|
PROSPECT CANCER SUPPORT GROUP NEWSLETTER #24 (July 2009) Acting Editor Joe Bradley
10 Stanton Drive, Ludlow, SY8 2PH (Tel. (01584)877827) TONY ROGERSIt is with sadness that we report the death of Member Tony Rogers. He died on 30th April. His widow tells us that she does not believe that his cancer was causing him too much pain during the closing stages of his illness. He suffered a broken leg and a damaged hip in a fall a short time before he died. HYPERBARIC OXYGEN THERAPY The Editor has received a letter from The Royal Marsden Hospital where a team led by Professor John Yarnold and Dr.Jervoise Andreyev are seeking to set up a randomised double-blind controlled phase III trial of hyperbaric oxygen therapy in patients suffering long term side effects of radiotherapy for a pelvic cancer. Any members here who feel this may be of interest to them are invited to contact me by telephone and I will send them further details. (See also p.6. of "Prostate Matters") I shall also need to know the name of their consultant clinical oncologist here. COMMITEE MEMBERS At the Annual General Meeting of the Group on 22nd. April 2009 the following were elected to the Committee. The positions they hold or have since assumed are also listed:
Malcolm Gamlin Chairman (01275)859419
Richard Firth Secretary (01454)413948
Joe Bradley Treasurer (01584)877827
Mike Ashford Membership Secretary (01934)415416
Mike Andrews Web Site Manager (0117)9682140
David Casley Publicity Manager (0117)9422463
Peter Owens Commitee Member (0117)9684208 There are still vacancies for Committee Members and it is so important for our Group to have as wide a mix of knowledge and experience as possible on the Committee. So if you would like to consider serving on the Committee please contact Malcolm who will be pleased to give you more information of what it involves.
PROSTATE CANCER IN THE SOUTH WEST
The Chairman and a few members attended a morning event on this subject held on Saturday 28 March at the University of the West of England. He has provided the following resume: It was a seminar made up of a series of lectures on various aspects of prostate cancer. A plenary lecture by David Gillatt was followed by lectures on the diagnosis of prostate cancer, on rapid testing for prostate cancer detection and on research into improved tests and therapies for prostate cancer. Much of what was discussed is "in its infancy" but it gave great hope for positive future developments.
There was a fascinating and absorbing talk on the use of biological markers for more accurate tests for prostate cancer. Post mortem data suggests that approximately half of all men in their fifties are likely to have evidence of prostate cancer but only 4% of men will die from the disease. A biological marker that would accurately predict, in the early stages of the disease, which prostate cancers will become aggressive would allow restriction of radical therapy to those men positive to the marker whilst those that were negative could be safely offered more conservative treatment. We were brought down to earth by the final two lectures. The first was from a Macmillan speaker on the financial impact of prostate cancer and on how their charity can help. The second was on the support available to men with prostate cancer from the Prostate Cancer Charity.
All in all it was a very informative and worthwhile session. Hopefully the event will be repeated next year.
PROSTATE CANCER SUPPORT FEDERATION
The Federation's First Annual General Meeting was held on 25 April at the Stoke-on-Trent campus of Staffordshire University. Few would rate Stoke amongst England's fairest cities and the dreary, rainy trudge through drab streets from the railway station to the campus on 25 April would have won it no converts. However the Federation had found a leafy corner for their AGM and the facilities there were quite adequate. As in London a year ago there was a full programme lasting the whole day and the AGM took up only the hour after lunch. However, disregarding the chronological sequence, it is the Federation AGM that will be reported on. John Dwyer, the retiring chairman, was in the chair. On membership matters he reported that 40 patient groups had now joined the Federation, an increase of five over the year. Organisations in membership were down from four to three - the Prostate Research Foundation had joined whilst the Prostate Cancer Charity and Macmillan had allowed their memberships to lapse - possibly they disagreed with the stance taken by the Federation in discussions concerning Prostate Cancer Risk Management. Organisational member Prostate UK gave £2500 in financial support which funded the Small Grant Scheme giving grants of up to a maximum of £250 to member patient groups (Prospect won one such grant to update and improve our website). In the coming year they have promised £5000 in quarterly instalments of £1250 with £500 the maximum to any one group. However local groups which support Prostate UK's "Pants in the Park" fund raising initiative in their area will receive a 25% share of funds raised. The following officers of the Federation were appointed: Sandy Tyndale-Biscoe Chairman
Hugh Gunn Treasurer
Mike Lockett Secretary
Roger Bacon Trustee (also Editor Newsletter)
Robert Banner Trustee
John Dwyer Trustee (also past Chairman)
Graham Fulford Trustee
Keith Hobby Trustee
David Smith Trustee
No voting was necessary as all the above were elected unopposed. It was reported that the Federation Helpline was operational. In response to a questioner it was confirmed that callers would be generally referred to their local support group. A questioner enquired about membership fees. In spite of the fact that at the Meeting last year in London a sub-committee had been appointed to make recommendations to this AGM the platform appeared to be unprepared. A proposal was then forthcoming that patient group members should pay each year £1 for each person who was in membership of that group up to a maximum of £100. This proposal was accepted without much debate. From the point of view of patient groups this modest levy was probably as good as they could have hoped for but there was no evidence that the Federation had gone through a proper budgetary analysis and that this income would be sufficient for their needs. Perhaps at this stage they were satisfied that the principle of a charge on patient groups had been established. The remainder of the day's programme was taken up with these papers:
"The role of the media in advocacy for prostate cancer" by Dr.Thomas Stuttaford. (G.P. and formerly an M.P. for Norwich)
"Uncertainties about treatment of prostate cancer" by Ms. Emma Halls (Prostate Research Federation) and Lester Firkins (James Lind Alliance)
"Developments in Translational Research in prostate cancer" by Professor Noel Clark (CRC Paterson Institute, Christie Hospital, Manchester)
"Developments in Therapy for prostate cancer" by Professor Nick James, CRUK, Institute for Cancer Studies, University of Birmingham
"The role of stem cells in prostate cancer treatment" by Professor Norman Maitland, YCR Cancer Research Unit, University of York.
Unfortunately space does not permit a report on each of these papers. However some of them are covered in the edition of "Prospect Matters" which accompanies this Newsletter and others may be included in later editions of "Prospect Matters". It is to be noted that Dr.Stuttaford, himself a prostate cancer sufferer, has taken on the role of Political Liaison for the Federation. The James Lind Alliance is aiming to set the priorities for research into prostate cancer that will be of most benefit to patients and clinicians. The next AGM is booked for 24 April 2010 at Penny Brohn Cancer Care, Bristol. This date is at present only provisional.
RUN FOR THE FUTURE This will take place on The Downs, Bristol on Sunday, 20 September. Prospect has again been invited to take blood samples for PSA Tests. Anybody willing to help on the day please ring the Newsletter Editor. INFORMATION PRESCRIPTIONS The Department of Health proposed that "services give all people with long-term health and social care needs and their carers an `information prescription"'. These will be a source of key information on services and care enabling patients to feel more in control and better able to manage their condition and maintain their independence. If you have Internet access you can learn more from "www.informationprescription.info". CHARITABLE GIVING THE WAITROSE WAY Our local branch of Waitrose has decided to give £1000 a month to local charities. Their customers have been invited to nominate the charities they would like to see supported. Every month Waitrose choose three of the nominated charities to share the £1000. Near the exit they place three large plastic containers, one for each of the chosen charities and above each container is the name of the charity and a brief description of their charitable work. During the month any customer who makes any purchases in the supermarket is entitled to collect a green plastic counter at the checkout and put it in the container of the charity they favour. At the end of the month the counters are counted and the £1000 is split between the charities in proportion to the number of counters in their container as a per centage of the total number of counters used. From Waitrose point of view the idea is a good one - their customers are reminded each visit that the store is being generous and, at the month end, the money is allocated in accordance with the wishes of those who shop there. Someone nominated Prospect. As the month progressed it became evident that Prospect was doing well. When the month came to an end, and the count was made and the sums done, Prospect was awarded £540 which was more than our two rival charities put together. In due course our Chairman went to the little ceremony when the cheques were presented and was given the opportunity to express our thanks and to tell those present what the money would be spent on. We all should feel encouraged that a charity which directly benefits men only received the level of support it did. Perhaps we should give more attention to fund raising - any suggestions? PROSTATE CANCER RISK MANANGEMENT With this Newsletter and the other documents in the envelope you should receive a printed (on both sides) Federation infosheet on this subject. This represents the result of the Federation's first attempt to make changes at national level which will benefit prostate cancer sufferers - in this case the Department of Health's guidance to GP's on PSA testing (the 2002 version) which sees many men entitled to such a test turned away by their GP or otherwise dissuaded from having one. The document explains why this initiative did not succeed. The Federation is keen, even so, that their infosheet should reach as many GP's as possible and you are invited to pass it to your GP or his practice manager when you have finished with it yourself. Based on the principle that early detection offers the best chance of survival it makes persuasive reading. If you have sons who may inherit a predisposition to prostate cancer they, too, might benefit from reading it. PROSPECT'S ACCOUNTS As of the date of the AGM Prospect's Assets were as follows: Bank Account:
Current Account £2735.66 Reserve Account £3618.26 Total 9-6353.92 Prospect can anticipate approximately £150 in outstanding Members' subscriptions and possible donations and is aware that an account of £250 will soon be presented for work done updating the website. Items purchased by expenditure of capital in previous years have been written off as being of no resale value.
Income and Expenditure during the Membership Year ending 22 April 2009 were as follows:
Income
Membership Subs & Donations £798.00
Grant from the Federation 2250.00 Note 1
Bank Interest £ 18.74
Waitrose Donation £ 540.00
Total £ 1608.74 Expenditure
B T (Helpline) £ 186.00 Note 2
Website Maintenance 2125.00
Run for the Future £ 40.00 Note 3
BAWA £ 895.75 Note 4
Total £1246.75 Note 5
Notes:
1. To update the website.
2. £15.50 per month. Now increased by BT to £19.50 per month.
3P For hire of tent for the doctors taking the blood samples. All other expenditure paid for by John Miles of Bristol Rotarians.
4. For buffet and hot drinks after evening meetings.
5. In the next Membership Year there will be a Membership Fee of the Federation to pay of approximately £50. Public Liabilty Insurance becomes necessary (£420.00 for a calendar year) whenever the Group actively participates in a public event. This was last paid in March 2008 and will need to be paid again during 2009.
|
