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"Norfolk and Norwich Hospital Oesophagectomy with complications,"

About: Norfolk & Norwich University Hospital

(as the patient),

Possibly as a result of having a PE diagnosed and treated 4 months earlier not being picked up on, a GP appointment for a numb leg resulted in an 'out of the blue' declaration that I had a tumour in my Oesophagus. There followed a rash of tests and Chemotherapy leading to major surgery on the grounds I could die from Cancer at any moment. My wife accompanied me to all appointments as we were in some doubt as to my condition being so critical. I was denied a second opinion and felt under duress to agree to surgery. 

The full possible dangers were never explained to us at meetings in complete contrast to notes recovered recently containing claims we 'were' fully informed - we were excluded from seeing these notes which of course we would have challenged and indeed not agreed to the surgery.
The initial notes from the GP and a hospital Doctor claimed I had several years of dysphagia and quote -he is still managing a soft diet- these claims were just not true - despite having occasional heartburn I was not on any soft diet and had no problem whatsoever swallowing nor was I regurgitating food. 
I weighed over 15 stone, was muscular above average for strength and stamina, I don't smoke or drink alcohol. I had no prior appointments with the GP regarding Dysphagia in the two years prior as claimed.
The Tumour was apparently reduced through Chemotherapy but no other options were ever discussed and a second opinion was denied me, It was made clear by Doctors, Surgeons and Senior Nurses that without surgery I would die as I was riddled with Cancer.  
Hospital notes obtained recently show that unbeknown to us they knew the Cancer hadn't spread even before Chemo. The proceeding high risk surgery of February 2020 went wrong including oesophageal leak and damage to my lungs needing many further operations with a month in hospital during which recovered records included, quote-It is sad this patient has deteriorated-, yet to be fully investigated - on my discharge my poor wife was terrified and left alone to care for me as was previously covered  by the ward staff, I was helpless. I continue to shield being highly vulnerable to Covid 
As the earlier hospital notes stated the Cancer had indeed not spread so thirty three perfectly healthy Lymph Nodes were removed with other body parts removed or damaged, the vital "mopping up" Chemo was abandoned as presumably there were no Cancer Cells left? 
I am still very ill never being offered any physiotherapy for breathing or pain management. To this day I am easily fatigued and quite often find myself hunting for breath restricting activity, I have trouble eating and my throat is swollen and painful, my voice, taste and smell senses have never fully recovered. I have chronic pain from nerve end damage and my weight is still down 3 stone.
I felt so unsafe with the whole situation that just days before the surgery i removed myself from the Organ Donors list.
One of the most frightening aspects of my case is the discovery of ward notes written soon after the surgery clearly stating -Non Malignant Tumour- 
I did complain to PALS last year and was told by staff my "complaint was too late"  (it is not) and that "anyway a response would be held up because of Covid", I haven't heard from them since. I am now seeking assistance from an independent patients body toward a public inquiry that may save others from going through my terrible experience. 
Unfortunately patient's interests do not appear to be foremost and transparency is lacking.  Thank you.
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Responses

Response from Sarah Higson, Patient Experience Lead, Norfolk and Norwich University Hospitals 3 months ago
Sarah Higson
Patient Experience Lead,
Norfolk and Norwich University Hospitals
Submitted on 09/05/2022 at 19:27
Published on Care Opinion at 20:17


Dear mist parts

This sounds to be a distressing and difficult experience and time for you and I am sorry you have not heard from us with the answers and response you need.

Please do contact the pals and complaints team again as I know that we will want to be able to look into this and follow up with you. We can check where your complaint is within the process and ensure it is being investigated and reported to you. You can email directly via palsandcomplants@nnuh.nhs.uk or by phone on 01603 289036

Kind regards

Sarah Higson

Associate Director for Patient Engagement & Experience

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by mist parts (the patient)

Thank you for your response but I speak also for my family and close friends who have been part of or closely followed my predicament. Time is apparently a factor in bringing complaints of service, again putting the patient in a difficult position when up against tactics of the NHS Pals and Complaint's. I don't want to loose more time so will find it difficult to waste another 6 months. We will consider your suggestion along with other patient options.

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