Partner diagnosed advanced PCa May 2013, Agressive tumour, spread to bone, lymph, soft tissue. On Stampede Trial. Hormone therapy arm. Withdrawn as needed radiotherapy to prostate. Radiotherapy staff great. Since diagnosis have never had any discussion of bone thinning due to disease and HT yet this is a serious and important issue. Partner needed kidney stents, communication between oncology and urology, Southmead poor. Feels as if no one is co-ordinating care so we have always had to do lots of chasing up. Partner broke arm Feb 2014. Saw oncologist. I Insisted partner be offered bone strengthening meds especially with his diagnosis. Asked for dexa scan also. No luck but agreed to bone and CT scan. Just as well as these have showed possible spread to liver and femur. Had to chase up results of scan. It all seems so impersonal. Partner did have RT to broken arm but should have a systemic approach, not wait for fractures to happen and been prescribed bone strengthening meds much earlier. Partner also has lymhoedema. Contacted hospital. Nurse took a week to reply and just told wait for scan. In meantime I found Macmillan lymphoedema service myself and had him referred. It is terrifying when it feels like incurable cancer is a do-it-yourself service on part of patient and carer, but that's how I feel. Partner's cancer likely to not respond long to HT but monitoring has revolved around PSA, not likely to be full picture for his disease, thank God we didn't wait for this to rise and pushed for the scans. Now waiting for discussion about treatment . I feel we will have to battle for everything and don't have much confidence in the service. Also, need adequate time to discuss with oncologist, especially if we want to query treatment options. If patient knows very little about their disease I consider they would be at a huge disadvantage. I just want to see a medic who is seriously up to date on advanced prostate cancer, if need be will chase up latest Trials and meds and who recognises the seriousness of my partner's diagnosis. Like many carers, this is a terifying thing to be going through. Also, need a proper considered treatment plan, options and contingency. Feels like approach is very piecemeal. Also, unless patient willing to educate themselves, they will not know about all the Trials, not just Stampede for Prostate Cancer, which again will limit options. Seriously concerned about general lack of info given to patients, would help even to direct patients to organisations like Prostate Cancer UK.

Reply from University Hospitals Bristol NHS Foundation Trust
Wed, 23 Apr 2014 11:43:36 +0100

Thank you very much for taking the time to share your experiences on NHS Choices. We would like to apologise for the issues you describe and have shared your feedback with the management team. We would like to investigate the specific concerns you have raised and will need some additional information and consent from your partner in order to do so. Please can you contact a member of the Patient Support & Complaints Team on (0117) 342 3604 (or email pals@uhbristol.nhs.uk) and they will be able to assist. Thank you again for your feedback: it is vitally important for us to learn from the experiences of our patients and their families.

I have visited BHOC a lot over the past eight months for diagnosis and treatment for metastatic breast cancer. My observation is that outpatient clinics, the CDU and Ward 61 appear understaffed. The staff on duty are unfailingly helpful and supportive, wherever they work. Even when clearly pushed for time, nurses and healthcare assistants make certain to give me reassurance about what is next going to happen. My consultant and his registrars are also wonderful, always giving me as much time as I need to ask questions, of which I have a lot! My primary breast cancer was in 2007 and, from then, I notice an incredible increase in the number of patients at clinics and the CDU. A wait in clinic in 2007 was usually no longer than 30 minutes. Now, my average waiting time is around 90minutes, the longest has been 3 hours. I feel that BHOC staff are constantly working against the odds to ensure staffing levels don't affect patients, but that they have no possible way of doing this. PS the selection box below does not include Oncology as an option, only Haematology and Don't Know!

Reply from University Hospitals Bristol NHS Foundation Trust
Wed, 09 Apr 2014 11:56:30 +0100

Thank you for your kind comments regarding the staff at the BHOC. We will pass these on to the teams concerned. We are sorry that you have experienced long waits in clinic. We do our best to ensure patients do not wait longer than 30 minutes, but sometimes very ill or emergency patients may need to see the doctor ahead of you. If this happens, our staff should keep you informed of the clinic’s progress, and we are sorry that this did not happen. We have asked the Sister of the Outpatients Department to remind staff to keep patients informed. Staffing levels for the wards and outpatient areas are monitored daily by the Matron and Head of Nursing, and we have recently recruited more nursing staff to assist these areas. Thank you again for your feedback.

I'm currently nursing one of my relatives through cancer at the moment. They had their first session of chemo and what an experience. Firstly there was nobody on reception. We were showed to the bed by somebody who was leaving to go home and then left. The staff were quite clearly not briefed on the new patients coming in as to any special requirements.They were very disrespectful in the way they spoke to the patient aswell. Bearing in mind that these patients are all scared and worried and a whole bunch of emotions. They were not offered any alternatives to the meals either as their diet is very limited, so the patient went without any food for 24hrs, which to me was disgusting. The chemo machine kept bleeping to say it had stopped going through so they rang the bell and was told not to move because that would stop it from working. I could go on with a lot more, but on the whole it was a very poor experience.

Reply from University Hospitals Bristol NHS Foundation Trust
Tue, 18 Mar 2014 13:01:14 Z

We are concerned to hear about your relative’s experience at the BHOC when attending their chemotherapy treatment. We would like to apologise for the issues you describe and will share your feedback with the management team. We would like to investigate the concerns you have raised and will need some specific information and consent from your relative in order to do so. Please can you contact a member of the Patient Support & Complaints Team on (0117) 342 3604 (or email pals@uhbristol.nhs.uk) and they will be able to assist. Thank you for your feedback.