I'm posting this this story in the hope that I might get some unbiased advice, I would be grateful if you could take time to read this post to the end, I appreciate it's a long post but I have tried to keep it as brief as possible whilst giving the facts. I would then appreciate your opinions.
Just over three and a half years ago after Suddenly being taking seriously ill at the age of fifty, My lovely wife Was told she had terminal cancer. She was being treated at a local major hospital.
She spent the next nineteen months under the care of their oncology department. She tried various treatments, some unbearable and others she managed. She never gave up hope and was always bright and cheery. The treatment she was receiving from the oncologist and the staff on the oncology ward was great. She was so positive she was asked would she allow them to make a video of her to be used to train others in the field.
This she willingly did, despite knowing she may not be around to see it, "this was the type of selfless person my wife was". She was working with adults with learning difficulties and continued to work throughout her illness.
Everything was going as well as it could for any terminally ill patient, then suddenly my wife took a turn and started having seizures. To cut a long story short she was admitted back once again to the oncology ward. We were told over the next few days the cancer had spread to her brain and she did not have long more to live.
Despite the seizures and our concerns she was discharged home. Over the next week my wife's condition deteriorated rapidly until one morning She collapsed on the floor and screaming in agony she asked firstly for me to call our GP, then the hospice nurse, then the hospital. Our Gp arrived swiftly and straight away contacted the oncologist that was covering for her regular oncologist and whom had discharged her. She told him she had called an ambulance and wanted her readmitted directly to the cancer ward due to her condition. He said that unfortunately she would as so many times in the past have to go back through A&E. Even the paramedics were not happy with this but it was out of their control.
It was now the last week of my wife's life and despite all the talk there is these days of caring for cancer patient and dying with dignity it was to be anything but.
After being admitted temporarily to another ward in the early hours of the following morning due to there not having any beds on the oncology ward I returned home thinking my wife was in good hands.
The next morning I walked on to the ward to find my beautiful wife sitting on a commode with the curtains open, clutching her head in agony, sobbing her heart out. She was in full view of other patients and a male visitor. She informed me she was in shocking pain and had not been given her morphine. I Immediately went to the nurses station and inquired who was in charge, the nurse who was in charge accompanied by a colleague came over. I took them to one side and explained that my wife was very emotional because she was dying, I also asked what information they had been given at handover from A&E. They came back over to my wife and despite both our pleas that she be given morphine the senior nurse starting laughing whilst tapping me on the side of the arm and said if your wife has a headache we can give her a paracetamol. I Immediately informed her my wife had multiple brain Mets and had been on morphine for the past eighteen months, again this was met with laughter and the promise of a paracetamol. I could not believe what I was hearing and Immediately ran from the ward over to the oncology ward and spoke with one of the junior doctors that new my wife, she said they were aware of the bad treatment of oncology patients whilst on that ward and her and a colleague suggested I go down stairs and make an official complaint and in the mean time they would call a doctor to the ward to prescribe my wife morphine. I said at that time I would not go to make a complaint as it was more important to be with my wife.
Because I am conscious of the length of this post I am omitting quite a bit, but basically I was concerned for my wife that evening but was not allowed to stay on this ward as it had a lot of geriatric patients. I went home and early the next morning received a phone call from a nurse on the ward to say my wife had been found unconscious on the floor in the early hours of the morning, I was told my wife was OK and not to rush in but wait until the morning. The next morning when I went in to see my wife the nurses seemed not to know what I was on about when I asked why my wife who was having seizures and had become confused had been left unattended and without cot sides on her bed.
My wife had now been moved in front of the nurses station and now had cot sides. She had a large lump on the back of her head and a black eye. The staff kept asking her what had happened. That day the oncology doctors came over and promised as soon as a bed became available on the other ward it would be hers. They then went outside and spoke to the nurse about her treatment . My wife told me to take pictures of her injuries and I did. That night at handover I was sickened when I heard the nurses chatting at the station and heard one telling the other how the doctors had dared to tell them how to look after my wife and the response from one was "she shouldn't be on this ward she's an oncology patient". Again I had to go home.
The next day my wife had been transferred to the oncology ward and her condition had really taken a turn for the worst, she was in agony and the cancer had gone to her spine. The palliative care team were called and they started trying more powerful drugs in syringe drivers.
That morning I was taken to one side by the oncologist and told my wife could now die at any time, I was asked if I wanted her transferred to the hospice, I said no as my wife had told me she did not want to die there, she had requested to be at home. I was informed this would need to be arranged with the local authority and may take a day or so.
From this day on I was allowed to stay twenty four hours a day in the room with my wife. Again keeping the post brief I will describe the last few days of my wife's life, something that was not a rehearsal for her.
Both me and my family started to notice that all the familiar staff my wife had got to know over the eighteen months were being replaced with agency staff. On the first night I stayed I was horrified when in the early hours of the morning the door opened and a nurse came in, she pointed at my wife in the bed and said "what's the matter with her?" this really upset me as she was one of the nurses looking after my wife yet she seemed totally uninformed. I told her I had been told my wife was dying and to my complete dismay she started within earshot of my wife to say I should not listen to the doctors that god decides who and when someone will die and that she had seen it time and time again and witnessed people going home well. I was drained and just asked her to leave the room.
The next day my wife was slipping in and out of coma, she was quite uncomfortable and because she was at risk of bedsores they said she needed an air mattress, this was delivered to the room around 4.30pm and left on the floor and despite our requests was not fitted that day. At around three in the morning I had to call the nurses in as my wife had severe diarrhea, they asked me if I could hold her standing up whilst they changed the sheets. I mentioned the air mattress so one of them started to fit it, she tried it one way then another then laughing said to the other "have you ever fitted one of these?" when the other said no she put it back on the floor and said let the day staff fit it (this despite the fact my wife was in the last days of her life)
The following night my wife was left all night without being touched or re positioned. The following morning a nurse came into the room with a washing bowl and toweling at 8am put it down and said I will be back in a minute, she then left and did not return again till 10am, this time she had a young nurse with her and said they were now going to wash my wife and make her comfortable. So I said I would go to the waiting room and give them a bit of space. When I returned twenty minutes later with my sister we found my wife had not been touched, the bowl and towels were still there but the staff had gone again. At this stage my sister was getting annoyed that my wife had not been moved since the day before and was not even having her basic needs met. I was just numb that week and suggested we just give them a little time before complaining. To our utter disbelieve it was 2.30pm when she again returned this time accompanied by two others, they all raced in and up to the bedside with two of them clearly in the middle of an argument that resulted in the male nurse banging the table and saying he was going to the toilet and then storming off into the bathroom in my wife's room, followed by the other two storming off again. (this was the dignified treatment of a woman in the last days of her life)
I ran from the room straight to the matron and told her exactly what had happened and how I now felt they did not want my wife there and that because I had not moved her to the hospice I felt they were almost washing their hands of her. I said I wanted arrangements made for her to be taken home Immediately. I also said how annoyed I was that as my wife lay dying she had to listen to them banging and arguing with each other. I was then informed the oncologist would not agree to my wife's transfer as he did not believe she would survive the journey. It was then agreed my wife would now be nursed by the staff she knew and who worked regularly on the unit.
My lovely wife passed away the next day with us all around her and thankfully with the nurse she knew looking after her.
Once again to keep this brief after my wife's funeral I made a full formal complaint to the hospital, I also requested full copy's of my late wife's notes. These I received and whilst reading through them I was horrified to find notes that had deliberately been altered and others that had been falsified .I found that on the day I found my wife crying in pain for her morphine, forms (called intentional rounding) that had supposedly been filled out at my wife's bedside asking "are you in pain?", "is there anything we can do for you?" had all been answered No for that morning and afternoon, but since I had complained that day some one had altered them badly changing some of the answers re: pain to Yes. These forms had been filled in by two different members of staff and had two different initials.
Whilst reading the notes for the night my wife was found on the floor, I first thought I had been sent another patients notes. Because the night notes for that night stated my wife had been given her morphine, had been mobilizing OK by herself and had slept well throughout the shift (the shift finishing at 8am the next morning) Whilst my wife had in fact been found on the floor around 1am having banged her head and face, she had been treated by an on call nurse practitioner whom had requested a CT scan to check for internal bleeding and for my wife to have hourly checks. It was only because this nurse wrote in the files and timed them for 1.30am that it showed the other nurse notes had in fact been made up. This lead me to believe that because this ward had a lot of geriatric patients (some with dementia) there was a systematic failure to adhere to correct paperwork procedures as laid down by the nursing & midwifery council and this lead to my wife not been given her morphine, the night staff having not been made aware of her condition and the need for cot sides. Intentional rounding sheets not been filled out at the bedside of patients, night notes being written up in advance etc.(the care quality commission even found that patients and visitors alike would not recommend this ward)
I Immediately brought the false paperwork to the attention of the staff dealing with the complaint.
Well now to summarize, the investigation has been ongoing now for nearly eighteen months. The hospital have had different senior staff working on this and I have met with the acting deputy chief executive and all have so far unreservedly apologized for all what happened.
Firstly they were adamant that no member of staff had called me to say my wife was found unconscious, as apparently this would have been documented, however recently after their telecommunications department traced the call to me that night they have again said this should not have happened without it being documented and apologized.
From the beginning they have asked what I would like to see come out of this complaint?, they have said they have shown my complaint to all the staff on both wards concerned I have said all along that I was not looking to take legal action as I never want this to be about money.
All I have ever asked for is that they find the details of the staff member who refused my wife her morphine, the nurses or members of staff who altered the notes, the nurse who wrote the false night notes, the nurse who came into my wife's room telling me to ignore the doctors, the nurses who could not fit an air mattress and the nurses who did not clean my wife but then came in arguing by her side and that they talk directly to them and in the case of the false notes a note is made on their record, because I believe this may make sure it never happens to another patient.
But so far all I have ever been told is that they are unable to tell who the staff were that altered the notes despite the initials ,however at a recent meeting a senior member of staff in frustration said "it is normal for nurses to make mistakes and not initial them whilst under pressure" (this is in complete contrast to what the nursing & midwifery council say) she has since retracted this in a recent phone call when I said I may now go to the Media.
In relation to why my wife was left with no cot sides on her bed it has been established that her assessment was completed incorrectly.
In relation to the nurse who wrote the false night notes I was told early on in the investigation that she had left and they had no forwarding address or details for her.
Then later on in one of the meetings it was let slip that I should not worry as she was no longer practicing as a nurse. When I asked how they new this if they are not in contact with her they said they had heard it from her ward sister. Subsequently at another meeting that included her ward sister, she said she new she had moved to Scotland to start a business, but she said that she had words with her before she left and had taken a statement. As soon as I said I wanted a copy of the statement, she all of a sudden became a bit unsure if she had written one and sure enough it later transpired it did not exist.
After I insisted I was giving her name and advised that I could report her to the nursing & midwifery council myself if I wanted (this despite the fact that it is there job to do this, not me the widow)
When we did look up the name we could not find it, but could find a similar name for a nurse working at another London hospital, when I went back to them they apologized and gave me the correct spelling and this matched this nurse.
As for the nurse who came into my wife's room in the middle of the night, they again said they can not trace who this was. I have even asked if they have checked with security to make sure there is not someone roaming the wards at night dressed in a nurses uniform
Preaching religion.
Again as for the nurses that treated my wife in such an un dignified manner and came into her room arguing they say the were agency and untraceable, as apparently were the ones who could not fit an air mattress .
At one of the recent meetings they produced some paper work to show that they themselves had with the authority of the chef executive carried out a quality commission type inspection of both wards. This was to reassure me they were taking things seriously, however I could not believe it when I obtained a full copy to see that again a poor lady was found on a commode with the curtains open and an assessment had not been completed.
Since my wife passed away I have been unable to grieve properly with this complaint hanging over me. I have felt as if the hospital whilst apologizing and even asking if I would be prepared to speak to groups of doctors and nurses about my wife's treatment as a training aid, because in their words "it was so bad" has appeared to want to protect the staff leading me to believe that things are so bad in the NHS that they are even afraid to discipline the bad ones for fear they will leave.
What hurts me the most is that they say the hearing is the last thing to go in a dying person. I have to live knowing my wife would have heard all this behavior. I also now feel shocked that I did not do more in the beginning to stop this happening and that I did not get my wife home.
Despite having bereavement counseling I have now ended up suffering with depression. I have not worked much since my wife's death and the strain of having to deal with this is now getting the better of me. I do not feel that I should have to start contacting the nursing council to do the hospitals job, I have also had advice from people high up in the nursing profession who say it is absolute rubbish to say that the hospital cant tell me who the staff were looking after my wife, as one said "if there was a serious incident that involved the police they would soon be able to identify them"
Furthermore after reading a paper written by all concerned with patients dying with dignity including Macmillan called one last chance to get it right, it highlights they got several things wrong.
It is for that reason I am looking for advice. Do you think I should contact the media? And do you think they would run a story like this? As I say I have all the paperwork and photos
Of my wife's injuries. I just feel that despite the hospital saying they are prepared to meet me again I am just banging my head against a wall. I feel the only way now is to shame them into action.
Once again I have for the purpose of this post left some things out, if admin is happy I am more than happy to name the hospital.
Thanks for taking the time to read this.
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