PCaSO Prostate Cancor Support Organlsatlon Dorset Hampshire Sussex Trustees Annual Report Year ending 31" March 2021 Charity Name: PCaSO Prostate Cancer Support Organisation Charlty Re8iStration Number: 1170536 Postal Address.. PO Box 10, Emsworth, Hants POIO 7ZP Website: www.pcaso.org The charity has no offices so the regISted add$S with the Charity Commisslon is the Honorary Secretsrfs home address. Hlstory PCaSO is a charitable incorporated or8anisation registered with the Charity Commisslon and wlth the Informatlon Commission. A group wa5 originally set up in 1999 by the late David Rowlands and others In Emsworth, Hampshlre, under the auspices of another charity. It became a separate unincorporated associatSon In 2002 and in 2016117 moved to the new form of governance. The previous charity number may still be seen in some older Siterature. Executlve Commlttee For the year ending 3151 March 2021 All Trustees are members of the ExecutNe Committee. Roger Bacon Vivian Miles David Hurst Nicky Annells Allan Higgin Derek Pilllng Barry Taylor Peter Weir Chairman Treasurer, became seriously ill in July 2020 and resigned on 31 August 2020. Secretary At the Annual General Meeting held on 26 August 2021 all remalnlng Trustees stood down and all were re-elected by the assembled membership. Lance Allen and Kevin Simon5 were invited to become Trustees and the members at the AGM ratified that decision.
Purposes and Alrns 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 risk 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 publlc in all areas relating to prostate cancer. The Or8anlsatlon of PCaSO. PCaSO does not own or rent any offices and has no employees. Everything is handled by volunteers working from home. Meetings are held in rooms usually rented for that purpose. PCaSO is a membership or8anisation with, currently. 901 members across the three branches described below includin8 some from around the country who have either joined through contact via the internet or have moved away from our branch areas after joining. There are also two now livin8 abroad. PCaSO works across four counties along the south coast, East Sussex and West Sussex, Hampshire and Dorset. It is or8anised into three Branches, namely. Sussex, Hampshire and Dorset, and each Branch has its own committee and each has its own bank account. The Executlve Committee had agreed at the meeting on 29, October 2019 that it would not seek to expand beyond the current area. Each Branch has rented a commercial self-storage unit to store Itterature. publicity material and miscellaneous equipment. Under the Constitutlon PCaSO can have up to 12 Trustees and currently aims to have the from each Branch. For most of the year under consideration Hampshire had just one and in July 2020 the treasurer. Vlv Miles, was taken ill and resigned on 31 Au8USt and later died. For the rest of the year so there were six Trustees as named above and all sit on the Executive Committee which meets quarterly to oversee the management of the charity. PCaSO is also a member of the National Federation of Prostste Cancer Support Groups, which operates as Tackle Prostate Cancer or just as Tackle. This is made up of some 90 support groups from across the country. The effects of the COVID pandemlc PCaSO's maln 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 series of events where we offer free PSA blood tests to men who have booked appointments. In addition there are usually re8ular face-to-face committee meetings. In line with the government regulations it was not practical to hold any of these events durin8 the year so all planned meeting and test events were cancelled. We continued the committee meetings online by usingzoom and aftera few months decided to start holding meetings for members also using Zoom. These were usually talks by clinicians and others and advertised by invitations to members by email. The Updates newsletter was published as usual three times a year and circuloted by both post and email.
There were requests for literature by hospitals and individuals which were handled by post and occasional phone calls to offKers from men needing infomiation. The focus of our work In normal years- and when the COVID regulations are relaxed again - PCaSO has two main area5 of work and is developing a third area. The main centre of work is to encourage the early diagnosis of prostate cancer. If the cancer is diagnosed before it causes symptoms then it is almost always curable. However, althou8h 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 realise the significance of symptoms and the eventual diagnosis is often tenninal. PCaSO devotes much resource to running 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, so 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 series of leaflets on prostate cancer which are distributed free of harge at such events. PCaSO runs open public meetings 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 aspects of treatments. The frequency and make-up of the meetings depends on many factors. Some are monthly while others are quarterly. Some are discussions between individuals while others concentrate more on the speaker and his or her subject. PCaSO encourages its active members to talk Open about prostate cancer and the Trustees together with other members will take phone calls from men - or their partrbe-who have concerns or maybe are concerned about friends or relations. It is important for men to arn about the cancer and understand the treatments offered and this knowledge often Starts with a tentatNe enquiry. An area which PCaSO is moving into is living with 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 has been shown that diet and exercise tan be important in reducing the effects of cancer so PCaSO ha5 provided extensive information within recent editions of Updates magazine and talked to the Penny Brohn organisation, who run courses for those suffering with cancer, to explore the possibilities and costs ot them running a series of courses free to PCaSO members when regulations allow. How our activities deliver publlc benefft PCaSO has members but the membership 15 as much about spreading information and knowledge of prostate cancer as it is about getting any benefits to help improve their personal situation. Many people who join are those who have been diagnosed eady and cured and now want'to put something back, as those who are seeking to improve their knowledge of the cancer they have. However the price of membership - £12 to be a life member- is not consi(lered like to put people off joining. We follow a membership pattern mainly for the credibility it gives us when talking to clinicians and those in authority. To say we have around 900 members and that we represent the patients will make them pay attention. Almost all our attivities are aimed at men and their partners who are in the age bracket likely to be dia8nosed with prostate cancer i.e. men over 40. We run public prostate cancer screening events (called
PSA testin8 eventsl several times a year (see below for details). The PSA testing events are restricted to those in the age bracket likely to be at risk of prostste canr but the public meetings are advertised as open to anyone who might be interested. In January 2020 we published an updated and expanded edition of our comprehensive 76-page booklet on prostste cancer written, as we say, by patients for patients and this is 8iven away to anyone who wants it free of charge. Doctors have complimented u5 on it and some hospita15 take bulk copies to g¢ve to patients. Tackle have adopted this booklet for distribution to all their 90 support groups. Since we have not had group meeting5 nor test events we have a large stock of these booklets so may hold off updating it for another year. In addition there are four other leaflets 8iven away free of charge aimed at particular areas of concern. The Sussex Branch has produced leaflets for local hospitals explalning brachytherapy and radiotherapy procedure5. The hospita15 produce the text and PCaS0 organise and pay for the design and printing of the leaflet in return for having an advertlsement sayin8 that the charity 15 available to help patients. PCaSO also provlde radiotherapy unlts In three local hospitals with SLXiml biodegradable bottles for those patients havin8 treatment for prostate cancer. Each patient has to drink half a litre before treatment and the bottles replace single-use plastic cups. Who uses our sebylces The vast majority of those making contatt with PCaSO live in our three branch areas. We do get contact from those who live elsewhere in UK and, very occasionally. in other countries but those are generally through the internet following a search for a particular aspert of prostate cancer. We do not seek those ¢onta¢ts but will happily answer their querie5 and di5CU55 their problems. Many of the initial contacts are by women who are concemed about their partners and we have produced leaflet written by some of our female members aimed particularly at those contacts. However the tar8et Is to get men aged over 45 to learn about prostate cancer, to consider their vulnerabllity to prostate cancer and decide to have a PSA test. A high percentage of those tested, 92.5% is our average, will have a normal reading but those who have a raised reoding will be referred to their GP for further action and that often means referrin8 onwards to a hospital for fijrther checks and possible diagnosis. Men sometimes return to PCaSO for more information when they are offered a choice of treatments by doctors Of when the cancer has spread from the prostate and they are faced wlth Ilving with 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 going to their doctor. Many men do not know what a prostate does, where it is or even117% according to one survey) that they have one. So education is important, especially as if symptoms are evldent the cancer has probably progressed too far to be cured. In the last decade research has discovered that tt is likely that if dose relatives (father, brother, uncle) have had prostate cancer then it is 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 with a family history of breast cancer can also be at risk of having prostate cancer. PCaSO wants to get this irrformation better known as it is most important that these men get Checked early.
The PSA tsst Organising and runnin8 PSA testing events is a large commiknent by a relatively small group of volunteers. Each Branch is responsible for organising events in their aa and the 15 man who takes the lead for that area. The prostate produces a protein. Prostate Specific Anti8en. which is secreted into the blood and can be measured in a pathology laboratory. A small vial of b1(d is taken from the arm by a phlebotomist and sent to the laboratory. The result comes back in a few days. This does not indicate canr but can Indicate a problem with the prostate. The test is not completely accurate and can give false p05itive5 and frdlse negative5 but it IS the only quick and easy test that yet exists. The NHS declines to spend the money required to have a universal screenlng proces5 when the test is not completely accurate so charities such as PCaSO have tried to fill the gap. PCaSO wlll organise an event, often working with a local Lions. Rotary or Masons group, where, on a specific day, men can have a blood test and then be Sent the $It a week or two later. Those with a raised readin8 are recommended to speak to their GP to di5CUS5 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 testing to any men between the ages of 45 and 80 as these are men most Ilkely to be at risk. In calendar year 2019, across Sussex, Hampshlre and Dorset, PCaSO held 25 free PSA testlng events and tested 5,776 men. We found 401 men with a raised PSA level, about 7% of those tested. Those men with a ralsed PSA were recommended to see their GP to discuss their result. Since we started testlng in 2011 we have tested 19,286 men in our area. Every man attendlng the event Is given a briefing on the test and its pros and cons. We know that this has resulted in men talking about prostate cancer with families. friends and colleagues. At almost every test event men say that they came because x*meone they know had been befo. Before the current year all bookings were made by telephone which was onerous on the person acceptin8 the calls. All the admlnistration was on paper with the consequent need to check and double check. Many other groups around the country now run their own events. The cential point Is the Graham Fulford Charitable Trust IGFCTI whlch has a system where consultant urologlsts check the results and then the Trust de5patche5 the emails and letters to the Indivlduals. Thls system was being overwhelmed with paper and has been computerised. PCaSO. through the IT consultsnt members. devised an online booking Svstem which automated the administration beforehand and on the day. This was then extended so that the pathology labs used by PCaSO could add the individual results to a spreadsheet and then the results were elertronlcally despatched to GFCT for checking and despatch. PCaSO is keen to restart the PSA test events a5 500n a5 it is safe to do so and at the time of writin8 discussions are underway with interested parties. Regulatory Notlce PCaSO is a registered charity and as such is re8ulated by the Charlties Commission. We are additionallv mindful of the recommendations of the Fundraislng Regulator. PCaSO 15 fortunate to have a trustee who ha5 developed expertise in the Data Protection Regulatlons and he has accepted the voluntary position of Data Protection Officer. Under his guidance the Trustees are
confident that the charity complies with the requirements of the Regulation5. The subject is permanently on the agenda of the Executive Committee. Flnanc5al Report This was a very unus¥Jal year with very little activity because of the COVID pandemic resultin8 in turnover being 77% down on the previous year. Receipts totalled £22,750, almost entirely through donations and the resulting Grft Aid. Payments totalled £15,994. Governance at £2,492 was mainly annual fees for services such as storage, the PO Box, etc. The newsletter cost £1,561,. the cost of printing literature and other Awareness matters was £5,132 and there were donations out totalling £3,056. Cash balances increased over the year by E6,756 from £136,240 to £142,996. The trustees consider that our funds are more than adequate to continue our activities durin8 this difficult time. Reserves. At the meeting of the Executwe Committee on 2t July 2021 the Trustees agreed a policy on reseNes that there would be a minimum reserve comprising two years of operating costs lexcluding PSA events) plus one year of PSA testing event costs. The policy and the figures would be reviewed annually. Statements No Trustee received any payment for services beyond normal expenses and no Trustee had any interest in any organisation receiving 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 Trustees declare that they are not aware of any serious Incidents or other matters that they should have ported to the Commission and have not done w. Approved by the Executlve Commlttee and slgned on their behalf 7 202/ David Hurst Honorary Secretary
Independent exarnln•rf$ reportto the trustees of PCaSO Pr051ate Cancer Support Oryanlsatlon. tharity number 1170536. Report on the accounts of the charity for the year ended 3151 March 2021, which are set out on pages 2 and 3. R¢spectlve responslbllltles of the trustees and examiner The charltvs trustees are responsible for the preparation of the accounts. The charltls trustees consider that an audit is not required for this year under sertion 144 of the Charltles Act 2011 Ithe Charities Actl and that an Independent examination is needed. It is my responslblllty to:_ examine the accounts under sertion 145 of the Charltles Act, to follow the procedures laid down in the 8eneral Directions glven by the Charlty Commission lunder section 14515llbl of the Charltles Art, and to state whether particular matters have come to my attention. Basls of the Independent examlnerfs rtport My examlnatlon was carrled out In accordance wlth the general Directions glven by the Charlty Commlsslon. An examinatlon Includes a revlew of the accountlng records kept by the charlty and a comparlson of the accounts presented wfth those CordS. It also Includes conslderatlon of any unusual items or disclosures in the accounts. and seeking explanations from the trustees concernlng any such matters. The procedures undertaken do not provide all the evldence that would be required In an audit. and consequently no opinion Is given as to whether the accounts present a 'true and falrf vlew and the report Is Ilmlted to those matters set out In the ststement below. Indopend•nt examln8rf$ sl•tsment In connection with my examination. no material matters have come to my attention which glves me cause to belleve that In any material respert: accounting records were not kept In accordance wlth sertlon 130 of the Charlties Act or the •ccounts do not accord wtth the accountln8 records I have come across no other matters in connectlon with the examlnatlon to whlch attentlon should be drawn In order to enable a proper understandln8 of the accounts to be reached. RQue Greenford, Batts Lane. Pull)orough RH20 2ED Date
.PCaSO Prostats Cancer Support Or8anlsatioft Ciwrity number. 1170536 IReceipt$ and Payments Account for the year ended 3tst March 2021 2020 Unrestrirted lle$trk ,' Totslfiinds I fvnds Ti>tal funds .Recelpts Member5, subscriptlons . Donatlons: members j Donatlons: non-members Donatlons: corporate Donatlons at PSA testlng events Fundrai5in8: public meetin8S , Fundralsln8: colle¢tlon5 Fundra15in8: events Interest on deposlt account Gift Aid Other 96 240 10,854 .: 1,592 4,420 '. 1,592 4,420 3,545 18,058 i 47,705 1,379 2,147 246 ', 604 6,126 550 97.959 75 22,750 75 22,750 Payments ' Governance Trustee & Public Liablllty Insurance . Charttable artlvlty.. newsletter '.Charltable activlty: support to members .Charitable actlvlty: awaneSS '.Charitable activlty: PSA Testing ',Charltable athlty: donatlons to charltles Fundralslng Advert15in8 other 2,492 646 1.561 2,492 . 646 1.561 2,249 751 3.057 5,038 5,132 2,971 5.132 722 136 ;, 15,YJ4 15,994 88,327 IAsset and Investment purthases 3,704 3,704 Totsl payments 15.994 15,994 92,031 ,Net feceSpts/lpayments) Transfers between lunds Cash funds at be8innln8 of year Cosh funds at end of year 6,756 6,756 5,928 136,240 142,996 130,312 1 1 136,240 142,996
PCaSO Prostate Cancer Support Orpnis•thy) Ch*ity number. 1170536 .Statement of assets •Thi iiabilltles as at 31st M•rth 2021 Unfestrf¥tri '. Restrfrted ;, Total funds funds 'Cash fund$ Deposlt accounts Icurrent accounts 81,812 81.812 61.186 142.998 142.998 Other monetsry •sstts Glft Ald re¢overable 1.298 1,298 1.298 1.298 Ass•t$ r•tslned for the tharlty's own use Offlce Equipment Llabllltles Amounts owed to suppllers Approved by the trustees and signed on thelr behalf by: Davld Hurst Trustee Date: