"prostate cancer diagnosis and aftermath"

About: Neath Port Talbot Hospital

(as other),

My partner who suffers from PTSD related anxiety/memory problems was subjected to completely unprofessional and bordering on illegal treatment when attending the 'one stop prostate clinic' operating at NPT Hospital under ABMU health board. He underwent, without informed consent, and under duresse, an invasive procedure-the whole appointment taking all of 15 mins, contrary to local and national guidelines, during which we felt his safety and dignity was compromised, resulting in a raging urinary tract infection, obscuring of clear baseline picture for following MRI scan, as well as weeks of discomfort and stress after the 'results' appt, where alarmist language was used and his wishes ignored.

Staff involved remain unaccountable, the official concern lodged yet to be addressed, and the whole experience so far feels like a kafka novel, leaving us very angry and upset, as well as concerned that others may experience similar treatment

My partner was rushed into,as well as frightened into by use of alarmist language, a prostate biopsy he neither wanted nor would have chosen,given time and consideration,procedure was carried out without checking his urine test results first (which were handed in halfway through procedure, when door was opened whilst he was lying exposed on the couch), ) antibiotics give minutes before, his right to autonomous choice, respect and dignity ignored, no aftercare and aftercare advice, discharged 15 mins later without having been observed, in shock, pain and bleeding into his underpants. Nothing was offered to protect his clothes then to start the 90 min drive home-on his own, on antibiotics given without the package and without contact details of relevant staff in charge of procedure, without informing his gp about the procedure having taken place.

We attended a 'results' appt a week later-to find the nurse consultant a 'clinical nurse specialist' rushing him through 'treatment options' within minutes of giving the results-the first being 'radical prostatectomy (his diagnose being the lowest grade cancer, gleeson 3*3)..in the corner sat an unnamed, not introduced person (much like at biopsy-three strangers, all female, one not introduced). And when I pointed out that active surveillance (option 'given' somewhat further along) entailed potential further biopsies, he voiced definitely wanting to wait before deciding anything! regardless, he was 'put' on active surveillance (according to letter, not addressed to his gp, that was sent 10 days later to his surgery).

The CNS gave us no consultant name, no contact bar their own (apparently being his designated 'key worker'), and proved to be extremely difficult to contact, telling us conflicting or incorrect information when we managed to contact her. Further contact with relevant health board/staff,up til last appointment (with his original consultant) who we had asked to be referred back to) had continued to be unprofessional, not transparent, not accountable, and 5 months along, and 3 months after raising official concern with health board, we still do not have answers as to why this seems to be deemed acceptable treatment. will escalate to contacting ombudsman next, as have little faith in concerns process...my partner suffers from PTSD and is classed as vulnerable. If this clinic has been run to this standard and continues to be run like this, things need to change urgently-nobody, left alone someone vulnerable, labelled with the 'cancer' label, should experience such lack of professional standards and care. ABMU need to listen and act-we are human beings, not statistics or target numbers..or 'service users'!

Responses

Response from Patient Experience, Abertawe Bro Morgannwg University Health Board

Dear bearsdaughter,

I am sorry that you and your partner have experienced these difficulties and I note that you have already contacted the Health Board with your concerns.

It would be appreciated if you would contact the Patient Feedback Team at abm.complaints@wales.nhs.uk or call us on 01639 683316 and provide us with more information in order that we can assist you more fully.

Kindest regards

ABM Patient Feedback Team

Update posted by bearsdaughter (other)

we contacted Patient experience back in april and were offered a meeting,which morphed into a 'review' (the consultant's words in summing up letter)with keyperson we needed to put questions to not present,and despite us clearly stating this was not what we'd asked for or been offered,nothing else was forthcoming! so above request somewhat academical..

Response from Abertawe Bro Morgannwg University Health Board

Dear bearsdaughter,

We are sorry to hear you remain unhappy as we really want to help you.

As we mentioned previously please contact us with more information so we can assist you.

You can contact Patient Feedback Team at abm.complaints@wales.nhs.uk or call us on 01639 683316.

Kindest regards

ABM Patient Feedback Team

Update posted by bearsdaughter (other)

Our concern is going through the concerns process and is awaiting review before signing off response.The surgical governance team is dealing with it,and eventually a response should be forthcoming.We hope this to be an opportunity for opening up dialogue rather than wishing to appoint blame-something that was offered back in april,but did not materialise,contrary to offers made.It is a pity it seems to take so much time and effort to get any response for something that could have been addressed so much sooner by the people who were,on the face of it,in a position of accountability and responsibility,yet we found them not to be.

Update posted by bearsdaughter (other)

had,what was termed by investigator tasked with our case,'initial' meeting with senior staff members and investigator.despite having been promised recording,this did actually not happen until advocate prompted,following which we were made to sign disclaimers to not use recording..then equipment was turned on..having voiced some but not all of our concerns,- it was admitted that not all of written concerns had been read prior to meeting-,there were some replies to various questions,none to to others,and since some of our recollections of what happened appeared to differ to recollections apparently obtained from staff,little progress was made.We left,feeling,on the whole,somewhat fobbed off.Were also told there would be no further meeting.The disk we were eventually sent which was supposed to contain recording was blank,asked for one that wasn't blank and were eventually sent one..Case is awaiting investigation by ombudsman.

Response from Abertawe Bro Morgannwg University Health Board

Dear bearsdaughter,

Thank you for your post.

Unfortunately, we are unable to comment as we are waiting for the outcome report from the Ombudsman’s investigation.

Kindest regards

ABM Patient Feedback Team

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