Monday, 13 September 2010
Look, sometimes it just has to be about Cancer, and today I would like to share with you a letter that I wrote to my Consultant. In my experience, if you live in Cumbria and you get Cancer, it is a very different experience to the one you will get, living in London. You should worry, because you will have to take the lead in what happens to you. I would be interested to hear from anyone who is having a better, similar or even worse 'customer experience' than mine, (firstname.lastname@example.org) as we need to make sure that others, who might not have the will to go through this process, are looked after and kept informed in a far more understanding way.
X xxxxxx xxxxxxx
9th August 2010
Dear Mr Jamshed Bashir,
I am writing to you because I am extremely worried and even fearful regarding my progress, through a system that I am still trying to understand. As you know, I was diagnosed with Prostate Cancer on 18th June this year. Some cells were 3 and others 4 making a Gleason score of 7. However grade 5 cells were found, the most aggressive. I was grateful to find after the MRI and Bone Scan that the cancer appears to be confined within the Prostate Gland.
I am mainly worried because I don’t know whom, if anyone is steering my journey as to what happens next. I have not seen or heard from you since 18th June and my doctor has no idea as to what is happening, except what I tell her!
My worries are further compounded by some events over the past few months.
As you can appreciate, I had to take in a lot of information after you told me that I had cancer on 18th June, but I do remember being told two things by you…….
1. That I would have an MRI scan; the results would be fed back to me within around 7 to 10 days after the MDT meeting.
It took over 4 weeks to get this feedback, and only then because I phoned and got it from a very helpful McMillan Nurse. Apparently I should have been called in but nobody picked up on this, so I was simply forgotten! I was frantic and ill with worry during this time, and all needlessly so! I thought that I was dying!
2. That there would be an MDT meeting within a couple of weeks of my MRI scan, and then I would be called in shortly after that to be told what the recommended course of action would be.
It was about a month until I was called in for this feedback, and incredibly, my notes were missing and nobody who had been on the MDT meeting was available. The Doctor who I saw was helpful and reassuring but no sign of my MRI scan or bone scan, though I did get the result of the bone scan.
My patient experience so far has been awful. Everyone I meet is so very nice, but I feel that I am in a system where nobody has any ownership of my case. I have now seen the Oncologist and decided on surgery as the best option. I have asked for a referral to Addenbrookes, mainly for family reasons and not having any family up here for after care. She is in the process of doing this for me.
If my experience since 18th June is normal, and what has happened to me is exactly as it was meant to be, then I think that there is serious work to be done in improving communication with cancer patients, and that PALS should perhaps take a serious look at this.
I would just like to ask, is there is an individual person who is monitoring, and is responsible for what is happening to me? Because I just feel that I am in a system, a river of people, which flows in one direction, with the hope that everyone eventually reaches the sea, but God help you if you get stuck, because nobody is looking?