So your husband is in hospital fighting for his life, what next? Well I found myself dealing with things one at a time in kind of an automatic mechanical way. I made lists of things I had to do which gave me focus and meant that even in my emotionally wrecked moments I could cope. There was a lot to deal with, telling Hubby’s family, friends, sorting out the medical insurance, sorting out packing up of our possessions, paying up utility companies and of course, there was work, where I was still expected to turn up every day.
If you are lucky, you will have a personnel department that makes some sort of pretence that they care. I did not, no moral support, not even kind words; luckily, the client I was seconded to, was more understanding and let me leave my desk at regular intervals as appropriate to deal with everything.
At this time, I was living at the Hilton Corniche and would like to record my thanks to the management and staff for their support and kindness to both Hubby and I at this horrendous time. They even sent a huge bunch of flowers to Hubby. After a month in the Al Noor Hospital, the local doctors decided that they could do nothing else to help Hubby, he was then air lifted back to the UK.
The airlift procedure was an interesting experience, our gratitude to Emirates airlines that do this very well. We travelled from Abu Dhabi to Dubai in an ambulance, accompanied by two International SOS Nurses. Hubby plus the two nurses checked in kerbside, the ambulance then travelling through the back of the airport direct to the waiting plane, our luggage and me going through the normal check in procedure. I boarded the plane early so that I could ensure Hubby was comfortable and settled. The back end of the economy section was altered so that a stretcher bay was erected on top of six folded over seats. It was a very clever arrangement that made the journey bearable for him. They even had a privacy curtain for him, which was handy as he was the centre of attention for some fellow travellers. This nosiness, stare at you, in-your-face trait some of those from the Indo-Asia and the Middle Eastern regions was one that we had found to be a less endearing quality that we had previously commented on during our time living in the UAE. We arrived in Manchester seven hours later, where an ambulance transported us to a local hospital in Lincolnshire for further evaluation.
July 26th 2007, Hubby returned to the UK still extremely sick. The local hospital openly admitted that they could not cope with Hubby. Eventually he ended up in a specialist NHS Spinal Unit, which I will save their blushes and not directly name, as they were overall, absolutely, appalling.
One of the main problems I have found with UK hospitals is that they forget that the patient has a significant other or relative that still has to maintain a meaningful relationship with that person. I was bombarded, with a bewildering array of rules and regulations, where compassion and empathy would have been more appropriate. Hubby was terrified and wanted me to be with him when he wanted me, but the rules and regulations, no she can not stay with you, no she can not visit you in the morning, no she can not help you with your personal needs. No, you can not close your curtain for privacy. They were masters of telling you what you were not allowed to do, but hopeless at informing how you were supposed to transform into a carer of a Tetraplegic.
Hubby told me later of the fear that not being able to move invoked and having his call buzzer taken off him because he pressed it once too often on nights. Of not being dressed in time for his one and only chance of getting physio that day. Nurses writing down that medication been administered, when in fact it had not. So when I did visit I was met with this angry person who is not only coming to terms with the fact his body does not work as it should any more, but is up in arms with me for leaving him with this uncaring lot of folks who are supposed to make him feel better. You know it is your entire fault, or so it leaves you feeling.
Hubby spent a few days on the spinal unit being reassessed, meeting various members of the team, surgeons, nutritionists, pharmacists, doctors, physiotherapists and nurses. The Neurosurgeons decided that Hubby needed a Cervical Corpectomy and reconstruction of his neck bones.
This procedure involved two operations, one going in from the back of the neck, placing titanium rods and bolts across the vertebrae that had become unstable. This left Hubby with two lumps (the bolts) that can be felt at the back of his head, even today. The second operation involved making an incision along his jaw line, cleaning out the puss from an abscess, then creating a cage structure into which bone grafted from Hubby’s hip was placed to fixate his bones at the front of his neck. After these operations Hubby was at deaths door. The team were unable to release him from his breathing tubes following intubation during the operation because his already weakened lung muscles had stopped functioning independently.
Every day I visited and sat with Hubby, talked to him whilst he was semi conscious, tubes, drips and machines helping him with his every breath, monitoring every pulse, beat and brain activity. Days went by, then weeks, every day the same routine I would drive from a near by hotel and spend all day with him. I spent so much time in that room that by the time of his discharge from the Intensive Care Unit, I was fully conversant with, drips, cannulae, ventilators and indwelling catheters.
I have some very peculiar occurrences to report from our four month NHS hospital stay, some so incredible I will have to leave you to believe me or not as they did happen. The first happened in Intensive care following Hubby’s operation to reconstruct his crumbling vertebrae. A nurse of Caribbean origin, looking after him on nights, entered his room, “Hubby, Hubby, I want to do the black mans magic on you” , a terrified paralysed Hubby, could do nothing as this nurse quietly chanted his voodoo and waved around the articles of his belief. The next day Hubby told me what had happened; no one believed him and blamed the medication he was on for delusion. Something terrified him that night; arrangements were made to make sure this particular nurse was kept well away from him for the rest of his stay. Another instance was not so bizarre but serious nether-the-less. Hubby had a medication pump fitted following an operation to remove his right cancerous kidney. Yes, poor Hubby was also diagnosed with Kidney cancer while all this was going on. During the early morning, the pipe became dislodged from the pump unit, denying him the pain medication he needed and leaked liquid all over his sheets. We asked the nurses to fix the problem, but they stated, only the anaesthetist was able to see to this particular piece of kit. Three hours we waited for the continually paged individual to turn up. When he eventually appeared on the ward, he swaned around making his usual routine visits before presenting himself at Hubby’s bed. By this time, I was about ready to swing for the guy as you can imagine. It is one of our regrets that we did sue this hospital for damages as later this would return to haunt us. I did though write a letter giving some feedback which was as usual swept under the carpet, as only the NHS knows how.
Hubby spent nearly four months in this hospital, I moved from hotel to hotel like some homeless hobo, everyday being at his side except for one short business trip to Sydney, Australia to spend 2 weeks with my new company. This was rather a painful experience as it gave me a glimpse of what our life should have been like. Anyway I was soon back at Hubby’s side. I would arrive at the hospital at about 09:00am every morning, walk to the other part of the main hospital building to obtain a newspaper, then back to sit in the café in the spinal unit waiting for the coffee to be available from the 10am opening time. I saw the same faces most days, many other relatives having to do what I was doing hanging around until the 11am witching hour when we would be allowed up to see our nearest and dearest. We sat swapping horror stories of how bad the staff were treating our seriously ill kin folk. Everyone had similar complaints. Patients becoming very thin not just through the injury but also because they could not get enough good food to eat. Patients in this longer stay unit were fed the same slop as patients in the rest of general hospital who would on average have a 2 week stay. Food was regularly missing, small portions, over cooked, cold, and generally unappetising. No wonder by the time we got Hubby stable enough to leave he looked like an advert for the Belsen Jews. Patients on one of the wards were treated very harshly and constantly told to do for themselves as they were on a rehab ward not an acute ward. This meant that there were many stories in the café of loved ones wetting themselves or falling out of their chairs with no help to sort themselves out. One father got accused of being a paedophile just because he was there every day for his daughter and helped her carry out her urine catheter regime. It was also a well known fact that a married staff nurse on this rehab ward made frequent trips on nights to the ward that Hubby was in to liaise with his pregnant nurse girlfriend. Un-professionalism pervaded all aspects of this unit.
Our main complaint about this specialist unit was the lack of physiotherapy provided when we understood that was the main treatment that Hubby should be getting to rehabilitate back into society again. We honestly believe that this unit denied Hubby the chance of being able to stand and maybe shuffle a bit, we are realistic to know he probably would not have been able to walk fully again. Hubby was lucky if he got 30 minutes of physio a week. The unit was badly managed and I personally put this down to it being run by a clinician rather than a professional administrator. He was a good surgeon / doctor but a lousy manager. I say this as I noted whilst there that the therapists at this fairly well equipped unit were not maximising the use of the equipment available. Therapy sessions were only run from 10:30 – 12:00 (1 ½ hours) then 13:30-16:00 (2 ½ hours) total of 4 hours a day per therapist, leaving equipment idol the rest of the time. They needed to stagger their lunch hours and starting times to maximise the use of the equipment and see more patients a day. It was very sad walking around this unit seeing people sitting idol in their wheelchairs with nothing to do all day when they could be formally and informally be contributing to their rehabilitation. There were many underutilised rooms where patients could have been playing games or such like to help with hand function, instead one such room had become an informal staff room for the cleaners. There was also a distinct lack of training facilities and information for long term carers. No where private to meet with lawyers etc. although there was the space. The most serious problem was the lack of team work between the nursing and therapy staff. There were also problems with hygiene on the ward as there were not enough sinks and outbreaks of C-diff and other bugs were a constant worry. Nursing staff tended to be hard faced and brutal. Hubby told me of his terror at being turned every four hours in bed regardless of his need to sleep and the very unkind way they had of performing this procedure. There was also a culture of bribery not money or anything of a large value, no their currency was chocolate and sweets. Overall I am surprised that people as seriously ill as those on this ward did not die, instead it is likely that they failed to reach their full rehabilitation potential placing even more of a burden on the long run on the community medical services that later we would find out were next to useless.
It is now October 2007, and even through all of NHS’ faults somehow Hubby survived all of his operations, and the poking and prodding. We were then lucky, as we had maintained our private medical cover, so with this and 35K of our own money I was able to get him transferred to a rehabilitation unit in London. Where an intensive physio program got him strong enough to push his own chair and gave him back some dignity and self-respect.