2022-04-05-accounts

				Trustees' Annual Report	Trustees' Annual Report	Trustees' Annual Report	Trustees' Annual Report	Trustees' Annual Report	Trustees' Annual Report	for theperiod	for theperiod	for theperiod	for theperiod	for theperiod
				From	Period start date				T o	Period end date
					06	April		2021		05	April			2022
	Section A				Reference and administration details
				Charity name			PSC Support
	Other names charity is known by
		Registered charity number (if any)					1175427
			Charity's principal address				3 Gary O’Donnell Drive Didcot Oxfordshire Postcode OX11 6BT
													OX11 6BT

Names of the charity trustees who manage the charity

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20	Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (if any)
	David Adams			Trustees
	Roger Chapman			Trustees
	Martine Walmsley		Trustee from 10 May 2021 to 16 May2022	Trustees
	James Gosney		Trustee until 22 April 2022	Trustees
	GaryTaylor		Trustee until 12 May2021	Trustees
	James Brown			Trustees
	Tim Waterson			Trustees
	Nick Kane			Trustees
	Rick Dallaway			Trustees
	ShelleySpence			Trustees

TAR

1 PSC Support MW20220515

		Names of the trustees for the charity, if any, (for example, any custodian trustees)
		Name	Dates acted if not for whole year

Names and addresses of advisers (Optional information)

Names and addresses of advisers (Optional information)	Names and addresses of advisers (Optional information)	Names and addresses of advisers (Optional information)
Type of adviser Name Address
Independent Examiner	Stuart Bates	Wenn Townsend, Chartered Accountants, 10 Broad Street, Abingdon OX14 3LH

Name of chief executive or names of senior staff members (Optional information)

Section B Structure, governance and management

Description of the charity’s trusts

Constitution Type of governing document (eg. trust deed, constitution ) Charitable Incorporated Organisation How the charity is constituted (eg. trust, association, company) Trustees are appointed by existing Trustees Trustee selection methods

• (eg. appointed by, elected by)

Additional governance issues (Optional information)

You may choose to include additional information, where relevant, about:

The Trustees are using the Charity Governance Code as a framework to build and improve on governance standards.

• policies and procedures adopted for the induction and training of trustees;

• the charity’s organisational structure and any wider network with which the charity works;

• relationship with any related parties;

• trustees’ consideration of major risks and the system and procedures to manage them.

Section C Objectives and activities

TAR

2 PSC Support MW20220515

Our charitable objects are: 1. The relief of those suffering from liver diseases or disorders (in particular but without limitation PSC), and related disorders; Summary of the objects of the 2. The advancement of public awareness of PSC, other liver disease charity set out in its governing document and related disorders; and 3. The advancement of both the treatment and prevention of PSC and other liver disease and related disorders.

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 decision-making.

Our prioritised short-term goals are as follows: 1. Research o We will establish a pathway towards finding a cure or effective treatment for PSC 2. Information and Support Summary of the main activities o We will provide support and information to improve the undertaken for the public quality of life and wellbeing of people affected by PSC benefit in relation to these 3. Improving Care objects (include within this o We will advocate for the highest standards of care for section the statutory people living with PSC declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

Additional details of objectives and activities (Optional information)

TAR

3 PSC Support MW20220515

A major aspect of PSC Support’s work is to fund high-quality PSC research. There is currently no known curative treatment, or treatment that is known to slow the progression of PSC. Our priorities are to support and drive the development of a curative treatment, treatment which slows the progression of PSC and treatment that alleviates the symptoms and psychological effects of PSC and improves PSC patients’ quality of life. PSC Support has published and operates a clear policy on grant-making. Our conflicts of interest policy ensures that for each research funding application, all reviewers are independent and impartial.

Our research strategy - what we intend to fund: The establishment and development of: ● Biobanking ● Biomarkers Research into: ● Prevalence/epidemiology ● Aetiology and identification of subpopulations of PSC patients ● Treatment ● Outcomes including liver transplantation ● Clinical trials in PSC Social research to investigate: ● Quality of life ● Survivorship

• Transition to adult services

You may choose to include further statements, where relevant, about:

• policy on grantmaking;

• policy programme related investment;

• contribution made by volunteers.

• Compliance and adherence

• How we fund research ● PSC Support funds high quality research related to PSC. ● We expect investigators to disseminate the results of their research to both the general public and the scientific community.

• ● PSC Support encourages multi-centre, collaborative research. ● PSC Support will encourage projects that link into other funding streams and national research priorities.

• ● Applications can include funding for pilot studies, funding equipment (but not IT equipment), and funding social and nursing research.

• ● Travel and internal audit grants will not normally be awarded except in exceptional circumstances.

• ● Funds will not be awarded retrospectively.

• The funding mechanism for PSC Support Research Project Grants ● The frequency and value of funds available for the Grant(s) will be determined each financial year, and are listed under information for applicants.

• Applicants may apply for grants up to the available amount. ● PSC Support reserves the right to offer funds to more than one applicant per round up to and including the amount of available Grant funds.

• ● PSC Support is an NIHR Non-Commercial Partner. PSC Support Research Project Grants can be eligible for NIHR Clinical Research Network (CRN) support.

• Research grant scope ● Worldwide

• PSC Support Directed Research PSC Support also prioritises research and directs its own, patient-led research.

TAR

4 PSC Support MW20220515

Contribution made by volunteers

Our Trustees and Treasurer are not remunerated aside from any expenses they directly incur on behalf of PSC Support.

The Board of Trustees recognises the significant contribution to the charity made by volunteers, including Martine Walmsley, who undertakes the day-to-day management and operational activities of the charity on a full-time basis, handles the PSC Support Helpline calls and emails and moderates the Facebook group; Keith Anderson, who is the charity Treasurer; and Lorraine Failes, who is a long-standing Facebook moderator for the PSC Support Facebook group. We are also very grateful to the long-term support from Gareth and Vicki Weeks in moderating our Facebook group, to Josie and Malcolm Eddy who send out PSC Support merchandise, to Iain McClenaghan for his support as webmaster, to Noelie Srivastava for graphic design services and to all the patients and families who have provided their perspectives in this year’s support, advocacy and research initiatives.

PSC Support works with dedicated medical professionals, who give their time and expertise to PSC Support community at no cost. This year, we are grateful for the support from: Professor David Adams, Professor Graeme Alexander, Dr Richard Aspinall, Dr Annika Bergquist, Dr Luke Boulter, Teresa Brevini, Dr Roger Chapman, Dr Clare Constantinou, Dr Emma Culver, Dr Jessica Dyson, Dr James Ferguson, Professor Michael Heneghan, Dr Deepak Joshi, Professor Ansgar Lohse, Dr Kate Lynch, Dr Elena Marcus, Dr Neil McDougall, Dr Kathy McKay, Dr Nabil Quraishi, Dr Mussarat Rahim, Dr Simon Rushbrook, Dr Fotis Sampaziotis, Dr Francesca Saffioti, Dr Christoph Schramm, Dr Keith Siau, Amanda Smith, Dr Brijesh Srivastava, Professor Douglas Thorburn, Dr Palak Trivedi, Dr Veronica Ranieri, Dr Mike Williams, and Dr Andrew Yeoman.

Section D Achievements and performance

TAR

5 PSC Support MW20220515

Summary of the main achievements of the charity during the year

Fundraising

Voluntary fundraising income for the charity for the year ending 5 April 2022 was £184,609, of which £2,063 was restricted for research only. For reference, the total income for the year ending 5 April 2022 was £185,682. Thanks to the remarkable innovation and commitment of patients and family members, we saw a 56% increase in donations compared to 2020/21.

Expenditure

Total expenditure for the year ending 5 April 2022 was £42,795. Activities were reviewed and funds reallocated as the financial year progressed in order to maximise value for money and use charity resources efficiently.

COVID-19

During this financial year, the charity’s activities continued to be impacted by COVID-19. This meant travel and face-to-face meetings were infrequent, research activity in the UK continued to be affected, particularly academic research.

Organisational risk, limitations and stability

The Trustees of PSC Support held quarterly virtual meetings and kept in close contact with the charity’s volunteers through Martine Walmsley.

All Trustees receive copies of income and expenditure figures for the financial year to date every month from the PSC Support Treasurer. The Board also 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 charity’s part-time single member of staff (Programme Development Officer) commenced maternity leave in 2Q2021.

Following the Trustees’ strategic decision in the previous financial year to increase the charity’s capacity by appointing a Chief Executive, recruitment began in 3Q2021. The successful candidate was appointed in February 2022, commencing work with PSC Support in May 2022.

Research

The pandemic continued to impact the UK healthcare system and some (particularly research staff) were not appointed back to their original positions until towards end of the financial year.

Despite this, PSC research remained a priority for PSC Support. A funding round began in March 2022 and is due to complete in May/June 2022.

The charity also continued to dedicate time to supporting 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. We ended the financial year with clinical trials and research studies at 16 different sites across the UK. Additional research activities included: 1. Being a co-applicant on national and international PSC research study funding applications; 2. Running focus groups of 8-10 people living with PSC each at regular intervals for academic research studies and steering 6 PSC Support MW20220515

TAR

• groups. We are very grateful to the patients who joined our research panels to provide feedback to researchers;

• 1. Representing PSC patients in the European Reference Network (ERN RARE-LIVER) as the Co-Lead of the PSC Working Group (MW) and conducting an international patient care survey to use to advocate for higher standards in PSC patient care.

• Publications:

• Fatourou E, King D, Hyde S, Walmsley M, Alexander G, Trivedi P, Rushbrook S, Thorburn D, PSC IC. PMO-35 UK national audit on diagnosis and management of colitis in patients with primary sclerosing cholangitis. dx.doi.org/10.1136/gutjnl-2021-BSG.174

• ● Francque SM, Marchesini G, Kautz A, Walmsley M, Dorner R, Lazarus JV, Zelber-Sagi S, Hallsworth K, Busetto L, Frühbeck G, Dicker D. Non-alcoholic fatty liver disease: A patient guideline. JHEP Reports. 2021 Oct 1;3(5):100322. https://doi.org/10.1016/j.jhepr.2021.100322

• ● Zecher B, Buescher G, Willemse J, Walmsley M, Taylor A, Leburgue A, Schramm C, Lohse AW, Sebode M. Prevalence of COVID-19 in patients with autoimmune liver disease in Europe: A patient-oriented online survey. United European Gastroenterol J. 2021 doi.org/10.1002/ueg2.12100

Support and information

Because of the challenges presented by COVID-19, people living with PSC needed more support than ever. Although we could not meet face-to-face, PSC Support continued to provide timely information, resources and support through the www.pscsupport.org.uk website, news bulletins, social media, and online communities, as well as live, online presentations and Q&As (‘Ask the Expert’ sessions).

Special thanks to the volunteers who moderate of our Facebook group and maintain our Helpline, who continued to provide support to people with PSC over all Bank Holidays, particularly holiday periods when other organisations temporarily halted support.

Launch of the PSC Support App

The PSC Support App was launched in June 2021 to empower PSC patients to manage symptoms and hospital appointments, and get the right care at the right time. The app provides the tools to:

• track health and symptoms

• share health reports

• customise questions for use in appointments

• understand the minimum UK care standards

• stay up-to-date with the latest PSC news and research

• access the digital PSC Alert Card

• access support

We are very proud that the PSC Support App was shortlisted as a finalist for the prestigious UK App Awards in October 2021.

Advocacy

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

TAR

7 PSC Support MW20220515

The charity ended the financial year with the following key committed	The charity ended the financial year with the following key committed
funds:
Committed Designated Items	Amount
Research Reference: 040519UKPSC "The Primary Sclerosing	£2,000
Cholangitis (PSC) 600: A UK-PSC Initiative" (Final 10% of grant
subject to satisfactoryfinal report)
Research Reference: 160219EG "The development of a diagnostic	£1,000
blood test for PSC" (Final 10% of grant subject to satisfactory final
report)
Research Reference: 20220310SREC "Validating a Diagnostic	£30,000
Biomarker in Primary Sclerosing Cholangitis" (subject to peer
reviewed application appraisal in current fundinground)
Research Reference: FARGO "FAecal microbiota transplantation in	£50,000
primaRy sclerosinG chOlangitis" (subject to satisfactory milestone
reports over fouryears)
Liver Transplant Guidelines	£2,500
	£85,500

Section E Financial review

Brief statement of the charity’s policy on reserves Details of any funds materially in deficit Further financial review details	Our reserves policy is to maintain twelve months’ operating costs (unrestricted funds) in addition to any designated funds, to enable normal operating activities to continue over a period of 12 months should a shortfall in income occur and to take account of potential risks and contingencies that may arise from time to time. This also supports decision-making when planning additional support activities and making research grants. Operating costs are deemed to include expected on-going support costs (including e-bulletin production, website maintenance and feature enhancement, meeting costs), promotional materials and general administration costs. This allows PSC Support to plan additional projects whilst ensuring that operating costs continue to be met. 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 monthly and the forecast on a quarterly basis. The Trustees regularly reviewed funds/reserves levels throughout 2021/22, focusing funds on the most important priorities. The reserves value held by the charity (which equals one year of running costs), stands at £115,613. This includes the increased pay expenditure allocated to new staff. PSC Support does not commit to expenditure if funding is not available.
	No funds were materially in deficit.
	(Optional information)

TAR

8 PSC Support MW20220515

You may choose to include additional information, where relevant about:

• the charity’s principal sources of funds (including any fundraising);

• how expenditure has supported the key objectives of the charity;

• investment policy and objectives including any ethical investment policy adopted.

Financial position at the end of the period

At the end of the period, PSC Support held £401,158. The total unrestricted charity funds as at 5 April 2022 is £394,158, and restricted funds was £7,000.

Designated funds are expenditure that the charity has ‘ringfenced’ as future spend for specific items. These funds can either be ‘committed’, where the charity has made either a formal or informal commitment to spend, or ‘flexible’, where the charity has discretion about whether it would like to proceed with the spend. At the end of 2021/22, the charity has £111,507 of designated funds, with £59,543 of these ‘committed’ and an additional £143,730 set aside for reserves.

Research expenditure in 2021/22 was held back because of the COVID-19 pandemic. However, PSC Support’s own research activities did not slow down and by the year end, £83,000 of the designated funds was committed to specific research projects.

Section F Other optional information

Section G Declaration

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s) Tim Waterson Full name(s) Rick Dallaway Position (eg Secretary, Trustee Trustee Chair, etc) Date 7 October 2022

TAR

9 PSC Support MW20220515

PSC SUPPORT cio - REGISTERED CHARITY NUMBER 1175427 RECEIPTS & PAYMEKfs 6th APRIL 2021 to 5th APRIL 2022 Totsl Funds FuThds 202 20 202 RECEIPTS l)onations & Fund Raisi General Donations & Fund Raising Restricted Donationsfor PSC Research Gift Aid Reclaimed IlncludirE Via Intemetl I68￿30 168,830 98,986 5.550 13,422 117,958 13,716 182.546 13,779 184,609 2,063 Sale of PSC Su rt Merchandise Hoodies, Polo & T Shirts Running T Shirts & Vesrs Mugs Pin Badge5 Wristbands 236 236 225 260 260 16 38 183 183 53 723 723 332 Other Recei Acute Cholangitis Alert Cards- Foreign Shipping Refund of D85 Checks Fee Refund of EASL & ILC Conference Fees Rehjnd of Outsvard Airfares to ECRD Stcdholm Conferen by Ryanair 15 23 87 87 176 86 494 Interest Credited to Deposit Accounts Reimbursement for Personal Purchase (harged to Charity's Credtt Card in Error 237 237 350 350 778 TOTAL RECEIPTS 183.619 2.063 185.682 119,068 PAYMENTS General Administration Combined Charity Insurance Credit Card Fee Current Account Bank Charges Data Protection Fee Ilnformation Commissioner's Offi￿) DBS Checks on Volunteers Microsoft Office 365 Annual Subscription Postage Printer Usage Service User Surveys (SUn￿V Monkey) Soho66 Phone Services (Admin) 552 30 552 30 590 30 12 12 35 35 94 33 36 29 33 36 33 30 29 42 306 109 306 109 306 162 Page I

Stationery UK P05tbox 80 1,224 80 1,224 60 1,387 Staff Em ment Gross Salary & SMP Home Working Broadband Allowan Home Working Heating & Lighting Allowance Salary Deductions for Tax. Nl, Pension & Student 16.711 336 2Crf) 16,711 336 200 22,890 392 200 Loan Repayment {2,7091 1.374 1.621 462 12.7091 1,374 1,621 462 15,0661 4,151 2.054 546 HMRC Payments (Employee & Employer) Pension Contribution5 (Employee & Employer) Payroll Charges- Wenn Townsend Credit Card Fee Employee Training Mobile Phone Usage Office Equipment. Furniture. Software & SundriÈs Recrustment o* CEO- Charisma Recruitment Ltd Legal Costs re CEO'S Contract of Employment 30 30 25 25 24 24 96 57 57 446 S,(K)O 1,890 25,021 1,890 25.021 25,739 Alfvoca Benefits & Work Publishing Subscription Disability Rights UK Membership EASL Annual Membership Eurordis Annual Membership Registration for Online EASL Intemational Liver Congress RegÈstration for Online EURORDIS European ConfererKe Genetic Alliance UK Membership 77 97 102 188 91 175 91 175 91 72 550 Awaréness & Su A6 Flyers Acute Cholangttis Atert Cards B￿SL Conference- tharge for PSC Support Stand Mailchimp Subscription for NewslÈtters Mobile Phone Usage for Helpline IGiff Gaffl Legal Fees re Privacy Policy & T&Cs IPatient Support Appl Legal Fees re Privacy Policy & T&Cs IWebsiÉel Online Helpline Booking System Patient Support App Development IAPPOLYI Patient Support App Hosting IAPPOLYI Legal Fees re Staffing Helpline Soho66 Phone SeMces1Support} Webstte Domain Registration Renewal IFasthosts} Website Hosting (Fasthostsl Websitè Hosting IUpdraftPlusl Zoom Pro Subscription Indudi 19 234 234 122 528 56 528 56 43 1,894 3,788 56 2.940 56 2.940 14.156 1,379 77 1.379 77 89 162 ioi 126 89 162 162 54 144 144 7,219 201 20,612 7.219 Page 2

Fundraisi A6 Flyers Challenge Event Places (Nova) Collection Boxes Facebook Advertising Fundraising Banner Fundraising Training Just Giving London Marathons 2021 Entries Iwirtual & In Person) Virtual London Marathon 2021 Competttion Prizè PayPal Fees Deducted from Donations Received Postage & Packaging 19 670 24 670 24 55 47 225 562 561 561 75 75 55 17 1.564 196 196 1,576 1,576 Govemance Independent Examination of 2020/21 Accounts Purchase & Distribution of P5C S T Shirts RunningT Shirts Wristbands Merchandise Flyers PayPal & eBay Fees Postage & Packaging 610 596 264 20 610 596 264 20 92 36 128 98 1.656 98 1.656 Research Education l Research re ainical Trials inical Trials Packs- PayPal Fees Dedutted from Donati￿ Drjesus Banales Ispainl 496 496 902 1,405 3,613 3,613 4,515 5,018 Other nditure Personal Purchase Charged to Charity's Credtt Card in Error (Fully Reimbursed) TOTAL PAYMENTS 39.182 3.613 42.795 50.587 SURPLUS / DEFICIT 144.437 11.550) 142.887 68,481 Transfers Between Restritted & Unrestricted Funds OPENING BANK BALANCES AT 614/2021 249.721 8.550 258,271 189,790 CLOSING BANK BALANCES AT 51412022 Current Account PayPal Account 61,030 128 61,030 128 3.228 43 Page 3

Deposit Accounts 333,tJXI 7.OlXS 340.OCKI 401. 255,(X)O 258.271 MERCHANDISE & OTHER ASSETS HELD AT S 2022 Various Office Equipment & Furniture, Mobile Phone, Various Fund Raising & Infonnational Resources, 69 T Shirts, 20 Running T Shirt5, 20 Running Vests, 55 Mugs. 725 Wristban(ts & Other Mirtor Item& DEBTS LIABILMES GUARANTEES The charrty ha5 no outstandinE debts. It has madè the following commitments: 11 It has guaranteed to pay a retained total of £3.LU) to two researthers when their projerts have been completed to the charity's satisfartion. 21 The charity has undertaken to contribute £2,500 towards the cost of produong new UK knver Transplant Guidelines. 31 The charity has condttionally undertaken to contFibute £30.LKK) to a Diagn05tic Blood Test Research Project and £50,000 to the FARGO PSC Research Trial. Keith V Anderson IPSC Support Treasurer) rimothy Waterson IPSC Support Chair of Trustees 3011212022 Date Page 4

CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the trusteesl members of PSC SupFlOrt On accounts for the year ended 51h April 2022 Charlty no (If any} 1175427 Set out on pages 1to4 I report to the trustees on my examination ofthe accounts of the above charity {"the Trusf'} for the year ended 51h April 2022. Responsibilltles and As the charity trustees of the Trust, you are responsible for the preparation basis of report of the accounts in accordan￿ with the requirements of the Charities Act 2011 {"the Acr). I report in respect of my exarnination 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){bl of the Act. I have completed my examination. I confim that no material matters have come to my attention in connection with the examination which oives me cause to believe Ihal in, any material respect.. accounting records were not kept in accordance with sedion 130 of the Act or the accounts do not accord with the accounting records Independent examinor'8 Statomont 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. Signed". Date: Name: stuart Bates Relevant professional qualificatlon{s) or body (if any): BA FCA CTA Address: Victoria House, 10 Broad Street Abingdon OX14 3LH Section B Disclosure Only complete iflhe examiner needs to highlight matters of concern (see CC32, Independent examination of ¢harity accounts.. directions and guidance for examiners).

Givo h•r• bri•f details of any Items that the examiner wishes to disclose.