PCaSO Prnstats Cancer Support Oryanl•atlon Chyset Hampshtre Sussex Trustees Annual Report Year ending 315t March 2023 Charity Name: PCaSO Prostate Cancer Support Organisation Charity Registration Number- 1170536 Postal Address: PO Box 66, Em5WOrth. Hants POIO 7ZP Website,. www.pcaso.or8 The charlty has no offices so the reglstered address wlth the Charlty Commisslon Is the Honorary Secretsrf5 home address. Hlstory PCaSO Is a charitable incorporated or8anisation gIstered wlth the Charity Commission and wlth the Informatlon Commission. A group was originally Set up in 1999 by the late Oavid Rowlands and others In Emsworth, Hampshire, under the auspices of another charity. It became a separate unincorporated assoclatlon In 2C02 and in 2016117 moved to the current form of govemance. Executlve Commlttee For the year ending 31 March 2023 All Trustees are members of the Executlve Commlttee. 8rlan Holden Chairman Kevin Simons Treasurer Davld Hurst Secretary Lance Allen Roger Bacon Allan Hl8gln Derek Pilling Barry Taylor Peter Weir At the Annual General Meeting held on 5 October 2023 all Trustees stood down. Davld Hurst resigned as a Trustee and Secretary on that day. All others named above were re*lected by the assembled membership. At the previous AGM on 24 July 2022 Roger Bacon had stood down as Chairman after ten years in post. At the first meeting of the Executive Committee after that, on I" November 2022, Brian Holden was elected as the new Chairnian. The Trustees thanked Roger Bacon for his leadership and hard work as Chairman and were pleased he was stsying on as a Trustee.
Purposes and Alms The objects of PCaSO as laid down in the Constitution are.. l. To promote and protect the physical and mentsl heath of sufferers of prostate cancer and their families and carers, those at risk of prostate cancer and those who have been bereaved through prostate cancer by the provlsion of support, education and practical advice. 2. To advance the educath)n of the general public in all areas relating to prostate cancer. The Oryanlsatlon of PCaS0. PCaSO does not own or rent any offices and has no employees. Everythin8 is handled by volunteers workln8 from home. Meetin8s are held onllne or In rooms usually nted for that purpose. PCaS0 is a membership or8anisation with, at 31st March 2023, 955 members, an Increase of 37 In total over the year, across the three branches descrlbed below intludin8 some from around the country who have either joined through contact via the intemet or have moved away from our branch areas after joining. There are also two living abroad. PCaSO works across four counties alon8 the south coast, East Sussex and West Sussex, Hampshire and Dorset. It Is organ15ed Into three Branches, name, Sussex, Hampshire and Dorset. and each Branch has its own committee and bank account. Each Branch has rented a commercial 5elf-stora8e unlt to store literature, publicity material and mi5cellaneou5 equipment. The Executive Committee had agreed at the meetlng on 29 October 2019 that it would not seek to expand Wond the current area. Under the Constltutlon PCaSO can have up to 12 Trustees and currently aims to have three from each Branch. For the year under consideratlon Hampshire had just one. The are currently five Trustees resident in Sussex, one In Hampshire and three In Dorset. PCaSO is also a member of the National Federatlon of Prostste Cancer Support Groups, whlch operates as Tackle Prostate Cancer or just as Tackle. This is made up of some 90 support groups from across the country. Dlffl¢uliles gettlng volurrteers Probably the most significant problem faclng PCèSO-which is cUntlY faced by most other charities and voluntary organisatlons- Is the difficulty in attracting enough people to carry out all the ideas and proposals generated. About a dozen years a80 PCaSO decided to split the management of the charity into branches under the Executive Committee as the dlstance between the furthest groups was some 120 miles and travel to meetings could be onerous. Currently there are three branches corresponding to the counties of Dorset, Hampshire and East and West Sussex together. In the year under report the three DOet Trustees made frequent cal15 for volunteers to step fornvard to run the charity at least at group or branch level and none have done so. Consequently they decided to reduce artivitie5 to occasional PSA testing events mainty run using the svstems of the Graham Fulford Charitable Trust. Hampshire are now running Wlth le55 than 10 active volunteers and are thef0 onty able to hold a few meetin85 or events.
Sussex have, with one exception. generdlly stopped having face-to-face meetings. The one exception is Eastbourne but they have cut the number of meetin8s held. Contsct has largely moved online using social media a5 exemplified by the new Central Sussex group. This was set up by new Chairman, Brian Holden, and has been taken over a5 group leader by Rob Stsnley. A WhatsApp group was started and has spread to include anyone who wants to tske part. There are cycle rides and walks to encourage the healthy living ethic. The Secretary, who has also held the position for ten years. Stepped down at the 2023 AGM and Lance Allen has agreed to take up the post. The editor of the Updates newsletter reslgned in autumn 2021 having done five years and no-one has volunteered to take that job on so publication in print is in abeyance although there is an online newsletter four times a year. PCaSO has sufficient funds to continue for some years but not enough people wllling to do the work. It is expected that there will be changes in the coming year. The focus of our work Wlth the return to nomial activities followlng the pandemic PCaSO has two maln areas of work and Is developin8 a third area. The main centre of work is to encourage the early diagnosis of prostate cancer. If the cancer Is dlagnosed before it causes symptoms then it is almost always curable. However, although pr05tate cancer is now diagnosed more often than any other cancer, the knowledge of prostate cancer in the population at large is very limited. Consequently men at rfsk often ignore or do not realise the slgnlficance of symptoms and the eventual dlagnosls Is often tem)inal. PCaSO devotes much resource to runnlng public events to offer any men between 45 and 80 years a free PSA test. These are discussed in more detail below. These events encourage men to talk about prostate cancer and in turn they encourage their friends to be tested, $0 spreading knowledge and bulldlng awareness. In addition PCaSO volunteers wlll take part in 'Wellbein8' events put on by other organisations to discuss health matter5. We publish a serles of leaflets on prostate cancer which are distributed free of char8e at such events. PCaSO encourages Its artive members to talk openty about prostate cancer and the Trustees together wlth other members will take phone calls from men- or their partners- who have concerns or maybe a concerned about friends or relations. The is a WhatsApp group open to anyone to join and ask questions. It is important for men to learn about the cancer and understand the tatrneftt$ offered and th55 knowledge often starts with a tentatlve enquiry. An area whlch PCaSO is moving into is living Wlth cancer. Many men diagnosed with prostate cancer may not be able to be cleared of cancer but will live with it for many years following various treatments. It ha5 been shown that diet and exercise can be important in reducing the effects of cancer so PCaSO has published a free book titled Healthy LNing which concentrates on the benefits of exercise and good diet. The first edition of 50Crf) copies has been reprinted with a further 41X(J copies, How our artlvltles dellver publlc benefft PCèSO has members but the membership is as much about spreadlng information and knowledge of prostate cancer to others and supporting treatments a5 tt is about getting any per59nal benefits. Many people who join are those who have been diagnosed earfy and cured and now want 'to put something back, as those who are seeking to improve their knowledge of the cancer they have. The Executive decided thi5 year to drop the requirement to pay £12 for Ilfe membership.
We follow a membership pattern mainly for the credibility it glves us when talking to clinicians and those in authority. To say we represent around 9C(I members who are almost all prostate patients will make them pay attention. Almost all our attlvtties are aimed at men and their partners who are in the age bracket likely to be diagnosed with prostate cancer i.e. men over 40. We njn public prostate canr screenin8 events (called PSA testing events) severdl times a year Isee bek)w for details). The PSA testin8 events are restricted to those in the age bracket likely to be at risk of prostate cancer but the public meetin8s a advertised as open to anyone who might be interested. In January 2020 we published an updated and expanded editlon of our comprehensive 76-pa8e booklet on prostste cancer written. as we say. by patients for patients and thi5 15 given away to anyone who want5 It free of charge. Doctors have complimented us on it and some hospitals take bulk copies to glve to patients. Tackle have adopted this booklet for dlstribution to all their 90 support groups. Early in 2023 we started updating this book and it will be published later in the year. We produced a free booklet titled Heahhy L]ving to support and encourage men Itvln8 Wlth cancer to follow recognised practices to improve their health and resilience. The flrst edition has had a second prlnt and an update wlll follow next year. In addltlon there are four other leaflets glven away free of charge aimed at particular areas of concern. The Sussex Branch has produced leaflets for local hospitals explaining brachytherapy and radlotherapy procedures. The hospitals produce the text and PCaSO organlse and pay for the design and printing of the leaflet in return for havin8 an odvertisement saying that the charlty is available to help patlents. PCaSO also provide radiotherapy units in three local hospltals wlth SLXiml blodegradable bottles for those patlents having treatment for prostate cancer. Each patient has to drink half a Iltre before treatment and the bottles replace single-use plastic cups. Who uses our ser¥lces The vast majority of those maklng contact wlth PCaSO live In our three branch areas. We do get contact from those who Ilve elsewhere in UK and, very occasionally. in other countries but those are generally through the internet following a search for a partlcular aspect of prostate cancer. We do not seek those contacts but wlll happily answer their queries and discuss thelr problems. However the target is to get men aged over 45 to learn about prostate Canr, to conslder thelr vulnerability to prostate cancer and decide to have a PSA test. A hi8h percentage of those tested, 92.5% is our average, will have a normal reading but those who have a raised readin8 will be referred to their GP for further action and that often means referring onwards to a hospltal for further checks and possible diagnosis. Men sometimes return to Ptsso for more information when they are offered a cholce of treatments by dortors or when the cancer hès spread from the prostate and they are faced with living with the cancer as the doctors follow treatments to control further spread. Men are notorious for ignoring symptoms and being too busy, important, embarrassed or ignorant to check symptoms by going to thelr dortor. Many of the initial contacts are by women who are concerned about their partners and often accompany their partner to the PSA test session to check they are taking the test. Many men do not know what a pr05tate does. where it is or even {17% according to one surveyl that they have one. So education is important, especially as rfsymptoms are evident the cancer has probably pro8ressed too far to be cured.
In the last decade research has discovered that it Is likely that if close relatives Ifather, brother, uncle) have had prostate cancer then it 15 twice as likely that you will get it. Men of Afro-caribbean descent are also in the frame. There is a shared gene between breast and prostate cancer, so those men wSth a family history of breast cancer can also be at risk of havin8 prostate cancer. PCaSO want5 to Bet thls Informatloll better known as it is m05t important that these men get checked early. The PSA test Organlslng and running PSA testing events 15 a large commitment by a relatively small 8roup of volunteers. Each Branch is responsible for organi5irsg events in their area and there is one man who takes the lead for that area. The prostate produce5 a protein, Prostate Speclflc Antlgen, whlch is secreted Into the blood and can be measured in a pathology laboratory. A small vlal of blood is taken from the arm by a phlebotomist and sent to the laboratory. The result comes back In a few days. Thls does not indicate cancer but can indlcate problem w5th the prostate. The test is not completely accurate and can give false posltives and false negatives but it is the only quick and easy test that yet exlsts. The NHS declines to spend the rnoney requlred to have a universal screenlng process when the test is not completely accurate so charities such as PCaSO have tried to flll the gap. PCaSO will organi5e an event, often worklng with a local Llons, Rotary or Masons group, where, on speclflc day, men can have a blood test and then see the result a week or two later. Those with a raised reading are recommended to speak to thelr GP to discuss the result. At no time does PCaSO diaBnose anythlng, merely reports the result and recommends further action. There Is no charge to the men thou8h contributlons to costs are suggested. We usually Ilmft the testlng to any men between the ages of 45 and 80 as these are men most Ilkely to be at rlsk. The Sussex and Hampshlre Branches of PCaSO organised S,809 PSA tests at 14 different locatlons wlthln the two counties durlng 2022, a record number of men tested during the year. We found red results needing further investlgation In 273 men and amber results in another 173 men who need a further follow up test. Slnce we started PSA testing In 2011, we have now arranged over 26,OCO PSA tests in Hampshlre, Su55ex and Dorset. Every man attending the event Is given a brlefing on the test and It5 pros and cons. We know that this has resulted In men talking about prostate cancer with families, friends and colleague5. At almost every test event men say that they came because someone they know had been before. In earlier years all bookings were made by telephone which was onerous on the person acceptlng the calls. All the administration was on paper with the consequent need to check and double check. Many other groups around the country now run their own events. The central point Is the Graham Fulford Charitable Trust IGFCTI which has a system Whe consultant urologists check the 5vIt5 and then the Trust despatches the emai15 and letters to the indlvlduals. This system was being overwhelmed with paper and has been computerised with an online booking system which automated the administration beforehand and on the day. Thls was then extended so that the pathology labs used by PCa50 could add the individual results to a Spreadsheet and then the results were electronically despatched to GFcf for checklng and despatch.
Regulatory Notlte PCaSO is a registered chartty and as such Is gUlated by the Charities Commission. We a additlonally mindful of the recommendation5 of the Fundraisin8 Regulator. PCaS0 is fortunate to have a trustee who has developed expertise in the Data Protection Regulations and he has accepted the voluntary position of Data Protertion Officer. Under his guidance the Trustees are confident that the charity complies with the requirements of the Regulations. The subject is permanently on the agenda of the Executive Committee. Flnanclal Report It is with some relief that the activity in the year 2022123 has returned to p(oVID levels. Receipts totalled £105,946 which is 276% up on the previous year and is mainly donations from PSA test events, both Individually from attendees and from the partners with whom we worked. Payment5 were 288% up to £103,517 with PSA testing showing expense5 of £66.349 and a donation of £14,353 to the Royal Bournemouth Hospltal for a biopsy chalr and £6.353 to Eastbourne District General Hospital for furniture for the urology unit. Cash balances increased by £2,429 to £147,836. The trustees conslder that our funds are more than sufficient to continue actNities for the foreseeable future. There is concern that PCaSO is holdin8 $0 much In resetve and the need to look for more places which need support. Reserves. At the meeting on 29 August 2023 the trustees vieWed and agreed the pollry that there would be a minlmum financlal reserve comprisin8 two years of operatin8 Costs (excluding PSA testlng event Costs) plus one year ot PSA event costs. Statoments No Trustee recelved any payment for 5ervlces beyond nomial expenses and no Trustee had any interest In any organisation CeIVIng any payments from PCaSO. The Trustees are not aware of any funds recefved from abroad nor of any payments made to an overseas body. The Trustee5 declare that they a not aware of any serious incidents or oiher matters that they should have ported to the Commission and have not done so. Approved by the ExecLrtive Committee at the meeting of 29 Au8USt 2023 and signed on thelr behalf David Hurst Honorary Settary
PCaSO Prostate Cancff w fxwtsatl¢)n Chwty number. 1170536 ,, Recelpts and Payments Attount for th• yw end 31st IAarch 2023 2022 Unrestrlcted Restricted Total fund5 funds fvnd5 Total funds Recelpts bers. sthscrlptfons Eat1(1. members D0natfcS. non.members C¥)natlons: corporate Donatlons at PSA testfng events fundralslng: pubilc meetln95 Fundralsln8.' collectlons Fundralsing: events Interest ) deposlt account Gift Afd Other 3.405 14.845 19.883 53,452 138 2,931 3,5 14,845 19,8B3 53.452 138 2.931 22 201 10.834 187 5,365 7,128 3.013 18.998 201 10.834 187 107 3,171 221 Paym•nts Governance Trustee & Publlc Llablllty Insurance Charftable actmty: newsletter Charltsble actfvlty: SLWrt to memb*5 Charltable actfvfty.. awareness Charitable actmty: PSA Testlng Charftable actvfty: dMètlon5 to charftles Fundrnlslng Advertlsl Other 2,442 2.442 1.861 534 175 1,055 427 15.182 15,816 579 579 7.985 579 7,985 68,448 21,460 21,460 187 1,249 103 517 187 1,249 517 764 15 Ass•t and InYe#ment purchases 162 162 Total payments 103 517 103 517 Mot recelptsllpaym•nts Transfers between funds Cash funds at beginnlnq of year Cash funds at end of year 2,429 2,410 145,407 147.836 142,997 145,407 147,836
Statement of wets IWAIttkn as at 31st ¥ch 2023 Lestrlct•d ftestrlcted T(rt•l funds ,C&sh funds Det acccwits Current accounts 76.421 76,421 71,415 147 836 147 836 Oth•r rnon•t•y 455•ts Ll&blHtles M(ntS o¥*Yd to 94pilef5 ApPrOd by the trustees and sId m thelr behalf by. Davld Hurst IhJrt•• Date:
Independent examiner's rnport to thé trustees of PCaSO Prostats Cancer Support Organlsation - charity number 1170536 I report to the trustees on my examination of the ar£ounts of PCaSO Prostate Cancer Support Org8nisation for the year erthts 31st March 2023. Responslbllitles and &16 of r•port As the charity trustses of tha Trust you are responsible for the preparats'on of the accounts in acYA)rdance with the requirements of the Charilies Act 2011 ('the Act.). I report in respect of my examination of the Trust's ac£wnts caffied under Section 145 of the 2011 Act and in cafryiw out my ex8m1nattt I have followed all the applicable Direc- tions gIn by the Charity Commission under se1( 145{5>(b) of the Ac Ind•pend•nt •xamlner's statement I have cornpleted my examination. I confirm that no materBI rnatters have come to my at- tention in connection with the examination giving me cause to bdieve that in any mat8rial respect: 1. accounting records were Mt kept in respect of the Trust as required by Section 130 of the Act: or 2. the accounts do not accord with thoge records. I have no cOnM8 and have txjme across no other matters in connection with the ex8mi- nation to which attentron should be drawn in this report in order to enable a proper under- standing of the arxounts to be reach&l. Signed: Name: Gerard Swe8ting AddSs.. Vvhiteleaf House. Cansiron L8n8. Ashurst XI. 3t Sussex, RH19 3SE Date. zr¢.,/ go21