Pressure Sores

Pressure sores (ulcers, bedsores) are caused by blood supply being reduced to such an extent as to result in tissue damage, usually following sitting or lying in one position for too long.  They are usually caused by immobility. 

https://www.nhs.uk/conditions/pressure-sores/

An accident in 2013 left me with a spinal injury at cervical vertebrae 4 and 5 (in my neck) causing paralysis and very limited sensation from there down, severe spasticity (muscle contractions and involuntary movements especially in my legs) and double incontinence.  My spinal injury was not a complete break: so I am left with some movement and sensation.  In bed, I wear inflatable rubber cushions on my feet to prevent pressure sores on my heels.  The only place I have had sores has been on my bum and even there, not often (and mostly following having to lie on a wet sheet such as following an overnight catheter leak).

Following my accident, I spent seven months in a specialist spinal injuries hospital.  It was standard practice to turn patients in bed every three or four hours between lying on left and right sides to reduce the chances of pressure sores.  In my case, this practice did avoid fully-developed sores but at some cost discomfort and pain to me and cost to the hospital which could have been avoided.  Often I had a nagging pain before the appointed time to turn.  On ringing for a nurse or carer, she would usually say 'I'll just go and get some help to turn you'.  Sometimes they did return. 

When there were any signs of sores developing, which for me happened several times, I was forbidden to use my wheelchair and confined to bed.  

Since returning home, I have incipient pressure sores only rarely.  My mattress is still the same one I had when returning home from hospital in August 2013.  I am never turned in bed, lying on my back for about 12 hours.  For more than four years my wheelchair cushion was the same one as in hospital, but my mattress wasn't - it is a  Softform Premier available from Invacare. 

About a year after returning home I reported this absence of pressure sores to the hospital: they didn't want to know.  I had a prompt but irrelevant reply to say that the hospital nurses were very vigilant where pressure sores are concerned (and the district nurses at home aren't?) which wilfully avoided the questions raised:

1)  were the hospital mattresses needlessly putting some patients to a risk of pressure sores, causing repeated disturbance and pain to patients by repeated turning?

2) Were nurses' time and NHS resources being wasted by repeatedly turning patients who would not need to be turned so frequently with more appropriate mattresses?

But why should the hospital authorities listen to a mere patient?  After all, as their Consultant Nurse modestly proclaimed, 'We are the experts'.

I have reported the issue of mattresses to several nurses and to patients organisations who have either ignored me or replied in dismissive and patronising terms such as 'I'm glad you have now found a mattress which suits you'.  After telling my story to more than a dozen nurses one did suggest that there are benefits of regular position change for chest management, urine drainage and preventing contractures in addition to prevention of sores - which raises further questions as to why all the other nurses failed to point this out and about my current care which does not include turning: but I am not complaining about that.

PRESSURE SORES AND CLARITHROMYCIN

At the beginning of August 2019, I developed much more serious pressure sores on my bum than I have ever had before.  At the same time I had the most serious skin infection (cellulitis) I had had since becoming paralysed in January 2013: the co-incidence of the timing of these made me think that the infection was playing a part in the formation of the pressure sores.

I pointed out the rash to several nurses to no avail.  Ten days later, two particularly competent and conscientious nurses realised the seriousness of the rash.  They phoned for an out-of-hours locum, who soon arrived with a supply of Clarithromycin, presumably having had detailed and accurate information from the two nurses.  My infection appeared to be cleared within three or four days.  Because it seemed to be connected to the pressure sores, I hoped that these too would heal.

The following week, another nurse ordered a new kind of air mattress and asked for my wheelchair cushion to be inspected.  Then, as expected, my pressure sores began to heal: so I asked for the mattress to be cancelled. 

It seems to me that the mattress and/or wheelchair cushion were associated with sores only on skin and possibly other tissue affected by infection.  

In January 2020, my cellulitis skin rashes returned, but not my pressure sores.  In August I had been ignored by the nurses who came before the 10th so had no Clarithromycin for the first 10 days. In January I already had some Clarithromycin: I started taking it straight away, which appears to have prevented the development of pressure sores.