I sat there surrounded on all sides by the power behind PCUK. The massive halogen light on the desk was shining relentlessly and furiously in my face, reducing my eye pupils to mere pinpricks. I could not give bodily detail or numbers to my captures, just the sense of their urgency. I could almost taste the state cigarette breath of the guy directly behind me as he breathed too menacingly close. They wanted answers and he was going to get them.
Maria from PCUK had asked me if I was up to attending to their next Support and Influencing Committee meeting in late October. They wanted a volunteer with a personal experience of prostate cancer to come and give them a “patient’s point of view” of the services they are providing. Of course, I only asked them when and where.
Maria then called me for a talk and a few days later she arranged for me to tell my story to the Support and Influencing Director. I was beginning to worry if they thought there was a chance of little olde me going rouge in their meeting.
How could they possible think that??
The Support and Influencing Committee is a sub-group of the Prostate Cancer UK Board. It is made up of five Trustees of Prostate Cancer UK, plus the Chief Executive, Director of Support & Influencing, Deputy Director of Support & Influencing and the Director of Communications at the charity. Its role is to oversee the work of Prostate Cancer UK to support men and their families living with prostate cancer – the specialist nurses and health information services. It also oversees all of our influencing work to try to improve care for men across the NHS – through campaigning, influencing the government and NHS, educating health professionals and raising awareness. The Committee meets every quarter.
So here are their questions and my answers,
Q1: What would you say we should redouble our efforts on or change to really make a difference?
A: The focus should be more on normal people talking about prostate cancer rather than celebrities; people do not identify with celebrities but they do identify with normal people such as ‘The Mechanic’ (He is a black mechanic that was diagnosed with PC and his way of getting people tested is to offer men a discount if they have been tested. He has received a lot of press coverage). People really appreciate honesty and openness, and this should come from normal people who have been through prostate cancer, not celebrities talking about their friends or family members.
Q2: Why do you think you were offered a PSA test by your GP? Did they say because you are black you may have an increased risk, or was that not part of the thinking?
A: It was actually a locum doctor I saw and prior to this I had not been to the doctor’s for about 5 years, I really don’t tend to go to the doctor. I booked a health check because I had just turned 50, but I wasn’t worried about prostate cancer, I was more concerned about diabetes or anaemia. I didn’t know I had a family history and I had no signs or symptoms, so this was not on my radar. The doctor was filling out forms for the other tests and just said “shall we put it on there”, “it” being the PSA test and I agreed.
Speaking to people afterwards I realise how differently my situation could have turned out; just last week someone told me their GP had discouraged them from having the PSA test saying it was painful and invasive, and others have told me their GP’s have said they don’t need to bother with it. I’ve also noticed in the groups I do that people do not want to engage with the literature, you put it down & people won’t touch it, so getting the message across is a case of hammering away. I also think it is important to recognise the differences between working with black people and working with white people, and the different approaches required.
Q3: Do you think there is any element in terms of informing women? For example I know a lot of men who have been encouraged to go to the GP by their wives.
A: Yes, definitely. I spoke at the UK Black Business Event 2 weeks ago and the people there were younger so not concerned about their own risk, but when I said “you have fathers, brothers, grandfathers” this really got through to them because they do not want to lose these people. I have also spoken to women’s groups and emphasised the importance of persuading the males in their lives to be aware of the symptoms and to visit their GP if they have any concerns. Family and friends can play a large role in encouraging people to get screened.
Q4: The NHS’s current advice for the general population is that they do not offer population screening with PSA because the evidence is that on balance more harm is done than good. The charity currently agrees with the NHS line, so we advise people to have discussions with their doctors about whether the PSA test is right for them, but we do not campaign for there to be widespread screening, and yet there are people like you that come along who have probably been saved by being screened. How do we balance that as a charity?
A: I appreciate that the PSA is not the best test and is not the most accurate, but I really can’t understand why they think more harm would be done than by not screening. I say to people they’ve got a 50% chance of having prostate cancer and it is better to find this out and start treatment as soon as possible. It is a massive lifestyle change, but the sooner it is discovered and treated, the more chance you’ve got of surviving. I definitely think there should be widespread screening.
Q5: How much did you know about prostate cancer before you went for your health check?
A: Id’ heard of it, but it was the elephant in the room. I knew that it affected black men, but I’d read the list of symptoms and none of them applied to me, so I wasn’t worried about it.
Q6: And did you hear misconceptions that were attached to it as well?
A: I’ve heard concerns from a lot of men that it will mess up their sex life and it worries me that this is what so many men focus on, when in fact they should be concentrating on the fact it is cancer and can kill you. I try to talk to people like I would need to be spoken to if I was in the audience and also emphasise that you don’t have to have any signs or symptoms. A lot of people think they are safe because they have no symptoms and they aren’t unhealthy, but this is not true. I’ve spoken to a lot of black groups and when they see me, someone who is reasonably fit and healthy, and hear my story, it brings the message home that this isn’t just for old people or white people, and lifestyle doesn’t play a major part in who is affected. I’ve also found that people who attend these meetings pass this message on to others.
Q7: Are there any resources that would be helpful when you’re doing these talks? We have our own materials, are they targeted enough for the sorts of things that you need?
A: I found the Prostate Cancer UK website to be great for the technical aspects i.e. what will happen if I take a certain treatment route, however I did struggle to find real, normal men who have had prostate cancer talking about it. I wanted to hear the experiences of someone who had gone through the journey I was about to undertake. Every journey will of course be different, but the milestones along the way are pretty much the same. This is one of the reason’s I started my blog.
Q8: How about the support that was available for your family and friends?
A: Guy’s hospital was very good in that they have various seminars that your partners can attend and they will also meet partners of other men at these seminars. However, I found that everyone’s story is different and the things that one couple might prioritise and therefore talk about can be completely different to the things that are important to the couple they are talking to, for example some men are scared of needles, some men are worried about their sex life. It feels like you’re getting a summary of someone else’s summary of their journey and it would be more helpful if someone would just say “here’s everything , take out the bits that are relevant and helpful to you”.
Q9: Did you attend any of the lifestyle exercise classes offered by the hospital to help with pelvic floor and urinary problems?
A: Yes. There are different seminars each step of the way and there are also apps, for example the NHS Squeezy app which I use and is very helpful. The only problem is the seminars are very technical and lack heart.
So that was me, the kid that attended Peckham Manor school in South London, talking to the power behind PCUK. By coincidence I paid mum a visit in the evening and debated whether I should tell her. There was a chance Judge Mum could be in attendance and the reply would be along the lines of,
”Why did they ask you?”
“Did you know what you were talking about?”
I took the chance anyway and told her. Judge Mum was nowhere to be seen and instead she said she was proud of me and smiled.
Looks like I did a good job at PCUK too, judging by the email, I received…
|From: Helen Rodgers
Sent: 22 October 2018 17:34
To: MariaSubject: Support and Influencing Committee todayHi MariaCould you please pass on the thanks of the Committee to Peter for a really excellent and thought provoking talk today. His story was very relevant to our discussions later on in the meeting and left us with a lot to talk about.I am sure I will be bumping into Peter again but in the meantime please also pass on my best wishes and thanks for all the work he is doing with us.
I don’t know if anything I said changes anything, sometimes that’s not always the point, especially anything to do with prostate cancer. This is all about getting people to listen.
Then they make their choices.