PEcfus MAThERS Charity No 1208486 TRUSTEES, RF.PORT AND ACCOUNTS FOR THE PERIOD FROM FORMATION ON31 MAY 2024 TO 31 DECEMBER2024
PECTUS MAThERS A Charitable IDcoryorated Orgxnisatio OFFICERS AND ADMINISTIi4TIVE INFORMATION TRUSTEES Mr Simon Kendall Mrs Lynne Evans Ms Ellie Musgrave The Revd Barry Nichols Mrs Rachel Royan Chair Tre&surer until 13 January 2025 Tru[Cr since 13 January 2025 PRINCIPAL OFFICE clo Society for Cardiothoracic Surgery Royal College of Surgeons of EnglaThl 3843 Lincolns Inn Fields London WD2A 3PE CHAIUTY NUMBER 1208486 COMPANY NUMBER CEO 36343 BANKERS CAF Bank Ltd 23 Kings Hill Avenue Kings Hill West Malling Kent ME19 4JQ Natwest Bank plc 250 Bishopsgate London EC2M 4AA
PEcfus mAERs A Charitable Incoryorxted Organition TRUSTEES, REPORT For the peRiod ended 31 December 2024 The Trustees of Ptu$ Matters present their report and accounts for the period from incorp)ration on 31 May 2024 to 31 December 2024 Objectives, a¢tivities and the publi¢ beDefit Objetlives and the public benefil The obje¢t% of Pectus Matters are for the public benefit io relieve the needs of people suffering from and affected by Pectus malforniations or defonnities, their families and carers in particular but not exclusively by: providing or assisting in providing information and sources of advice about Pectus malfoTllMtions and deforniities: advancing education and knowledge about PluS malforniations and deforniities with the aim of raising awatcness of them and improving stsndards of care for those supporting research into the causes, prevention and treatment of Pectus malfoTmations and defomiities and di&seminw the results of such Tesearcl4 and providing financial assistance to support travelling eXnSeS and accommodation costs incurred by patients receiving tr¢aiment for Pect8 MaIforntiOnS or deforniities. Significant ac¢ivilies Since fOrnlIon on 31 May 2024 the TneeS have focussed on: establishing a website to provide inforn)ation about Pectus malforn)ations and disabilities. as a source of fimd-taising for thc charity and inforniation aboul the charity's activiti establishing policies and procedures; securing on.going $UpF and f¢ training from GDPIL Safeguarding and SEND specialists" preFbAring fund-raisittg activities. giving presentations about the effect of Pectus at National Health Service seminars" working with cardiothoracic Surgeons to improve knowledge of and acces5 to treat[D for Pectus nMlfoTmations and disabilities within the NHS. giving advice to enquirers about ways to access treatment for Pectus MaIforntiOnS and defonnities.
AchieVenMI andperforpn4nce During this lod the CIO h&s njade significant pgreSs." We have become properly established as a charity: recruiting a suitable range of tn]stees, including ensuring that all tnleeS have been cleared by the Disclosur¢ and Barring Servlce with Enlwi¢ed DBS Chec and establishing procedures whi¢h comply with GDPR. The Crity has develoFth a website wtiich has widez knowledge about the activities of the charity. This w&s achieved at a cost of only £444 during the period as a result of expert help on a free basis from a graduate student at Buckingham University. The Charity has given advice to 55 enquirers aLK)Ut ways to access treatment for P¢ctus malfomMtions and defomiities. The Charity h&s been intimately involved in consulting NHS England Specialiscd Commissioning in expanding from one adult Pectus centre in England (St Bartholomew's, London) to a further &Juli ccntre in South Tees, Middlesbrough and a children and young people's cenire in Alder Iley, Liverpool. . Due to the efforts of the Clwity. patscnts with severe pectus excavatum are discussed at the weekly nalional Peclus MDT and have access lo surgery. Prior to the Charily's iThpui there was no surgery available to Pectus patients in NHS England. The Charity has r¢¢eived insightful f¢cdback from paiientslcar¢rs a)ut their experiences of treatment and in turn given constructive feedback io the relevant hospitals/clini¢al teanclinlcla$. The Cl)arity now online questionnaire/survey for patients to share their experience of care. The ChaTity kn been closely involved in the initiation and administration of the first randomiscd trial of Pectus surgery in th¢ world. known &s thc RESTORE trAal. 'I'his ts for patients who have severe Pectus Excavatum. Recruitment has exceeded expectations and may well havc a major infiuence on choiL£8 of tTeatment. The Charity has encourdged the sharing of good practice - the best example of this is learning aut the national Pectus service in Scotland (based in Glasgow) and omoting thi's model of Ca a5 a wjtentid for the 8ervir£ in England. The Charity has been asked to collaborate with the James Lind Alliance as part of their Thoracic surgery priority ttiDg prttthp. The Charity has actively learnt about the lack of access to Pectus treatment in Wales and North¢rn Ireland. The Charity is actively involved in monthly meetings with the Society for Cardiothoracic Surgery Great Britain and Ireland. This involves clinical representation from severn] clinical units including ScotlaThl The Charity has given a webinar on Pectus and PecttL8 ¢ate to th¢ Marfan's Tnt.
The Charity is intimately involved in shaping future Pectus care in England - by sharing the experience in Scotland the aim is to on a hub and spoke model in England where patients can be seen as soon &$ possible in the development of th¢ir chest deformity- in the hope that non-invasive u)[vatiVe treatments, such as extemal bracing or vacuum bell therapy. may prevent progression and potentially conEct th¢ of the chest. This would avoid major surgery. would hopefiY prevent the psychological sequelae to these young people at a critical time of their lives" and prevent the physiological impaiTments in the severe ¢ase& FUrthen0. this model of conservatiye trcatmcnt is morc cost ¢ffcctiv¢. The Charity presented at the NHSE Pectus Event at Vintnels HaIl January 2025. The patient PTesentations receiv the highc5t scores for delivery 8t impact to an audience of national and international leadets in Pectus Care. Since the year end the Charity has been registered with the Fundraising Regulator. FiDaneial review The Ststement of Financial Activities for the period and the balance sheet of the Trust ate set out on pages 7 to 10 During the period the Charily received income totalling £3,926, including a donation of £990 to cover legal advice relating to the establishment of the CIO. Formation and admin7stration enSeS were £1.531. leaving funds CWT1 forward into 2025 amounting to £2.291. Plans for future periods In 2025 the Charity aims to: Incre our income through Increasi the Dumber of Friends of Pectus Matters requesting a minimum subscription of £5 per month and also by encouraging fillthisiftg evenL8 and activities. Continue the development of the website to facilitate donations, membership and gift aid. Develop a beneficiary grants strdtegy for accommodation and travel. to enable grant applications to be considered once fiumls become available. Visit each Pectus clinic in the United Kingdom to promote the charity, including by donating a cbarity knmer. Support NHSE to define a Pectus Care Pathway. SuPrt NHSE to deliver a national referral Pr( with a single p)int of acees& Supwrt NHSE to deliver a hub and spoke model of care promoting conservative Continue to support the RESTORE trial to completion. Recruit and ¢nthuse a n¢twork of volunteers.
Recruit COnKTriate members / spx)nsors avoiding conflicts of inlerest. FurtheT imptove sUPPOrt frir patients and knÈlies to navigate th¢ir cate pathway - with a view to establishing a Monday to Friday help line in 2026. Continue to SUp)rt our online questionnaiTr for lents, experience of their care - and feedback to Pcctus units. Structure* governance and management GoverniDg doeument The CIO was tegistered by the Charity Commission for England and Wales on 31 May 2024 under charity numkr 1208486 and company numkr CE036343. Recruitment and appointmenl of trustees The founding tr• who are listed below. gathcred under the ItlershiP of Mr Simon Kendall, a retired Cardiothoracic surgeon. because they either had Peclus malfonnations and deforniities (Pectus} themselves or they had family m¢mbers with these conditions and they had a commilment to seek to improve thc infoTmation available to people with P¢¢tus about how lo access appropriate treatmcnt. Now that the CIO has been fomied. new truslees are recruited through a fomMI vertisement and interview W(e$S- Swh new tru are being Tecrnited to ensure that the Charity has an appropriate rang¢ of skills to manage the development of the Chlty. Induction 2nd training of trustecg The policics and prottdurcs of the CIO and the respombilities of tsi]stees are explained to new trustees by the chainnan. The CIO is controlled by the trustees who meet online ai least once a month when they consider all the day to day affai of the CIO. Related parties and wider networks The CIO is gradually &8tsbli5hing connecti0Th8 with other charities working with similar disabilities. Risk m2Dagement The major risks to which the CIO is exFK>s¢d have been reviewed and procedures have bcen established to mitigate those risks. Trustees. statement of responsibility in relAtion to the aceounts Under cl)artty law, the TnLStees are resw>nsible for pEYparing the TTr, Annu Report and the financial ststements for each financial year which show a true and fair view of the stat¢ of affairs of the charity and of the excess of income over expenditure for that wiod.
In preparing these financial Statemen generally accepted accounting practice entaRIs Select suitable accounting policies and apply them consistently. State whether th¢ recommendations of the Stalement of Recommended Practice have been followed, subject to any malerial departures disclosed and explained Prepare tbe financial statements on the going concern basis unless it is inappwe to presume that the charity will cA)ntinue its actlvities. The Trustees are required to act in accordance with the tnLSt deed of the charity, within the framework of trust law. They are responsible for keeping proper accounting record4 sufficient to disclose, at any time, with reasonable a¢¢uracy the financial position of the charity al that time, and to enable the Truste¢s to ensure thal, where any statements of account are prepared by them under section 132(1) of the Charities Acl 2011. t1 statemrnts of )Unt comply with the requir¢ments of regulations under thai provision. They have gencraI restM)nsibility for laking such steps &$ are reasonably open to them to safeguard the assets of the charity and to prevent and detecl Reference And administrydtion details The thinistsative infOrn10Th sel out on ge I fonns of this repL The trustees of the CIO at the date of this report are listed on page l. Those who served during the peTiod since 31 May 2024 were: Mr Simon Kendall Chair Mrs Becky Blount UK UK Appointed 31 May 2024 Appointed 31 May 2024- resigned 6 May 2025 Apwiinied 31 May 2024- signed 16 January 2025 Amioted 31 May 24 ApFM)ini¢d 31 May 2024 Appointed 31 May 2024 App)itrted 13 Jffttujry 2025 Mrs Lisa de-Laune UK Mrs Evans Ms Ellie Musgrave The R¢vd Bary Nichols Mrs Rxhel Royan Treasurer UK Trustees The Trustees would lik¢ to thank Mrs Lisa de-La and Mrs Becky Bloun¢ wlKty have resigned since ihe year end. for their significant and enthusiastic contributions to the forniation and establishment of the charity. We wish them well for the futu. Simon Kendall Chair 14 Juty 21125
PECTUS MArrERS STATEMENf OF FINANCIAL AcrivrriES For th¢ period rom 31 May 2024 to 31 December 2024 Unrestricted funds 2024 Incoming resources Fundraising Donations Friends subscriplions Gift aid on donations and SUbriptionS Interest Total income 2,575 1,125 120 62 3,926 Erpendilmre Admini%lralion Legal advice te forniation Website costs Insurance and DBS costs 97 1531 Fundraisinz cosls Total expenditure 1635 Net ineome for the period 2,291 Fund balance carried forward at the eod of tbe period. 2291
PECTUS mAERs BALANCE SHEET at 31 Deeember 2024 2024 Currcnt assets C&sh at bank Gift Aid rewverable Other debtors Prepaid expenses 1.922 159 304 2.429 Liabilities Creditors falling due within one year 138 Net current assets 2,291 Net assets 2291 Funds Unrestricted income funds 2,291 Tolal funds 2291 Simon Kendall Chair of Trust¢¢s 14 July 2025
PECTUS MAThERS Notes to the aeeounts 31 Deember 2024 Constitution Pe¢lus Matters is a CEitable Incorporated Organisation (CIO) registered with the Charity Commission for England and Wales on 31 May 2024 as charity number 1208486 and company number CE036343 Aeeounting policies The principal accounting policies adopte judgements and key Sources of estimation of uncertainty in the preparation of the a¢¢ounts are &$ follows: Basis of finaD¢ial statements The accounts have been prepared in accordance with the Ststement of Recommendcd Practice.. Accounting and Reporting by Charities preparing accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) and the Charities SORP 2015 (8ORP 2015) as amended by Updthl Bulletin I The CIO is a public benefit entity &8 defined by FRS 102 . I'he accounts have been prepared under the historical cost convention and include all transaction4 assets and liabilities for whj'ch the CIO is responsible in law. The trustees consider that there are no material uncertatinties aL¥)ul the ability to continue as a ioing concern. Prepantion of the x¢eouDts on 2 going cont¢rn b*si8 I'he CIO'S expenditure is carefully controlled by the tnteeS who only incur expenses out of available income. Durtng the period from foTmation on 31 May 2024 to 31 December 2024 the CIO had an excess of income over expenditure of £2,291. The truslces are not aware of any circumstances that migbt affect the going concern status of the CIO in the foreseeable future. For this reaso the trustees are of the opinion that the CIO can be considered a going concern for the frireseeable futUTC, this being a period of at It twelve months from the date of approval of the balance sheeL Funds Unreslrictedfvndv are funds set aside by the trustees that are not subject to any rcstrictions. De.Fignaledfvnds a general funds set &%ide for a particular puryK)se by the trustees. They are aIso unrestricted.
PECTUS MATTERS Notes to the accounts 31 December 2024 Aeeollnting polKio8 (L¥)nt'd) Funds (cont'd) Re,strictedfvnds represent donations or grants received for a specific object or invited by the trustees for a specific objecL The fuThts may only be ex¥ed on the specific object for which they were given. Any balance remainin8 unspent at the end of the year must be carried forward &$ a balance on that furMI. Income All income is recognised once the CIO has entitlement to the incorne. it is probable that the income will received and the amount of the income can be measured reliably. Donations are recognised when the CIO has been nottfied in writing of both the amount and s¢ttlement date. Legacies are recognised on a case by c&se basis following the granting of probaie when the administrator/exe¢utor for the estatc h&8 communicaled in writing both amount and the settlement date. Inlerest on funds held on depx8it and income from investments is includcd when Teceivable and ihe amount can be measured reliably by the CIO. this is nonnally upon notification of the interest or investment inL"ome paid or payabk by the bank or investment institution. Expenditure Liabilities arc recognised As expenditure as soon as there is a legal or consructive obligation committing the CIO to that expenditure. it is probable that settlement will be required and the amount of the obligation can be measured reliably. F.xndIttsre on LhariLqble activities comprises dircct expenses incurred on the defined charitable purposes of the CIO and includes staff ¢osts attributable to the activity. Grants payable are accounted for once there is a legal or constructive obligation to make a payment to a third party. it is probable that settlement will be required and the amount of the obligation Can be measured reliably. Governance costs comprise expendilure on compliance with and advice on constitutional and statutory matters. Irrecoverable VAT is included in the items of exltUre to which it relates. Taiation The CIO, as a re8iSter¢d charity, is exempt from t&xation on its income and gains falling within SeL'tion 505 of the Taxes Act 1988 or Section 256 of the Taxation of Chargcable Gains Act 1992 to the extent that they at¢ applied to its charitable objectives. No lax charge h&s arisen in the period. 10