Seven Months in a Spinal Injuries Hospital 2 weeks 2 days ago #72424
AN INITIAL TASTE OF HOSPITAL ADMINISTRATION
In 2013 an accident left me with spinal injury at C4/5, paralysis, severe spasticity and double incontinence.
Immediately after my accident I was taken to a large hospital nearby and was in intensive care for four days. On the second day, without being asked, a consultant announced that I would never walk again - correct, but gratuitously stamping on any hope of recovery that I might have had.
At the other end of sensitivity spectrum was a night nurse called Lala. Every two or three hours he would walk round the ward and chat quietly with anyone awake - a kind and thoughtful gesture to people who are seriously ill. For some, he would be the last person that spoke to them on this Earth.
In the late morning of day four (Friday) it was announced that I was lucky: there was a place at a specialist spinal injury hospital 70 miles away where 'they will be able to do more for you than we can'. My money, cards, and anything else deemed to be 'valuable' had been locked in the office safe for safe keeping. 'Remind us to get them out before 5 o'clock. The office will be closed tomorrow when you are transferred'. I reminded them regularly from 2.30 onwards. At 4.50, a nurse finally went to the office. On returning: 'Sorry! The office closes at 4 on Friday'.
After I was transferred, every day I asked for my property to be returned. No-one at either hospital would take responsibility for patient welfare beyond the strictly medical. It seemed that recovery of a patient's belongings was not on anyone's tick box list of duties. At last, two weeks later, a nurse from the hospital I had been transferred to had some business at the one I had been transferred from. She kindly restored my property. Cash was deemed too unsafe for me so mine was converted into a cheque. After two weeks in hospital, I was still left without money to buy anything - until friends arrived.
205 DAYS: NOT MUCH ACHIEVED
I was detained at the specialist spinal injuries hospital 70 miles from home for seven months. I have no close family. Friends visited me frequently, considering that for them it was an even longer journey. Remarkably little was achieved for me at the hospital. I was offered no treatment for the injury, only for the after-effects, mainly spasms and urinary infections. Talking to other patients revealed similar stories. Around one-fifth of patients regain sufficient nerve regeneration to be able to walk within a few months. Perhaps physiotherapy does accelerate their progress but not in my case.
The first seven weeks were on 'bed rest'. Seven weeks wearing a stiff collar to limit head movement and being turned from lying on my right side to my left every three or four hours day and night.
Occasionally one of the hospital visitors - mostly elderly ladies - would help feed me, but I was told that such visitors had become rare because of the security checks that had been introduced on them. I was often told what joy would ensue when bed rest was complete and I could get up and go to the second stage ward.
I am still wondering what spinal injuries consultants do. Perhaps someone will come along with a story of a cure for paralysis being achieved such as by re-positioning a disc? - or some other case demonstrating their usefulness? All I know of are cases of 'letting nature take its course' - a phrase often repeated in hospital - while spinal injury consultants continue to be employed for watching it doing so. As one hospital psychologist put it to me: 'They haven't a clue how to repair spinal injuries'.
Soon after I arrived one of them told me that I would never walk again. That was the second consultant to say so in about two weeks. The effect on me was to make me question why bother with rehabilitation. Why was I there? It undermined the work of physiotherapists and others involved in rehabilitation. It also made suicide rise on my agenda of considerations for the future.
Woe betide anyone with an infection. Overheating was often treated with a fan; nurses shuffled fans from patient to patient. Looking back on this from experience of my own infections, this now looks medieval - 'this man has a fever; throw a bucket of cold water on him'. Alternatively, needles, drips, pain, being pumped with antibiotic and bed rest would be the patient's lot. It worked, but since then I have found that so too do a few Nitrofurantoin tablets.
Treatment of spasms was left mainly to Baclofen. I can not know how much relief it gives because I have never stopped taking it. I first started taking it a few weeks after my injury to stop a perpetual feeling of restlessness. 5mg per day worked well for a few days; but soon the effects wore off and over a period of a few weeks, it was increased by stages to 45mg. I was beginning to feel drowsy. Half a dozen patients were always drowsy. I asked three nurses separately whether these patients were on high doses of Baclofen (the recommended maximum was 100mg per day): they were. There was a difference of opinion among medical staff as to whether Baclofen inhibits voluntary movement. Walking was my only hope of a future acceptable to me: at my request, it was reduced to 30mg. I suspect that it has been useful for me in reducing involuntary movement, but I am still left with severe muscle contractions - tightness, especially in the area that would be covered by a waistcoat. I have found that 30mg per day is the minimum amount that gives the maximum relief for me - more does not result in more relief, less does result in less relief. I still don't have much evidence as to whether it has affected my voluntary movement.
Even without optional extras such as Paracetamol, Ibuprofen or Tramadol, and with only 3 or 4 Baclofen tablets, I was being stuffed with around 32 pills and potions per day. Since returning home I have reduced that to 4 or 5.
Promotion of nursing staff appeared to be inversely proportional to how much they cared about the patients. One day, one of the sisters came along the corridor outside my room in conversation with someone. She came in to attend to me. Her companion stood at the open door. Their conversation continued unabated. A few minutes later she returned to her companion, not having said a word to me. A Ward Manager had a habit of walking off while a patient was talking to him, to the astonishment of patients and nurses present.
My release from hospital was delayed by more than ten weeks beyond what was already a lengthy stay considering how little was being achieved by being there. The delay was mostly the result of mismanagement at my local health authority with a little help from incompetence in social services in arranging home care. I had two visits home with the hospital rehabilitation officer and an occupational therapist where we met the districts nurses' team leader and representatives of social services and the health authority. The first was about 5 weeks before the planned discharge date. Everything was on course for a discharge on time. Afterwards the 'district matron' from the health authority started looking for faults with my home. A second home visit was arranged about the time of the proposed discharge date. She seemed to interpret 'duty of care' as 'right to interfere' and was primarily responsible for the ensuing battle, further delay and my e-mail reproduced below.
Here is an e-mail I wrote to my MP and one of the members of the committee which oversees the local health authority. I returned home three days later.
Date: Mon, 29 Jul 2013 18:46:04 +0100
After 202 days detained in hospital, my release, planned for today, has not taken place. (I was supposed to be discharged on 16th May - day 128).
I am grateful for your help so far. Because of your positions overseeing health and social services, I thought you might be interested in a summary of what I have found. Although they result from only my own experience, I have discussed them with several staff here and I am assured that they are not unusual.
Of course they apply to only a small proportion of those involved in arranging discharges from hospital - some staff are probably almost as dismayed as I am in seeing their efforts frustrated, or in feeling powerless to rectify a dysfunctional system. From the previous correspondence I sent to you I think it will be clear which organisations have prompted most of these conclusions:
1 The shabby, cruel, duplicitous, patronising treatment and detention of patients. Only a minority of the staff I have met can be relied on to make accurate statements. The use of euphemisms is very common: some decisions claimed as 'agreed' have actually been imposed on me without discussion.
2 Implied threat of further delay in discharge has been used to impose conditions seemingly unnecessary - and later demonstrated to be unnecessary by being withdrawn when questioned. There has been an attitude from some that my life is to be taken over, controlled according to a pattern deemed 'to be good for me'. There has been insufficient discussion of how I wish to live my life, too little attempt to accommodate my wishes into the changed circumstances following my accident.
3 The waste of public money. First, there is the waste of money keeping patients in hospital when they could be at home. No doubt accounts can be arranged to refute that there are additional costs involved; but however the accounts are presented, living in hospital costs more than living at home: therefore money is wasted by delayed discharge. I am told that this hospital costs around £4000 per patient per week.
Second, there are the costs of wasted staff time in employing managers and administrators to chase each other around trying to operate a grossly inefficient system.
4 The discharge process has been started too late. Even though requirements might change depending on the patient's progress, the discharge process could be started as soon as a patient enters hospital. To introduce time-consuming discharge requirements such as alterations to the patient's house AFTER the discharge date is inexcusable - then to move the goalposts even later beggars belief.
5 The shambolic mismanagement of discharges involving too many (dis)organisations and too many rules which foster the culture of delay and inertia; too many people looking for too many excuses for keeping their heads down rather than getting the job done.
6 Too many delays apparently resulting from sick leave and annual leave without adequate deputies.
7 Complaints departments that leave the impression that their aim is to turn away complainants rather than to investigate complaints. When approached by a patient or their representative, some complaints managers appear to have convinced themselves that there is no such thing as a valid complaint about their authority - it is always someone else's fault.
8 Senior management will sort out issues quickly when confronted by those with a duty to oversee their performance but otherwise appear to be unaware of the way their middle managers operate; gatekeepers in complaints departments make it difficult to get access to anyone willing and able to take a complaint seriously.
9 A culture of complacency and self-congratulation is rife within and associated with the NHS. The literature explaining the purposes of many of the authorities and other organisations which make up the NHS or are affiliated to it in various ways is full of comforting mission statements which have proved to be empty boasts when they have been called upon to take action. Some are just a waste of time: they hold meetings, take statements then do nothing about them; some are simply grotesque parodies of how these organisations really work.
Maybe I have been a difficult patient - badly injured, not much progress, living alone (therefore need for a lot of care) aversion to being bossed about, not willing to be parcelled off to a care home ...... perhaps those involved in my non-discharge would like to comment.
I do hope these observations will be helpful in overseeing the discharge system.
When I arrived home, accompanied by a nurse from the hospital, I was shocked and saddened to see the state in which my home had been left by those making 'improvements' for which I had to pay a ransom to get out of hospital. It was made worse by now being paralysed and so unable to clear up the mess or even to see the extent of trashing and breakages upstairs.
On the day of my escape, the hospital rehabilitation officer asked me whether I would like to have an ambulance booked for a return visit in six weeks time - not the most sensible question I have ever been asked. I had been threatened with being 'a patient for life' earlier, which I took to mean that the hospital wished to continue to received funding for me. After a few weeks at home, I did make a return visit. It was well-organised - an ambulance and driver for the day just for me - no waiting at the hospital - but nothing was done that could not have been done with a round trip of less than ten miles to a local hospital rather than 140 miles to and from this one - not to mention the cost to the NHS. Of course, I missed my tea-time carer and had nothing to eat except a piece of toast which a kind nurse at the hospital made for me.
Since then I have completely broken free. I have been transferred to another rehabilitation unit about 65 miles nearer. I have been there once, a visit which proved equally useful but this time, at least I did get home in time for tea.
Cognisant of my enthusiasm to attend hospital, several times a consultant and physiotherapist visited me at home. I appreciate this. Not much has been achieved except for the addition of Clonazepam to my prescription, which give a little relief from spasms and a better night's sleep, but it is a tall order to expect much more so long after my injury and 205 days with the 'experts'.
Was there anything positive to say about my stay in hospital? A few of the nurses, carers and medical staff did care about the suffering of patients; some of the support staff did understand the patient's predicament. The wards were kept clean. The food was good. I guess mine, like many others, was a hopeless case that the medical staff were incapable of treating but why was I detained so long? Physiotherapists did try to bring about some improvement, but failed, apart from bringing temporary relief from pain caused by being badly positioned. Perhaps 20 -25% of the patients did get nerve regeneration and some could walk after a few months. Maybe physiotherapy accelerated that but did nothing for me beyond immediate pain relief.
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Seven Months in a Spinal Injuries Hospital 2 weeks 2 days ago #72428
Tho it was not something one wants, your alive and able to tell of your experiences.
I guess be thankful for their care be in what form.
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