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Spinal Injury Care in the Community 2 weeks 2 days ago #72425

  • Barry
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An accident in January 2013 left me with my neck broken at C4/5, spinal injury, paralysis below the chest, severe spasticity and double incontinence.

NURSES AND CARERS

I have visits from my GP as required and district nurses on alternate days, primarily for bowel evacuations. I also have visits from carers timetabled daily from 9.15 - 10.30am (2 carers), 5.45 - 6.15 (1) and 8.30 - 9.00pm (2).

Both nurses and carers vary in quality; some are excellent, some are little more than minimal, aiming to leave as soon as they reasonably can. For example, on using the last of a particular piece of equipment such as a bladder wash-out kit, some nurses would not order more, or even say it was the last. It would be left to the next time it was needed, when of course, I am left without. Only a minority would take the initiative and keep stocks of equipment adequate. Most nurses carry out bowel evacuations very well but I have had two who often leave a mess and give a bad start to the day for patient and carers.

Unlike nursing, caring is a casual occupation: they are employed on zero-hour contracts which makes theirs an insecure job. They are not paid for travelling time between calls. This is partly compensated for by not spending the allocated time for which they are paid - I receive less than half the allocated time (and in some of that, their attention has been elsewhere). Nevertheless, the pay is poor. They are not adequately compensated for travelling costs between service users. Some do a very good job in difficult circumstances. Some service users are too demanding and act unreasonably.


I have had only two regular male carers in the past and have not had any in recent years. Male carers are allocated only to male service users; the majority of service users are female.

Some of the carers are young women still living with their parents, never having run a home of their own. Some of these are seriously deficient in basic knowledge needed in caring such as how to make a bed or how to cook: their mothers do it for them.

No breakage or damage has ever been reported to me by a carer, even when it has been in the same room as I was. A crash in the kitchen is never followed by anyone telling me what has been broken. A spillage is usually followed by trampling it into the carpet rather than by cleaning it up. Electricity sockets have been broken when moving the bed; some carers pretend they did not notice.

Of the several dozen carers I have had, few use spare time to carry out little jobs like tidying up; most leave as soon as the minimum has been done (and sometimes before it has been done). Sometimes some of the carers will spend a large part of the call on the phone with a personal call or chatting to each other; their attention is focussed more on themselves rather than the patient.

Timekeeping is often erratic: a 9.15am call can start any time between 8.45 and 10.30; a 5.45pm call can vary between about 4 and 6; some carers are in the habit of interrupting a social call by a friend, and generally calling when it suits them rather than the service user.

In haste, or perhaps because of inadequate training, lack of attention or short attention span, carers have occasionally left me wondering how most of their service users survive. In the first year I was back home from hospital, leaving my leg bag tap closed at night happened 15 times. The effect is similar to a catheter blockage - profuse sweating, violent spasms and trembling. At first I used to call 999, then the calls were transferred to the much slower 111 - then I found out how to open the tap myself by removing the straps so that I could reach it. On several nights my night bag tap has been left open, soaking my carpet with urine. When I remind them to check the taps, often I get a curt response. Other problems have been leaving my gas fire or stove turned on without lighting it and leaving my front door open overnight.

In the early hours of 20th March 2019 I was burgled. The theft was targeted on a bag I kept by my computer. Another bag was stolen, I think by mistake. Nothing else was disturbed. It looks clear to me that the thief had a good knowledge of the inside of my home. Only a limited number of people have such knowledge: 5 close friends, half a dozen district nurses (perhaps) and about a dozen carers. Other evidence could narrow the suspect down to 1 probable and another possible carer.
The police investigation was lazy and dismissive. In the words of the care agency manager, she 'is being guided by the police'. It appears that the police solve hardly any petty crimes: there must be many burglars and other petty criminals with clean criminal records. So criminal record checks when an agency employs carers is of little use. While I trust the great majority of carers I have had, it appears that anyone who applies for a job as a carer can be with the homes of very vulnerable people with a few days - a chilling, frightening thought.
I looked into the possibility of changing my NHS continuing care funding for the care agency to a personal health budget so that I could have some control of who comes into my home: the conditions made it impractical and too risky for someone in my condition.
Because theirs is such an insecure job, few treat it as a full-time occupation. For some it is a way of topping up their state benefits; some have other jobs such as working for other care agencies or doing a few night shifts in care homes.


Occupational therapists and physiotherapists

In the six months or so after leaving hospital I had visits from an occupational therapist and from physiotherapists. The occupational therapist was handicapped by a poor understanding of what I am capable of doing physically. One of the physiotherapists did as much as could be expected but his visits nevertheless coincided with decreasing movement in my hands. Others did not really want to be here or were not very practical. For example, hand splints have been recommended several times and issued twice. These would, of course prevent what few activities are still open to me - use of the computer, telephone, reading. By preventing calling for help, they would also be dangerous for someone living alone.


WHEELCHAIR SERVICES IN ACTION

1) LOOSE SEAT BELT
About six months after returning home from hospital and after falling out of my wheelchair twice, a physiotherapist noticed that my safety belt kept working loose and so decided to call the wheelchair services group of the local health authority. Two engineers visited me and decided that I needed a better belt. A private sector contractor to the health authority would do it.

Three weeks later, another engineer from the contractor arrived and could not get into my house. My key safe number had not been passed on to him by the contractor's office.

The next day, another engineer from the contractor came. 'Did wheelchair services leave the new belt with you?' 'No'.

Two weeks later I received a letter from wheelchair services to say that they could not contact me by telephone. If I did not ring the number on the letter they would assume I no longer wanted the belt and close my case.

I rang the number given. 'Did we deliver a belt to you?' 'No.' It appears that they do not keep records of what they deliver and to whom.

Almost a month later I sent an e-mail to wheelchair services to ask them for a progress report: no reply. And again: no reply.

So I e-mailed the health authority patient contact service to explain the problem. They too were ignored several times by wheelchair services but kept me informed.

I decided to make a formal complaint. They too had trouble making contact with wheelchair services and set up a formal investigation. Contact with the complaints group was a problem until I threatened to refer the case to the Care Quality Commission. The formal complaints procedure then proceeded. A week or thereabouts later I received a letter of apology from the complaints group. A system of ensuring answers to e-mail would be instituted!

In the meantime the belt had been fixed by the two engineers from wheelchair services who had originally decided that I needed it. It works fine.

2) HOW MANY VISITS DOES IT TAKE TO CHANGE A WHEELCHAIR CUSHION?
April: district nurse notices I have an incipient pressure sore; 'How long have you had your wheelchair cushion?' '4 years.' 'OK. I'll ask Wheelchair Services to inspect it.'
June: district nurse again 'phones Wheelchair Services; a psychologist pays me a home visit. 'I can't inspect the cushion. It takes two people to use the hoist. I'll arrange for two people to come'.
August: another reminder from the district nurse; two people from Wheelchair Services make a home visit. 'How long have you had your wheelchair cushion?' 'A 4 years and 4 months.' 'OK. We don't need to inspect it. We'll send a new one'.
October: cushion delivered. District nurse fits it the following day. Next day, two more engineers from Wheelchair Services come to fit the cushion.
So the answer to 'how many visits does it take? = 4, involving 6 people over a period of 6 months: luckily, my incipient pressure sore went away with a few days of it appearing in April.

OUTPATIENT VISITS

One visit was for a leg scan to check for a blood clot. The appointment was at 10.30am. An ambulance arrived at 11.20 and I arrived at the hospital about 11.50. I was parked in a waiting area. At 1.20 someone came to tell me I had missed my appointment but I would be offered another one. An ambulance would come to return me home. It came at 4.40 and I arrived home to miss my teatime carer, so had no evening meal. The appointment was re-arranged. This time, I arrived in time, the scan was done and I had only two and a half hours to wait for a return ambulance.

On another occasion an ambulance came with only the driver, who could not get me into the ambulance. She suggested I should phone for a two-attendant ambulance - not an easy task, having so little use of my hands. After many calls resulting in 'Sorry, all our lines are engaged. Please ring later.' I did get through. As expected, I was told 'You are too late to book an ambulance for today': so I missed the appointment. I suppose I should have known better than to bother ringing, having previously experienced so many examples of NHS duplicity in hospital.

One Saturday, a few hours after my catheter had been changed at home, I started sweating. I 'phoned for a nurse. The same one that had changed my catheter came about 1pm. He changed it again while I was in my chair. With the benefit of hindsight, it is very likely that there was nothing wrong with the first catheter, except that it had triggered the symptoms of a urinary infection which could have been cured with Nitrofurantoin. The second catheter caused significant bleeding (It was fitted in the chair, probably not in the correct position). An ambulance was called and I ended up in the Accident and Emergency. The bleeding soon stopped, of it's own accord as far as I know.

I was left in a painful position for several hours. I tried to ask passing nurses and other staff to re-position me but was ignored. Early in the evening, a male nurse who did a fair impersonation of Dracula arrived. He started sticking needles in me to pump me up with antibiotic - very painful. Since my injury I have become exceptionally sensitive to needles in the areas not completely numb, including my arms and hands. He seemed annoyed when I asked him what the antibiotic was (because I had been told at the spinal injuries hospital I attended that I am allergic to several of them). An hour or two later I was moved to a ward and was taken home about 2am.

One evening I slipped out of my wheelchair. An ambulance was called to put me back in it. Two attendants arrived and surveyed my predicament. Then one sat on my bed filling in a form and the other returned to the ambulance for a special stretcher to keep my neck immobile. After nearly 20 minutes left on the floor, they put me on an excruciatingly painful stretcher. One said that he didn't think I had injured myself further - as was obvious from how I fell - but I should go to hospital as a precaution. Several times I made it quite clear that I did not want to go to hospital - I just wanted to be put on the bed. I was bundled onto the rigid stretcher and into the ambulance. The journey was the most painful I have ever made. After an hour or so in hospital a doctor came and squeezed the nape of my neck twice. 'Does that hurt?' 'No'. 'Then you can be discharged'. I was taken home in the middle of the night. Next morning, thinking that I was in hospital, my carers did not come. Next time I fell out of my wheelchair I waited for some friends to pick me up.

My hospital visits have been made worse because I am paralysed. If I were not, I would not need their awful ambulance service, would not have missed any appointments and would not have needed help that I didn't get. I can remember two other visits to hospitals which were well-organised but I am trying to remember a well-organised and useful hospital visit .... I'm still trying.

LOW EXPECTATIONS

I have got the impression that expectations among those who have a spinal injury and those who treat or care for them are low - too low. Waiting in a specialist hospital hoping that the injury will somehow repair itself - it does in perhaps a fifth or a quarter of cases - is not good enough. If the injury can not be repaired, then for me, it did raise questions as to why I was being detained.

In my case, treatment of the after-effects has not been much more successful. Baclofen and Clonazepam have reduced the perpetual muscle tightness and jolting of spasms but have fallen far short of complete relief.

Catheter technology is primitive. Urinary infections and blockages are more common than they need to be and are complacently accepted as a normal consequence of having a catheter.

I find it dismaying more than surprising that it is not standard practice to take a sample of the catheter contents whenever there is a blockage caused by sediment.

Instead, after unblocking the catheter, the nurse goes away with a cheery 'See you again soon'. I wonder how many people are sent to hospital for tests for kidney stones or bladder stones following blockages without any evidence from a urine sample at the time of the blockage. We are often told how much it costs the NHS if we miss an appointment. How much does it cost to send someone for an unnecessary appointment?

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