We've had a tough week this last week. Mark has been suffering from numerous attacks of dysreflexia and feeling more and more poorly. Monday night his temperature spiked to 185/107 so at that point I thought enough was enough, he needed to see a doctor or be in hospital. I rang the emergency number for our doctors and was put through to the NHS direct - definately 'The Good', they were incredibly helpful and had a Paramedic here within 15 mins and ambulance within another 10 minutes. The problem with every new person we meet is that they don't understand dysreflexia, or the seriousness of it, they may have never seen it, so a long explanation has to be given to every new person we see. After checking him out and discussing our options the Paramedic rang to see if we could get him in to Pinderfields but they wouldn't take him direct he had to go through A&E and be referred, they didn't have any beds anyway. His option was to go to A&E and be transferred to a general ward. The problem again is anyone working on a general ward doesn't understand dysreflexia and if he had an attack they wouldn't know what to do or understand the seriousness of it. Mark didn't want to go, he didn't want to be somewhere if the staff didn't understand how to look after him. That I could understand, but I felt I was beyond my emotional capability of being responsible for him as well. I cried with frustration and fear that next time he had an attack something really serious would happen, ie a stroke or worse. Luckily Mike is here for a few days and he could help and that, and the total lack of confidence in the general NHS hospital system made the decision for Mark, he was staying put.
Next morning we had a call from the Doctors to say they had further tests done on Mark's urine and it showed an infection, they had prescribed antibiotics. Mark also rang his Consultant and discussed what had happened the night before. He told Mark he should have a permanent catheter fitted to help control the dysreflexia. He also told him he had a letter back from the department at Pinderfields who do the CT Scans and MRI's saying Mark had had 2 sets of CT Scans and MRI's while he was here as far as they were concerned they should refer to them and the requests for more were cancelled - The UGLY. How can a department like that, a department supposed to providing a service in the hospital to enable Doctors and Consultants heal, refuse a request from regarding a patient. We're all speechless, what do you do next????????????? If he doesn't have them the Consultant can't tell if the syrinx has moved or got bigger. What are they expected to do, open up a patient and see whats going on???
Next day, we went to Pinderfields to have Marks permanent catheter put in, because the District Nurses aren't allowed to carry stock of such things anymore and IF they were allowed to actually put a catheter in for Mark they would have to order it, after a Fax from his Consultant and waiting a day for the catheter to arrive on prescription, The BAD. Everyone in the system is hamstrung with increasing red tape and the need to cover their back at every move, it's a sad reflection on our society.
We've had Mike here for a few days and that's been fantastic, so am going to leave you with a smile.
Mike decides to try Marks wheelchair trousers on ....
not his most flattering look !!!
Next time ... Mark still doing battle with wheelchair services, at the moment he's NOT winning ...
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