First post to get the ball rolling, it is a bit long, but an acceptable length for everyone.
31st July 2009
Today is the fourth anniversary of the day that “M” was taken, I say “Taken” because she didn’t “leave” or “pass”; she was taken by indifference, the indifference of the Senior Surgical Consultant, by the six other doctors that treated her, and the indifference of the Hospital management, by the GMC my MP and the Healthcare Commission.
I could use words such as “Medical negligence” or “Failure of Duty of Care” but they are too emotive, too clinical.
Indifference is much more fitting because it refers to a human failing, and the reason for “Ms” death was definitely of human making.
I have thought long and hard about posting this, and I wrote it quite a while ago, but I now think that the time has come to tell “Ms” story, and the attitude of one Senior Surgical Consultant, the Hospital, “my” MP, and the “Powers that be”, the hospital by the way received the highest rating from the HcC throughout this period and still do as far as I know.
And of course no one was found to be at fault.
We had just left the hospital after the appointment with the Consultant Oncologist, a nice man, he was based at the Royal Surrey but held clinics at Frimley Park he was very communicative, enthusiastic and informative.
“M” had just been given the “all clear”. Her bowel cancer was in remission.
We walked to the car in silence and sat down. We looked at each other and burst into laughter, hugged, cried and shouted, the other people in the car park must have thought we were mad.
The only thing now was to get rid of “M”s stoma, the “thing” which had plagued since her emergency operation back in December 2002 when she was rushed to Frimley Park Hospital at noon. Six hours later, the diagnosis was that her bowel was blocked. Since she looked 9 months pregnant and was vomiting faeces that was pretty obvious. The registrar said that it might be cancer and that she would need an operation to remove the blockage. We would have to wait and see what it was and if so “M” would have to have a stoma and colostomy bag. I make a point of saying that the registrar told us because the only communication from the Consultant was a grunted question outside the X ray dept of “are you the husband”. He then walked off.
I should have realised then that there would be problems but I trusted him. After all he was a consultant and I presumed that he would care for my wife.
The operation went well, the cancer was removed and “M” was left with the stoma.
The nurse explained the mechanical function and how to change it and look after the skin around it. I must say I was horrified to see this red lump hanging out of “M”s side but she coped as always. We were offered no psychological help at all - just sent home with the equipment and a follow up appointment with the stoma nurse.
Six months of chemotherapy followed. Twenty-six weeks of going to Frimley Park.
The nurses in the dept were absolutely wonderful, I cannot praise them highly enough. The appointments became a “day out” and we would almost enjoy the trips, the rooms were clean and modern, there was a lot of laughter and we made new friends, including the nurses. Time passed very quickly and suddenly the chemo was over, and as ever “M” coped with it very well, never complaining and never asked “why Me?”.
The next target was to have the stoma reversed, we went to our GP, another good man we had known him for many years, he was very caring and I think he had a special regard for “M” as did most people who knew her.
“M” had other problems; she was Bi-Polar (Manic Depressive), had a thyroid problem due to the Lithium- the poisonous metal which is used to treat the condition but destroys the Thyroid gland. She also developed epilepsy, from I think the over prescribing of anti depressive medication, and was on Phenytoin.
Our GP managed to get her away from the Psychiatrists, and changed her medication, a long list of tablets. Without the Lithium she was much more stable and her true personality came through, this was in 1994, years before the cancer.
The appointment was made with the Consultant, we attended and after the usual hour long wait saw one of his registrars, a young Dutch lady who agreed that the stoma should be reversed and that they would contact us with the admission date.
The admission letter came, it was Wednesday the 7th of April 2004, and then another letter saying that her admission had to be cancelled due to unforeseen circumstances, the new date was Monday the 26th of April 2004. I phoned the hospital as they asked, they had no beds but to keep phoning, eventually we were able to go to the hospital but it was 9.00PM, we sat around until 11.00Pm when a doctor finally booked “M” in. He was an army doctor and not one of the consultant’s team who apparently were unavailable.
The operation was set for the next day, I left to let “M” have some rest, I didn’t really want to leave her because I could see the fear in her eyes, but it wasn’t fair on the other patients.
I visited the next day-Tuesday the 27th; “M” was looking much better, and in a way, was looking forward to the operation. No one could tell us when it was going to be. The operation was finally over at 9.00 PM. She had waited all day without food and not knowing when it would be.
The reversal was apparently successful. I visited the day after –Wednesday the 28th and “M” was sitting up in bed she looked well, and was very excited. I saw the stoma site, it looked very neat, and she was even able to get out of bed for a small walk.
Thursday the 29th April. This is when it all started to go pear shaped.
According to the drug chart she was given a suppository at 10.40 AM; the hospital denied this but it is very clear, the only thing unclear was the signature of the doctor who authorised it. By 10.25 PM her temperature started to drop, by 11.30 Pm it was down to 36C, her blood pressure had dropped to 82/55, her heart rate rose to 105 and her respirations were 20, her urine output dropped. The choice of diagnosis was either a chest infection or sepsis (The medical Director agreed the symptoms were compatible with both) The Hospital said later that she had a chest infection (“The recordings you mention are compatible with sepsis and particularly with a chest infection Which your Wife had”, but even The Healthcare commission decided it was not “While the advisor did not have a formal report on the chest x-ray he states that the interpretation by the specialist registrar did not suggest a chest infection. Overall the advisors view was that there was little to suggest a chest infection during this period. He did not consider that any recommendations for action by the Trust were necessary. It is unclear to me why the Trust stated in writing to you that your wife had a chest infection although it seems that there were some indications that this was a possible diagnosis. I hope that the additional explanation provided by the advisor has been helpful to you. I do not consider, on the basis of his advice that there are grounds to make recommendations to the trust on this issue”) (Sitting on the fence or what.) which left sepsis. Nothing was done.
There were seven “doctors” including the consultant involved in “M”s treatment during the period from the operation to the “emergency “ operation, not one of them was able to diagnose Sepsis. The CEO thought it was unlikely that all these “doctors” could miss the symptoms, and if it were only one doctor then it was possible. I have three trains of thought on this.
1. It was a case of too many cooks.
2. The consultant was so arrogant that he could not conceive that he had botched the operation, and that his “team” were so frightened of him that they would not bring the subject of sepsis to his attention.
3. Because the consultant was rarely in attendance, the “team” were so badly trained that they were unable to recognise the symptoms of sepsis.
The SHO wrote in the notes afterwards that “M” was NOT to have PR medication because she had a low anastomosis but it was too late the deed had already been done.
The doctors gave her Gelofusion, twice and left it at that.
I went to visit her on Friday the 30th, it was her 53rd birthday, and I took her the cards from family and friends and told her that the presents were at home waiting for her. She looked ok and was able to get out of bed, but seemed very tired. I put it down to the stress, but as usual there were no doctors about, and perhaps being naïve I trusted the hospital.
Saturday the 1st of May 2004, I visited again, “M” did not look well, she was sleepy, breathless and very tired, no doctors about again, but my trust remained and I put it down to reaction to the operation.
At 10.30 AM on Sunday the 2nd of May I received a phone call from the ward sister asking me to go to the hospital as “M” wasn’t very well. I arrived in record time.
“M” looked very ill; she was grey and was paranoid and rambling. A doctor finally arrived at about 2.15 PM, her abdomen was swollen, the wound was red and there was a large rash on the lower right side of her abdomen. I know this because I was with the doctor when he examined her.
I don’t care what he wrote in the notes: - “(No evidence of paranoia the patient reports feeling better than yesterday, abdomen soft-non tender, no tenderness or swelling, check Phenytoin levels)” I think he must either have got the wrong patient or was a total moron. I saw it with my own eyes. I almost begged him to do something, but he said it was probably a reaction to the morphine although it had been discontinued the night before. I stayed most of the day and eventually “M” seemed to settle down and relax. She was reviewed that night, her right abdominal area was tender, her speech was slurred and she was disorientated. They took a chest x-ray, despite the fact that her temperature had started to rise from 09.45 that morning, her breathing was all over the place from 16 to 22 breaths per minute, and her heart rate was between 95 and 105, and despite the fact that the nurse had been concerned about her from about 10.00 AM. The decision was to keep monitoring.
Her temperature spiked to 37 c at 7.30 Pm that day, nothing was done and no one contacted me. At midnight there seemed to be some concern and another chest x-ray was taken, and I think antibiotics were finally started, it is difficult to tell from the scrawl on the drug charts but I give them the benefit of doubt because that is what I would expect a responsible doctor to do. The medical director told in me 2008 that he “would not give antibiotics to a patient with suspected sepsis unless they would do any good”. What else would they do? And also that “a CT scan would not be of any use”, the next notes only show-“04.30 AM-patient asleep now-pr80-rr18-bp40/50 “again nothing was done.
On the 3rd of May 2004, she was not seen by the doctors in the morning, in fact, there was no action until 7.00 PM that day when a registrar sent “M” for a gastrograffin enema which of course was positive for a leaking anastomosis.
She was septic.
But I was not contacted until 10.30 that night by the ward sister who asked me to go to the hospital because “M” would not sign the consent form. I really don’t blame her. I arrived at about 10.45, and spoke to the registrar who told me what was happening.
The thing I can’t comprehend though is if there were concerns at midnight, why did it take 19 hours to arrange the test. I waited by her bed, she was very ill and in pain but I managed to get her to sign the consent form, 2 ½ hours later they took her to theatre in all a total of 5 ½ hours from the test result and 24 ½ hours from the first concern.
Just an aside- there was a nurse sitting on a chair next to us (as “M”s brother was also present) reading a magazine, two feet in front of her on the floor was a blood stained plaster, which is probably there today, I remember the TV program about Frimley Park and it’s cleanliness.
The excuse the Hospital gave for the delay was that there were other “emergencies” it seems that they used a system of “first come first served” just like a supermarket, but they made great pains two years later to tell me that they now used a system of “Clinical Need” which in my mind was how “emergencies” should have been prioritised as this was supposedly a “Hospital”.
The operation did not finish until 04.30 in the morning of the 4th of May and she was taken straight to ICU.
The operative notes state, “Biliary peritonitis, 3cmx2cm tear in the ileum (small bowel), large 3x3cm anastomotic posterior leak (at the back just where a suppository would be placed), a necrotic patch adjacent to the anastomosis, the surrounding bowel appears very friable”. The surgeon had either not ensured a proper blood supply to the bowel join or it was disrupted by the suppository, the Hospital decided that it was the former. The tear in the small bowel was either caused by the plank of a surgeon “nicking” the bowel or because he did not remove enough of the adhesions and use a barrier to prevent more forming because her small bowel blocked and burst. They seemed to think all of this happened at the same time, very convenient.
After I had been home to shower and shave I went back to Frimley Park to see her, there were tubes, wires and machines all around her, she was on a ventilator, it really is much worse than you see on the TV, the nurse was quite forthcoming but couldn’t tell me much, so I waited for a doctor. I spent 8 hours in ICU that day and every other day “M” was there, the doctor come to see me on the 6th of May-two days after she was admitted to ICU, he took me to the waiting room where we had to stand with our backs to the door for privacy and told me that she had a 50/50 chance of survival at best.
The days came and went “M” just laid there, her body would swell up and froth came from the corner of her mouth which I would wipe away, I spent hours each day holding her hand and talking to her, and could see the reaction on the monitors, her heart rate would rise when I spoke.
I just wanted her to know I was there.
They tried to wean her off the ventilator many times according to the notes but her septic body could not cope-she couldn’t breathe on her own, so she was reattached to the machine. At one time the Insulin drip became detached; I don’t know for how long, that’s all it said in the notes.
My days consisted of visits to the Hospital, by the time I got home I was so exhausted that I would collapse on the sofa, and wake up still there in the morning
But I was the lucky one; I wasn’t in the hands of the medics.
The days blurred into weeks, I don’t know how long it was but one day I went into ICU and “M” was awake, she had a tracheotomy (A tube into the throat) she was still attached to the ventilator and couldn’t speak but she recognised me and that wonderful smile spread across her face. She had in fact been in ICU for three weeks. When I left the hospital I sat in the car park and cried, it all came out-the fear, the horror, the anger, and the relief.
I really thought we had made it, I knew “M” was physically very weak but her spirit was strong, I thought that life would return to normal, it would probably take a long time but I could see the future again.
How wrong I was.
On Friday the 21st of May at 10.30 PM I received a phone call from the Hospital, my heart sank, it was bad but not that bad. The Doctors had decided that they wanted to transfer “M” to Eastbourne General Hospital because they “needed her bed”, she was still on the ventilator but they said she was the fittest person in ICU.
Once again I rushed to Frimley Park, I asked the Doctor if they could move her to HDU (High Dependency Unit) which was right next door, but they said that no one was well enough in there to be moved to the ward.
It was just after midnight when the ambulance set off on the 180 mile round trip, the driver told me that he would be using blue lights as “M” was on the ventilator which was on battery power.
I kept up with the ambulance as far as the M3, and then it disappeared into the distance. It must have been doing 100 MPH as I was travelling at 70; and I lost sight of it.
I arrived at Eastbourne at about 4.00AM, “M” was already settled in, she had a room to herself albeit with a huge window so she could be seen. The nurses were friendly; I was offered coffee and a pillow and blanket if I wanted to sleep in the waiting room.
I just wanted to see “M”, I spent several hours there, and came home, and it took two hours. I saw her again on Sunday along with her brother who drove, she was Ok if a little confused because I hadn’t visited every day so I had to explain how far it was from home, she understood.
On the 24th of May the Hospital called to say that “M” was being transferred back to Frimley Park; another sigh of relief.
During her stay in ICU two CT scans were taken, on the 7th and the 14th of May, neither showed any evidence of cancer but the second one did mention “encysted fluid on the right side of the pelvis” from which the cyst grew.
No blood tests were taken to confirm or deny cancer, but later the Hospital insisted that “M” has terminal cancer while she was in ICU.
Then the curse of Frimley Park struck again, “M” contracted MRSA. They had known that she had MRSA in her nose on the 4th of May because the Path reports stated it, but as usual nothing was done. The doctors involved were only reactive to problems; if they had been proactive it might have been a different story.
So here we go again, more antibiotics, more days sitting by her bed, the wound on her abdomen had increased to 17cm by 5cm; they said they were going to use a vacuum dressing to “suck” the “gunge” out of the wound but they didn’t have one available so she waited days for it to be applied.
I don’t know how but she managed to overcome the MRSA; her spirit rose to the occasion and was eventually moved to HDU with the tracheotomy still in place, she had to have speech therapy, and a valve was inserted into her throat so that she could make sounds and learn to speak again.
From HDU she was moved to the ward (mixed) and on Monday the 14th of June “M” came home. She still had the stoma.
The nurses came every day, they were wonderful, they would change the dressings and chat, and as usual “M”s magic worked they all grew fond of her.
From the 27th of April to the 14th of June I never spoke to the Consultant and rarely spoke to a doctor, I saw him quite often in ICU but he would scuttle off or do a 180 and disappear through the nearest door. I did manage to corner a consultant, a Russian I think and asked him why “M” had to be transferred his reply was “these things happen” then he walked away. This seemed to be the attitude of the senior medics.
We had an outpatient appointment for the 31st of August 2004 with the consultant, and after the usual hours delay were shown into the consulting room. He looked at the notes and said, “You are not 74 years old are you” he had the wrong notes. He thought it was funny, I didn’t.
When he finally found “M”s notes he asked her how she was, she said “fine” which was her usual reply. He then started to fill out the yellow discharge form, this was the turning point in this sorry tale, if I had allowed him to discharge “M” then the last three years of battle with the Hospital would not have happened, he would have been taken before the GMC and probably struck off (in a perfect world). Another convenient fact is that he says he cannot remember the consultation.
But being who I am I interrupted and pointed out the horrendous ordeal “M” had undergone in hospital and that she wasn’t recovering as well as she should be. He looked at the notes again and said “ah yes we removed a cyst like thing during the operation, the result was equivocal, but we ought to check it out” (The path report said “Highly Suspicious of recurrent colorectal Cancer”) equivocal? But he did not even bother to examine her. Again there was no mention of “terminal” cancer that the Hospital later insisted she had.
We went to the clinic and “M” had a blood test done, then we went to the CT dept and handed over the “urgent” form for a scan. Then we went home, “M” as always was accepting and trusting of this “Consultant” but I could feel the fear rising in my heart again.
In November “M” had an appointment with our GP for a smear test, we attended but there was a problem as it was too painful, so he examined her abdomen, I saw the look in his eyes when he discovered a large mass, he almost slumped in his chair and I could see tears in his eyes, as I said he was very fond of her, she mentioned it to me on the way home, but what could I tell her?
The outpatient appointment arrived; it was for November 2004 at Farnham Hospital which was five months after her discharge and seven months after the CT Scans in ICU.
After the obligatory wait we were shown in, the “consultant” sat at the desk, with his usual humanity he told us that “M” had inoperable bowel cancer and that he was going to refer her to an Oncologist, he offered to show us the scan but he couldn’t work the computer, I asked him “what type of cancer, where is it, why is it inoperable, what is the prognosis?” his reply was “those are all very good questions but I cannot tell you the answers” he didn’t even have the gonads to tell her it was terminal, I had to phone our GP that afternoon to find out what the hell was happening, he had obviously phoned the “consultant” who made the comment “it must be the Scottish accent” he told me that Maggie’s cancer was terminal, the “consultant” had left it to me to tell her she was going to die.
It was January 2005 when “M” started the chemo, she could have started just before Christmas but I wanted her to have one last good time. She couldn’t have full strength treatment but was accepted on to the Focus two trial-80% strength plus extra drugs. The Oncologist was the good Dr GM which helped a little.
We were back in the old routine-chemo, blood tests. CT scans and clinics.
Things started to go wrong; first there was the DVT, then colds and infections, “M” was getting weaker, she had to go back to “the hospital” because the “cyst” in her pelvis which was 7cmx5cm had blocked the tube from her right kidney to her bladder.
We thought it was to drain the cyst but it was to cut a hole in her back and insert a “stent” a plastic tube through her Kidney and into the blocked tube. When we booked in even the doctor didn’t know why “M” was there, another example of the “consultant’s” skill.
The great man actually appeared at “M” bedside and I asked him “Why can’t this cyst be drained”. His reply was “because it would spread all over her body”, then a look of revelation spread across his face, and the operation was changed so that the tube would be put in from underneath, without cutting into her Kidney, it was a small victory but very satisfying.
Then the same blockage happened to her left Kidney, but we managed to get her into The Royal Surrey, I couldn’t believe the difference, the staff were helpful and friendly, the doctors actually spoke to us and talked about the treatment. Even the Consultant would pop in and chat. I thought that hospitals were like Frimley Park and Consultants like “the consultant”, but no, these people were actually human and seemed to understand what was happening.
The second stent was inserted through her left Kidney as there was little point being cautious now.
It was while “M” was in there that her bowel blocked again, all the usual tests were done and it was decided that she needed another operation, I spoke to the Consultant, he said that the cancer had spread so much that it was blocking her small bowel. There were two choices-to leave it and make “M” comfortable, or to operate and try to remove the affected area and bring out a new stoma. She was very weak but these choices were put to her at first she didn’t want the op, but after a while decided that it was her only chance to go home.
Which is where she wanted to die.
I sat and waited; thoughts ran through my head that I didn’t want to contemplate “please if they can’t do anything let her die on the operating table”. This wasn’t completely selfish; I wanted her to die without pain and not knowing what was happening.
I still carry the guilt.
The operation went ahead, and was reasonably successful, but the cancer was so invasive that the Consultant could only salvage a few feet of small bowel, and had to form an ileostomy- a stoma joined to the small bowel. The problem with this was that any food taken in would spurt out of the stoma in about 30 minutes; the bag had to be emptied every hour.
After a month “M” came home, it was the 30th June 2005.
The first thing that happened was that as soon as we got in and sat down the stoma bag burst, it went everywhere all over her, me and the sofa, she was horrified, but it was soon sorted, I carried her upstairs, got her undressed and sat her in the shower. When she was clean and dry we put a new bag on and I put her to bed, and then sorted myself and the sofa out.
She never left the bedroom again.
The days passed, friends and family came and went; she had to have a special mixture, which contained vitamins and other “good” stuff, the routine of emptying the bag became second nature. The nurses came and did their stuff, and kept her amused.
We would chat and laugh about things long ago; we had been together for 37 years and there were a lot of memories.
On Friday the 29th of July our GP appeared out of the blue to see “M”, I think it was a goodbye, as I have said he was fond of her. I realised then that it would not be long.
At about 3.00AM on Saturday the 30th, I woke up. “M”s breathing had changed. It was long and slow, I knew what was happening, I had seen it before. This was the end.
I made her comfortable, her eyes were half open, and she would smile when I talked to her, but there seemed to be no conscious awareness.
I waited until a decent hour and called her brother, he came straight away, and “M” smiled when she heard his voice. I also called the nurse, who came as soon as she could.
It was a very hot day so I kept the windows open and the curtains pulled back. “M” was an outdoors person and loved the summer, at about 3.00 PM I told her brother that it could take hours yet and he should go home, I would call him when it happened.
At about 3.05 I laid on the bed and took her in my arms, I had lit some candles and put a Simon and Garfunkel cd on, they were one of her favourites.
“M” must have waited to be alone because she suddenly relaxed and stopped breathing. It was over, I don’t think there was any pain, she had been very peaceful, and died with the same dignity she showed in her life.
“It is not only for what we do that we are held responsible, but also for what we do not do”
John Baptiste Moliére
Angus Dei on all and sundry
Angus Dei-NHS-THE OTHER SIDE
Angus Dei politico