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Complaints regarding your cancer treatment.

User
Posted 22 Dec 2023 at 07:32

Hi.

For the past three years, I've received prostate cancer treatment from the NHS. Most of it has been excellent. In fact, I've twice written to the CEO of my local Trust, expressing my praise and gratitude for the wonderful service provided.

However, I am adamant that a couple of quite serious mistakes were made which have left me with worse outcomes.

Our own site mentions how to complain about your cancer treatment. 

 https://prostatecanceruk.org/get-involved/campaigning/concerns-about-the-quality-of-your-healthcare#:~:text=You%20can%20make%20a%20complaint,be%20found%20on%20their%20website.

 We cannot discuss specific cases on here, including my own, but I thought it may be helpful to others, to relate the problems I've encountered with the NHS complaints procedure.

Initially through PALS, I submitted a written complaint to my Trust. A lead Investigator made enquiries into it.  Three months later, I received an unsatisfactory response. I complained again, three months later I received a second equally unsatisfactory response. I submitted a further complaint and three months later received a third unsatisfactory response. By this time I was getting very frustrated.

I knew all the questions I wanted clarifying were accurate because I was working from copies of my medical records. Each time I complained, I asked the same, very specific and pertinent questions, each time these questions were either not answered, or answered inaccurately. Sometimes the answers they gave contradicted their earlier replies. After questioning their third response they refused to reply further in writing and suggested a meeting. I declined this offer on the grounds that if they found it impossible to give clear written answers  I doubted that I would get clear verbal replies.

 However, I accepted their advice of pursuing my complaint  with the Parlimentary Health Ombudsman. When I eventually got a reply from them. I was informed that although my grievances were worthy of further action,  that due to a back log caused by COVID, my case wouldn't be investigated until Spring 2024.

In an attempt to expediate things, I even  made  enquiries with a solicitor, on a no win, no fee arrangement as to grounds for a claim of clinical negligence. However, like in most cancer cases proving causation, the increased harm the alleged breaches of care  had caused, was virtually impossible.

I'm still left feeling aggrieved. I shall await the findings of the Ombudsman and then review my options

Has anyone else, without posting specific allegations, had any experiences or difficulties with the NHS complaints procedure?

Adrian.

 

Edited by member 29 Dec 2023 at 02:50  | Reason: Additional text

User
Posted 29 Dec 2023 at 12:26

We did have a chap here who had a prostatectomy following diagnosis, but the histology showed no cancer. The hospital was rather puzzled and compared the DNA from the prostate with the DNA from the biopsy samples, and they didn't match. Basically, he'd never had prostate cancer and someone had mixed up two sets of biopsy samples. (We presume there was also another patient who was incorrectly given the all-clear, who did in fact have cancer - hopefully the hospital chased them up too but we never heard about that side of it.) He went in to negotiation with the hospital for damages, but he wasn't allowed to publish the outcome IIRC.

Damages in such cases are usually based on the difference in QoL which resulted from the mistake, and any extra costs involved in living with it. As you say, that can be very difficult to prove in cancer (and many other types of cases).

User
Posted 05 Sep 2024 at 12:53

Hi Adrian,

Thanks for the update. I suppose getting an admission is something, but as for that 14 months delay, it must leave a bitter taste. 

As you say.. the trust has made changes and hopefully that will help others on AS.

Back in 2012 I was having urinary problems, and after about a year I was discharged. The letter to my GP stated I was to have regular PSA tests. This never happened and I forgot about the letter until after my diagnosis in 2019 when going through my notes I found it. In hindsight I should have insisted on regular PSA tests. Luckily I don't think it changed my outcome which has been pretty good. 

Cheers, 

Kev.

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User
Posted 28 Dec 2023 at 23:49

Bumping this post as it seemed to get lost. I've not had to deal with these issues. I don't doubt that the bureaucracy deliberately turns the system into a wading through treacle affair. It is a deliberate ply to wear you down. The bureaucrat dealing with your complaint has no emotional involvement, and is being paid by the hour to make your case last as many hours (years) as possible, and no one higher up the tree is putting pressure to get your case resolved, in fact quite the opposite.

A no win no fee solicitor is after a quick buck. Once they get the treacle treatment they move on to the next easy case.

You can waste a lot of time and energy if you think the universe is fair and just; remember, Sh!t happens.

Dave

User
Posted 29 Dec 2023 at 01:08

Originally Posted by: Online Community Member

You can waste a lot of time and energy if you think the universe is fair and just; remember, Sh!t happens.

Hi Dave,

Thanks for bumping this conversation. I submitted it days ago, couldn't find it and assumed the moderators had deemed it 'unsuitable'

I totally agree that sh!t happens, but if it causes harm, and should or could have been avoided, I think it only fair that it should be properly investigated. 

Link to an informative source. If you've got a couple of hours free to read it.

https://publications.parliament.uk/pa/cm5802/cmselect/cmhealth/740/report.html

 

 

Edited by member 29 Dec 2023 at 10:46  | Reason: Not specified

User
Posted 29 Dec 2023 at 12:26

We did have a chap here who had a prostatectomy following diagnosis, but the histology showed no cancer. The hospital was rather puzzled and compared the DNA from the prostate with the DNA from the biopsy samples, and they didn't match. Basically, he'd never had prostate cancer and someone had mixed up two sets of biopsy samples. (We presume there was also another patient who was incorrectly given the all-clear, who did in fact have cancer - hopefully the hospital chased them up too but we never heard about that side of it.) He went in to negotiation with the hospital for damages, but he wasn't allowed to publish the outcome IIRC.

Damages in such cases are usually based on the difference in QoL which resulted from the mistake, and any extra costs involved in living with it. As you say, that can be very difficult to prove in cancer (and many other types of cases).

User
Posted 29 Dec 2023 at 17:28

Here is a link to the misdiagnosis thread Andy mentions

https://community.prostatecanceruk.org/posts/t14485-What-now---any-advice

Dave

User
Posted 29 Dec 2023 at 23:07

Gosh! I have just read this disturbing post, I am so glad that Rafael got a decent settlement and I hope he is doing well😊

User
Posted 30 Dec 2023 at 09:18

A poor bloke, who used to live in our village, had an op and they removed the wrong testicle.

Edited by member 30 Dec 2023 at 09:20  | Reason: Typo

User
Posted 05 Sep 2024 at 09:26

Just a quick update.

Contacting the PHSO did some good. They put pressure on the Trust to give a clear written reply to my complaint and answer the specific questions I'd asked them.

Eventually, they admitted not upgrading my cancer staging from T2a to T2c and admitted that the 6 month follow up MRI scan which had recommended, had mistakenly not been booked. However, they stated that the 14 month delay in having a follow up MRI scan may not have affected my outcome.

In essence, although I can now categorically prove that there had been breaches of care, and although these errors may have contributed to allowing my disease to progress unchecked, I am unable to prove that my outcomes are any worse. Had the disease metastasized and become incurable then I may have had a case. 

In response to my complaint the Trust have made changes to the way the deal with and monitor patients on AS. So hopefully this will help others.

 

Edited by member 05 Sep 2024 at 09:27  | Reason: Typo

User
Posted 05 Sep 2024 at 12:53

Hi Adrian,

Thanks for the update. I suppose getting an admission is something, but as for that 14 months delay, it must leave a bitter taste. 

As you say.. the trust has made changes and hopefully that will help others on AS.

Back in 2012 I was having urinary problems, and after about a year I was discharged. The letter to my GP stated I was to have regular PSA tests. This never happened and I forgot about the letter until after my diagnosis in 2019 when going through my notes I found it. In hindsight I should have insisted on regular PSA tests. Luckily I don't think it changed my outcome which has been pretty good. 

Cheers, 

Kev.

 
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