Our Story: Back to the UK

It is now May 2009. Gradually his involuntary spasms and pain became worse until we had to make the decision to return home. I knew I needed time to organise life back in the UK and booked Hubby into a private rehab hospital. Therefore, I packed up our life in Sydney and the flat over looking the river that I loved, booked the plane tickets and made all the arrangements we needed to move countries. Bad luck seems to follow Hubby and I, a week before we were due to get on the plane it became evident that the private rehab had decided not to take us on. I therefore started an email campaign with Stoke Mandeville for help in our case. We arrived back in the UK in May 2009 and had to find suitable hotel accommodation.

The UK is supposed to be a first world country, right? With access to services laws that protect the disabled. We had decided to settle back in Peterborough as it would be convenient for work for me in most probably London and has good access to Yorkshire and Birmingham. Also, some of our relatives would also only be an hour away in Lincolnshire. You try to find a hotel in Peterborough that has a wet room and is really wheelchair friendly. We eventually found one, well done Premier Inn, Lincoln Road. One hotel had a disabled room with a shower over a bath, with steps in the bathroom; one offered us use of the public changing rooms in their leisure centre as the only accessible bathroom in the whole hotel. We are not talking of small private hotels either, these are well known UK counterparts of US chain hotels. Disability Access regulations are routinely ignored in the UK and I could not seem to find anyone who seemed to care enough to do anything about it.

As some reading this book will know looking after someone who is severely disabled in ones own home is a challenge, try doing it totally unsupported in a hotel room for three months. We contacted the local services in Peterborough as technically we were homeless for support and help. We soon found that no one gave a jot that I was looking after a vulnerable adult with no home or support. For example, I dragged Hubby down to the housing unit at the city council; wheeling him over pavement surfaces that a third, world country would be ashamed. We arrived with Hubby in agony at being shaken so violently by the uneven ground, then to be told that the wait would be at least three hours plus the interview to see a local housing officer. I explained that Hubby is not allowed to sit that long due to his medical condition. We got no quarter given, just a direct phone number and email address given, from which we got no response. So again, we had to take matters into our own hands, we found a privately rented bungalow that was not suitable but would give us an address from which to access services. Now we went about getting ourselves a local doctor, district nurse and social worker.

Our first local doctor although being very sympathetic was not the most proactive or forceful at getting us the specialist services that we needed. He seemed to be at a loss when it came to talking to the specialists at Stoke Mandeville from whom we desperately needed help.

Since a spider had bitten, Hubby in May 2008 his condition had slowly deteriorated. Pain and spasticity being the biggest problem. He had slowly lost the use of his left arm and hand, his left leg hanging now like it was broken, his right so stiff that I had problems bending it for relief and exercise. No one had explained to us in any of the hospitals that Hubby attended that after the initial six months to a year his body would come out of spinal shock and would start to develop debilitating spasms, which now we know is the vein of people recovering from incomplete tetraplegia.

September 2009 the district nurses visited us in our temporary residence and carried out a continuing care assessment. We had to prove that Hubby needed on going nursing based care and not what they call social care. We passed this. This meant that a care agency would provide up to 24 hour care without a cost to ourselves, allowing me theoretically to return to work. Eventually in October the appointed company started. It soon became apparent that they were not suitable for Hubby’s needs. They had very little experience in spinal injuries and the associated medical complications. They were also unable to deal with the manual handling involved in taking care of Hubby. There are quite a lot of movements for example re positioning in his chair that can not be continually carried out using a hoist. Hubby’s spasms would slowly move him out of position and eventually would have thrown him on the floor. His feet need constant realigning on his footplates for the same reason. So after a meeting with the PCT manager in charge it was decided to stand them down.

In October 2009 we were re-housed at St Edmunds Court, so at last I had some where suitable to shower Hubby.

Our Story: New Land New Hope

It is now January 2008, seven months after Hubby’s injury, I have only managed to work part time for my new Australian employers and they finally pull the plug. We decide to go to Australia for a holiday, retrieve our belongings and give me chance to sort out my bank account plus monies owing.

Do not let anyone tell you that the airlines look after you and provide assistance when flying. We learnt the hard way they do not have a clue. We made the mistake of thinking shelling out money for a first class seat would guarantee treatment like royalty.

First mistake, many first class seats are pods with foot stools. So how is anyone supposed to use a sliding board to transfer from wheelchair to seat? Second, you need to stand up to change the seat to a bed. It was a disaster and Hubby got hurt during the man handling. Then to add insult to injury, on arrival, the chauffeur service sent a bus that Hubby could not access.

Once we got over the journey we had a fairly good time, I got my business concluded which gave us money to live on. At first we set ourselves up in a hotel in Chatswood NSW that I had previously stayed in. The room had a small kitchenette, roll in shower room, living room and one bedroom. It also had a little balcony that we used to sit on and watch the spectacular rain storms from. Later I managed to sort a new work visa and secured some more work by opening my own Management Consultancy Agency.

The good times were not to last, whilst up in the central New South Wales coast at Port Stephens, Hubby was bitten by a spider. The bite quickly became infected and turned into every spinally injured patient’s nightmare a pressure sore. Things deteriorated from there.

Gradually his involuntary spasms and pain became worse until we had to make the decision to return home. I knew I needed time to organise life back in the UK and booked Hubby into a private rehab hospital. Therefore, I packed up our life in Sydney and the flat over looking the river that I loved, booked the plane tickets and made all the arrangements we needed to move countries. Bad luck seems to follow Hubby and I, a week before we were due to get on the plane it became evident that the private rehab had decided not to take us on. I therefore started an email campaign with Stoke Mandeville for help in our case. We arrived back in the UK in May 2009 and had to find suitable hotel accommodation.

Our Story ; Airlift back to UK

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.

The road to becoming a carer - Our Story

In 2004, I had the fantastic opportunity of being part of something bigger than myself. I joined the mainly American based teams rebuilding Iraq using engineering projects. I spent two wonderful years in the country of Iraq, and hope I left the place a little better than when I arrived. In addition, I finally after a courtship of 16 years married my husband, Hubby.

2006, I briefly returned home to the UK and my very patient waiting husband. We then left the UK together so that I could pursue project management work in the UAE. We had about a year living together full time enjoying our marriage when the unthinkable happened. He got sick.

By June 2007 we were actively pursuing a move to Australia, a move to my next assignment and hopefully a new life. Hubby woke up on that fateful morning with a fever and stiff neck saying he felt unwell. Being the caring wife, I thought he had ‘man flu’ threw the bottle of Paracetamol at him, as I left for work. A few days went by and he did not seem to be getting better, so I rang our local doctor with the symptoms. Get him into hospital she said he may have bacterial meningitis. He managed to walk unsteadily the few hundred yards to the Al Noor Hospital. Over the weekend he had become dehydrated, unsteady on his feet and his face around his left eye looked numb in that it did not seem to move normally with the expressions on his face. They admitted him for further tests.

Al Noor Hospital is a modern city centre hospital in Abu Dhabi. Most patients have a clean single on-suite room with all the equipment usually found in a modern general hospital. I had no compulsion about admitting Hubby there as a few months previously they had admitted me and dealt with my acute appendicitis. Carrying out such a good job that I went back to work, sore but otherwise okay, only two days following the key hole surgery. Unfortunately for Hubby, he over the next few days after admission, deteriorated. During the night on about his third night in hospital Hubby tells me that he got up to go to the bathroom, dragging his drip pole with him, on the way back he slid down the pole to the floor virtually unable to move. He laid there for what seemed like hours finally managing to drag his non- functioning broken body back towards his bed and the buzzer to call for help. From that point on he had became paralysed from the neck down. Apparently some how he had contracted a Staph infection in his neck, crumbling his vertebrae and depressing his spinal cord.

Hubby spent his first days in hospital having scans, x-rays and blood tests. These tests came back positive for Staphylococcus Aureus and right kidney cancer. The hospital neurologist also thought Hubby had some age degeneration ( Spinal Stenosis ) of the spine so advocated a spinal operation called a Laminectomy to relieve the pressure on his spinal cord. This was the first of many operations Hubby was to undergo. I had the daunting task of signing a waver, as they did not have a ventilator available should the operation have complications and Hubby suffer breathing difficulties. The first of many decisions that had to be made, that Hubby was not able to fully comprehend the full consequences of, and would later in his down moments blame me for going along with. After Hubby’s operation he was still severely paralysed, could not move his arms as well as his legs. He also over the ensuing weeks developed mild pneumonia and had problems breathing as his diaphragm muscles had become affected, but not so bad that he had to be ventilated at that stage.

The staff, at Al Noor hospital were very kind and although they did not have the equipment they really needed such as hoists and bathing shower trays etc, did their very best for Hubby. We remember one nurse with particular fondness, Sir Percy we called him, a gay Pilipino, who had streaks of gold running through him. He even worked a double shift with Hubby on his last night at the hospital, making sure everything was just so for his new friend. Sometimes though during our stay equipment shortages did cause some anxious moments, on one occasion when transferring him from bed to wheelchair towards the end of his stay, the staff manhandled him so badly that they nearly dropped him on the floor badly wrenching his already weak left shoulder. Physiotherapy was also a strange experience with two very slightly built Indian ladies floating in to his room once a day to very gently stretch his legs and arms. Hubby still looks back on the little he can remember of his initial illness and now sincerely wishes that he had died at that stage.

This phase of any illness is extremely stressful for the person going through the illness and for the surrounding family, friends and carers. The medical profession take care of the patient, but what about you, the carer?

Stanmore Hospital Stay the Final Part for now

Wednesday 12th we got up early to make sure HUBBY had something in his stomach before what the consultant had told us was her main day with us. We proceeded to the spinal unit and put HUBBY onto the allocated bed. The consultant and intern arrived shortly afterwards to explain the procedure for the Baclofen test dose, which was to be carried by means of a lumber punch type injection. HUBBY was then turned onto his bad left side, so was no comfortable from the oft. Well firstly the intern had a go at finding the sweet spot between the vertebrae, poking the very long needle into his lower back, then the consultant had a go, HUBBY endured this for nearly an hour with short pauses for him to get the feeling back in his arm. HUBBY was sceptical about this procedure in the first place so I am there hoping against hope that they sort it soon or I know he will abort the whole thing. Eventually they decide the only way is to do the insertion with the help of x-rays. So off we all go down the cold corridors to the x-ray room. Pat slide HUBBY across onto the bed, try and hold him on his side but curled up as much as possible to open up the spaces between his vertebrae. Every time the machine moved it knocks his knees painfully, but this did enable the consultant to finally give HUBBY his test dose of Baclofen.

So poor old HUBBY was then returned to the ward rather bruised and battered to await for the medicine to take effect. It took about an hour to start working he said everything felt numb and he could no longer move his toes. The injection took so long to perform we missed yet another physio and OT session although both did come to see us. HUBBY stayed in bed at first so that blood pressure etc could be monitored. Which fell very low indeed, 68/38 at one point the nurses felt a bit concerned over and wonder whether he would be able to go for his scheduled x-rays. HUBBY said he was going no where anyways until he had eaten and so he did. The injection began to work as for the first time in two years he was able to lie in bed with his legs straight and cover them under some regulation hospital blankets. Mid afternoon he was able to be wheeled to his x-ray and for a change I did not need to be present to make sure his legs stayed where they wanted them. He had some x-rays taken of his neck, ankles and left knee. Both the rehab consultant and orthopaedic surgeon were interested in seeing the results. He was supposed to have a bone density scan but this got pushed out because of the time.

Afterwards HUBBY wanted to get up in his wheelchair, I was able to easily straighten his legs and noticed that the right one especially flopped over to one side making it rather awkward for me to put his socks and shoes back on. Very strange for me having this totally flaccid body now in front of me not fighting my every effort to get him dressed. HUBBY did look a lot straighter in his chair and even propelled it himself without falling over to his left this time. So to the onlooker the injection looked to be a success, we had found something that works. HUBBY was less convinced after the days events, not impressed with how long the lumber punch took, missing his bone density scan and the feeling of the two pieces of rubber he was sitting on that used to be his legs. Wednesday we were both exhausted and had one of best nights sleep for a very long time. It is a shame it was that night that I carried out the smaller sleep study, which was supposed to investigate whether I was experiencing problems because of my broken sleep.

Thursday 13th, we had a discharge planning meeting with all of the team present, when over what the goals of the week were, achievements and future work to be done. I thanked the team for the extra help they have given us due to previous bad NHS experiences. Soon afterwards HUBBY’s orthopaedic surgeon came to visit and made it clear that yes HUBBY did in normal circumstances need a total knee replacement but he wants to wait and see whether he agrees to have the pump fitted and then starts to carry out standing regimes on his legs. At which time he feels it would be more appropriate to reconsider operating. The physio then came to talk to us for a while. After which we went to get some food, have a final session with the OT, hand over the keys of the GHU, catch our taxi back to KGX. Train to Peterborough and another taxi to home at St Edmunds Court.

Now back home HUBBY is being given some space to think about where he goes from here, to Baclofen pump or not that is the question my dear readers….

Stanmore Hospital Stay Part 3- serious medical stuff

Friday 7th January the physio met us at the Graham Hill Unit to update and assess exactly what is TDB’s level of injury. This is done with a series of touch and motor function tests. Everyone we have met so far has concluded that without TDB’s limiting spasticity / spasms he could be quite a bit more independent and have a quality of life that thus far has eluded him. After physio we went up onto the spinal unit ward so that TDB could be provided with lunch. Food at the hospital is still hospital food but is oodles better than we experienced at Sheffield three years earlier. They have availed themselves of a food service akin to Wiltshire Foods delivery where frozen ready meals are re-enlivened up in the microwave. This gives the patient some considerable choice on a par with a pub menu. In the afternoon we met up with the OT and trialled TDB’s new body brace. Whoops not a good session the brace was sticking into him in all the wrong places he shouting out in pain by the time he had been rolled into it, strapped tightly etc. The brace was sent way for some alterations to stop TDB’s manhood being squashed. This brace by the way looks like a piece of custom prop body armour from a roman epic except it is doll coloured salmon pink skin and plastic looking. It comes in two parts a breast plate and back plate joined together with white tapes that secure the person inside as tight as they can bear. When off TDB it really shows how twisted his back really is and looks like it belongs to a very strangely shaped individual indeed. I keep telling TDB it is a blank canvass that is crying out for a custom paint job but for some reason he is not impressed.

We have the weekend free of seeing medical people so split our time between meals in the ward, using the Aspire Café and resting up in the unit. We were going to try and get out to a local shopping centre but TDB did not feel up to it and Saturday was “Bowel Day”.

Monday 10th we awoke thinking we were to attend TDB’s MRI scan later that morning but this was cancelled. TDB was having some bladder problems so we asked to speak with his consultant which meant that we missed yet another physio session and our chance to get TDB on a tilt table. Later that afternoon we met up with the OT again had a more successful session with the body brace and had a left hand splint made up for TDB.

Tuesday 11th in the morning another session with the OT and straight after a physio session where TDB tried out a different type of sling for hoist lifting. He found he could just about tolerate this different design although he did say it squeezed some parts that men don’t like to be, but hey more progress made there. Early afternoon we retired to the G.H. Unit to carry out yet another “bowel day and shower” before preparing for TDB’s rescheduled MRI scan. We thought they we were going to give TDB general anaesthetic to make him flaccid for this as his twisted body does not fit well under this machine that requires the patient to lie as still as possible. So we were a bit surprised when they suggested they were going give TDB a series of Diazepam (Vallium) injections. A bit alarmed actually as TDB has had some rather nasty after affects to previously orally administered Benodiazepams. Anyways they convinced us this would act differently as it was straight into the blood stream. In some ways they were right, but it did mean that in the end he had to be administered 20mg in 5mg increments for it to work a little. TDB tells me the manual handling of his body under the scan was not appreciated and his head became jammed at one point because of his spine curvature and at one point the machine seemed to kick back by having an operational failure. Eventually they got it done enough for the consultant to see what she wanted. It is horrible seeing a loved one under the influence of these type drugs and having been there before with my mother I did not really enjoy reliving the experience. What do I mean? seeing someone slurring their speech, their eyes glazed with vacant look , they are there, but not wholly so. Like being out for a drink with people getting drunk, when you are not drinking alcohol is the nearest everyday occurrence I can relate it too. TDB was totally exhausted after this but insisted on retiring much to chagrin of the ward nurses back to his home from home on the GHU, for me to monitor him during the night for any of the bad side effects. That night TDB also carried out a sleep study looking for signs of sleep apnoea. This is carried out by having two belts across the chest and a carbon dioxide meter attached to ones nose, all of which feeds information back to a small computer unit. The input then downloaded and analysed. TDB actually for a change probably only got me up twice during the night to help with his legs where usually it is an hourly ritual.

Stanmore Hospital Visit Part3 - GHU

The Graham Hill Unit is looking a bit sadly worse for wear, it could do with a lick of paint on the outside no doubt being neglected because of the planned demolition for the new hospital. Bit surprised that there was not an associated disabled parking bay outside, but suppose most visitors come from the acute/rehab part of the hospital and do not have their adapted cars at this point in their stay. This adapted home does not purport to display the latest technology available in door opening for the disabled either as it opens with an inaccessible standard Yale door lock. The door opens on to a hallway with laminated floor, off which to the left is first a large open kitchen, 2nd the square shaped living room, first on the right the fully accessible bathroom suite, then a spare bedroom, and straight down the end of the hallway the main bedroom. Through out there are light switches at the right height for the wheelchair user, but still convenient for two legged carer. I did notice though that because of the electrical fittings laws, I think, all of the sockets were at the usual heights just above skirting board level and therefore inaccessible to a proportion of wheelchair users without trunk strength. If you are that disabled I guess the assumption is that you would have help. The Kitchen had counter tops where a wheelchair could fit under, the built in oven at an appropriate height etc. Kitchen design it seems to me has to be an individual design dependant on how much the disabled person cooks as opposed to the associated carer / family. The bathroom had a walk in shower, bath with automated seat, raised toilet etc. The wash basin I did not think worked well as the levers to make turning on the taps easier got in the way once the basin was filled. The levers should have been reversed so that off was horizontal with the back of the basin leaving room to wash in the sink as required, instead they could poke someone’s eye out when using the sink. The living room displayed the problems of buying furniture as two items had blocks fitted to make accessible, one of which the dining room table. Accessible tables the vein of my life, you want to eat out at a restaurant, and end up choosing on the basis of the table design rather than the quality or type of food. I refer to table feet design to allow a wheelchair user to stay in chair whilst eating allowing foot rests to glide over the top of rather than bang into. We were also disappointed that the TV only had the 5 terrestrial channels, If I had the spare money I would have bought them a £20 set top box. The bedroom had a gantry hoist over a hospital bed and an attendant put-me-up bed for me to sleep in. So much like our set up at home. Reassuring that we have not done something very peculiar at home. This was to be our accommodation for the next five nights.

Stanmore Hospital Stay Part 2

This small room with the luxury of a small flat screen TV and a recliner chair for me to snooze in. For most of our first night we both froze and I tossed and turned in the very uncomfortable recliner in between looking after Hubby’s legs. Eventually it got too much for him and we finally broke down and asked for additional heating. The staff surprised us yet again and duly produced a portable heater for us and not the it’s not allowed Health & Safety rigmarole that such a request usually elicits.

07:00am the next morning a nurse popped her head around the door and told us we were expected in the “plaster” unit between 07:30 and 08:00. So with no breakfast and not even a hot drink we traipse down one of the drafty sloped external corridors to the unit to be moulded for a brace that will hopefully help to correct Hubby’s horrendous posture. A discussion ensued as to how they were going to get Hubby as straight as possible to get the best result. So in the end because of his terrible leg spasms we opted for balancing over the edge of the plinth with me securing his legs whilst three others wrapped him in some sort of cloth soaked resin. This sets a bit like plaster of Paris which then he was cut free from. From this the Orthotics department make a body brace. By the time we returned to our room we were late for our scheduled Physio so opted for a cup of tea and some late breakfast. Well officially for Hubby only as they do not feed any associated carers even if working 24/7. The Physio then turned up we at least met her and had an initial chat about what the plans were.

Wednesday afternoon we had another session with the OT where we talked about posture and Hubby’s hand function. She also told us that we would be moving into an adapted flat on site for the rest of our stay so that I could continue to look after Hubby. In the evening after dinner we got on with the 3-day interval chore of manually evacuating Hubby’s bowels. Something must have gone wrong during the process, well we think so as we had to call out the on call doc as Hubby had some bladder problems which were very painful.

In the morning while Hubby ate his breakfast we first noticed the birds outside, an amazing collection of Blue Tits, Long Tailed Tits, a Robin, and other once common English birds all outside our window enjoying the bird feeders that someone had provided. I have never seen so many wild birds in one place.

Thursday we attended a physio and another OT session and had the afternoon to ourselves to move into the Graham Hill Unit our home from home for the next few days. To get to the unit you head from the spinal unit ward down a very long corridor, past the rehab gym, along the gallery of the Aspire sports hall, down the lift out of the Aspire building entrance, then walk past the outside of the very impressive zero entry Aspire provided heated pool. Then you are faced with a very unfriendly narrow sloping unlit zigzag pathway down to the unit. Not a very accessible pathway to the disability adapted show flat that is the Graham Hill Unit. Hope it doesn’t snow!

So far so good - Stanmore SCIU seems to be a good place to be.

Why do we bother planning stuff when every company out there seems to conspire to let you down? Tuesday 4th January we arose early to get Hubby ready for our trip to Stanmore Hospital, I had done most of the packing the night before, but still had to deflate and pack our Roho mattress. The Taxi was booked for 07:55 and of course no sign of it at the appointed hour even though it was pre-booked. I will not name the company as it would give them publicity that they do not deserve. They eventually arrive at the time of our trains departure time, so stress levels were at max when we eventually arrived at the train station.

The East Coast train staff were wonderful sorted us out another train and changed our care workers ticket with a minimum of fuss. Whilst I telephoned Addison Lee our Taxi company at the Kings Cross leg of the journey to rearrange that journey for an hour later. Our grateful thanks to them for accommodating this late change without an extra fee. We boarded the 125 diesel train and for a moment thought his wheelchair would not fit through the vestibule doors, it was a very tight squeeze but we managed in the end.

The journey for Terence in the Taxi on top of getting cold was of course very painful, London roads being full of pot holes especially after the recent spell of cold weather. Poor Taxi driver got the sharp end of Hubby’s tongue as when loading up he caught his very painful feet. All was well by the time we arrived at the Spinal Unit.

After announcing our arrival, first job as it was noon was to make sure Hubby had his urine catheter sorted, last thing we needed was an emergency Autonomic Dysreflexia attack so soon after arrival. It being lunch time on the unit we were made to wait a short while before being fetched by one of the senior nurses. One thing we noticed straight away was how friendly everyone is. We were lead to our cubicle spot by one of the rust coloured polo shirted ward carers. A grade of staff that carry out many of the functions care workers do in the community, changing sheets, toileting, feeding, clothing and generally helping the disabled in daily life type activities. Fantastic idea who ever thought that one up, leaving the nurses to concentrate on nursing duties. He helped me unpack our Roho mattress and get it on Hubby’s allocated bed. Hubby looked around this four bed bay and asked where I was going to sleep since I needed to be there for him to straighten his legs during the night. A meeting had been arranged with the senior nurse and OT so I knew we would be able to explain the situation there.

The Royal National Orthopaedic Hospital at Stanmore is currently having a new building built and I am sure that the staff would say not before time. Currently the hospital is a collection of refabs, port-a-cabins and traditional buildings linked together with drafty external corridors with slopes that are extremely unfriendly to the wheelchair user. I have seen better accommodation in the third world countries that I have worked in. The bay we were in had one sink which was out of use due to being repaired by workmen using hardboard and smelly Evostick. How staff manage to maintain cleanliness in such circumstances I do not know. Every where looked like it needed a deep clean due to wear and tear more than lack of care and attention by the staff. With things like the plumbing, utilities not working at optimum levels the staff seem to have developed a Dunkirk type spirit which I hope with the move to the new building is not lost as it was very a refreshing atmosphere to walk into as a visitor and very unusual for a NHS institution.

During our meeting we explained the situation we had got ourselves into whilst trying manage Hubby’s condition without the support we needed. The fact that Hubby needs help forcibly straightening his legs on an hourly basis during the night due to spasms and that we had not found a way to secure his legs so that he could lie on his side. The OT worked with us on the provided bed so that we could demonstrate the problem and eventually agreed that nursing staff would not be able to carry this out this procedure in a safe manner and that I would at first be needed to help. I let them know that we both know this can not carry on like this and was the main reason for our pleas for help. They got their heads together and came up with a room on another associated unit for the first two nights, where I could attend to Hubby without disturbing others during the night.

This small room with the luxury of a small flat screen TV and a recliner chair for me to snooze in.

New Year Same old Let downs

As I previously posted we spent much of the festive season commuting too and fro the local hospital, 3 times a day 25-29th , then once a day 30&31st. So on the first both of us spent most of the day dosing to catch up on lost sleep and through sheer exhaustion. We had planned to cook our xmas bird on the wed after but #1 son got ill so he didn't come to visit so we ate a bit on our own and I have made the rest into a years supply of curry and frozen it.

Spent most of the weekend mentally preparing for our epic trip down to Stanmore Hospital where Hubby will be an inpatient 4-13th. Arranged assistance at the rail station taxis both ends etc. We can not use the ambulances as there is a ban on Hubby's wheelchair type and he can not lie on a stretcher because of his spasticity.

So you can imagine the anger in our household yesterday to have a phone call at 9.40pm to say that despite several weeks warning our care company has decided that they can not fund the train ticket for an accompanying carer.It is a holiday here today so how am I going to contact anyone to solve this.

Better news they have relented and have paid for the carers train ticket. Whew as how was I going to manage a large holdall with Roho mattress enclosed plus the few bits of clothing and medication needed on my own and push a wheelchair to boot.

Oh Jees I forgot everyone thinks I AM SUPERWOMAN !!!