PCaSO Prostate Cancer Support Organ18atlon Dorset H8mp8hire Sussex Trustees Annual Report Year endlng 31" March 2022 Charity Name: PCaSO Prostate Cancer Support Or8anisation Charlty Reglstration Number: 1170536 Postal Address.. PO Box 10, Emsworth, Hants POIO 7ZP Website: www.p¢oso.or8 The charity has no offices 50 the reglstered address wlth the Charity Commlsslon is the Honorary Secretarfs home addres5. Hlstory PCaSO is a charltable incorporated or8anisation registered wlth the Charlty Commlsslon and with the Information Commisslon. A group was originally set up In 1999 by the late David Rowlands and others in Emsworth, Hampshire, under the ausplces of another charlty. It became a separate unincorporated association In 2002 and In 2016117 moved to the new form of 8overnance. Executlve Commlttee For the year ending 3111 March 2022 All Trustee5 are members of the Executlve Commlttee. Roger Bacon Chairman Kevin Simons Treasurer David Hurst Secretary Lance Allen Allan Hi8gin Brian Holden Ifrom Ilth January 20221 Derek Pilling Barry Taylor Peter Weir At the Annual General Meeting held on 24, July 2022 all Trustees stood down and all We re-elected bv the assembled membership.
Purposes and Aims The objects of PCaSO as laid down in the Constitution are: l. To promote and protect the physical and mental health of sufferers of prostate cancer and their families and carers, those at rlsk of prostate cancer and those who have been bereaved through prostate cancer by the provision of support. education and practical advice. 2. To advance the education of the general public in all areas relating to prostate cancer. The Organisation of PCaSO. PCaSO does not own or rent any offlces and has no employees. Everythin8 is handled by volunteers working from home. Meetin8s are held In rooms usually rented for that purpose. PCaSO 15 a membership organ15atSon with, currently, 918 members across the three branches described below including some from around the country who have elther joined through contact via the internet or have moved away from our branch areas after loinln8. There are also two now living abroad. PCaSO works across four Countles alon8 the south coast, East Sussex and West Sussex, Hampshlre and Dorset. It is or8anised into three Branches, namely, Sussex, Hampshlre and Dorset, and each Branch has its own committee and each has its own bank account. The Éxecutlve Committee had agreed at the meetlng on 29, October 2019 that ft would not seek to expand beyond the current area. Each Branch has rented a commerclal self-storage unlt to store Ilterature, publlclty material and mlscellaneous equipment. Under the Constltution PCaSO can have up to 12 Trustees and currently aim5 to have three from each Branch. For the year under consideration Hampshlre had Just one and in July 2021 Lance Allen and Kevln Slmons took up thelr posltions as Trustees and this was ratified at the AGM In August. On 12, October 2021 Kevin Simons was formally elected as Treasurer. On 11 January 2022 Brlan Holden was eletted as a Trustee and we ended the year under report with nine TrL¢Stee5. PCaSO 15 a150 a member of the National Federation of Prostate Cancer Support Groups, whlch operates as Tackle Prostate Cancer or just as Tackle. This is made up of some 90 support 8roups from acr055 the country. Dlfflcultles gettln8 volunteers About a dozen years ago PCaSO decided to split the management of the charity into branches under the Executive Commlttee as the distance 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 tO8ether. In the year under report the three Dorset Trustees made frequent calls for volunteers to step forward to run the charity at least at group or branch level and none have done $0. Consequently they decided to make the branch dormant and hold no more meetings or events. Hampshire are now running with less than 10 active volunteers and are therefore onty able to hold a few meetings or events. Sussex have had the group leaders of Chichester and Bexhill die this year and no-one has stepped forward to take on those groups so they have shut down. Pulborough has not restarted after COVID because the
group leader has other pressures and the ladies who run Eastbourne group are actively looking for replacements as they want to step back in autumn 2022. After the AGM in July 2022, the Chairman will step down after ten years in the post, but will remain Trustee and it is expected that Brian Holden will take over. In addition the Secretary, who has also held the FJOSition for ten years, has announced he will step down in 2023. The editor of the Updates newsletter resigned after the autumn 2021 Issue having done five years and no- one has volunteered to take that job on 50 publication Is In abeyance. PCaSO has sufficient funds to continue for some years but not enou8h people willing to do the work. It Is expected that there will be changes in the comlng year. Th¥ effects of the COVID pandemlc PCaSO's main work involves face-to-face meetings of groups of members and public who want to know more about prostate cancer and its effects and a serles of events where we offer free PSA blood tests to men who have booked appointments. In addition there are usually regular face-to-face commlttee meetings. In line wlth the government re8ulations it was not practlcal to hold these events at tlmes durlng the year so some planned meetln8 and test events were cancelled. We continued the committee meetings onllne by uslng Zoom and after a few months decided to start holdin8 meetings for members also using Zoom. These were usually talks by clinician5 and others and advertised by Invltatlons to members by emall. There were requests for literature by hospitals and Indlvlduals which were handled by post and occaslonal phone calls to offlcers from men needin8 information. The si8nificant change was the greater acceptance of Zoom for communlcatlons and most commlttee meetlngs were now held onllne. The Executive Committee had declded to have one meetln8 8 year face- to-face In order to keep the personal contact. PSA testing events restarted in Hampshlre and Sussex In October and November 2021, Inltially wlth small events but demand meant that larger events qulckly happened. Face-to-face group meetings were held but wlth greatly reduced attendance. The focus of our work In normal years - and when the COVID regulatlons are relaxed again - PCaSO has two maln areas of work and is developing a third area. The main centre of work Is to encourage the early diagnosls of prostate cancer. If the cancer Is diagnosed before it causes symptoms then it is almost always curable. However. although prostate 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 risk often ignore or do not reallse the slgnlflcance of Symptoms and the eventual diagnosis is often terminal. PCaSO devotes much resource to runnlng public events to offer any men between 45 and 80 years a free PSA test. These are dlscussed in more detail below. These event5 encourage men to talk about prostate cancer and in turn they encourage their friends to be tested, $0 spreading knowledge and building awareness. In addition PCaSO volunteers will take part in 'Wellbeing' events put on by other organisations to discuss health matters. We publish a serles of leaflets on prostate cancer which are distributed free of charge at such events. PCaSO runs open public meetlngs to give a place where men and their partners can come and talk about their diagnosis or treatment and perhaps hear from expert speakers about aspect5 of treatments. The frequency and make-up of the meetlngs depends on many factors. Some are monthly while others are
quarterIy. Some are discussions between individua15 while others conntrate more on the speaker and his or her subject. PCaSO encourages its active members to talk openly about prostate cancer and the Trustees tO8ether with other members will take phone calls from men- or their partners- who have concerns or maybe are concerned about friends or relations. It is important for men to learn about the cancer and understand the treatments offered and this knowledge often starts with a tentative enquiry. An area which PCaSO is moving Into Is living with cancer. Many men diagnosed wSth prostate cancer may not be able to be cleared of cancer but will live with it for many years following various treatments. It has been shown that diet and exercise can be important in reducing the efferts of cancer so PCaSO has provided extensive infomiatlon within recent editions of Update5 magazine and talked to the Penny Brohn organisation. who run courses for those suffering with cancer, to explore the possibilities and costs of them running a series of courses free to PCaSO members when regulatlons allow. How our a¢tlvltles dellver publlc benefft PCaSO has members but the membership is as much about 5preadin8 informatlon and knowled8e of prostate cancer to others and supporting treatment5 05 It is about gettin8 any personal benefits. Many people who join are those who have been diagnosed early and cured and now want 'to put somethlng back, as those who are seeking to improve their knowledge of the cancer they have. However the price of membershlp- £12 to be a Ilfe member- Is not considered likely to put people off joining. We follow a membershlp pattern malnly for the credibi1Sty It 8lve5 us when talklng to cllnlclans and those in authority. To Say we represent around 900 members who are almost all proslate patients will make them pay attentlon. Almost all our artlvltles are aimed at men and their partners who are in the a8e bracket likely to be diagnosed with prostate cancer i.e. men over 40. We run publlc prostate cancer screenlng events (called PSA testlng event51 several times a year15ee below for detallsl. The PSA testing events are restrlcted to those in the a8e bracket Ilkely to be at risk of prostate cancer but the public meetln8s are advert15ed as open to anyone who might be interested, In January 2020 we published an updated and expanded editlon of our comprehenslve 76.page booklet on prostate cancer written, as we say, by patients for patlents and thi5 is given away to anyone who wants It free of charge. Doctors have Complimented us on It and some hospltals take bulk copies to give to patients. Tackle have adopted this booklet for distributlon to all their 90 sUPPOrt groups. Since we have not had group meetln8s nor test events we have a large stock of these booklets so may hold off updating it for another year. In the year under report work started on a publicatlon called Healthy Livin8 which draws together information on the benefits of a 8ood dlet and exercise. This Is expected to be published next year. In addition there are four other leaflets glven away free of charge aimed at particular areas of concern. The Su55ex Branch has produced leaflets for local hospitals explaining brachytherapy and radiothefapy procedures. The hospitals produce the text and PCaSO organise and pay for the design and printing of the leaflet in return for having an advertisement saying that the charlty Is available to help patients. PCaSO also provide radiotherapy units in three local hospitals with 500ml biodegradable bottles for those patient5 having treatment for prostate cancer. Each patient has to drink half o litre before treatment and the bottles replace single-use plastic tups.
Who uses our services The vast majority of those makin8 contact with 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 general through the Internet following a search for a particular aspett of prostate cancer. We do not seek those contacts but will happily answer their queries and discuss their problems. Many of the initial contacts are by women who are toncerned about their partners and we have produced a leaflet written by some of our female members aimed partlcularly at those contacts. However the tar8et Is to get men aged over 45 to learn about prostate cancer, to Consider their vulnerability to prostate cancer and decide to have a PSA test. A high percentage of those tested, 92.5% is our average, will have a nom)al reading but those who have a raised reading wlll be referred to thelr GP for further action and that often means referring onwards to a hospital for further checks and possible diagnosis. Men sometimes return to PCaSO for more information when they are offered a cholce of treatments by doctors or when the cancer has spread Irom the prostate and they are faced with Ilvlng wlth the cancer as the doctors follow treatments to control further spread. Men are notorlous for Ignoring symptoms and being too busy, Important, embarrassed or Ignorant to check symptoms by golng to their doctor. Many men do not know what a pr05tate does, where it is or even117% a¢¢ordin8 to one seY) that they have one. So education is Important, especlally as If symptoms are evldent the cancer has probably pro8ressed too far to be cured. In the last decade research ha5 dlscovered that it is1Skely that if close relatives (father, brother, uncle) have had prostate cancer then It Is twlce as likely that you will get it. Men of Afro-caribbeon descent are also In the frame. There Is a shared gene between breast and prostate cancer, so those men with a famlly history of breast cancer can also be at risk of havlng prostate cancer. PCaSO wants to get thi5 informatlon better known as it Is most Important that these men get thecked early. The PSA tsst Organising and running PSA testing events Is a large commitment by a relatively small group of volunteers. Each 8ranch is responslble for organlsln8 events In thelr area and there is one man who takes the lead for that area. The prostate produces a protein, Prostate Specific Antlgen. whlch Is secreted Into the blood and can be measured In a pathology laboratory. A small vial of blood Ss 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 indicate a problem with the prostate. The test is not completely accurate and can give false positives ané false ne8atives but it IS the only quick and easy test that yet exists. The NHS declines to spend the money required to have a unlversal $CenIng proce55 when the test Is not completely accurate so charities such as PCaSO have tried to fill the Bap. PCaSO will organise an event, often worklng with a local Lions, Rotary or Masons group, where, on specific day, men can have a blood test and then be sent the result a week or two later. Those with a raised reading are recommended to speak to their GP to discuss the result. At no time does PCaSO diagnose anything, merely reports the result and recommends further action. There is no charge to the men though contributions to costs are suggested. We usually limit the testlng to any men between the ages of 45 and 80 as these are men most likely to be at risk.
In calendar year 2021122, across Sussex, Hampshire and Dorset, PCaSO held just six free PSA testing events Ipre-COVID thls would be around 20 events) and tested 1,744 men. We found exactly I¢X) men with a raised P5A level, about 5.7% of those tested. Those men with a raised PSA were recommended to See their GP to discuss their result. Slnce we started testlng In 2011 we have tested 21,030 men In our area. Every man attending the event is given a briefing on the test and its pros and cons. We know that this ha5 resulted in men talking al)out prostate cancer with families, friends and colleagues. At almost every test event men say that they came because someone they know had been before. Before the current year all bookin85 were made by telephone which was onerous on the person accepting the calls. All the admlnlstratlon was on paper wSth the consequent need to check and double check. Many other groups around the country now run thelr own events. The central point is the Graham Fulford Charitable Trust IGFCTI which has a system where consultant urologlsts check the results and then the Trust despatches the emails and letters to the individuals. This System was being overwhelmed with paper and has been computerised. PCaSO, through the IT consultant member5. devised an online booking system whlch automated the adminlstratlon beforehand and on the day. Th5s was then extended so that the pathology labs used by PCaSO could add the individual results to a spreadsheet and then the results were electronically despatched to GFCT for checking and despatch. Regulatory Notlce PCaSO1s a registered charlty and as such Is regulated by the Charlties Commisslon. We are addltlonally mlndful of the recommendations of the Fundraislng Regulator. PCaSO Is fortunate to have a trustee who has developed expertise In the Data Protectlon Regulations and he has accepted the voluntary position of Data Protection Officer. Under hls guldance the Trustees are confldent that the charity complles wlth the requlrements of the Re8ulation5. The subject is permanently on the agenda of the Executive Commlttee. Flnanclal Report The prevlous year, 2020121, had shown a 77% drop In turnover because government precautions for the pandemic meant PCaS0 had, more or less, to cease activity. Thls year, 2021122, shows a climb back as actlvlty restarted gently in autumn 2021. Receipts totalled £38,401, almost entirely through donations and the resulting Gift Aid, which was 68% up on the previous year though still well under half the figure for the last pre-COVID year. Payments totalled £35.991. Governance at £2,395 was mainly annual fees for servlces such as Insurance, stora8e, the PO Box, etc. The cost of PSA testing events came to £15,182 and there were donatSons out totallSng £15,816. Cash balances increased over the year by £2,411 from £142,996 to £145,407. The trustees conslder that our funds are more than adequate to continue our activities during this difficult time. Reserves. At the meeting of the Executlve Commlttee on 27th July 2021 the Trustees agreed a policy on reserves that there would be a minimum reserve comprising two years of operating costs lexcluding PSA eventsl plus one year of PSA testing event costs. The policy and the figures would be reviewed annually.
Statements No Trustee received any payment for servlces beyond normal expenses and Trustee had any interest in any or8anlsation receivirbg any payments from PCaSO. The Trustees are not aware of any funds received from abroad nor of any payments made to an overseas body. The Trustee5 decla that they are not aware of any serious incidents or other matters that they should have reported to the Commission and have not done so. Approved by the Executfve Commlttee and si8ned on their beha David Hurst Honorary Secretary
Independent •xamlner'8 report to the tru8t••s of PCaSO Prostats Cancer Support Organi8ation - charity number 1170536 I report to trustees on my examination of the accounts of PCaSO Prostate Cancer Support Organisation for the year ended 31st March 2022. Rospon8lbiliOo9 and ba81s of report As the chanty trustees of the Trusl you are responsible for the preparation of the accounts in aC£Ordan with the requirements of chare9 Act 2011 (Ihe Acr). I report in respect of my examination of the Trusfs accounts Ca1 out under section 145 of the 2011 Act and in carying out my examinats'on I have follow&1 all the applicable Directions given by the Charity Commission under section 145{5)(b) of the Act Indepondont oxamln•r's statsment I have completed my examinatlon. I confim that no material matters hwle com8 to my attention in connection wilh the examinath)n giving me cau88 to believe that in any material resp&* 1. accounting records were not kept in respect of the Trust as required by section 130 of the Act: or 2. the accounts do not accord with those records. I have no COnmS and have C)8 across no oth6r matters in connection with the examination to which attention should be drawn in this report in order to enable a proper undetandI Sign8d.. Addre8s: Trite1eaf House, Cansiron Lane, Ashurst Wooj. West Su88ex, RH19 3SE Date:
orto . PCaSO Prostate Cancer SUniSation Charf number: 1170536 , ,Receipts and Pa ear ended 31st March 2022 ments Account for the L_ 2022 2021 . Unrestrlcted ;. Restricted i Total funds ', funds fund5 funds ..Receipts ,Members' subscnpt70r IDonatlons: members ! Donations: non-members Donations: corporate Donations at PSA testing events 'Fundraisin{._publlc meetings ,. Fundraislng: collections i Fundrai5ing.' events i Interest on de osit account 'Gift Aid ,Other 96 5,365 7,128 3,013 18.998 5,365 1,592 3,013 18,9981. 50 246 107 3.171 221 75 . Payments Governance '.Trustee & Public Llablllty Insurance Charitable activlty.. newsletter Charltable actlvlty.. support to members Charitable actlvlty: awareness Charltable activity: PSA Testing 'Charitable actvlty: donations to charitles 'Fundralsing Advertising Iother 2,395 646 1,561 1,055 427 15.182 427 15,182 15,816 5,132 2,971 3,056 764 136 iAsset and Investment urchases 162 162 162 ,Total payments Net receip_tsllpaxments) Transfers between funds 'Ca5h funds at beginnlng_of y_ear Cash fund5 at end of ear 142 997 145,407 142 997 145,407 136 240 142,996
., PCaSO Prostate Cancer Support Or8anlsatlon :Charlty number." 1170536 ',Statement of assets and Ilabllltles as at 31st March 2022 Unrestrlcted funds Restricted funds Total funds icash fund5 Deposlt account5 Current accounts 76,219 145 407 i 145 407 Other monetary assets Glft Ald recoverable I 'Assets retalned for the charity.'s own use Office E Llabllltles Amounts owed to suFJpller5 Approved by the trustees and signed on their behalf by.. Davld Hurst se(reta_.___. . Date..