PTEN UK and Ireland Patient Group Charity Number:1172205 Trustees, Annual Report & Financial Statements Year ended 31 December 2023
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Ststements For year er+ded 31 De¢ember 2023 Charity Number 1172205 Co•)tentS Page Number Trustees, Annual Report Independent Examiner's Report on the Financial Statements Financièl Statements comprising.. Statement of Financial Activities Balance Sheet Notes 10-12
PTEN UK and Ireland Patient Group Trustee's Annual ReFX)rt & Financial Ststements For year ended 31 Dember 2023 Charity Number 1172205 Trustees. Annual Re The Trustees present their report with the financial ststements of the charity for the year ended 31" December 2023. The trustees have adopted the provtsions of Accounting and Reporting by Charities.. Statements of Recommended practi applicable to charth.es preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021. OBJECTIVES AND AcrivtnES Aims and charitable obJ¢rti¥es The purpose of our patient group is to improve the lives of patients, pantS and carers of all ages. in the United Kingdom and Ireland. who are affected by ra PTEN genetic alterations, PTEN Hamartoma Tumour Syndrome IPHTSI, Cowden Syndrome IC51, or Bannayan-Riley-Ruvalcaba Syndrorne IBRRSI through better patient support, increased awareness, more accurate and accessible information, earlier diagnosi5 and interyention, greater research into treatment and prevention, and improved coordinakn.on of care. Public Bènefit In plannin8 our activities, we keep in mind the Charity Commission gtjidance on Public Benefit. We do this by our acce55ible awareness resources to the general public and the design of our support activities to ensure that all beneficiaries are able to acce55 SUPPOrt no matter their age. location and economic circumstances to support our charitable objectives. ACHIEVEMENTS AND PERFORMANCE Our main fi)cu5 of support in 2023 was on the mentsl health of our community, as this had been an important theme that came out of our 2022 patient day. A National lottery 8rant was awarded to help fund our PTEN Counsellin8 SeiCe Ihttps=Ilptenuki.orglcounselling-service/l. We were è150 successful in being awarded a Global Genes grant to run 6 online group wellbeing 5e55ions. These sessions proved popular and concentrated on a PTEN patient's journey and the Impact Df living with a rare condition, SLtch as emotions after diagnosis and the impart of having muthple hospitsl appointments, tests and scans. The wellbeing clinics a150 focused on the mental strain for family members who betome carer5 to disabled children and how to tell your child about their rare condition_ Both the counselling seNice and the wellness elinics were brought to the PTEN community in collaboration with Rareminds Iwww.rarembnd5.or and have made a very positive impact on the wellbeing of our community. We held another PTEN patient family day in June 2023 in Oxford. Thi5 year we decided to make it more about face-to-facesupport. gethng PTEN families together. rather than have the day meditallyfocused. With this in mind we booked a children's entertainer and also put on a lovely BBQ. The patient day was a hu8e succe55 Wlth over 100 people attending the day. As a charity we also assisted medical research studies condurted by the PTEN Research Foundation and Éenetic counsellors. We are waib.ng for the results to be published. Thanks again, as per every year. goes to all our trustees. volunteers. members. medical professionals and fesearchers who continue to make the PTENUKI patient group and wider cornmunity such a success. By workin8 tO8ether, we are making a real difference and positive impact on people's lives.
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2023 Charity Number 1172205 FINANCIAL REVIEW Flnancial Poslilon Thi5 year we sawthe fruits of our latK>ur in terms of fundraising. We were successful in our application for a Nath"onal Lottery8iant I£IO.OTr)l and we also were granted £4,5(Kl by Global Genes. Our 6 runners in the London tsndmark half marathon in April also raised just over £6.( between them. In total. our donatr'ons plus the fundraising efforts has given us income of £31.411, which is more than triple the previous year. These funds enabled us as a charity to provide more support for our ¢ommunity, resulting in total expenditure of £24.739. Wè Benerated an overall Surplus of £6,672 for the year12022-1£758 Ideh'citl. This surplus is spllt £1,187 in our UnSErI(ted funds and £5,485 in our restrirted funds. The 8Trnts from The National Lottery and Global Genes were for spttific purwses and ha bEen a¢¢ounted lor within our restricted funds. Our total funds as at 31 December 2023 and at £18,03612022:E 11,3641 and is split £12.551 in unrestricted fund5 and £5.485 in restricted funds. The detailed flnancial statemen15 are included on pages 8 to 12. Reserves Poll¢y The tTU5tees are mindful of their responsibility towards the charity. the SOurceS they manage and how they have been accumulated. It is the trustees. policy to hold unrestricted general reserves amounfjn8 to £2.lt0 rellecr budgeted and unexpeaed calls upon resources within the coming year. The reserves target amount Is reviewed on an annual ba515. This tar8et was achieved as at 31 December 2023, with unrestricte(I, undesignated funds of £12,551. We prepare a carefully consldered bud8et and cash flow for th¢ year, which are based on historical performance and prudent estimates. We also produce a profit and loss forecast for each major support acivity and CafUllY monitor artual performance versus t0Cast. STRUaURE. GOVERNANCE AND MANAGEMENT Constltutlon and GovemSw Documert We are constituted as Charitable Incolrated OrBanisation ICIOI and our constitution governs our operation as a charity. We were registered a5 a CIO wlth the Charity Commission on 22 March 20217. Board of Trustees The Board of Trustees has independent control over, and legal sponSibl11fy for the charity's management and administration. The Board's decision making process is informed by chaiity law and its constitution. Our constitution requires a minimum of three trustees. Durlng 2023, Ihe trustees met four times. At the siart of the year, lan Stock, our charity founder. stepped down as charity chair after 6 years. We thank lan for his incredible contribution to our community by both founding the charity and leading us for so many years. We have not said goodbve to lan as he is continues to be part of the charity as è trustee. The Chalr role was during 2023 undertaken by Jack Donnelty and this passed to Peter Welch in July 2024. Appolntment term
PTEN UK and Ireland Patient Group Trustee'5 Annual Report & Financial Ststements For year ended 31 December 2023 Charity Number 1172205 In selecting individuals for appointment as trusiees. the trustees must have regard to the skills, knowledge and experience needed for the effertive admini5tratfon of the charity. In accordance with the constitut(on appointments a for an Initial term of threè years. A trustee who ha5 served for three consecutive terms may not be reappointed for a fourth consecutrye term but may be reappointed after an interval of at least one year. Trustse Indv¢rfon All trustees complete an induction programme designed to inform them aknut the charlVs Structure. objectives, finances and decision making framework and ensure that they are fully aware of the responsibilitie5 of bein8 a trustee. The induthon process takes the forni of a combination of meetlngs and the provision of appropriate reading material indudln8 our constitudon, annual report and account5 and guidance from the Charity Commissh)n. The Trustees and thelr areas of focus for the year and up to the date of approval of the Annual Report & FinancSal Statements were... lan Stock- Founder trustee Jack Donnelly lappolnted 19 January 2023. resigned 22 July 2024- Chalr durlng perlod of office) Peter Wel¢h l appoSnted 24 July 2024 as Chalr Designate) Ellie Collins- Markettng Ellie Welsh- Communicatlons (appointed 24 Juty 20241 Piyanka Tibarewal- Research Colette Knight- Care & Support Dr Katherine Lachlan- Me(lical Advlsor John Pemberton- Technology Kelly Kearley- Administratr'on & Fundraising Mike Collins- Financè (until 31 Dernber 2023} REFERENCE AND ADMINSTRATION DEfAILS Prlnclpal Addre55 11 Whinchat Close Hartley Whitney Hook RG18 Bankefs HSBC UK Independent Examiner Melanie Crooks Associates Limited Bellfi"eld House 33 Stafford Road Bloxwich W53 3NJ Declaratlon The trustees declare that they have approved the trustees. report above on 10 October 2024
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Ststements For year ended 31 December 2023 Charity Number 1172205 Signed on behalf of the charlS trustees bv.. Full name.. lan Stock Posidon.. Trustee Oate: 10 October 2024
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2023 Charity Number 1172205 Independent Examlners Report to the Trustees of PTEN UK and Ireland Patient Group- Charity number 1172205 l he ChariVI I report to the Charity trustees on my examination of the accounts for the Charity for the year ended 31 December 2023 which a set out on pages 8 to 12. Responsibilltles and basi5 of report As the trustee5 of the Charity. you are responsible for the prepaTrtion of the accounts in accordance with the requirement5 of the Charities Att 20111-thÈ 2011 Act"). I report in respert of my examinaiion of the Charivs accourrts carried out under sect?on 145 of the 2011 Art and in carrying my examination. I have followed the applicable DirtionS gin by the Charity Commission under section 14515llbl of the 2011Art. Independent examlnerfs ststement I have completed my examination. I ionfirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respert= Accounting records were not kept in accordan wtth section 130 of the 2011 Act.. or. The accounts do not accord with the accounting records. The accounts do not comply wrih the applicable requirements conMIng the fomi and content of accounts set out in the Charities l Accounts and Reportsl Regulations 2008 other than any requirement that the account% give a -true and fair" view. which 15 not a matter conSided as part of an independent examination. The trustee's annual port 15 not consistent with the accounts I have no concerns and have no other matters in connettion wrth the examination to which attention should be drawn in orderto enable a proper understanding of the accounts to be reached. fflji Melanie Crooks Melanle Crooks Associates Limited Bellfield House 33 Stsfford Road Bloxwich West Midlands WS3 3NI Date.. IG. 10.10%
PTEN UK and Ireland Patient Group Trusree'5 Annual Report & Financial Statements For year ended 31 December 2023 Charity Number 1172205 Statement of FIn(la1 Acthiities 2023 2023 Unrestricted Restricied Funds Funds 2023 Total Funds 2022 Total Funds Income and Endowments from: Dirett Donations Fundraisin8 Donations Grants receivable Sundry income Total Income 9.739 7.266 9.739 7,266 14376 30 I.IZ3 820 7.415 96 9,454 14,376 17,035 14,376 31AII ExwndStur• on . Rt7islng Fund5 Charitoble ActiVit$.- Care & Support Patient Day costs Conferences & Training Charity Mana8ement Insurance Bank & Just Giving Cost5 Subscriptions Independent Examinatlon Sundry expenditure Total Expendlture 2,517 2,517 1,164 10.215 10.215 4,537 4,537 662 4.643 199 5.333 213 282 192 5.333 213 282 192 4,CKJO 146 500 14.524 10,215 24.739 10,212 Net IncomellExpenditure) Transfers between funds Net movement Sn lunds Total funds brought forward Total funds carrled forward 2,511 11.3241 1.187 11.364 12,551 4,161 1.324 5.485 6,672 17581 6,672 17581 11.364 12,122 18.036 11.364
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2023 Charity Number 1172205 Balance Sheet 2023 2022 Note Debtots Cash at bank Creditors amounts f•lling due within one year Totsl Net A55ets 1.727 23,271 11,764 Represented by.. Unrestricted Funds 12.551 11.364 Restrirted Funds Total Funds li The notes I to 9 form part of these flnandal statements. The flnanclal statements were approved by the trustees on 10 October 2024 and slgned by.. J8a- 1¥thg lan Stock (Trustee) Kelly Kearley (Trusteel
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Ststements For year ended 31 December 2023 Charity Number 1172205 Notes to the Flnancial Statements l.Basls of Accourtin8 The ftnancial statement5 have been prepared in accordance with the Charities Art 20211, applicable arcountin8 standards IFRS1021 and Charities SORP and under historical cost accounting. The financial statements comprise of the Statement of Financial Activities. Balance Sheet and associated Notes. The Charitable Incorporate(1 Organisation meets the definition of a public benefit entity under FRSIO2. 2.Goln8 COtTn The financial statements have been prepared on a goin8 concern basi5 as the trustees believe that no material uncertainties exist. The trustees have considered the level of funds held and the expected level of Income and expenditure for 12 months from authorisin8 these flnancial statements. 3.Income Income Is Included in the Statement of Financlal Activlties when the charity is legally entitled to it, ultimate receipt is probable and the amount to be recognlsed can be quantified with reasonable accuracy. Voluntary Income In the form of donations and fundraisln8 Is recognlsed when the ¢ash is recelved or the financial year that the income is stated to relate to. Grants are reco8nised on a receivable ba54s when the charity has probable and measurable entitlement to the income li.e. The conditions for its award have been satisfied). Where the use of the income has been restrlcted In accordance wlth the donorlgrantee wishes the Income Is credlted to an approprfate fund until it can be spent for the purp05e5 for whlch it is given. 4.EMpendlture Liabilith"es are reco8nised as soon as there Is a legal or constructive obligation commith'ng tht tharity to pay our resources. S.Funds GeneralFund The general fund is the charity's unre5trirted, undesi8nated fund available for any the charSty's purposes without restriction. Oeslqnoted Funds Designated funds art unre5trirted in nature and created by the charity's Trustees for a specific purpose. Designated funds may be un designated at any time by the chartty's Trustees. Re$tri¢tedFunds Restricted funds ielate io income received **A)ich are $tricted bythe donor orgrantee for 5P8cific purposes wltnin the overall aims ot tt)e organ15ation. These lun(Js are use¢J in accordance the Specific purposes. 6.Debtors and Credltows io
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Ststements For year ended 31 Decembèr 2023 Charity Number 1172205 2023 2022 D8btors." Grants recefvable Credltors.. Accruals Deferred 8rani income 1,727 400 400 7.Movement In Funds EXpMdUre B•lonce •t 31.12.2023 1.1.2023 NatSonal Lottery-CounselNn8 5eryice Global Genes- Mental Health SUprn io.coj 4,376 14.376 14.5151 15,7001 110,2151 S,485 1.324 1,324 5.485 Unrn$trktedFU. General 11,364 17,035 114.5241 11,3241 12.SS1 Totsl Funth liJ64 31.411 24.7a91 18.036 Transfers b•tween lunds were •s follow5 UnrnStted R•strkted G•neral General fund io Global Genes fund 1.324 Thls represents the transfer of lunds io support the Mental Heahh Support programme. .Comparntive Statement ol Flnandal Actt¥ltles As the only fund in use durrng the year ended 31 December 2022. was the general unrestricted lund, a comparalive Statement of Financial Actlvftles In ad(lition to that within the 2023 Statement of Financial Artivities has not been reproduced in the notes to the financial statements. 9.Trustees and Related Party Transactlons Thé charity mointsined insurance for the trustees thfO418hout the finan¢l•l year ended 31 Oecember 2023 and suth indemnity insurance was in place at the date of approval of these financial statements. For the yeaf ended 31 December 2023. the premium cost for indemnity insurance was £ 36 and the cover was £250.000. li
PTEN UK and Ireland PaD"ent Group Trustee's Annual Report & Financial Ststement5 For year ended 31 December 2023 Chartty Number 1172205 During the year. no Trustees received renumeration for their role as TnAstee12022..£nill. Trustees were reimbursed for out of pockei expenses. totalling £1.7(Xl for 3 trustees. During the year. as allowèd undèr the constituti¢)n. a Trusteè l K Kèarleyl undertook the duties of thè charity manager under a contractuol agreement. The arnount chai8eable under thi5 conirartual aBreement was £4.66712022: £4,1. An amount of £666 was outstanding as the 31 DecÈmber 202312022'.£4CK)I. 12