Cancer Care in the UK ~ Structures and People

This week I’m speaking to the All-Party Parliamentary Group on Cancer at Portcullis House. The meeting will concentrate on issues around improving patient experience and safety by identifying priorities ensuring that people have a positive experience of care, caring for people in a safe environment and protecting them from avoidable harm. Below is what I am going to say to them in the short time allotted to me.

As it turned out, my care from the beginning to the present has been good to excellent. It started with my GP, Barbara Frosh, who insisted I have a PSA test because I had persistent back pain, I think with the words: “When a man your age has back pain that wont’ go away I want him to get a PSA test.” I let the “man your age” pass. She was aware of the ambiguity of a PSA test, but was also aware that there were two kinds of PSA tests: the one we all know about which should be low and the “Free PSA” which should be high. It was the combination of these numbers that made Dr. Frosh send me to the Royal Free. I was lucky. I’ve spoken to men whose GPs will not even consider a PSA test.

My next stop was urology at the Royal Free where a series of PSA tests led to a prostate biopsy. My urologist, Ms Smith, was great. She explained everything in detail, and when it came time for a biopsy she talked me through the procedure and gave me written material as well. What she did not do, refused to do, was advise me during the months I saw her. I made the decision to proceed with a biopsy with my GP and based it on my series of PSA numbers. I have spoken to men who never knew what the numbers meant and received no assistance in understanding them. During the procedure itself, Ms Smith talked me through it beginning with local anaesthetic and kept asking about my pain level. I have spoken to men who had biopsies with no local, little sensitivity to the pain they endured as a result and had no clue what was happening to them.

At this point, things heat up. I met with my oncology specialist nurse, David Cullen, who was assigned my case. His first task was telling me I had cancer. He did so buy looking me straight in the eyes and gently but straightforwardly saying the words no one wants to hear. My first and immediate response was to ask what my Gleason Score was. As I sat with David he let me absorb the news and then began to tell me what was going to happen and handed me a packet of information. This included everything from dietary suggestions to numbers to call for emotional counselling. I have spoken to men who received their cancer news over the phone or in a letter and were given very little information. Many didn’t even know what a Gleason Score was when they got the news.

Next I met with my medial Team: Specialist Nurse, David Cullen; Oncologist Ms Pigott; Urologist Ms Smith. It was with this team I made decisions about the way forward. In a sense, three heads were better than one. I have spoken to men who had no such team and did not have a specialist nurse assigned to them.

Here I need to also say that my wife was present at these important appointments. Early on I was told she was welcome, and that she was. During both meetings, first with David and then the Team, people made eye contact with her and encouraged her to ask questions. I have spoken to men who did not know their wife or partner or family member or friend could be present and had to face these life changing moments alone. They were also faced with remembering the details of what can be frightening meetings on their own.

After meeting with the Team, I met with David for a year of blood tests and at the point I decided, with his encouragement, to have treatment he gave me written material about the various treatments and fixed appointments for me to met with the consultants and surgeons who would conduct those treatments. The assessment from my Team and these appointments were vital in helping me make the decision about which treatment was best for me. And I was informed in each appointment about the consequences of treatments, also vitally important. I have spoken to men who simply were not given information about treatments and consequences and did not speak to the various consultants.

I opted for surgery and I was transferred to University College London Hospitals where radical prostatectomy’s are done. But even though I was then in the hands of UCLH, David was always available to me. After surgery I was released back to Royal Free for post-op care. My experience at UCLH went well and the communication between the two hospitals was good, though not perfect. And again, the surgical team at UCLH was very good at informing me every step along the way about what was happening and what was going to happen. This was done through written materials and conversations. After the operation I was both impressed and moved by the care the nurses gave me.

I am now back with David at the Royal Free and my care continues to be excellent. David has handled difficult and potentially embarrassing issues well. I cannot over emphasise the importance of this relationship, and how good David is. He is, in reality, taking care of me. For the first year after surgery I have four PSA tests and appointments with David, in the second year two tests and appointments, and then one test a year for the rest of my life. At each of these appointments, after telling me the results of my PSA test, David asks me in detail about my progress in dealing with the tricky business of coping with the life changing consequences of my surgery. When I have described this set-up and relationship with other men they are amazed. They are, to a certain degree, left to taking care of themselves.

Eventually I will be turned back to my GP who thankfully knows how important it is that I have a PSA test every year. She knows that while PSA’s are unreliable before surgery, they are vitally important after surgery. I have spoken to men who say their GP’s are not aware of the importance PSA’s take on after surgery, which could literally be fatal.

Now I realise that listening to all this is less than exciting - no laughs and no tears. But here is what I conclude from my experience.

First, my care was good to excellent because there was an organisational structure in place that allowed movement: from GP to hospital; from departments within the hospital - urology to oncology and back again; between hospitals – from diagnoses to treatment and back again to post-op care; and eventually from hospital to GP. Any weakness or break in those links and my care would have been harmed, the consequences to my physical and emotional well-being being significant.

Second, any organisational structure is only as good as the people that run it. About three months after my surgery I was back sitting with David at the Royal Free and I told him that the movement from one hospital to the other and back again went very well. He said this: "It only worked because I kept on top of it all the time and because I have been here a long time." His points were obvious, but nonetheless important. People need to be knowledgeable, skilled, dedicated and sensitivity to patients physical and emotional well-being. They need to “keep on top of things.” And they need time to create the structures and develop the relationships with colleagues that makes it all work. Short-termism and unhealthy competition makes all that more difficult, and it is the patients who suffer.

Copyright © 2013 Dale Rominger