Issue 19 Winter 2013

Making Support Groups MoreEffective By Terrey Garrigan

Men, Women & Food after Prostate CancerResearch by Larry Mróz PhD

The Federation welcomes Frank ChinegwundohIt’s a Man Thing - The AppReviewed by David Smith

Report from DroylstonBy John ColemanSanta-Cruz Rally by David Casley

Boxing Day Tractor RunPaul Markal

Prostate Matters Editor: Hugh Gunn

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Avalanche hits Reading!!By Steven Allen

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Contents

The Federation email address is:

the voice of prostate cancer patients and their families

This newsletter is published 4 times per year

�������������� ����������� ���������������� ��������Reg. Charity No. 1123373

Janssen sponsored the print production of this newsletter. Control ofeditorial content was retained by the Prostate Cancer Support Federation.

At the Federation’s Autumn 2012Workshop speakers were invited toshare the benefit of their experiencewith Support Group Leaders in order tohelp them run their Groups moreeffectively.

Sandy Tyndale-Biscoe, Chairman of theFederation, opened the meeting,welcoming delegates and observing thatwith the merging of The Prostate CancerCharity and Prostate Action these wereinteresting times. He asked thequestion: Is there a need for anindependent patient-led, UK wideorganisation? And, if so, what should itaccomplish on its own, what should itdo in collaboration and what should itleave completely to others?

John Anderson, former Chief Executiveof Prostate UK, spoke on “Leadership forSupport Group Organisers”

John’s talk focused on the idea thatleadership is about listening to people,that it is important to developindividuals into a team and as a leader

to get to know them, to serve them andto support and mentor them. Empathyis important and above all a passionabout what you are doing.

The three main leadership skills are:

Knowledge, Belief and Communication:Knowledge is power; know what youare offering, Believe in what you aredoing; do not be afraid to put youremotions on show, Communicate with

the voice of prostate cancer patients and their families

Macmillan Cancer SupportBy Kara McDonnell

Continued on page 2

John Anderson

The theme for the Prostate Cancer Support Federation’s 2013 AnnualConference is Clinical Trials – what they are, why participation might be goodfor you, what is being trialled, and how to get on them. We have some of thetop names in the field to speak to us. This year we meet in London, at theFriends House, in London, on Tuesday 14th May, commencing at 11:00 a.m.

As usual, at our Annual Conference, we will also be holding the Federation’sAnnual General Meeting. There are some important issues to discuss, andwe will be presenting, for approval, some significant changes to theConstitution that are designed to make the Federation more effective as theonly patient-led, independent, UK-wide prostate cancer charity.

Thanks to the continuing generosity of Prostate Cancer UK, attendance,including lunch, will be free. To book a place, please send an email tobookings@prostatecancerfederation.org.uk,or phone 01420 22560 (yes, that’s right, only 5 digits).

Prostate Cancer Support Federation2013 Annual Conference & AGM

Making Support Groups More Effective;Patients Working Together

Prostate Cancer Support Federation WorkshopThursday 22 November 2012, University of Warwick

your members; learn about them and getto understand them. John told us that agood leader uses “We” never “I” andinspires people to have confidence inthemselves.Ann MacEwan, Support GroupDevelopment Manager for ProstateCancer UK, gave a talk entitled "Two Ears,One Mouth – Consultation with SupportGroups”. Ann told us that Prostate CancerUK supports men by offering a Helplinestaffed by specialist nurses, by providingFact sheets, Booklets and Toilet cards (toenable men to have priority use of a loowhen out). PC-UK also offer Peer support;linking people together who may have asimilar problem. Their website hasinformation on publications, news items,campaigns, details of support groups andvarious on-line forum to supplementsupport groups and to share ideas. Theyalso fund research into causes andtreatments.

We heard about some of the new servicesthat PC-UK are offering such as their GetBack on Track scheme which is aboutfatigue management. Another is GetInformed, a study being piloted in Scotlandon informed decision making; asking theright questions and getting the correctinformation back. PC-UK are workingtowards having a more regional presence,including appointing Community Nurses.You can find out more about how they canhelp at www.prostatecanceruk.org

Ann told us about research being done byAberdeen University about supporting theneeds of men with prostate cancer. Theiraims include identifying good practice,looking at what makes a group appealingor unappealing and how leaders canimprove their group.

The survey initiated by PC UK earlier in theyear suggested that they need to improvetheir communication so that groupsunderstand better what PC-UK do andhow groups can benefit. Better routesshould be developed for seeking and

gathering the views of groups. Trainingadvice on running groups and courses forpatients and carers are needed and helpgiven to groups on how to raise awarenessof prostate cancer. Kara McDonnell from Macmillan CancerSupport is a Macmillan Co-ordinator in theWest Midlands, one of 13 co-ordinators inthe UK. Kara explained that a MacmillanCo-ordinator will visit a support group aslong as 15 people will be present. Shetalked about “How Macmillan can helpyou with your support group”, explainingthat their services include provision of atelephone support line, learning anddevelopment courses, befriendingopportunities, help with bereavement,£500 grants for support groups, on-linetraining for carers and Information,available both in leaflet form and on-lineat www.macmillan.org.uk

Kara told us that people attending groupsvalue the opportunity to share theirexperiences and she asked delegates tomake suggestions as to “How can wedevelop our support group to make thisexperience wider to help more people?”.Ideas included raising awareness via men’sgroups such as Rotary or the workplace,attending courses run by Macmillan andother organisations, “being better at whatwe do”, talking to medical professionalsand making GP’s aware of local supportgroups, linking a newly diagnosed man totalk to another who has been in the sameposition.

Delegates were then asked to consider“Aside from support groups, how can theneeds be met by an increasing number ofpeople affected by prostate cancer?”Delegates thought it important to makesure that women know about groups andmake their men aware of symptoms. Alsoraising awareness via radio, TV,newspapers etc. Other comments werethat men need to be given follow-upinformation either at diagnosis or at theirfollow-up appointment and that there is aneed for good urology nurses.

After a break for lunch, we heard from fourspeakers who told us about various aspectsof leading a support group.Mike Harrison, Chairman of ProstateCancer North West spoke about “Startinga new support group”.

After being diagnosed in Feb 2007 Mikewas in shock, scared and felt very alone.Following a radical prostatectomy he madea rapid recovery with no side effects but,left with a desire to help others, he decidedhe would like to start a support group. Hecontacted Mike Lockett, now sadlydeceased, who ran a group in the NorthWest and was so impressed with the groupthat he joined their executive committee.

Mike told his story about how he started agroup. He met with PALS at his localhospital and Macmillan staff from a localhospice. He drafted a constitution and inSept 2010 the first meeting was held withsome twenty attendees. Mike did a radiointerview and he designed and produceda leaflet about the fact that groups helppeople to cope and learn to live with thedisease.

Mike’s meetings take the format of a roundrobin discussion for an hour, then a teabreak followed by a speaker. Approx 30members attend each meeting. He startedthe group with a £500 grant and hasmanaged to raise £6,000 since. They havea committee of seven who meet outsidethe group time to discuss various ideas forraising awareness and fundraising.

Roger Bacon from PCaSO told us about“Running a large devolved group”. Heexplained that PCaSO has over 1,000members across the three counties ofDorset, Sussex and Hampshire. The groupstarted as PSA in 1999 and two years’ laterbroke away from PSA to become PCaSO.In 2008 another PSA group in Dorsetjoined and extended into Sussex and a yearlater PSA disbanded and all existing groupsjoined PCaSO with West/East/Centralbranches. PCaSO hold regular meetings,produce a quarterly newsletter and chargea £12 one-off fee for membership. They

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Kara McDonnell

Ann MacEwan

Mike Harrison

have had success applying for fundingfrom Astra Zeneca and otherpharmaceutical companies.Gary Steele from PCSG LeightonHospital had the audience in fits oflaughter, in a presentation in which hespoke about “Fundraising for supportgroups” telling us of the success his grouphas had, including being able to fund avoice-activated endoscopy unit for his localhospital. He talked about organising runs,fashion shows, a Jazz event, sponsoring aracing car an MG Class F, and even a wingwalk on a light aircraft!

Rob Banner from PROSTaid gave goodadvice on “Marketing a support group”.He observed that no two groups are thesame; some fundraise, others just wantinformation and support. Some want aquiet meeting while others prefersomething a bit more upbeat and lively butthey all have a common goal which is toachieve the very best for each and everyone of their members. All groups need

The Federation welcomes a newTrustee: Frank Chinegwundoh,Consultant Urological Surgeon atBarts.We are delighted that Frank has joinedour Board of Trustees, adding to theconsiderable expertise alreadyprovided by David Baxter-Smith,consultant urologist, who has longadvised the Federation on thingsclinical.Frank trained in urology in Londonand the West Midlands and spent twoyears in full-time research in London,which culminated in a Master ofSurgery degree by thesis. As a consultant Frank is the urologylead at Newham and introduced one-stop clinics for haematuria andprostate biopsy. At Barts and TheLondon, he introduced specialisedservices for prostate cancer andandrology. He pioneered the one-stopgeneral urology clinic at Barts in 2009,provides the prostate brachytherapyservice and prostate cryotherapy serviceand leads the andrology service. In 2011 he completed one year pilotproject for the Department of Health,running a men’s community prostate

clinic in Newham with the evaluationpublished October 2012. This projectwon a national award in 2012 – QiCexcellence in oncology awards –savinglives category. Frank is well-published and is thereviewer for several learned journals.He has been the Chairman of charityCancer Black Care since 1998 and wasa Trustee of Prostate Action from2003-2012.Although only just appointed, Frankhas already started making acontribution; working with DavidBaxter-Smith to establish a ClinicalAdvisory Committee for the Federation.

Roger Bacon

Frank Chinegwundoh

Gary Steele

Continued from page 2

This is a wonderful application both for those who are concerned about theirprostate and those of us who have it in all its stages. "Its a Man Thing" hasan easy to use to interface and takes the user through the A to Z of theprostate and its cancer. It is well worth the £1.99 plus a voluntary donation.

I have an Android 7" tablet with Jelly Bean 4.2 which does not permit me toexpand the text to fill the screen but I have been told that this will be fixed.It still worth buying even with this fault.

David Smith 'A prostate cancer sufferer', operating system - Jelly Bean 4.2.

“It’s a Man Thing” has been produce by PROSTaid and is available from theApple App Store or Google Play.

It’s a Man Thing - The App

The Federation welcomes a new Trustee: Frank Chinegwundoh,

Consultant Urological Surgeon at Barts

money and marketing is very easy, it’s justasking people. His advice was : Get toknow people and ask for their help; youwould be surprised how often they say yes.Another tip was to work with your localhospice; ride on their brand name.

As the event drew to its close, SandyTyndale-Biscoe reminded delegates thathe had started the day by asking about therole of the Federation. He explained thatthe Federation had spent a great deal oftime considering this question and hadidentified three priorities:1)Support for support groups, 2) Education of clinicians

3) Early DetectionHe then asked for delegates to say whichthey considered most important.

The vote was informal but the results were:of equal importance, both at about 40%,Early Detection and Education, withSupport for Groups considered lessimportant at approximately 20%. Thisprovided a good indication of whatmembers see as priorities and will beenormously helpful in shaping theFederation’s future direction.

With thanks to Terry Garrigan, SECHC fortaking all of the notes

Rob Banner

Would you like to help develop nutrition education andcounselling as part of a survivorship program for menwho have been diagnosed with prostate cancer andtheir partners and families?I am Larry Mróz at the Centre for Men’s Health, Institutefor Health & Wellbeing, Leeds Metropolitan University.

What is the purpose of this study?Diet and lifestyle improvements can help some men after aprostate cancer diagnosis, yet many men have a hard timechanging what they eat. I’m Larry Mróz - a researcher fromCanada who studies ways to help men improve their diets asthey deal with prostate cancer. If you have been diagnosedwith prostate cancer in the past 5 years and are interested intalking about food and eating, I would be grateful for yourhelp.

The main purpose of this study is to better understand howwe can help men improve their diets after a prostate cancerdiagnosis, and how a man’s relationship – especially with hiswife or partner - influences what he eats. Men often rely onthe women in their lives to take care of their diets andcouples develop ways of dealing with food within theirrelationships. I would like to ask men and their wives orpartners (or other important people in their lives) aboutwhat and how they eat.

Several men who have been diagnosed with prostate cancerand their wives or partners are being asked to help with thisresearch. If you decide to help you will be asked to fill-out abrief food journal for one week and then participate in a face-to-face interview. You can choose a suitable time and locationeither at the Institute for Health & Wellbeing in Leeds, oryour home. You also have the choice of either beinginterviewed separately and privately, or together with yourwife or partner in a joint interview.

We hope that those who help out in this project find it aninteresting and enjoyable experience. For many people,taking part in research is a way of getting their voices heardand to have a say about topics that are important to them.This study will help us to better understand how you thinkyour diet has been influenced by your wife or partner andrelationship. The findings will therefore provide a betterunderstanding of the nutrition education or counsellingneeds of men who have been diagnosed with prostate cancer.

Who should get involved?I would like to interview men who have been diagnosedwith prostate cancer in the past 5 years and who areinterested in talking about food and eating. I would alsolike to interview their wives or partners. You have thechoice of either being interviewed separately and privately,or together with your partner in a joint interview.

Closing date for application. None

When will this activity take place? The programme startedin October 2012 and will run until 2013

Where will this activity take place? This activity will becasual, one-time, recorded, face-to-face interview with youand your wife or partner. You can choose a suitable time andlocation either at the Institute for Health & Wellbeing inLeeds, or your home.

How to get involved:

Please contact:Larry Mróz Centre for Men’s Health, Institute for Health & WellbeingLeeds Metropolitan UniversityQueen Square House 80 Woodhouse Lane, Leeds:Email: L.Mroz@Leedsmet.ac.ukTelephone: 0113 812 3612

For further details go towww.prostatecancerfederation.org.uk/mroz.pdf.

Men, Women & Food after Prostate CancerLarry Mróz PhD Centre for Men’s Health, Institute for Health & Wellbeing Leeds Metropolitan University

Larry Mróz PhD

This was the second consecutive year that a tractor run hadbeen organised on behalf of the Group to raise funds. Thetractors met at Keenes Farm opposite the Wyre Forest VisitorCentre, Callow Hill. The planned route was to enterBewdley via the bypass and gather in Dog Lane Car Parkbefore visiting Little Lakes Leisure Park then returning to thefarm. Like most organised events it didn’t go to plan. Theflooding in Bewdley prevented the tractors from enteringBewdley via the Bridge, and as there was no alternative (ifBewdley was to remain on the plannedroute) but to negotiate the narrow roadspassing the Hop Pole Inn and down thehill into Bewdley.

This year I managed to talk one of ourmembers, Mike Carr, into joining me(dressed as pirates) to do a little tinrattling and pillaging. We thought thepirate theme might add some additionalcolour and flair to the overall event.Now for those of you who don’t knowme, I don’t do things in half measures.If we were to go dressed as pirates thenwe had to look the part which includedall the accessories that pirates carry, eg.Muskets – and in this case musketswhich fire party poppers with somealarming effects, daggers and a 2ftcutlass!!

Prior to the event, I was at home putting the finishingtouches to my outfit and weapons when my daughter arrivedand as she is a little more street wise than I give her creditfor, she took one look at me and said “Dad, you know youcould be arrested for carrying fire arms and offensiveweapons”! On reflection, I thought it may be prudent to seekadvice from the local constabulary . The last thing that I

would want on the day would be to be confronted by anarmed police response unit. Details of the event were loggedon an incident report at Kidderminster Police station. Theyalso wanted to know how many tractors would be involvedin the Run. I said that I was not sure but we had up to 25last year.

On the morning of the event, the weather cleared and at

about 9.30am the tractors started to arrive at the farm. Wedidn’t have 25 – in total there were 53 plus 4 Landrovers,and at 10.00am they formed a convoy and headed forBewdley. I had a flash back of my conversation with thepolice officer when I said that I thought there would beabout 25 tractors on the day. Fortunately we, as a group,were not responsible for the tractor element of the event.The tractors did cause some delays en route but the majorityof motorists took it all in good spirit.

During our fundraising in Bewdley, Iapproached a gentleman and his wifeand asked if they would like to make adonation. The lady pointed my musketat the gent’s head and he yielded byplacing £2 into the bucket. The gentthen asked where all the tractors camefrom and what were we up to. Iexplained that we were pillaging inBewdley to raise funds for PCSG. Thegent then said he thought pirates likeVikings raped and pillaged. I said thatwe do do the former but it was only byappointment!!

We moved on from Bewdley to LittleLakes Leisure Park where we continuedour bucket collections with the help ofthe Wardens and we were also

presented with a cheque for £50 from the management. Intotal £716.53 was raised for the Group’s funds.

I hope this activity will now become an annual event and ifso, I could do with some more help on the bucket collectingfront……..Please!!

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Boxing Day Tractor Run 2012

Please Check Your Details

Please would all affiliated members check on the PCSF website, that

their details are correct on both the map:

http://tinyurl.com/429ee7f

and the contact web page:

www.prostatecancerfederation.org.uk/membershipList.htm

If there are any alterations, please contact:

Sandy Tyndale-Biscoe

Email webmaster@prostatecancerfederation.org.uk

Paul Markal, Prostate Cancer Support Group, Kidderminster

Did you know, if your group is a registeredcharity, you can claim GiftAid from HMRCon personal donations given to the charity.This will increase their value by 20% at nocost to the charity or the donor. To registeror to find out more, go to:

Gift Aid

www.hmrc.gov.uk/charities/gift-aid-toolkit.htm

Back in November our prostate cancer support groupProspect was approached by the Santa-Cruz rallyorganisers to see if we would like to take part in theirDecember event. They had seen our web site and decidedthat our group would be a suitable "good cause" for whichthey could raise money. Each year they choose two goodcauses to help.Santa Cruz has been raising money for local good causesfor several years through their rally events (you can checkout the web site on www.santa-cruz.co.uk). We were ofcourse delighted to take part by having a prostate cancerawareness stand at the rally's final destination point - theFry's Club in Keynsham Bristol.Scores of VW owners took part in the Santa Cruz rally indecorated (Christmas theme) vehicles from EasterCompton to the Fry’s Club. It is amazing how manyvaried Father Christmas models one can get on top of aVW Camper Van. Apparently the furthest travelled vanfor the rally was from Hull - such is the growing appealof the event.

Prospect members Mike Broxton, Richard Ormerod,Bernard Smyth and Malcolm Gamlin did their bit byrunning an information stand, distributing leaflets andtalking to men and their partners about prostate cancer.It was a great afternoon; a lovely family atmosphere withchildren's entertainment provided and a very special rafflewith quality donated prizes - the first prize being a pairof Eurostar tickets. The food and drink were good too!The event organiser, Richard Dagger, with his wifeMichelle and some of his event team came to our JanuaryMembers' Meeting at Bristol Aerospace WelfareAssociation (BAWA) and presented the Group with acheque for £1,250 which represented half of the moneyraised from the December rally. This is a big boost for ourfunds and we are very grateful to Richard and the SantaCruz team for their donation.

Santa-Cruz Rally

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By David Casely, Prospect, Bristol

The Droylsden Support Group has been revitalised overthe past year by the Urology Specialist Nurses from ourlocal hospital (Tameside). The nurses attend everymeeting and encourage their patients to attend as they feelthat meeting other patients helps them to decide upon thetype of treatment to have and to deal with the effects ofany treatment.

On Thursday 11th October 2012 a fundraising concert washeld by the group, the nurses did most of the organisingof the event and sold most of the tickets, which was a sell-out. We were very fortunate to have Jackie Dijon and DomCollins to perform for us, Jackie used to be the warm upact at comedian Bernard Manning’s club and Dom was acomedian appearing on some of his shows.

The concert was a great success with top classperformances by Jackie and Dom and including a duetsung by Jackie and one of the Consultant Urologists Mr.Richard Brough. His performance was so good we arethinking of booking him for our next concert.

The aim of the concert was to raise funds towards thepurchase of a Robotic Arm to be used in prostate operationsat another of our local hospitals – Stepping Hill.

During the concert a raffle was held for the many prizesdonated by local businesses and football clubs. Among theprizes were a signed Manchester City shirt, a signedphotograph of Manchester United’s Wayne Rooney whenhe was team captain, a signed photo showing MikeSummerbee and other Manchester City players holdingthe Premier League Trophy, a free car service and MOT, aselection of jewellery and many other items as can be seen

Droylsden Support Group.By John Coleman

Urology Nurses Shirley and Kerry

Mike Broxton, Richard Ormerod, Bernard Smythand Malcolm Gamlin

Consultant Urologists

from the photograph.

The total raised from the concert was over £1,250 and thegroup decided to increase it to £1,500 which waspresented to the Consultant Urologists from our localhospital who attended our Christmas Party. This concertwas the first we have ever done and it was such a successwe plan to do more in the future.

On 24th January 2013 an avalanche hitReading’s Royal Berkshire Hospital. No,not more of the snow from the previousweek, but an avalanche of menattending the first ever PSA screeningsession in Reading. In just 4½ hours 489men attended to have their blood takenfor PSA analysis.

The evening was organised by theCentral Reading Lions Club. The firstsuch screening event to be arranged by aLions Club was at Bridgnorth inShropshire. The great success of theirfirst event then not only spawned whatis now a yearly occurrence butsimilar events organised by otherLions Clubs around the country.

Central Reading Lions Club hadpicked up on this and decided to dosomething similar. Arguably moreused to being involved with fund-raising BBQs, firework evenings andthe like, this was a very new venturefor them.

The project was managed by one oftheir more prominent members,John Mack – a powerhouse ofenthusiasm and vitality, andsomeone in whose vocabulary the words‘no’, ‘impossible’ or ‘unlikely’ simply donot exist.Good organisation is essential

The venue for the evening was the RoyalBerkshire Hospital – home of a UrologyUnit with a national reputation for theexcellent management of prostate cancerand where all of the blood sampleswould be processed.

The hospital layout fortunately allowedfor the use of a large waiting area for theinitial reception, completion of forms etcand there was additionally a League ofFriends tea bar which did a brisk tradefor the whole evening. The pathologydept was only 30 metres away, completewith a secondary waiting area and 4purpose designed phlebotomy areas.John Mack (a hardened business man)had negotiated a financial contract withthe hospital and pathology managementto cover all costs of taking and processingthe blood samples.

The event was timed from 5.30pm to9.30pm. Using this time-scale allowedthe free use of the large nearby staff carpark – how often can you now park at ahospital for free!

On the evening, the Lions had a machinethat worked with military precision – carpark attendants, reception staff, patientdata forms and even an ample supply ofpens with which to fill in the forms. Youname it, they had thought of it.

Steve Allen, Chairman of the ReadingProstate Cancer Support Group, said: “Iwas staggered by the organisation and thenumber of volunteers involved. If we, as asmall support group, had tried to take onsuch a project, we would have beenoverwhelmed by the public response.”Publicity is the key

How on earth do you get 500 men tocome? As one of the Lions said:“Publicity is the key – if the public do notknow about it, then they don’t come.”5,000 flyers had been printed anddistributed – many by the Lions ClubSanta Claus as he visited the Readingarea as part of the Lions pre-Christmasfund raising. Posters and flyers were sentto Golf Clubs, other Lions Clubs, localcompanies and displayed on communitynotice boards. 2 local radio stations andthe local press gave good coverage.

John Mack said: “We hadn’t a cluewhether 20 or 200 would turn up. Wenever dreamed that so many would come.” However, the whole team rose to thechallenge, particularly the phlebotomyteam. Even Steve Allen was drafted into help take bloods in the latter half ofthe evening (as well as being Chairmanof the local prostate cancer supportgroup, he is also a recently retiredConsultant Anaesthetist at the RoyalBerks Hospital.) Rarely did anyone waitlonger than 30 minutes for their test.What about he cost?

The Lions had underwritten all costs, buthad sensibly obtained some financial

funding from local companies. A robustfinancial contract had been agreed withthe hospital. Apart from the strategicplacement of collecting buckets for thosewho wished to make a donation, thetests were free.Keeping things medicallysupervised

As with previous similar events, DavidBaxter-Smith was involved and agreed toover-see the reporting of results topatients with the standard red /orange /green letter system that has been used inthe past. Also he will follow up all

patients with abnormal test resultsto ensure they seek appropriatetreatment locally. David came onthe night and every 30 minutesgave a brief talk about PCa to thewaiting throng. How he retains hisconstant drive and enthusiasm isquite amazing.

To be honest, the local urology unithad shown support – but from adistance. They were not activelyinvolved at any stage but, equally,were not hostile to the project – ashas been the case in other parts of

the country. One of the local ConsultantUrologists dropped in to see how thingswere going on the evening. It wasstaggering to find later from DavidBaxter-Smith that, despite having done300 or so such events, this was the veryfirst time he had been able to meet witha urologist local to the area concerned. But why are such eveningsneeded?

Many would say that it is little short of ascandal that there is no national PSAscreening programme. Even worse,patients are still being advised againsttesting by ill-informed GPs – often inyounger patients in their 50s. When willpeople realise that the earlier anaggressive PCa is found then the better itcan be treated. As Steve Allen said: “PSAscreening done in an appropriate way isnot scare-mongering. It is just plaincommon sense”There is little doubt that the evening inReading will pick up some patients withPCa that can then get earlier treatment.Equally, it will also reassure the majorityof men that they have nothing to worryabout.

Avalanche hits Reading!!By Steven Allen, Reading Prostate Cancer Support Group

Nearly 500 men canme for testing that evening

Editorial note: As part of its long term strategy, as discussed at the Autumn Workshop see page 3, the Federation has chosen campaigning for EarlyDetection as a priority action, and the first phase of this will be to roll out a National Plan for PSA Testing sessions such as this

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Prostate Matters is published four times ayear, providing news, information,personalmemoir and opinion about prostate cancer.It also reports, quotes and cites publishedmedical views and research findings aboutprostate problems.

The Federation does not promote anytreatments or dietary, drug, exercise orlifestyle change intended to prevent or treata specific disease or condition. Anyone whowishes to embark on any such treatmentsshould first consult with and seek clearancefrom a qualified health care professional onany treatment or lifestyle changes

please fill in the number required in the boxes, cut out the form and send to:Prostate Support Federation, Mansion House Chambers, 22 High Street, Stockport, SK1 1EGPostage and Packaging will be charged

Resources available from the PCSF,

Setting up a support group

Role of a Clinical Nurse Specialist

Clinical Trials

The Real Prostate Cancer Risk Management Programme

Understanding Cancer Waiting Times

Knowledge Empowers, Treatment Information Booklet

It’s A Man Thing, Awareness Card

Address:

phone:

Email:

Post Code:

Group:

Name:

22 High Street, StockportCheshire SK1 1EGTel: 0161 474 8222Charity No. 1123373

www.prostatecancerfederation.org.ukPatrons: Dr. Thomas Stuttaford OBEGloria HunnifordChief ExecutiveRowena BartlettFederation Trustees

Chairman:Sandy Tyndale-BiscoeVice Chairman:Ken MastrisSecretary:David SmithTreasurer:Hugh Gunn

Mike HarrisonMr. David Baxter-SmithRob Banner, Bob ArthyDr. Frank Chinegwundoh

Medical Adviser:Mr. David Baxter-Smith

To View other roles carried out byvolunteers, please visit:http://tinyurl.com/3psctpv

✁

From its early beginnings, founded in1911 by Douglas Macmillan, MacmillanCancer Support has grown to becomethe largest cancer care and supportcharity in the UK. We can help supportgroups through:

1. Our website: www.macmillan.org.uk.The website has a wealth of information and also online forums and communities you can join.

2. Through the website you can also order free leaflets and guides aroundspecific cancers and also informationsuch as tips when setting up a supportgroup.

3. Our support line on 0808 808 0000 Monday to Friday 9am-8pm. The support line speaks 120 languages and can give information about cancer and also benefits advice.

4. Attending or organising Learning anddevelopment opportunities with our team. Macmillan offers a range of freecourses, workshops and e-learning forpeople affected by cancer including carers, family members. volunteers and community members. Topics available include loss and bereavement, listening and responding and buddying and befriending. Our online training

resource is called LearnZone and is also free. If you are you living with and or beyond cancer? Would you like to join other cancer survivors andtake part in an online self help coursedesigned to help you make the most of your health and well being? Pleasego to http://tinyurl.com/c9uvphf to find out more. We will be sharing a number of top tips and strategies to help you move forward. You can also"meet" other people living with cancerthrough the discussion forum, moderated by an online facilitator, toshare ideas and offer support to eachother.

5. We also have regional training eventsas well including the Helping Overcome Problems Effectively course.

6. Our grants programme. We offer grants to support groups. You can apply for a grant to cover start up costs or for groups to expand and extend their reach. This could be useful if you are thinking about adapting your group to include an activity element or to feed your viewsinto the Health services.

For more information please look onlineor alternatively contact you localMacmillan Involvement Coordinator. Weare spread all over the country so therewill be one allocated to your area. Ourcontact details can be found through thesupport line,http://tinyurl.com/ahwvxsl

Macmillan Cancer Support

or:http://tinyurl.com/ahwvxsl

Kara McDonnell

By Kara McDonnell