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Hospital-phobia

On the face of it, you’d think that any hospital would be reasonably well equipped to deal with people like me – non-standing wheelchair users with severe motor and sensory deficits.

Sadly, given my personal experiences, in general medical hospitals rather than specialist facilities, visits are, at best, irritating, at worst, distressing and dangerous.

It’s the moving and handling that seems to be the fundamental problem … Well, that and an alarming tendency for staff to ignore or bureaucratise every problem. Consequently, I am now severely hospital-phobic – my fears exacerbated with every admittance including my most recent over this summer.

Desperately hoping for some improvement over the years, my heart sank when, from first entry to Accident and Emergency, there was an equipment problem with the onsite hoist which was not able to lift me clear of the bed.

On transferring to the ward, the same type of hoist was used – more problems.

On transferring to a more specialised bed, yet again, this inadequate hoist was the only one available and proved entirely hopeless when used with this – even higher – hospital bed.

From the outset, D and I said the hoist was unsuitable as, with an infected grade 4 (the most serious) pressure sore on my butt and profuse internal bleeding, every transfer involved a painful and dangerous process of part hoisting, part dragging me from one bed to another. We were told no other hoist was available within the hospital.

Further to this, on the ward, we discovered there were no suitable toileting or bathroom facilities for me. So, what were we to do?

The staff agreed that this was a dreadful state of affairs and suggested we would have to manage with the existing hoist, bed baths and bed pans.

Given my current and ongoing medical problems – the bleeding, the open bed sore, severe neurological pain, life-threatening anaemia and infection, osteoporosis, to name a few, this was just not acceptable.

To our distress, the staff had no other solutions to offer and some were downright unpleasant, suggesting we were making a huge fuss for no good reason. We continued to insist, with reference to my health and wellbeing, that there were other solutions including using my own at-home hoist which was up to the job and a piece of equipment that we could easily bring in.

The on-duty staff refused to countenance this idea. Finally, at midnight, we agreed to revisit the problem in the morning whilst they would see if a higher lifting hoist might be shipped in from another trust hospital.

By now, I was so weak, ill, exhausted and stressed that I wanted to go straight home but, with gritted teeth, D persuaded me that I had to stay. He managed, with the inadequate hoist, to get me settled for the night.

Morning came and I asked the nurses for help, repeatedly.
‘Too busy now.’ ‘Later.’ ‘We’ll be with you soon.’
These were the only responses I got.

Several hours later, lying in blood and urine soaked sheets with my pressure sore open to further infection, my texts to D – sent on each brush off – became increasingly distressed.

D came across, very upset, and we managed to clean me up and cover my wound with the help of a friendly healthcare assistant. We were assured that the hospital would source an adequate hoist but, as the day wore on and no hoist appeared, I became increasingly distressed about how I was going to manage.

It’s hard to describe how stressful this all is but to be in extreme pain, unable to get to a toilet, unable to wash and to be completely dependent on others who have no clue what to do when you feel incredibly Ill – well, it would be most people’s idea of a nightmare, I suspect. Additionally, the staff were steering well clear of us, troublemakers that we obviously were!

Eventually, it became clear that, as we had feared, there was no alternative hoist available. Several heated conversations ensued, the nub of our argument being:

“How can you accept me as a patient when you are not equipped to deal with my most basic physical needs?”

There was some sympathy from the staff but no solutions. At this point, we felt that it was either leave or bring in my hoist from home unless anyone had any other ideas? They did not.

Given that leaving carried some risk of death, eventually, one senior nurse agreed that we should bring in my own hoist, so D raced off to get it but, on his return, a new shift of nurses were adamant my hoist must not be used as it was illegal to use non-hospital property. One senior nurse even went so far as to suggest D would be escorted off the premises if he attempted to use our hoist.

My interjections of – “But it’s a social services hoist. Look, it’s even got the date of purchase, servicing and next service date written on it …” – were brushed aside. Different service departments …

Helpless in the face of obdurate bureaucracy, I had broken down completely and just wanted to go home, come what may. D refused to go until a solution was found. Stand off. Luckily, even when he’s livid, D is always polite and reasonable. But, yet again, at close to midnight, we had to agree to deal with it in the morning.

D returned early the next morning. On the way in, he complained officially to the PAL (Patients Advisory Liaison) office about my situation. My sister, who works in a hospital, told us about this and thought it might be worth trying.

And, wow, what a difference that made.

A senior manager swooped in within a few hours and agreed that using the inadequate hoist would further endanger my health. Rapidly, she agreed that my hoist would be used as patient health and safety over-rides the legal issues re non-hospital equipment. Isn’t that good to know?

We had one final blip to surmount when, even after this decision, the on-duty nurses said my hoist had to be looked at, and okayed by, a hospital engineer. It was 4pm on a Friday and none were available until Monday meaning no hoist use over the weekend. Ludicrous. It took until midnight and further input from the senior manager to get past that problem – same rationale though with patient health and safety over-riding legal and admin requirements.

Finally, after several very distressing days, I was able to be moved safely for toileting and washing purposes.

The problem is that this is all old news to me – one decade merging into another along with one government transforming to another and it’s not really good enough for a National Health Service, is it?

I do get that I am in small minority of patients; that, even with training, staff will not be used to handling patients like me on a regular basis: and that, with cost cuts, it is difficult to cater for extremes of care in all cases but it still has to be done.

Ignoring the problem, not listening to patients, refuting suggested solutions and being rude and unpleasant is not a solution and to accompany this obduracy with a complete lack of care is simply insupportable. I dread to think what happens to patients who are less articulate and/or not as well supported as me.

What do I expect? I expect staff to calmly acknowledge the very real issues of high dependency patients as soon as they become apparent, to work with us, the patient/family/carer, in finding acceptable solutions and for hospital rules and regulations to be flexible enough to speedily adapt for the – relatively few – non-standard patients admitted.

There really are circumstances where to force the patient to bend to usual hospital routines is just dangerous to both staff and patient – staff should be trained to recognise this and authorised for action where needed. However, in the absence of such training/action and accompanied by an uncaring, arrogant and officious attitude … Is it any wonder that I, and others like me, have developed a – potentially – life-threatening hospital-phobia?

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