Spinal Injury Care in the Community

An accident in January 2013 left me with a spinal injury at the base of my neck, paralysis below there, 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.  My spinal injury left me with my anus and urethra permanently closed except by manual intervention.  Two nurses are needed for bowel evacuation.  One nurse takes my blood pressure and pulse rate.  I am turned onto my left side and held there by the nurse.  Then the other nurse, suitably gloved, carries out the bowel evacuation with her fingers and inspects my skin for any developing pressure sores.  My blood pressure and pulse are taken again.  Usually my blood pressure has increased and I have become warm and sweaty because of nerve stimulation.

I also have visits from carers three times each day: 2 carers about 10am to wash me, help me get up and dress; 1 carer about 5pm to make a meal and 2 carers about 8pm to help me into bed.

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, when I reported a problem other than that they came to deal with, such as a skin rash some nurses showed no interest and did not even report it to the surgery; on the other hand two more conscientious nurses recognised my cellulitis and summoned treatment by a locum.  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.

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. 

Breakages or damage are rarely reported to me by a carer, even when it has been in the same room as I was.  A crash in the kitchen is rarely 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 but I have never been left without a call being fulfilled at some time by someone.

In haste, or perhaps because of inadequate training, lack of attention or short attention span, carers have occasionally left me with problems, especially overnight. 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, sometimes I get a curt response.  Occasionally, their have been other problems: leaving my gas fire or stove turned on without lighting it.

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 and about a dozen carers.  Other evidence could narrow the suspect down one carer.

The police investigation was lazy and dismissive.   In the words of the care agency manager, she 'is being guided by the police'.   But 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.  Whilst I trust the great majority of carers I have had, it appears that anyone who applies for a job as a carer can be in the homes of very vulnerable people with a few days - a chilling, frightening thought.

My care agency has had a rapid turnover of manageresses; only one of them made an effort to meet the service users and to make herself available.  Excessive delegation to the care coordinator has made it impossible to manage the carers properly, even when there is a very efficient coordinator as there is at present.   

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

Early in 2014, 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 (I am paralysed and can not always reach the phone before it cuts off).  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 later I received a letter of apology from the complaints group.  A system of ensuring answers to e-mails 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 2017: 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?'; '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.

And not only Wheelchair Services: REPAIRING  MY  HOIST

For several days, the hoist I need to get into and out of bed had become increasingly difficult for my carers to move, so I contacted the care agency to call in the Council Hoist Maintenance Unit.  They promised to call to fix it on Wednesday.  No-one did.  The care agency telephoned them again on Thursday.  'Our engineers could not gain access.  No-one answered the door.'  It had not occurred to them that someone who needs a hoist can not get up and walk to the front door.  'We will call again today.'  They didn't.

The care agency telephoned Hoist Maintenance again on Friday. 'There was a key missing in the key safe.'  There was not.  All three keys were on the same ring.  'We will call round again today.'  They didn't.

A friend visited me on Saturday morning and fixed he fault.  I told the care agency.  At 8.45 on Saturday evening, the care agency supervisor was at my home when a hoist repairer arrived.  She explained that the fault had been fixed.  The repairer decided to replace the hoist, despite there being nothing wrong with it.  What a waste of money!

OUTPATIENT  VISITS

One visit was for a leg scan to check for a blood clot. The appointment was for 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.

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 Accident and Emergency at Queen Elizabeth Hospital (Birmingham). 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.

Around 10.30am on Thursday 7th July 2022 I passed out for 2 minutes soon after my morning carers had put me in my wheelchair.  They phoned for an ambulance which arrived promptly.  I arrived at the Queen Elizabeth Hospital (Birmingham) at 12 noon.  The ambulance crew stayed with me in the ambulance in the car park until I was admitted inside at 4pm (!)

Almost all of the time I was left with the alarm to call for help out of reach.  I asked a passing doctor to ask a nurse to come: she said nothing but dangled her alarm at me, not realising that I am paralysed and so could not reach mine.

Some nurses were courteous and worked hard to provide the best care they could; but they were in a minority.  Most were evasive, abrupt and obstructive.  The senior sister in charge of the group on Friday night appeared to be well aware of this.  I explained to her that a nurse I had asked for help half an hour earlier had gone away and failed to return: she politely assured me that the nurse would return within a few minutes.  She did - and gave me service with a scowl.  

I was in hospital for low blood pressure.  This was checked at intervals of 2 or 3 hours.  I asked what the readings were: each time I was ignored.  Nurses looked at me as though I was asking for State secrets and rushed away.  If it was against the hospital rules, why did they not say so?  Why were they instructed not to divulge such information?  On two occasions I saw the readings on the monitor: 150/79 and 133/78 don't look low to me, certainly better than the readings of 60-65/40-45 that the ambulance crew were getting.  I had no treatment in hospital - but they used different blood pressure machines.

A doctor talked with me about release on Thursday evening but I was later refused because it was left too late for my evening carers who go off duty at 10pm.  A doctor came to see me at 8am on Friday morning and told me he would try to arrange my return in time for my 10am carers.  About 1pm a nurse told me he had not written the discharge papers.  A nurse worked hard to inform my care agency and district nurses of my return and to arrange transport home.  An ambulance arrived at 5.10pm.  The crew did well to deliver me and two other patients to our homes by 6.15pm.  Unfortunately, the nursing care arranged for the following day (Saturday) did not arrive.  The surgery from which the nurses work had been informed but had not passed the information on to the nurses.  On a regular Sunday visit, the two nurses did not know that I had been in hospital.

We are often told how wasteful of NHS resources it is to miss an appointment.  How much does it cost to keep a patient in an ambulance in a car park for most of the afternoon?  Or keep a patient in hospital for so long after it had been established that there is nothing wrong?  Why was information about my blood pressure withheld from me?  When I was discharged I was given an (edited?) copy of a letter to my general practitioner.  The section on observations omitted blood pressure readings - very strange for a patient who had been admitted for low blood pressure. 

It is not uncommon to read stories in the newspapers about hospital staff be in abused verbally or even physically by patients for being ignored, treated as dupes or lied to.  Some of the staff I met during my visit made me appreciate why this happens.  The senior sister, a few of the nurses and the ambulance crews stood out as heroic exceptions trying to operate a system which is too complicated, prone to failure and consequently wasteful.

GETTING MEDICATION

The surgery that I am with is well organised; prescriptions are efficiently sent to the pharmacy next door.  Sometimes that works well too; one of the delivery drivers is aware of the weaknesses of their system and takes steps to avoid them.  However, at other times a prescription is the start of a week or more of battling to receive the medication.  They offer a delivery service to anyone who asks for it, not just those who need it because they are housebound and have no-one to fetch it for them.  Often, I get a note pushed through my front door to say that the delivery driver could not gain access could I arrange to collect the medication.  No-one had told the delivery driver to use my key safe to open the door.  It had not occurred to anyone that the reason I asked for my medication to be delivered is that I can not walk, even to open the door.  The consequence is that those who do not need the delivery service are the most likely to get it.  Sometimes, the prescription is lost.  Some of the district nurses have been very helpful in rectifying the inadequacies of the pharmacy; but chasing lost prescriptions is a poor way to use their time.

Point this out to the pharmacy?  - a formidable obstacle course, particularly for the disabled who most need the service.  Why not fill in a contact form?  Play games of 'I'm not a robot?'  Click on the squares with a road crossing?  Not worth the time and effort.  A useful response, or indeed, any response, is most unlikely.