Saturday, 6 November 2010

Well I have no surgery date to report, but Addenbrookes have been in touch by e mail, phone and letter all in just six days! I am trying to get the ball rolling on some changes at our local hospital in Carlisle, so I have written the following letter to the local newspaper. We deserve better than what we have in Cumbria, and it's not going to change unless we change it.

Dear Editor........

'It came as no surprise to me, when reading about the recent 'Cancer Breast Screening' fiasco in Carlisle, where many women had been wrongly diagnosed. I was diagnosed with Prostate Cancer in June this year at Carlisle Infirmary. It came as a great shock, but I was reassured that because it was Cancer, there were so many things being put in place to help me, and that I had nothing to worry about. How further from the truth this turned out to be. I became part of a process that didn't seem to have anyone actually leading it. First someone forgot to give me my MRI results! I thought nothing of it, mistakes happen! Then, when I went to hear the outcome of my MDT meeting, (which is the meeting where your case is discussed by a team of experts), not only were my notes and scans missing, nobody who was at the meeting was available to talk to me. When I went to see the Oncologist, she didn't seem sure how to operate the machine which showed my MRI scan and the guy who did my bone scan left me worried to death by his whole attitude. Because the grade of cancer was high, and I was extremely worried about lack of progress, I first started to send e mails to various departments to try and get information. Having got no reply from anyone I tried letters which got the same negative results. I wrote a very polite reply to my consultant to try and find out where my case was up to and why nobody was replying to me. The next thing I knew, without telling me, he transferred my case to another consultant! After that, there was only one thing left to do, I wrote to PALS (Patient Advice & Liaison Services). They have one in every hospital to help patients who have problems with the system. They also, and incredibly, just did not reply! I could not believe that! Phone calls to anywhere in the hospital were always met by voice mail and I was now starting to feel as if I was in a very desperate situation.
I was lucky, because I had read in a National Newspaper that you can ask to be treated at a hospital anywhere in the UK. I had also researched the team at Addenbrookes near Cambridge, who are world renowned for their research and treatment of Prostate Cancer. Having asked for a referral there, I went down last week and what a difference. I felt for the first time since being diagnosed that someone actually cared about me. I spent the whole day there, meeting the consultant and having the pre surgery check over. Since coming home, I have emailed them twice and received a response within an hour. Every time I have phoned, a person has answered my call. They wrote to me within days giving me a run down of exactly what was going to happen next. Perhaps the most alarming part was that when the team at Addenbrookes looked at my MRI scan and biopsy slides, taken in Carlisle, they did not agree with the diagnosis. Carlisle had said the Cancer was contained when it wasn't, and they said it was a moderate grade when it turned out to be a high grade 8. They are all decent well meaning people working in the Carlisle Unit but they need to visit Addenbrookes to see how different the 'patient experience' is. After being referred to Addenbrookes, and about 3 months after writing to PALS in Carlisle, PALS called me last week to ask me if I was 'all sorted now'! If you get cancer and you live in Cumbria, manage your own case, because nobody else is going to!'

Surgery has been promised before the month end and I am happy with that. It will also mean having radiotherapy, probably in January for 33 consecutive days. I could have this in Carlisle, but seriously, would you? It will mean living down near Cambridge for that time but when it is your life, you just can't take chances, can you? 

My daughter Sasha is 29 today....Happy Birthday my girl, and thanks for all your help and support over the last few months, you have been an absolute gem of a person. Take a blow and make a wish!

Oh I nearly forgot.....I passed my minibus test on Wednesday; people's lives are in my hands!

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