A few months ago the mental health nurses at the GP surgery suggested that I put in an official complaint with the practice manager regarding my early treatment, suggesting that it might bring me some sort of closure.
This was something I considered doing after my first stay in hospital, but it became something that I was somewhat reluctant to do until that appointment with the nurse.
So now, on this most momentous of days, I'm sharing the letter I sent to the practice manager a few months ago. I have recieved replies to this complaint, and the matter, as far as they are concerned, is closed. If this post gets enough hits I may share those replies with you. All I will say for now is that I didn't get the sort of closure the nurse was suggesting.
To begin this story we have to go back a year or so. I’d been feeling ill on and off for a few weeks, occasional diarrhoea, pains in my abdomen, back and legs. I didn’t really think much about it until the death of BBC journalist George Alagiah from bowel cancer was announced. The following day I saw an interview with his colleague Jeremy Bowen about his own bowel cancer diagnosis, and it hit me that I seemed to have symptoms similar to his. After discussing things with my brother I telephoned the surgery a few days later, spoke to a receptionist about my symptoms, and I was given an appointment later that afternoon.
I saw a Dr. Divya Jacob, who seemed to be quite a caring and compassionate doctor. I explained my symptoms to her, and she scheduled some blood and urine tests, as well as booking me in for various scans and x-rays. I delivered the samples to the surgery a couple of days, eagerly awaiting my test results.
Go forward a few weeks to the middle of August, Carnival week in Cromer. I’d booked this week off work as a holiday. Up until then I’d been feeling kind of up and down, but on that day in particular I didn’t feel well at all. I woke with a terrible pain in my right side, back and chest, as well as a very bad cough and slight temperature.
My mood wasn’t helped when I switched on my telephone and received a few text messages saying that my scans had been cancelled and asking me to ring the surgery to make an appointment to see the doctor.
When I telephoned the reception team and explained what had happened I was greeted by a member of staff who was more confrontational than co-operative. Her stance didn’t improve when I told her that Dr. Jacob told me I was being tested for cancer, and she more-or-less shouted down the telephone to me that I couldn’t see anyone that day, and I couldn’t speak to anyone about why my scans had been cancelled for at least three weeks.
To say that I was upset would be a vast understatement. I was almost in tears, and despite my telling the receptionist about how ill I felt and how much pain I was in she was having none of it. This left me with no choice but to ask to speak to someone higher up the food chain as it were.
I received a call from the deputy practice manager later that morning. She had spoken to Dr. Jacob who explained to her that my scans had been cancelled becomes my samples had tested negative for bowel cancer. Although this was a weight lifted off my shoulders it didn’t help explain why I was feeling so ill. She said that Dr. Jacob would call me later to discuss this further.
Dr. Jacob called me a few hours later, and after explaining my current symptoms to her she said that I “probably” had a chest infection, and that it would clear up after a week or so if I took some over-the-counter medication, paracetamol and ibuprofen, etc.
So I did as I was advised. I spent the rest of my holiday taking various over the counter medications and basically feeling very unwell. I wasn’t due to return to work until the following Tuesday, but as I got to the weekend it became obvious that I really wasn’t getting any better.
I telephoned the surgery again and explained my situation and symptoms, and once again I was met by someone who seemingly didn’t want to help at all. Thankfully I managed to get a face to face appointment with Dr. Jacob later that afternoon, and after examining me she told me more-or-less the same thing she had the previous week, that I had a chest infection which would clear up with some over the counter medication. She also signed me off work for two weeks.
In hindsight I probably should have said something then, because I found it odd that even though she diagnosed me with a chest infection she didn’t prescribe any antibiotics.
So once again I did as I was told and took various medications, but nothing seemed to work, and it was over the August bank holiday weekend that I took a significant turn for the worse, so much so that my brother contacted the out of hours GP service on Saturday evening. Both my brother and I described my symptoms to them, and after another telephone call to them on the Sunday I was advised to go to the walk-in centre in North Walsham on the Bank Holiday Monday.
The doctor I saw there examined me. Like Dr. Jacob before him he diagnosed me with a chest infection, but unlike Dr. Jacob he prescribed some anti-biotics for me, telling me that Dr. Jacob should have given me a course weeks ago.
The medication he prescribed had little effect on me, so much so that as August became September I telephoned the surgery. Once again I was met with an uncooperative response when I explained mysymptoms and situation. Eventually I managed to secure an appointment with one of your nurse practitioners, Andrew Johnson.
By the time I reached my appointment with Mr. Johnson my symptoms had become a whole lot worse. I was getting hardly any sleep because I couldn’t lay down flat, and I spent most of my nights going through coughing fits that lasted anything up to three hours, which caused me to bring up no end of unpleasant gunge from my lungs. I also had severe pain down my right had side, chest and back.
Seeing Mr. Johnson felt like a breath of fresh air, although that’s probably the wrong thing to say given my situation. It seemed to me that Mr. Johnson was the first man at the surgery to take me seriously. He examined me thoroughly, and told me that the reason I was in such pain was because the airways on the right side of my body were partially blocked. He promptly put me forward for some x-rays at the hospital over the road.
By the time the day of the appointment for the x-rays arrived I was in a really bad way. I was in a really bad way. The hospital and surgery are normally just a short walk away from where I live, but by then I could hardly walk, even with the aid of a walking stick. It got to the point where I had to take a taxi to the hospital, a journey that used to take me a little over ten minutes on foot.
After I had the x-ray I was asked to wait just in case there were any problems, and when the saw my x-rays they told me that I was in a really bad way, that there was a lot of fluid on my lungs and that I had to get to the Norfolk & Norwich Hospital as soon as possible.
So after telephoning my brother and asking him to meet me there I made my way to the hospital. After having gone through a barrage of scans and tests I was admitted to one of the wards that night. The doctors there told me that I didn’t have a chest infection and that I actually had pneumonia among other things, and that I’d need a chest drain to get rid of the fluid that had built up around my chest and lungs. To say that I was terrified would be an understatement.
The first chest drain went in through the ribs on my right side, just under my armpit. Everything seemed to be going according to plain until later that night when I woke up screaming. The pain coursing down my right had side was by far the worst pain I’d ever experienced. I’d never felt anything like it before.
I actually have very few memories of anything else that night. From screaming out in pain in a darkened room the next thing I remember is staring up at the bright lights in the room. To my right I there was a nurse holding my hand, trying to comfort me. In front of my bed stood someone going through the drawers of a cabinet looking for various things. I could see two electric paddles on the top, the sort that are used to shock a heart back into life.
To my left there was a man putting things on my chest, connecting me up to a heart monitor, while all round me there were people doing other things, hooking me up to a drip, injecting me with drugs, that sort of thing, and while all of this was going on I kept hearing the same words over and over, as if they were on some kind of repeat loop in my mind: “heart failure, heart failure”.
I really thought that I was going to die. My mind began to think about those in my family who had died at roughly the same age as me. My mother had died when she was just 53. One of my older brothers passed away at the same age. I also began planning my own funeral. I began to think of songs that I wanted played, and who I wanted there. I began to wonder who would tell the people in my life that my family didn’t know, how they would know what had happened.
I have a few other memories of that night, such as the nurse coming back to check on me, that sort of thing, but I remember very little else until the following day. I really had no idea what had happened to me, so much so that I had to ask my brother what had happened when he visited me later that day.
It turned out that the chest drain had filled up a lot quicker than the doctors thought it would, so much so that some of the fluid had filled back into my body. This caused the tremendous pain that I went through, and sent my heart into atrial fabulation.
After having survived that little episode I underwent further scans followed by a second chest drain, this one inserted into the right side of my back. This one was in place for the next eight days or so and was quite a bit slower than the first drain, which is something to be thankful for I suppose. I was told that somewhere between two and half and three litres of fluid had been drained from my lungs.
After September became October I was finally discharged from the hospital. I was nowhere near capable of returning to work, so I was signed off for another few weeks. I returned home, still using a walking stick, feeling better but still under the weather, hopeful that I could go back to work by December at the latest.
Things seemed to get better for me after I was discharged from hospital. Sure, I wasn’t as fit as I normally was, but I did as I was told, I took things easy, took my medication, etc, etc.
The second Monday after I left hospital I had a meeting with a couple of the managers from work (sorry, but I forgot to mention that I worked as a picker in the home delivery department at Morrisons here in Cromer.) This was a welfare meeting to see how far I’d come in my recovery and when I’d be able to return to work. The meeting went well, and because I was still signed off sick another meeting was scheduled for a few weeks time.
But just two days later I began to feel unwell again, with the pain returning to the right side of my chest. I had a appointment scheduled with the surgery for that Friday for a blood pressure check, but after a quick phone call to the surgery that appointment was changed to a check-up with Dr. Catherine Grady, and after another extensive check-up it wasn’t long before I was back in the Norfolk & Norwich, this time in the Acute Medical Unit.
It was decided after consultation that I needed an operation to help remove the fluid that had returned, and that I also need an operation to repair my diaphragm. However, during this time my heart went into atrial fibrillation again, which meant that my heart-rate had to be brought back down before they could operate on me.
I was kept in hospital for another two weeks or so, having been moved around various wards during my treatment. I was eventually moved into my own room. During that time I underwent various treatments such as blood transfusions and the like, and I spent a great deal of time in bed, connected to a catheter and with various other things hooked up to me. It wasn’t a very pleasant experience to say the least, especially as I had to spend my 52nd birthday there, although I joked with one of the doctors that he’d broken his promise during my first stay there, that I wouldn’t be spending my birthday in hospital.
I was discharged from hospital a second time a few days after my birthday with what could only be described as a carrier bag full of various drugs that I was told to take, including a bottle of morphine that I vowed never to use for obvious reasons. I also had four new scars on the right side of my body to add to the two I’d picked up during my first stay, with two rather large ones across my rib area where my diaphragm had been repaired.
In the weeks following my discharge I had a further meeting with my managers at work, and it was more than obvious that I wouldn’t be able to return until the new year. I worked in a fast-paced environment in a job which involved a lot of heavy lifting.
My smart watch told me that on average I walked between five and seven miles during a shift, and before my illness I weighed in at around fourteen stone, but by the time I was discharged from the hospital a second time I could barely walk unaided, and my weight had gone down to around nine and a half stone. At least by this time my appetite was better than it had been. It was virtually non-existent before and during my hospital stays.
So what I was told would be a long recovery began as November became December, and in the second week of the month I went into Norwich for my covid jab with my brother, meeting up with one of my sisters on Castle Meadow.
I’d had to cancel two previous appointments for the jab at the surgery because I’d been in hospital, and this was actually only the second time I’d been somewhere that wasn’t a hospital or a doctor’s surgery since September, and with the city being packed with people doing their Christmas shopping I felt quite overwhelmed by everything.
It was an example to me that my mental health had suffered just as much as my physical health over the previous months. I’d lost count of the numbers of times I’d broken down in tears in the hospital, terrified that things were only going to get worse, and as I said before I thought I was going to die at one point.
The next few weeks or so were the start of a slow and painful slog on the road to recovery. I had further x-rays in the run-up to follow-up appointments at the Norfolk & Norwich, and I was told by the surgical team there that I wasn’t recovering as quickly as they hoped. I underwent a further cat scan in April to determine what I needed next.
During this time I attended further welfare meetings with my managers. During one of these I was put forward for an appointment with the company who handled all the medical kind of things for Morrisons. I underwent a telephone assessment, and having given them all of the information about my current condition and all the medication I was on they determined that I was still unfit for work.
Around the same time I had another medical consultation for the Department for Work and Pensions. I was claiming Universal Credit from them because I only worked for fifteen hours a week at Morrisons when I was fit for work. The results were the same as the previous assessment, that I was unfit for work.
I had further welfare appointments with Morrisons in March. The second one was what Morrisons called a “hearing” to determine my state of health, and with their company, the DWP, and the surgery having all declared that I was unfit for work the company decided to terminate my contract with them because I couldn’t give them a date for when I’d be able to return to work.
A few weeks later in April I had a further appointment at the Norfolk & Norwich where I received the results of February’s cat scan. Thankfully my chest and lungs were clearing up nicely, but the scan had revealed that my heart had gone into atrial fibrillation again, so while I had been discharged by the thoracic surgery team I was once again under the care of the hospital’s cardiology team, having previously been under their care in 2015-16 and again in 2019-20.
It wasn’t all good news from the thoracic team though. I was still in a great deal of pain from the surgery to repair my diaphragm, and I was told during that appointment that it could take another year before I health from that particular operation entirely.
This isn’t the end of my story. I briefly touched on my mental health. I’ve had mental health problems before over the years (it would take far too long to explain everything here), but there was one point around this time that scared the you know what out of me.
You see, with everything that had happened, all of the problems with my illness, the way I’d been treated by the surgery during the early days of my illness, the constant pain from the diaphragm repair that affected me 24/7, the loss of my job and the support structure that came with that, and other things that were going on in my personal life that I don’t really want to go into here lead me to, for a few thankfully brief moments I considered taking my own life.
Even just thinking about that scares the hell out of me, and just writing about that sends a shudder through me and leaves me on the verge of tears. So a few days later I contacted the surgery via e-mail explaining the situation and asking for an appointment.
I was given an appointment with the aforementioned Andrew Johnson who, just like before treated me extremely well. I explained everything to him. He referred me to the surgery’s mental health team, and having undergone two assessments, one with the Wellbeing service, I’m not on the waiting list of counselling.
As for the other things, following my recent atrial fibrillation diagnosis I’m currently on even more medication, and I’m a couple of weeks away from an appointment with the cardiology team at the Norfolk & Norwich. I’ve also been on co-codamol briefly to help with the pain from the diaphragm operation. The medication helped with the pain quite a bit, although I only took two pills a day, but now that course has finished I’m back to using paracetamol and ibuprofen again. The pain has increased again, but I’ve got another appointment with the surgery to discuss my ongoing treatment, so I’ll discuss further pain management with the doctor then.
So having written all of this for you, seven pages and over three thousand words, you’re probably wondering what I’m hoping to get out of this from you and the surgery. To be completely honest with you I’m not entirely sure.
It feels like my life has been put on hold for nearly a year now. There are things that I haven’t been able to do. My mental and physical health has suffered a great deal, and to be completely honest with you with everything that’s going on I can’t see an end to it at the moment.
But at the end of the day it all seems to come down to one thing, and that’s the misdiagnosis of my illness that took place at your surgery. I keep thinking that if Dr. Jacob had actually prescribed some antibiotics it may have taken care of the infection in the first couple of weeks. Her failure to do so seems like it has cost me a great deal.
It’s not just Dr. Jacob’s failures though. I mentioned before that the reception team at the surgery were at times more confrontational than cooperative. Despite my pleas, despite my telling them how ill I felt and how much pain I was in they were more of a hinderance than a help, and I can’t help but think that if they put me forward to see a doctor a lot earlier then I wouldn’t have ended up in hospital, and everything that happened afterwards may never have happened.
So what do I want from you and the surgery? It’s been suggested to me that I should consider legal action against you, but I’m reluctant to do this as it would mean taking money from the National Health Service. I’m a big fan of the NHS, especially after the way the doctors and the nurses at the Norfolk and Norwich Hospital have treated me. I really can’t fault them. Which, sadly, is something that I can’t say about the service I received from the surgery.
I guess what it boils down to is that all of this is an official letter of complaint, and that what I’m seeking from you is an official apology.
But I’m not just looking for an apology from you as practice manager on behalf of the staff of the surgery. It would be nice to get an apology from the leader of the reception team as well after the way they treated me during the early weeks of my illness. At times it seemed that I was being made to jump through hoops just to get a telephone appointment with a doctor.
It would also be nice if I could get an apology from Dr. Jacob as well, but given that she no longer works for your practice (from what I understand she’s now a partner at the Birchwood Medical Practice in North Walsham) that probably wouldn’t happen, although it would be nice if you could send a copy of this letter to her.
So basically I guess I’m just asking for an admission of guilt, an admission of the failures of your practice, and an apology, because after everything that’s happened there isn’t a magic wand that can be waved that can return my physical and mental health back to normal, that can get my job back to me and bring back everything I’ve lost, and making this complaint to you, as your own mental health nurses have told me, may bring me some sort of closure.
In closing I would like to thank you for taking the time to read this rather lengthy letter documenting the last year of my life. If you would like to contact me to discuss the issues I’ve raised here I would be more than happy to meet with you.
I look forward to hearing from you shortly.
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