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2021-04-05-accounts
Trustees' Annual Report for theperiod
From Period start date To Period end date
06 April 2020
05		 April 2021

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

Names of the charity trustees who manage the charity

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20		 Trustee name Office (if any) Dates acted if not for whole
year		 Name of person (or body)
entitled to appoint trustee
(ifany)
David Adams Trustees
Roger Chapman Trustees
Martine Walmsley To 27 October 2020 Trustees
James Gosney Trustees
GaryTaylor Trustees
James Brown From 07 June 2020 Trustees
Tim Waterson From 08 June 2020 Trustees
Nick Kane From 08 June 2020 Trustees
Rick Dallaway From 13 June 2020 Trustees
ShelleySpence From 20 July2020 Trustees
Michael McVerry From 08 June 2020 to
14 March 2021		 Trustees

Names of the trustees for the charity, if any, (for example, any custodian trustees)

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Name Dates acted if not for whole year
Names and addresses of advisers (Optional information)
Type of adviser Name Address
Independent Stuart Bates Wenn Townsend, Chartered Accountants, 10 Broad Street,
Examiner Abingdon OX14 3LH
Name of chief executive or names of senior staff members (Optional information)
Volunteer CEO: Martine Walmsley
One staff member: Maxine Tapp (Programme Development Officer)

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

Additional governance issues (Optional information)

The Trustees are using the Charity Governance Code as a framework to You may choose to include build and improve on governance standards. additional information, where relevant, about: ● policies and procedures adopted for the induction and training of trustees;

Section C Objectives and activities

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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 objectives:

Additional details of objectives and activities (Optional information)

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

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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, in particular 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 Gareth and Vicki Weeks for their dedication 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 Luke Boulter, Dr Roger Chapman, Dr Clare Constantinou, Dr Emma Culver, Dr Jessica Dyson, Dr James Ferguson, Dr Hermien Hartog, Professor Michael Heneghan, Dr Deepak Joshi, Dr Eilis Kennedy, Professor Ansgar Lohse, Dr Kate Lynch, Dr Kathy McKay, Dr Nabil Quraishi, Dr Mussarat Rahim, Dr Simon Rushbrook, Dr Francesca Saffioti, Dr Christoph Schramm, Dr Keith Siau, Amanda Smith, Dr Brijesh Srivastava, Professor Douglas Thorburn, Dr Palak Trivedi, Dr Veronica Ranieri and Dr Andrew Yeoman.

Section D Achievements and performance

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Summary of the main achievements of the charity during the year

Fundraising

Voluntary fundraising income for the charity for the year ending 5 April 2021 was £117,958, of which £8.550 was restricted for research only. For reference, the total income for the year ending 5 April 2021 was £119,068.

Expenditure

Total expenditure for the year ending 5 April 2021 was £50,587.

COVID-19

During this financial year, the charity was impacted by COVID-19. The UK was locked down for much of the period, and the volunteers and staff member were considered clinically vulnerable. This meant travel and face-to-face meetings were not possible (as was the case for much of the world). In addition, research activity in the UK ground to a halt, including recruitment to PSC clinical trials. Fundraising events were unable to take place and the first quarter of this financial year saw the charity’s income cut in half. Thanks to the remarkable innovation and commitment of patients and family members of PSC Support, the charity ended the year with only 20% less income than would have been predicted in a nonCOVID financial year.

Organisational risk, limitations and stability

The Trustees of the CIO held quarterly virtual meetings and kept in close contact with the volunteer CEO. To ensure that the charity was wellgoverned and able to thrive despite the COVID-19 pandemic, six new Trustees were appointed in June and July 2020, bringing in professional skills that included legal, data protection, income generation, communications and human resource experience and expertise.

The new Trustees have each made significant contributions to the governance and operation of PSC Support during their first year.

In this financial year, the new Board held a series of meetings to review the charity’s short-, medium- and long-term strategy (continuing into the first quarter of the 2021 financial year). Finding a balance between prudence to ensure the long-term viability versus proactively spending to meet the strategic aims of the charity, was paramount throughout the year. The Trustees thus planned for a substantially reduced income over the year and was able to continue to support our beneficiaries in line with our charitable objects.

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.

Research

The pandemic naturally impacted our whole healthcare system and PSC clinicians, nurses and researchers were reposted into general medicine to care for COVID-19 patients or to conduct COVID-19 related research studies. This meant that minimal research took place, many academic and commercial research studies were paused and there was uncertainty about when and if they would resume.

PSC Support granted ‘no cost extensions’ to existing PSC Supportfunded research projects i.e. allowed studies a time extension to complete at no additional cost to PSC Support. In the financial 2020/21,

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there was no expenditure on research. However, PSC research remained a priority for PSC Support. Activities were reviewed and funds reallocated as the financial year progressed in order to maximise value for money and use charity resources efficiently.

The charity ended the financial year with the following key committed funds for research:

  1. It has guaranteed to pay a retained total of £7,500 to three researchers when their projects have been completed. This is the 10% held in our accounts until completion of the research projects.

  2. The charity has conditionally undertaken to contribute £30,000 to a Diagnostic Blood Test Research Project following positive initial findings. This is subject to the usual stringent peer review evaluation of the application.

  3. The charity has conditionally undertaken to contribute £50,000 to the FARGO PSC Research Trial. This is a clinical trial to evaluate the benefit of faecal microbiota transplantation as a treatment for PSC. The project is currently being evaluated by a potential cofunder. The outcome of the evaluation is expected in the first quarter of 2021.

Even though clinical trials were on hold, we 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. Our close partnerships with PSC researchers meant that there were five different clinical trials testing drugs in 2020 with more in the pipeline. We also worked with researchers to develop machine perfusion research projects and repurposing existing drugs for PSC trials. We are very grateful to the patients who joined our research panels.

Support and information

Because of COVID-19, people living with PSC needed more support than ever. Although we could not meet face-to-face, PSC Support continued to provide information, resources and support through the www.pscsupport.org.uk website, news bulletins, social media, and online communities.

The beginning of the pandemic saw our Facebook activity level triple. People with PSC needed PSC-specific information about the risks of coronavirus, COVID-19 restrictions and what the changes meant for PSC patients, their healthcare and social limitations, and information about their eligibility for the COVID-19 vaccines. We worked with experts to ensure that PSC patients had a strategy to safely handle cholangitis during the lockdowns. Information from the government was haphazard and confusing, and inaccurate information was circulating online to the general public. PSC Support ensured people with PSC had the right information at the right time.

One patient said, “I’ve personally found the speediness of…up-to-date information remarkable… thank you.”

PSC Support was agile in its response to the impact of COVID, and invited additional Facebook group moderators to work with us to ensure that our Facebook group continued to be well-moderated, so members could rely on the information in the group and have a safe space to discuss any aspect of PSC. We moderated nearly 40,000 comments over the year. At the height of the first wave, we also ran daily online ‘drop-ins’ to allow members to connect and enjoy light-hearted conversation when

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they needed it. One Facebook group member said, “…this is the best place to be for all your questions…”

The PSC Support Helpline continued to be a valuable source of support for patients. Calls are handled by a volunteer and feedback includes:

“The person I spoke to really helped me to feel less alone”

“Thank you for helping me make sense of what the doctor said”

“…a lifeline…”

Since face-to-face meetings were out of the question, the charity ran nine ‘Ask the Expert’ sessions, using Zoom. These were live, online Q&As with PSC specialists. These sessions were popular and attracted over 8,000 views.

Feedback included, “Thanks so much for this I’ve learned loads!”

“Thanks a million it was very informative and reassuring”

The valuable wallet-sized PSC Alert Card, launched on 01 February 2020 was converted into a pdf so that it was downloadable and available to all patients even when COVID-19 restrictions meant we couldn’t post out the cards.

One patient said, “Excellent, used on my last admission to hospital.”

Another said, “a true lifesaver.”

Advocacy

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

Section E Financial review

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Brief statement of the charity’s policy on reserves

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 2020/21, focusing funds on the most important priorities, and repurposing some flexible designated funds from projects that were unlikely to go ahead successfully because of COVID-19 restrictions.

The reserves value held by the charity (which equals one year of running costs), stands at £44,072. This is a provisional reserves figure based on employing one member of staff pending decisions made by Trustees regarding staffing and strategic priorities for 2021/22 (meetings planned May 2021). The lower operating costs than planned at the beginning of the 2020/21 financial year reflect the anticipated reduction in travel and attendance at face-to-face meetings because of COVID.

PSC Support does not commit to funding if the money is not available.

Details of any funds materially in deficit

No funds were materially in deficit.

Further financial review details (Optional information)

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

Financial position at the end of the period At the end of the period, PSC Support held £258,271. The total unrestricted charity funds as at 5 April 2021 is £249,721, and restricted funds is £8,550.

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 2020/21, the charity has £95.1k of designated funds, with £90.1k of these ‘committed’.

Research expenditure in 2020/21 was held back because of the COVID19 pandemic. However, PSC Support’s own research activities did not slow down and by the year end, £87,500 of the designated funds was committed to specific research projects.

Section F Other optional information

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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) Martine Clare Walmsley Position (eg Secretary, Trustee Trustee Chair, etc) Date 16 May 2021

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PSC SUPPORT cio - REGisfERED CHARITY NUMBER 1175427 RECEIPTS & PAYMEKfs 6th APRIL 2020 to 5th APRIL 2021 Total r¥x41 Jnd5 Fvnd5 Jnds Fund5 RECEIPTS Oonati &Fun Raisi General Donations & Fund Raising Restrirted Donations for PSC Research Gift Aid Reclaimed Ilncluding Via Intemet} 98,986 98,986 5.550 13.422 117,958 88.910 19,867 7,842 116.619 5,550 10,422 109.408 8,550 Sale of PS Su MercharKJi Hoodies. Polo & T Shirts RunningTShirts & Vests Mugs Pin Badges Wristbands 225 16 225 16 38 658 145 33 53 53 332 118 960 332 Other Recei Acute Cholangitis Alert Cards- Fore4gn Shipping Expenses Reimbursed by Third Parties (Re Employee) Expenses Reimbursed by Third Parties IRe Trustee) Partial Refund of ILC Conference Fees Return of Newport Information Day Cash Float Refund of Outward AÈrfares to ECRD Stockholm Conference by Ryanair 124 536 435 176 176 100 86 Partial Refund of Trtjstees, Safeguarding Checks Charge Interest Credited to Deposit AccoiJr*ts P8yPal Giving Fund Recredits Followin8 Merchandtse Sales Reirnbursement for Personal Purchase Charged to Charity's Credtt Card in Error 18 1,219 494 494 778 778 2,472 TOTAL RECEIPTS 110.518 8.550 119,W ￿).051 PAYMENTS General Administration Combined Charity Insurance Credit Card Fee Data Protection Fee Ilnfom)ation Commissionerfs Office) DBS Checks on Volunteers Go Cardles5 Annual Subscription 5S 590 445 30 74 Page I

Microsoft Office 365 Annual Subscription Postage Printer Usage Service User Surveys (Survey Monkey) Soho66 Phone Services {Adminl Stationery UK Postbox 33 30 42 33 30 42 33 37 42 162 162 179 1,387 1.387 1.248 Staff Em ment Gross Salary & Bonu5 Home Working Broadband Allowance Home Working Heating & Lighting Allowance Salary t)edurtions for Tax. Nl, Pension & Student 22,89) 392 22,890 392 2(KJ 22.441 596 200 21JJ Loan Repayment - 5,066 4,151 2,054 5.115 4,237 2.276 324 42 HMRC Payments (Employee & Employer) Pension Contribution5 (Employee & Employer) Payroll Charge5- Cox & Co Payroll Charge5- Wenn ToWnSer￿1 Credit Card Fee Mobile Phone Usage Office Equipment, FurnÈture. Software & Sundries 4.151 546 30 96 30 96 95 407 446 25,739 25,739 25,533 Benefits & Work Publrshing Subscription Disability Rights UK Membership EASL Annual Membership Eurordis Annual Membership Registration for Online EURORDIS European Conference Genetic Alliance UK Membership ILC London Registration 2019 Research Suryey Prize Employee's Expenses Attending Various Meeting5 & 97 102 97 102 97 102 178 ioi 91 72 91 183 Conferences 2,839 Trustees. Expenses Attending Various Meetings & Conferences 3,180 30 Volunteer's Expenses Attending a Meetir 550 550 6,860 Awareness & Su A6 Flyers Acute Cholangitis Alert Cards BASL Conference- CharBe fijr PSC Support Stand Display Stands Graphic Design & Printir$8 of Leaflets Information Days Mailchimp Subscription for New51etters Patient Support App Development Legal Fees re Privacy Policy & T&Cs (Patient Support Appl Indudin 19 122 19 122 1,717 240 21 l(KJ 3,463 43 14.156 1,894 43 14,156 1,894 17,640 Page 2

Legal Fees re Privacy Policy & T&Cs Iwebsitel PLIII Up Banners Postage & Packaging Soho66 Phone Services ISupport} Website Domain Registration Renewal {Fasthostsl Website Hosting IFasthostsl Website Hosting & Support Iwhite Fuse Medial Zoom Pro Subscription Employee's Travel Expenses Attending Meetings Trustee's Travel Expen5e5 Attending Meetings 3,788 132 12 179 73 162 ioi 126 162 ioi 126 78 201 201 479 350 24,484 20,61Z 20,612 Fundraisln A6 Flyers A6 Postcards for a Wedding Collection Boxes Facebook Advertising Fundraisit)g Banner Fundraising Training by Institute of Fundraising Just Giving London Vitality Half Marathon 2020- 5 Places London Marathons 2021 Entrie5 (Virtual & In PeT50n) Employee's Expenses Attending the 2019 London Marathon to Support the Charity's Runners PayPal Fees Deducted from t)onation5 Received Postage & Packaging 19 19 13 143 55 S5 47 47 225 225 562 562 562 425 87 104 96 1,430 55 17 55 17 1.564 Governance Accounting Advice & Independent Examination of Accounts DBS Check on Employee Employee's Expenses Attending Meeting5 Wlth Trustees Trustees, Travel Expenses Attending Trustees, Meetings 67 155 209 1,031 Purchase & DistrElxrtSon of PSC Su T Shirts PayPal & eBay Fees Postage & Packaging Merdwndtse 92 36 92 36 216 172 128 736 Researth Drjesus Banales (Spain) Drs Goode & Rushbrook (Norfolk & Norwich) IPSC Diagnostic Blood Testl Dr Palak Trivedi (Bimiinghaml Ipsc 6c(II Legal Costs re Research Grants (Stone Kingl Legal Costs re New Research Contract (Wright Hassall) 40,550 18,CKM) 4,676 2,535 74,761 Page 3

Other nditu Personal Purchase Charged to Chartvs Credtt Card in Error (Fully Reimbursed) TOTAL PAYMENTS SURPLUS 59,931 8￿50 16,032 Transfers Betsveen Restricted & Unrestricted Funds OPENING BANK BALANCES AT 61412020 189.790 205022 CLOSING BANK BALANCES AT 51412021 Cijrrent Account (Natwestl Paypal Accounts Nationwide Deposit Account Scottish Widows Deposit Account Virgin Deposit Account 3,228 43 4,761 29 43 85,IXXI 76.450 85,(KK) 85,(lJ) 85,￿? 258.271 85,(KJO 15,000 85,1)00 189,790 8.550 249.721 8550 MERCHANDISE & OTHER ASSEfs HELD AT S 2021 Various offi￿ Equipment & Furniture, Mobile Phone, Various Fund Raising & Informational Resources, 42 T Shirts, 20 Running Shirts. 27 Running Vests, 99 Mugs. 50 Pin Badges, 415 Wristbands. 885 Alert Card5 & Other Minor Items. DEBTS LIABILITIES The charÈty has no outstanding debt5. It has made the following commttments- 11 It has guaranteed to pay a retsined totsl of £7.5CKJ to three researchers when their projects have been completed to the charity's satisfaction. 21 The charsty has undertaken to contribute £2,5CL) towards the cost of producing new UK DverTran5plant Guidelines. 31 The charity has conditionally undertaken to contribute £30.(m to a Oiagnosti¢ Blood Test Research Projert and £50,(￿￿) to the FARGO PSC Research Trial. GUARANTEES Keith V Anderson IPSC SuppOrtTreasu￿rj Martine C Walmsley IPSC Support Chair of Trustees) 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 Support On accounts for the year ended 5th April 2021 Charlty no (if any) 1175427 Set out on pages 1 to4 I report to the trustees on my examination of the accounts of Ihe above charity ('the Trust") for the year ended 5th April 2021. Rosponsibilities and As the charity trustees of the Trust, you are responsible for the preparation basis of report of the accounts in accordance with the requirements of the Charities Act 2011 ('the Act'}. I report in respect of my examination of th& Trust's accounts carried out under section 145 of the 2011 Act and in carying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5){b) of the Ad. I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect.. accounting records w8r8 not kept in accordance with section 130 of the Act or the accounts do nol accord with the accounting records Independent examiner's statement I have no concems and have come across no other matters in connection with the examination to which attention should be drawn in order to enable proper understanding of the accounts to be reached. Signed: Date: 0410112022 Namè: Stuart Bates Relevant profèsslonal qualificationls) or body (If any): BA FCA CTA Address: Victoria House, 10 Broad Street Abingdon OX14 3LH Section B Disclosure Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts.. directions and guidan￿ for examiners).