Summary of the negative themes and subthemes
| Themes | Subthemes | Number of comments | Quotes (Gender, age bracket, type of cancer) |
| Not feeling confident or secure within the system | Poor care | 372 | Postop I could hear the recovery nurses talking about my pain relief. I was in agony and they did not believe me as I had had a lot of analgesia. I left recovery in agony. Eventually I got oramorph on the ward and that took it away. I felt the ward staff inexperienced in dealing with the issues of cancer and very few made eye contact when I asked questions about it. Female, 36–50, breast cancer |
| Inadequate aftercare | 262 | When I was discharged from ward, I could have been going home with a finger bandage. No instructions as to care or further help was given. Female, 51–65, urological cancer | |
| Difficulty getting into the system | 200 | Looking back I have concerns about my GP practice. They took far too long and it took far too many visits for me to be referred for a scan. I had testicular cancer. The issue seemed to be a view that there was no need to physically examine the testicle. It seems when it was examined, the need for an immediate referral was very obvious. Had I been clinically examined earlier, I would have been referred for a scan much earlier. The doctor who eventually did refer me to radiology made a very odd passing comment. I complained about pain. After the examination this doctor said that I didn't seem to react much if the area was tender and painful. It's odd that I was questioned for trying be stoic and not engage in histrionics. Male, 36–50, urological cancer | |
| Inconsistent or inappropriate information | 158 | I received conflicting and confusing information from (number removed) different doctors and there was no support and I felt each doctor just wanted me out as quickly as possible. Female, 51–65, tumour group not recorded | |
| Lack of faith in the system | 158 | You're just left between appointments with no follow-up scans or nothing. Unless you have had cancer, people don't understand how important it is. Female, 51–65, breast cancer | |
| Inadequate contact | 50 | Very little contact with oncology doctor during or after treatment. Male, 76 and over, prostate cancer | |
| Total | 1200 | ||
| Not feeling that individual needs were met | Lack of Information | 407 | The effects of radiotherapy and chemo however should have been more emphasised. I thought I was going to die after treatment, I suffered horrendous pain all over. Male, 51–65, head and neck cancer |
| Poor communication | 345 | Most of the staff were approachable. The consultant was offhand and dismissive, especially when explaining the side effects—discussion with fellow patients revealed that this was a common issue. The consultant did not fully explain procedures nor attempt to follow-up. The impression given was that they were busy and only had a short time to consult. Female, 51–65, breast cancer | |
| Poor emotional support and responsiveness | 270 | It's so important for nurses to be able to offer emotional support. I feel that the nurses were always so busy and quite distant at (name removed). Often conversations about my care at bedside but didn't look at me/involve me. Female, 51–65, colorectal/lower gastrointestinal cancer | |
| Involvement and choice | 97 | Having said I wanted to know everything I thought I would be treated by doctors as a partner in my care. Instead I felt like a passive battleground with the doctors on one side and the disease on the other. Female, 51–65, haematological cancer | |
| Specific and unusual circumstances | 34 | I had to convince my GP for the test when my (family members removed) died from it. They felt I was too young at (age removed) to be tested, despite being a family history of prostate cancer. Male, 51–65, prostate cancer | |
| Family | 21 | Although my treatment in hospital was excellent and I was kept very well informed, my family found it very difficult to find anyone to give them information about me. Male, 76 and over, urological cancer | |
| Total | 1174 | ||
| Structures | Unsuitable or uncomfortable environment | 145 | I found the care in unit (name removed) very good, I found the general ward to be chaotic, too busy, very poorly maintained physical environment, very poor toilet facilities, real dignity issues for patients with colorectal cancer. Female, 36–50, colorectal/lower gastrointestinal cancer |
| Staffing levels | 143 | During the day the ward was well staffed with qualified cancer nurses, although they were under severe pressure at times. At night, staffing was inadequate to cope with the demands of very ill patients and at times treatment and medication were badly delayed due to emergencies. Female, 66–75, haematological cancer | |
| Privacy | 67 | When doctors attend your bed to tell you vital and personal and private information, closing the curtain around you is not enough privacy. Male, 51–65, upper gastrointestinal cancer | |
| Transport | 49 | The only thing was chemotherapy treatment. I had to be at the hospital by 20:00 each week and to get there I had to arrange a taxi and was told this would be repaid to me if I kept the receipts. When I claimed I was told this was no longer the case. Male, 51–65, lung cancer | |
| Total | 404 | ||
| Processes | Waits and delays | 454 | My original operation was cancelled several times at (after preop procedures) and delayed. Operation was much more extensive as a result of delays and eventually carried out almost 5 months after discovery of cancer. Male, 66–75, colorectal/lower gastrointestinal cancer |
| Ineffective and unreliable processes (organisational systems) | 289 | The return of my cancer was picked up at a routine scan and I was told I would likely need further surgery. It is now 6 months later and I still have not had it and have no further date. This has mainly been caused by a delay in communication between local and city hospitals and by different departments within the same hospital failing to communicate with each other. Again during all this time no one has discussed or confirmed it is cancer. Female, 36–50, urological cancer | |
| Fragmented care | 276 | Diagnosis, treatment and surgery was done over four separate hospitals and venues. Due to this, information was sometimes missed out or assumed given by someone else. Due to this situation it was difficult for me to know who to contact when I needed advice. Female, 51–65, breast cancer | |
| Total | 1019 |