The PCUK volunteers are a pleasant, patient and passionate lot. They have to be with some of the places they visit and the people that they talk to. However, press the right or maybe I should have said wrong button and they can get very passionate. Think of being attacked by a cuddly penguin and you are on the right track.

We had another Hub meeting, my second one at the offices of PCUK in London. Before the meeting however the storm clouds were gathering. For whatever reason the time of the meeting had to be changed a couple of times. Nothing too drastic – just starting half an hour later, then finishing half an hour earlier and then finally finishing half an hour earlier. This was all over about a week. Personally, it was not a problem for me but for one of the guys, who would now have to leave early, it had pressed the wrong buttons and led to this email rebuke to PCUK,

        “….This clash of times has not arisen as consequence of my having prioritised my client over the Hub meeting but rather as a direct consequence of, sadly, PCUK’s inefficiency and could have so easily been avoided had PCUK advised me of the correct times of the meeting when, having heard nothing from yourselves, I emailed for details on 4^th January…”

He was just warming up however

         “……I find this very, very disappointing and a little annoying, {as I take volunteering and our cause very seriously}  and, I have to say, it smacks of poor planning and a           complete lack of effective communication….

 Not run out of steam yet,

         “…..In my book, open communication and robust planning go an awful long way in capitalising on effort and energy and securing positive outcomes and avoids the unnecessary waste of time and effort that would, otherwise, be the case as that energy, otherwise, needlessly haemorrhages and proves unproductive….”

This time around however the number of volunteers, twenty four, was about the same as last time but the mix was very different. There were four women, three of whom were black and four black men. I know there are more black and female volunteers, but it was great to see a much better mix. We were arranged in a semi-circle and just said our names rather than any other information like what got us into volunteering or geographical location. Unlike the last meeting I got there nice and early and located myself right behind the food. Well someone had to sit there.

The meeting kicked off with PCUK telling us how the year had gone so far. They had delivered one thousand activities up from seven hundred the year before, a massive increase. Activities are anything that engages volunteers. These are the collections, awareness talks, football match attendances, stands, sponsored runs/walks etc. They have a number of large companies in their sights, one of the most prized is a collaboration with John Lewis. John Lewis are looking at training one thousand of their health champions who are distributed across the country, representing the head offices, John Lewis stores and Waitrose branches. The John Lewis health champions could be a trailblazer that sets the marks for other companies to follow.

The first gripe of the day came about from a volunteer pointing out that they are a little dismayed that some of the events or companies that they had collected money and cheques from were not being formally appreciated or recognised by PCUK. Additionally, it would be very helpful if there was some sort of giant presentation cheque that could be shared amongst the volunteers for photo opportunities. I have to say that I had not experienced that myself as I have only done one collection and they had printed the cheques themselves. Regarding official recognition he was coming from two angles. One which is the general common curtesy point of view which is absolutely vital. These people or organisations, no matter how big or small they are have taken their time and effort to raise funds and should be thanked personally from PCUK. The second point which I have to say is more important to me and has made me think twice about collecting money. When a cheque is put into a bank or money handed over if it is not acknowledged by PCUK it could put the volunteer under suspicion. He said he was lucky that he knew the organisers very well, so the lack of acknowledgment from PCUK was not seen as suspicious, but it did leave a nasty taste in his mouth.

We then had a very interesting talk from the Change Delivery Team. Their role is the campaigning and influencing arm of PCUK. They liaise at the government level and work across all nations. For example they are the people who successfully lobbied to get a      da Vinci robotic surgery machine installed in Northern Ireland as those patients had to travel to Cambridge for appointments. The main pillars of their work are: Prevention, Diagnosis, Treatment and Support.

There were a couple of points that really caught my ear. They are championing the widespread use of multi parametric MRI scans (mpMRI). These are scanners which offer superior quality imaging which means fewer men should have to undergo a biopsy.

Then the speaker, innocently, pressed one of the days hot button. It’s probably fair to say he hit it with a fairground hammer hoping to win the big cuddly toy, then hit it with an adorable puppy and then swallowed it.

“The PSA is not an accurate test”, He said.

A fairly innocuous statement. One I have used in all of my talks and across this blog.

Simon one of the longer standing volunteers, who I would later find out is also a GP, had just had an industrial, New Years eve worthy firework set off under his chair. Simon stopped the presentation in its tracks.

“No, I have to stop you there, this really infuriates me when I hear this. It’s s personal bug-bear of mine. The PSA test is accurate. It is a very accurate test, it is just how it is interpreted. It also does not help that the head of NICE says the same thing on national television. It has put us back years”

Not a happy bunny.

He said some more and the presenter actually apologised and said he would revise how he said it from now on. I am a bit vague on the rest because my stomach was growling – having the food directly behind you is both a blessing and a curse. I whispered to the guy next to me “I dare you to get up and announce to the group that you believe the PSA test is not accurate”. We both had a good giggle at that. Going forward I will change how I describe the PSA test.

The other point that really made me think was when the presenter mentioned that they were trying to standardise the support of patients post treatment. He mentioned a term, which I didn’t realise existed, called Decision Regret (DR). This is where patients later regret the decision they made to cure their prostate cancer.  Its something I have pondered on off and on for a while. It’s something I will talk about in more detail another time.

If the email was a bullet and the announcement that the PSA test is not accurate was a hand grenade, the heavy artillery was just trundling slowly up the hill and being rolled into place.

PCUK said that they have received a number of complaints from organisers (these are the people/companies they we are sent out to see). These complaints, or the main complaint is that some volunteers do not pronounce the word prostate properly. Now I will put my hand up and say I have pronounced it incorrectly a number of times, but I have suffered far worse trying to pronounce prostatitis, which is where the prostate is infected. The other complaint was that some volunteers are not sticking to the key messages.

Bomb loaded and was about to be fired into a densely populated area.

“Due to a number of inaccuracies and complaints from organisers, every volunteer needs to undertake refresher training or they will be disqualified from representing PCUK”

And so the bomb landed.

Kabooooom!

To be fair it wasn’t a riot, mass walkout or murderous disapproval. You know when someone just beats you to something and you just sit back and see how it pans out. The initial reaction was shock – was that really just said? Then the noises began, thick and fast, from the more vocal of the group. No-one was against refresher training at all, it was mainly that the message had just been delivered really terribly. Some volunteers said they would have to re-consider volunteering if that was PCUK’s attitude. We eventually got passed it when we all agreed it was not the content of the message but it’s delivery. We left it saying we would look at key messages at the next hub meeting.

The speaker announced that this was a great place to break for food. I am not ashamed to say that I had two sandwiches on my plate before the sentence was finished. I started to mingle with the locals. Triple D (Dangerous Driving Dave) was there but I had not sat next to him as he was on the other side of the food sorry room. I crossed paths with one of the two women I had never met before, called Esther. She had seemed deep in thought for most of the meeting and had not said a single word other than her name. We exchanged greetings and I asked her why she is volunteering with PCUK. She gave me a three minute summary about why she is a volunteer. She left me shaking my head in disbelief and lost for words. I asked her if she had told her story and it was clear it was still raw. She said she is not comfortable talking in front of crowds. I paused for a moment and asked her if she would like to tell her story on my blog. She said she would love to.

I hope to talk to her very soon and at the same time I need to prepare myself for the full story, it really will be something. Simon would also love to be interviewed. That will also be something to look forward to.

We then had a fundraising update and the end of another Hub meeting.