Registered Charity No 1108540

The Chestnut appeal has recently purchased two new pieces of equipment. A high definition camera stack,

which will be used to aid surgeons at Derriford with their pioneering keyhole surgery and an ultrasound scanner. Chestnut Appeal manager, Lesley-Ann Simpson says, “It’s brilliant that we were able to buy these pieces of kit.

At £70,000 and £33,000 respectively, they’re not cheap and I would like to thank everyone who continues to support the charity and helping us to make such a marked difference”.  Patients from all over the region will be able to make use of this treatment, which previously, has not been available in the South West.

THE COKER FAMILY SHOW THEIR GENEROSITY ONCE AGAIN!

Thanks must go once again to the Coker family for two further donations.

First of all, Liz Bennett, daughter of Roy and Marguerite Coker, donated the generous amount of £346 raised by donations in lieu of presents at her 40th Birthday Party.

Secondly for money won from a Charity duck race held on the river Sid, where Marguerite picked             NEDPSA. to be the Charity to receive £350.00 in winnings.

What a great family.

FOUR GOLD MEDALS FOR JOHN

John Perratt proved that he is still a top performer and a force to be reckoned with, at the South west Veterans Track and Field Championships.

John won gold medals in all four events he entered, setting new championship records in two of them. In his first event he reduced the championship record for the 500m, then went on to win the 800m, before going on to win the 400m, and finally reducing the championship record for the 1500m from 5:48.9 to 5:35.5

During the course of the championships, John was also presented with the award for the winner of the South west Veterans’  AC Road Racing Grand Prix for the best average age graded per cent over four races.

 You can read John’s story on the members input page John is also our newsletter editor, well he has to do something when he is not on the hoof.

Following another very successful’ Music for Life’ event in Beer, a cheque for £100 was presented to NEDPSA. The 12 hour music festival, held on June 20, raised more than £6,300 for cancer charity FORCE and Children's Hospice South West. Various other local charities, including NEDPSA, Puffins Playschool, Beer Primary School PTFA and Beer WI, also benefited from donations collected on the day. NEDPSA were present at the event with an awareness raising stall manned by Jennifer and David Jannaway. Plans are already afoot for next year's festival, which will be held on Saturday, July 3. Annie Boalch, chairman of the event, said many bands want to play again and others have inquired about joining in with this fabulous event.

Very many thanks to Annie and her hard working committee.

PROMOTING PATIENT POWER

This was the title given to a workshop for members of the Prostate I Cancer Support Federation with a view to consolidating the positive ' response to the Inaugural Conference earlier this year. It was sponsored (very handsomely) by the Graham Fulford Trust and attracted ^an attendance of around 50 (including some ladies) representing 20 or 'so support groups as well as Prostate UK and The Prostate Cancer Charity.

The proposed agenda covered a good deal more than the title suggested so Mervyn Reed and I offered to represent NEDPSA at the meeting. Mervyn is used to early morning starts but it was a bit of a culture shock for me but somehow we managed to get to Leamington Spa for the 10 O'clock start.

The agenda in fact was amended before we got underway and we didn't stick to it either and so in some ways it wasn't what we expected. It was however an extremely interesting day. We were not represented at the Launch of the Federation earlier in the year but at that meeting the first Honorary Officers and Trustees were elected with a mandate to plot the way forward with a further sub group to look at membership subscriptions and a budget.

Clearly a lot of work has been done so far although one could feel an undertone of unease emanating from some of the groups. The prospect of membership fees of £50 per group plus £1 a head for each member was off putting for some, whereas others were nervous about losing their autonomy and identities. The first year includes free membership but it will be interesting to see how many in fact sign up next year when these fees become a reality.

After the initial welcome and report backs we were broken up into 5 groups and each group was asked to come up with what we, as a group, thought were the 10 key objectives for the Federation. That was fun as, in my group, there was one chap who wouldn't keep quiet and effectively prevented any discussion on the matter. That was a pity because he was obviously very dedicated and an enthusiastic member of a very successful and well organised support group. It did however have the effect of creating a bond between the rest of us as we all ganged up to try and silence him, albeit unsuccessfully. When we got together again to report back a list of 28 key objectives were produced and recorded but nothing earth shattering and most were pretty obvious. It was nevertheless fascinating to hear what others considered to be important.

The lunch session gave all the delegates an opportunity to mingle, and learn about what the other groups were aiming at and how they were going about it. That was good - so was the food.

After lunch we were meant to have a presentation by the Graham Ful-ford Trust, an update on the latest treatments from Prof. Nicholas James and then a panel session on 'Getting Patients' Voices Heard' -the sole item that had any link to the 'theme' of the workshop. As it turned out someone had forgotten to tell Prof. James either the date, venue or time of his talk and so he didn't make an appearance and the panel session, squashed in at the end, provoked a general discussion that was good in parts, spoilt perhaps by too much speechmaking.

That leaves us with the Graham Fulford Trust. Graham, the man himself was there. He is an extraordinary chap. As we arrived in the morning he was there and everywhere, pouring out the tea, organising the biscuits, laying out the chairs and welcoming the delegates. His enthusiasm is infectious and in many ways he dominated the whole day. Coming from an accounting background he didn't look like your average numbers man, dressed as he and his team were in their yellow, Graham Fulford Trust, Manchester Marathon T shirts.

The Trust was established in 2004 after Graham lost a close friend, aged 58, to prostate cancer. Since then they have been very active with fundraising, primarily from golf days, runs and similar activities. They have in this time donated 3 portable bladder scanners round the country at a cost of £21 000 and paid for PSA tests totalling more than £60 000. Graham has now committed to give his full support to the Federation, not so much financially, but rather working with them - and that has got to be good news for the Federation.

The session after lunch in fact started with an address by David Baxter-Smith, who is also a larger than life personality. He qualified as a surgeon at Trinity College, Dublin and simultaneously with his medical studies picked up an M.A. in History and Fine Arts. After lecturing in anatomy at the University of Birmingham, he worked in various teaching hospitals in the Midlands, joining Kidderminster General Hospital initially as a general surgeon but later specialising in urology. Whilst at the KGH he was one of the founders of the Kidderminster Support Group, currently believed to be the largest in the country with over 500 members. Since retiring in 2005 he spends much of his time speaking to men's groups about health awareness and prostate cancer in particular, encouraging all men over the age of 45 to have a PSA blood test. He also travels the country with Graham arranging for men to , have this test.

His address was spell binding as he gave us details of his experiences with PSA testing from the other side of the fence. He dealt with all the issues relating to the test and then spoke at length of the procedures at the bulk testing sessions carried out by the Kidderminster Group and the Graham Fulford Trust. Counselling is given at the meeting itself along with leaflets explaining all the implications of the test. Everyone tested then receives a letter from him that provides his home telephone number in case they have any queries about the result!

They have together carried out over 6 000 tests travelling as far as Cornwall, Kent, Hampshire, London and the Lake District in addition of course to the Midlands. From these they have positively identified 118 cancers (as well as an aortic aneurism, and cases of bladder cancer and chordoma). This figure is surprisingly low but does not include those who were referred to their GP for further investigation. Identified cases peaked amongst the 65 to 69 age bracket but a few were also picked up in the 45 to 49 group. A feature of the tests was the large number of above normal readings that turned out benign. This, the detractors will say, caused unnecessary distress. I prefer to think that they were in fact reassured and hopefully those men concerned will continue to monitor their PSA as a result.

Details were handed out and discussed, explaining how we could organise such a bulk testing ourselves in conjunction with the Graham Fulford Trust - food for thought, indeed.

In many ways the day did not address many of the issues that were set out in the agenda. In retrospect that was an impossibility anyway but it was certainly a worthwhile trip, we made new connections and Mervyn was great company on the long journey there and back.

John Perratt.

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