spent on events to support and inform people with PSC and their support networks

Education – Educational PSC project for medical practitioners

10

16

PSC SUPPORT

NOTES TO THE ACCOUNTS (CONTINUED) FOR THE YEAR ENDED 5 APRIL 2024

Analysis of net assets between funds

Unrestricted
Funds
£
Fund balances at 5 April 2024 are represented by:
Fixed assets
3,359
Current assets
624,068
Creditors: amounts falling due within one year
(10,015)
617,412
11
Commitments
At 5 April 2024 the charity had committed funds
Research
12
Employees
During the year 2023-24 there were 4 employees
(During the year 2022-23 there were 3 employee)
Salary costs including NI
Pension
No employees received employee benefits (excluding employer pension
costs) of more than £60,000.		 Unrestricted
Funds
£
3,359
624,068
(10,015)		 Restricted
Funds
Total Funds
£
£
-
3,359
21,775
645,843
-
(10,015)
617,412 21,775
639,187
2024
2023
£
£
43,500
53,000
43,500
53,000
2024
2023
£
£
126,447
82,564
5,956
3,777
132,403
86,341

17