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Thursday, October 24, 2013

Poor Excuses and False Assurances

"An excuse is a skin of a reason stuffed with a lie." ~Billy Sunday

  How do I even begin to tell of the past 48 hours? Those of you who are British and have had satisfactory dealings with the National Health Service (NHS) will find our story utterly unbelieveable.
   Everywhere I turn lately all I seem to get are excuses for incompetent behavior and poor customer service, or someone ringing their hands while they assure me things will change. I'd frankly like for the excuses and hand ringing to stop; it would be refreshing to see someone actually step up, take responsibility for the issues and problems and take direct action to ensure these things do not continue. For myself, I am shocked, in shock and under so much stress I am living minute by minute so the stress doesn't eat me alive.
    On Tuesday the 22nd, I was surprised to receive a phone call at 10:30 am from a ward nurse updating me on Les' condition. She said he had been up walking twice, had bathed, was wearing fresh pajamas, had eaten corn flakes for breakfast and seemed to be doing better. When I arrived Les was tired, listless, and quite uncomfortable, his belly bloated and tight looking. The junior surgeon came around while I was there and inserted a rubber drain in Les' stoma to draw off wind which he assured me was the likely cause of his swollen, bloated feeling. Les asked if an x-ray might be in order and junior surgeon replied, "Well an x-ray would actually tell me less than what I can learn just by looking at you."
   I also asked for the cannulas to be moved from the top of Les' right hand near his wrist because every time Les bent his hand it set off the medicine pump alarm and it stopped feeding him pain meds. The staff generally ignored the pump alarms which were going off all over Les' ward and left them to beep interminably. I was told by a junior doctor that "someone" would look into moving the cannulas.
   Les was also now on Nystatin which is an oral antibiotic/antifungal medicine. He has thrush which is a yeast infection in the mouth. It makes everything taste like crap and while the Nystatin will address the infection, I told Les to stay away from sugar because yeast feeds on sugar.
   The charge nurse begged to differ; the infection was caused by all the meds they've been giving him and sugary desserts and hot cocoa drinks made no difference at all.
   Just as sugar is cancer's favorite food, it is the favorite food of many bacteria and viruses. I didn't say his thrush infection was caused by eating sugary dessert--I said the sugar feeds the infection, and let's not do that.
   As usual with allopathic medicine, the mindset is just to throw a nuclear bomb at the disease/illness/infection and disregard the body's attempt to fight it. Les' body is already working overtime to heal from surgery and the medicines they are giving him are very hard on his liver. Why make it necessary to medicate him even further in order to beat the thrush when cutting out sugar will allow the medicine to be more effective?
   I stayed late Tuesday, stretching out my visit to three hours. I didn't want to leave Les because he was complaining of feeling bloated and his belly was beginning to swell. No one had anything to say about this except "this is to be expected after surgery like you've had, etc. etc. etc." 
   I arrived back to the boat at 7:30 Tuesday evening to find Maffi and Molly breasted up next to NBVal, his boat light a welcome site cutting through the darkness. Sadly, I'd missed Kath and Neil on NB Herbie who moored briefly behind our boat and left me a lovely message. Apparently I also missed out on meeting a lovely anonymous couple who follow our blog and happened to be in the area, hoping to say hello. Maffi invited me to dinner at the Cow Roast Inn. I hadn't eaten since the day before so I gladly grabbed up a torch and off we went. The food was good, the conversation and company was terrific.
   Maffi and I chatted over tea and coffee in the morning while I finished making a pot of homemade chicken soup and the marine engineer Darren worked on our alternator. Oh yeah, the alternator crapped out on me Monday. Deader than a doornail. I hadn't told Les; after all there isn't anything he could do about it from his hospital bed. I moved money from our savings to checking in preperation for the damages and tried to ignore the growing pile of dirty clothes breeding in the wardrobe. (For those who don't live on a boat, the alternator must be on and our engine running in order for the boat system to handle the high electricity demand placed on it by things which draw a lot of wattage like the washing machine and the juicer. Ours is a Pure Sine Wave 3000 watt invertor and they cost thousands of pounds to replace.)
   I was lulled by a fairly quiet night into thinking I would see Les in the afternoon and he would be a little bit better; perhaps he might even have scored some sleep. I said goodbye to Maffi and headed off for the bus to Watford with a small thermos of homemade soup for Les. I decided to arrive fifteen minutes earlier than 2 p.m. thinking he would appreciate having his hot soup nearer to lunch time. 
   As soon as I came up on the ward I knew something was amiss. One of nurses rushed over to me saying Les had a bad night and the doctor had ordered an NG tube (Naso-gastro tube) inserted. Les had been moved to a new area and would I please wait outside the ward until they were done with the procedure?
   The junior ward sister (junior charge nurse) Marian came and got me. She has been a bright spot in Les' care and as far as I can tell is one of the few involved in his care who are competent and compassionate. As we walked into the ward Marian told me Les had a very bad night but she got the NG tube in and I could see him. 
   Les' bed was now in an open bay right across from the nurse's station. I pulled the curtain away and when Les saw me he broke down crying. His eyes were wild--his face drawn with agitation and fear. I threw down my back pack and put my arms around him, holding him while his body wracked with sobs.
   All Les could tell me in between crying and catching his breath was that he lay in agony all night, pain so bad he could not keep from crying out. The nurse on duty wouldn't answer his calls or help him. Finally he was sent down to x-ray by a doctor who then ordered the NG tube and inserted it. (Revised for accuracy on 10/25/13).
  When Les woke later that morning he was thrashing about and the NG tube pulled out so Marian had to repeat the procedure for the third time, but at least she knew how to do it properly and with a minimum amount of pain to Les. She's a very good nurse indeed.
   Les was so agitated and wild as he told me his story in fits and starts I knew I was missing some pieces and I had no idea to whom I should go to find them. This is when Les' old ward mate, a sharp eyed, quick witted Scotsman named Stephen, came over and sat with us. He explained it all as I sat listening in shocked disbelief...
   Tuesday evening, October 22nd, the hospital was short staffed on the fifth floor. To cover the night shift a temp agency was contacted and temp nurses staffed the ward. The charge nurse was a man from Kenya who was not fully fluent in English and apparently understood even less. 
   Stephen watched in horror as the night's events unfolded and finally when he could take it no more, he took things into his own hands. Bear in mind this man is fifty something years old, and has been through chemotherapy for esophageal cancer, followed up with surgery which removed a lung, several ribs, his esophagus and remade a new esophagus and stomach from some of his intestines. He has been in hospital for ten days now. Stephen's bed was located across the ward room from Les, about 8 feet away. 
   Stephen said the Kenyan nurse was completely out of his depth, unable to help any of the patients, and so he simply ignored call lights and patients calling our verbally for help. Les woke in agony, his belly stretched so taut he thought it might burst. He "lay in this state for nearly eight hours, begging the charge nurse to help, to get a doctor"--to get somebody please!!! 
   At one point Les became completely tangled up in all the lines running into him: IV pain med, IV  fluid, bladder tube, abdominal drain; he couldn't move without tearing something out, his pain med pump packed up and quit working and the alarm was ignored all night, medications were disbursed late to paltients because the Kenyan and his minions who were also temp agency nurses could not establish order, no one competent was in charge, and chaos reigned.
   Finally Stephen could not stand to watch Les' suffering so he got out of his bed dragging his IV pole with him, and went over and started untangling Les' lines. The charge nurse ordered Stephen to stop and get back in bed and Stephen refused to do it. They had words, and the nurse walked out of the ward and left Stephen to do his job!
   Earlier in the evening the elderly gent in the bed next to Les needed to pee but had no urinal. He asked the Kenyan for a urinal. The nurse stood in the middle of the ward room, glanced around and replied, "I don't see any urinals. I will have to go find one," and walked out. He did not return for forty minutes. When the nurse came back to Bay 6 he did not have a urinal in hand. It seems he had forgotten all about it. The gentleman was in severe distress now and asked again for a urinal. The charge nurse said there weren't any and turned to leave again. Stephen blurted out, "Hey, I am on a catheter, he can have mine, I'm not using it," and handed his packaged urinal to the Kenyan who refused to take it.
   "Oh, no, no. He cannot use yours. I must go and find him one." The charge nurse left the ward and Stephen got out of bed and gave the old gent his urinal. 
   Stephen has no idea who called the doctor that suddenly showed up in the wee hours to take Les down for x-rays, but Stephen did say the doctor was angry and upset at the state of affairs on the ward. He was also not impressed by the cannula placement in Les hand and inserted new cannulas further up Les' arm.
   Apparently when Les' surgeon made his Wednesday morning rounds it was decided Les' bowels are not awake and functioning yet after all, so Les has been ordered off all food and fluid by mouth. Several cups of bright green bile were pumped from Les' stomach that morning, easing the bloated tightness the junior surgeon assured me the afternoon previously, was "probably just wind." As soon as the shift change took place at 8 am Stephen found the charge nurse (Ward Sister) and told her exactly what occurred. By the time I arrived, order had been reestablished. I stayed all day Wednesday and Stephen's lovely partner and her friend offered me a lift home after visiting hours ended at 7:30 pm. It turns he lives nearby in Tring.
   As I sat by Les' bedside Wednesday afternoon he drifted off to sleep only to jerk awake with fear in his eyes, looking around the room until he saw me, upon which his lids would slide shut. This happened three times. Les thrashed awake one last time, his brown eyes found mine, a small smile played across his lips, and he closed his eyes and slept, knowing he was safe with me nearby. I sat for two hours, tears weeping from the corners of my eyes and sluicing down my cheeks as I watched Les sleep; his forehead creased, frowns chased across his mouth, his fingers jerking, his cheek muscles twitching under his skin. 
   Back aboard NB Valerie, I started the engine (my neighbors know the situation and have graciously consented to my running the engine for an hour at night if I come home late from visiting Les), brought in some wood and coal, scraped out the ashes, started the fire, and once everything aboard the boat was in hand I climbed into a scalding hot shower and balled my eyes out, leaning against the bathroom tiles, sobbing until I couldn't catch my breath. 
   I visited the Patient Advocate Liaison's office today. I was told I could make an informal complaint which would be addressed by the Ward Sister. That seems totally irrelevant to this situation. The ward sister on the day shift was not in charge of the night shift. She is not responsible for what took place and she has already assured Les "that nurse won't be back on this ward again." But that is not enough. Of course the PAL is an entity of the NHS which I believe will cover its backside and leave British patients to pay for an ongoing litany of egregious errors and misconduct. Lives were endangered by the incompetency of the people hired by the NHS to cover the shift on Les' ward Tuesday night. 
   When I saw Les today he broke down and cried twice. He feels like he is imprisoned in an asylum and he is frightened he won't recover because of the incompetence of the surgeons, nurses, and staff who have been responsible for the decisions regarding his care--or the overt lack of it. The paper I purchased for him in the hsopital store ran the following headline story: "NHS Targets and Secrecy are Hurting Patients, Doctors Warn." The BBC headlines cried: "NHS Whistleblower...Faced Bullying culture."
   A half an hour after I arrived to visit today, Les' IV fluids ran out and his alarm went off. I timed it. The alarm ran for 22 minutes as staff at the nurses' station only feet away ignored it completely and only when Les buzzed the call light and pointed to the empty IV bag did anyone replace it and shut off the alarm. This horrible experience has left a scar on us both that may never heal. We face two more operation in the months to come and I do not know if I can face up to them at Watford General Hospital.    


Carol said...

Hi Jaq, my heart bleeds for you. Ignore the PAL, the complaint should be written and sent directly to the hospitals chief executive Samantha Jones - you could even comment on her blog -- (

There is a list of the hospital board members on the hospital website

They will have a procedure to follow re the timeliness of reply this info will also be on the website. You really do need to start the complaint as soon as you can find a few minutes to start the letter and follow it up as and when you feel the need to inform them of the catalogue of events that you and Les are experiencing.

Along with all your friends we feel helpless and wish that there was more, something, anything, that we could do to make the situation you find yourselves in easier.

With you all the way, Carol and George.

Andrew said...

Also you could tweet @SamanthaJNHS and send her the link to this blog - I did as soon as I had read about the situation.

Anonymous said...

I think the previous comment from Carol says it all.
Hope to hear that today has been better. xA

Nb Yarwood said...

I have sent an email to Jeremy Hunt, Minister Of Health with a link to your posting. Like any reader of your posts I am appalled, angry and upset about what you and Les are going through. Frankly I would like to take the complacent incompetent nursing staff of that ward and drown the lot of them..
Hoping that things get better for you both and Les recovers asap and can put this awful period behind him.

Mich said...

Hi Jaq,
I have followed your blog from day one. I am so very sad for the way Les and yourself have been treated. Three years ago my husband was admitted for removal of gall bladder, a lack of nursing care following the procedure almost cost him his life had I not insisted that I stayed with him. For three days I refused to leave the hospital. I slept at his bedside and ate in the hospital canteen. I would not take no for an answer and still believe that my husband is still with me today because of my actions. If you feel as though you need to stay with Les then do it. Your story is truly horrifying. Our thoughts and prayers are with you. Luv Michelle and Barry

Anonymous said...

Dear Jaqueline and Les
I, like many others, am appalled by your story. In this country many of us set great store and are extremely proud of our health service. It hurts on many levels to hear this tale of lacklustre and incompetent care. Others have made suggestions and taken direct action on your behalf. I do hope you take the opportunity to complain at the highest level when you feel able to, it is the only way to get things out in the open and blast apart some of the myth. I work in the health service and would be more than happy to help in any way I can should you require.
My prayers are with you
Julia nb Even Balance

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs