What do we think to our new Carers????

If only given a few words to answer that question it would be 'not a lot'.

We've had nearly 4 weeks with our new Carers, who everyone told us were very good and would guarantee a more tailored service ie be here when we wanted them, partly due to the fact that we're paying towards it now. We were looking forward to that. The Intake Team ie the Council Carers although were often quite late turning up and didn't always do what I thought they should, were on the whole a happy bunch and really did seem to care about the people they visited, there was often lots of laughing in Marks room when they were here.

So far I've only seen one of our current Carers over the age of 12 (or so it seems) and seen very few with a smile on their face or indeed heard any giggling or joking at all in Marks room. They are in general a miserable lot. I saw a bit of his washing process one day where one of them was waving a cloth over the tops of his legs and had no intention of washing the backs of them, when I asked Mark about it he admitted he had to ASK them to wash the backs. Not once have they offered to wash his hair even though it is stated as part of the deal.

Our Social Worker asked us what our feedback on the service was so we told her as far as we're concerned it's rubbish. The day after that I fell out with them big time. Marks call is 9 - 9.15am every day. If they're over 15 minutes late we're supposed to call the office. So I did (this was the 2nd day in a row they were late), speaking to their boss amid the sound of screaming kids, barking dogs, shouting man, I asked where they were and if they were indeed coming. She told me she didn't know their route that morning (that put my hackles up) but she was sure they were coming. Why don't you know what their route is, you're in charge, I ask. Silence. If they're going to be late surely they would have the common courtesy to ring and let us know. Silence. Well if I keep quite now surely she'll say something!! If I keep talking I'll flay her alive. She eventually offers to ring them and find out what's happening and call me back. Well that's a start. Five minutes later she calls back, they told her they were going to be 15 mins early and they knew they couldn't do that so they went somewhere else, they'll be there in 10 minutes - 9.50am (keep that in mind cos the next big will seem crazy).

By 10.00 they still hadn't turned up so I started washing Mark myself, he'd been waiting an hour by this time. 10.30 they finally rang the bell and I was out there like a Rottweiler I was so angry. I told them they couldn't come in and that I was extremely angry that they're an hour and half late and didn't have the courtesy to call. Keep up now. She apologised for not calling but thought they were doing the right thing by not coming early because Mark wouldn't be ready for them at 7.15am. That stopped me in my tracks. What do you mean he wouldn't be ready at 7.15, of course he wouldn't he's not even out of bed, you're supposed to be here at 9.00 ish. Feel like I'm loosing my grip on reality here now. Well we've got him down for 7.30 - 7.45 call. I lost it a bit then and told them what I thought of their rubbish organisation while still trying to process how they thought being 3 hours late by their timings was acceptable. When I asked that question they had no answer, this whole conversation seems a be a bit surreal to me now. I tell them they're not coming in, go away and get your act together. They're on trial now as far as I'm concerned, they've a couple of weeks to show some intelligence and get their act together or we're buying this rubbish service from someone else.

This morning on the news it was announced that a large scale investigation is planned into these care agencies because 'someone' feels the clients aren't getting a good deal - YOU THINK!!!!!

The Good, the Bad and Ugly within the NHS

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 ...

Not so nice complications have set in .....

We've had a bit of a setback. Well quiet a lot of a setback actually. Over the weekend Mark had three episodes of Autonomic Dysreflexia, that's a sudden and dangerous reaction to something going wrong in the body but because the body can't tell you exactly where the problem is, it just goes crazy trying to warn you that you better find out what it is and FAST. When the dysreflexia happens, it sends the blood pressure dangerously high and if left untreated can cause a stroke due to the pressure in the blood vessels in the brain or even death. Luckily Mark had some special spray that is sprayed under his tongue which brings his blood pressure down but we still had to work out what was causing it. We worked out quickly that it was bladder related because after the sudden dysreflexia came on he passed urine. We started to do intermittent catheters which open the bladder valve (sphincter) and allows urine to pass as soon as he had any sign that the dysreflexia was triggered. We then worked out that it was the sphincter that was the problem. The bladder is a big muscle, the sphincter is also a muscle, when the bladder wants to pass urine it squeezes, then the sphincter opens and urine passes. But not so with Mark now. When the bladder squeezes the sphincter won't co operate and that causes the dysreflexia.

After a doctors visit and another visit to Marks consultant at Pinderfields we thought we would have what we need to sort out the problem. Not so. We've been told it's much more serious than just a bladder problem, the bladder is a symptom of something bigger going wrong. According to the Consultant it all points to Post Traumatic Syringomelia. You may remember some time ago I wrote that they had found a Syrinx in Marks spinal cord, which is basically a cyst. It's common in spinally injured people and often they cause no problems. In some cases they can increase or enlongate within the spinal cord and put pressure on the cord, which then leads to loss of strength and/or sensation and/or motor function. It was scary and worrying at the time they told us but they decided that at that point it wasn't causing any problems so they wouldn't do anything about it. Seems they spoke too soon and that's exactly what's wrong. So where from here ......

First he has to see the urology consultant to test his bladder and decide whether they have to operate on the sphincter and open it so it stays open permanently, use Botox on the sphincter to open it (has to be done every 6-12 weeks), but Mark did wonder if it would take all the wrinkles out of his bladder, take drugs to keep it open or finally have a permanent super pubic catheter. That's a fixture put just above the pubic bone with a catheter directly into the bladder, not something Mark wanted.

Then, a CT scan and MRI which they'll compare with the last ones taken to see how the syrinx has changed. Only then will they decide whether the syrinx has to be drained. If it does, it's anoperation to put a drain into it which will drain the fluid into his abdomen continually.

He's not a well lad ... will it never end.