Back in Hospital

Saturday night, Mark got up for dinner after being in bed constantly from arriving home in the ambulance. He must have been up 2-3 hours when he said he had to go back to bed whatever was going wrong in his back was starting to happen again. He was in bed for maybe 45 mins when he started with the real agonizing pain. Rang for an ambulance. When they got here we explained the situation again. They rang for an extra crew to help get him on a scoop and immobilize his head. This time Mark needed gas and air for the pain so the crews were in a dilemma, one crew was front line crew ie one was a paramedic so they couldn't go anywhere other than BRI, the other crew could have taken him to Wakefield (Pinderfields) but they couldn't administer gas and air. We had no choice really, we were back off to BRI. In A&E for about 10 mins and we get our first break, the Registrar who was on duty on Thursday night when he was taken in was there again. He took one look at Mark, recognised him and went of to have 'words' with someone. By now Mark is nearly screaming with the pain. On top of the gas and air they gave him morphine to try and help manage the pain. We had a visit from someone from Orthopaedics who unfortunately got some serious abuse from Mark, she was supposed to authorise his admission to a ward. I really thought she would refuse to take him if he didn't stop swearing at her and as soon as she stepped away I had to tell him, difficult as that was, we both feel like screaming at anyone in earshot. She did admit him, and when she came back he apologised to her. Four hours after arriving at A&E he was transferred to the Orthopaedic Ward, where we have another problem. They were told not to move him at all until the consultant saw him in the morning, that meant he had been flat on his back since 9pm the evening before, now not on a spinal mattress and going to be left flat for another 4 hours. That will put him at risk of a pressure sore beginning. They didn't have all his drugs and even though I had his next days drugs already in a dispenser they wouldn't accept them because they weren't in the original pharmacy boxes. It's Trust Policy apparently. I did ask would they blindly follow Trust Policy to the point that someone died and not intervene. No answer.

Sunday, no consultants on, they can only manage his pain but the doctor did say they should keep turning him to prevent pressure sores.

Monday morning he's seen by Mr Taggart the Orthopaedic Consultant, who had to get his notes from Leeds ie where he should have been - took more history from Mark and decided he should be at Leeds and would refer him. In the meantime he would order another MRI and a visit from the Pain management team. Monday afternoon Mark gets through to his Consultant at Pinders, explains they have ordered another MRI but nothing else is happening, can't he get in touch with Leeds to find out why Mark is not being accepted. Mr Raza tells Mark he really needs a CT scan (you might remember that Mr Raza ordered a CT Scan for Mark at Pinders and they refused to do it). Mark explains that request would be better coming from Mr Raza obviously, so Mark asks a Nurse to get one of Mr Taggarts team, he comes and Mr Raza requests the CT Scan. That's agreed, but won't be done today.

Tuesday morning, Mr Taggarts team visit Mark, discussion takes place on whether he's having MRI or CT scan or both, until Mark reminds them of the discussion of the previous day and it's agreed he's having both. One person from the pain team visit and prescribe slow release morphine to be administered regularly and he has to ask for Oramorph (it's liquid morphine and fairly quick acting) whenever he feels the pain coming on. You can tell now that the morphine is starting to affect his clarity of thought. By lunchtime today he still hadn't had his scan. As I'm just about to walk through the door to visit I get a phone call from Mark - where are you love? Just about to walk into the hospital I reply. Marks says 'Can you go home and get me some Baclofen, they've run out, someone forgot to order it from the Pharmacy'. Well that just about sums up this broken NHS. So I had to go home and get Baclofen out of his supply and take it in to them.

I have asked the Chief Exec of SIA if we have any legal rights to demand Mark be seen by the appropriate person as this is what it might take to get action. I have also tried to get in touch with his consultant at BRI directly to find out how the system is supposed to work and who is supposed to take responsibility for him now. His secretary's phone is on answer phone because she's off poorly and no one at the hospital at this point can tell me when he's even available to speak to. We haven't really made a fuss yet but that is about to change, this must be nearly bordering on patient neglect!!

Our fantastic NHS ..... NOT

Last night was a real eye opener showing how big the gap is between some of the NHS staff trying their best to do right by a patient and the reality of how you're treated when the 'money' word takes affect. Just after we finished eating last night Mark was sitting in his chair chatting to a friend. He felt uncomfortable but wanted to stay up at talk about his favourite things - engines - when he's hurting sometimes leaning forward in his chair, providing a change in position helps. Not this time, he sat back again and in doing so felt a huge crack in his back resulting in excruciating pain, and screams for me to get him off his chair. Even lying down didn't seem to do anything to alleviate it so I rang Pinderfields for advice - ring for an ambulance, they say, tell them to treat it like a new spinal injury and try and get him into a specialist centre, ie Leeds General where the surgeon is that he's supposed to be seeing. So I ring for the ambulance, paramedic arrived within 15 mins understanding it was a spinal issue. Ambulance arrived 10 mins after him, they rang for more back up cos he's a big guy and between them they immobilised him on a spinal board with head braces - the whole nine yards. Paramedic then rang Pinders to try and get access to Marks notes so he could relay them to Leeds, unsuccessfully, the night staff couldn't access the system apparently. They get Mark in the ambulance, we set off for Leeds, understanding we have to go through A&E but they're going to ring ahead so he's not left lying in a corridor for hours. So we're on our way to Leeds, the crew ring ahead, try and explain the situation, were cut short by a nurse, she spoke to her on call consultant, obviously didn't tell him any information other than were we were coming from (we're outside the local Leeds A&E catchment)and he refused to accept Mark. Poor Amublance crew had no choice then but to take him to Bradford Royal. So we're deposited in Resuscitation, which at least is more urgent than being left in a corridor, details taken, more than an hour goes buy, they take X-Rays, another hour goes by, by this time the pain has receded due to being immobilised, he's seen by a Registrar who feels around the fixture area, discusses what should happen next ie he feels Mark should go to Leeds but as we've already been refused once tonight he feels it might be better to stay overnight at Bradford and be examined by the Consultant there and get them to refer him to Leeds the next day. He has to get a bed on the Orthopaedic ward, which obviously has to be agreed by the Orthopaedic Consultant apparently. Mark is classed as non acute now so we're moved to a side cubicle at around midnight. 1.30am, the Registrar comes back and explains because Mark is not considered acute enough they won't give him a bed and are going to send him home. The frustration is clear on the face of the Registrar, the message is also clear, anyone not in an acute situation won't be admitted. The only option open to us is if it happens again, we have to get the ambulance again and go through this same process and only then might he be considered acute enough to be admitted. In other words you have to be at the point that your situation is so serious you're unlikely to recover from it before you're considered worthy of treatment. How do you fight your corner faced with that closed door attitude?? So they arrange transport to take us home - they arrive and one of the guys attending took Mark from Airedale to Pinders when he was transferred, Mark recognised him and as soon as he explained who he was he remembered Mark. Anyway we get home, he's transferred from stretcher to bed, where he remains for now.

Mark is hassling Pinders and the Doctor to try and expedite this referral, but all we're getting is that we'll get a letter in a week or so from the Consultants secretary. In that we expect to be told we're on their waiting list.

No more problems with catheters - says who???

Well I've been AWOL for a week but have a reasonable excuse. Been very poorly with a tummy bug (probably gastric flu) and spent quite a few days in bed. That in itself wasn't pleasant but it passes, more of a problem was looking after Mark because I really couldn't. Step in John and Janet (God bless them), they ended up looking after both of us for a week. Now half a stone lighter and still lacking in energy I'm on the mend. It did show up a real problem though, in that when we're on our own we do need to factor in for things like that.

So what's gone on over the last 2 weeks. Just before I got poorly we had a call from Social Services wanting to clarify some issues regarding the wetroom grant. It seems social care is not based on needs now, there has to be a cost reduction in another area of care we're receiving. So we've had to verbally agree (I'm not putting anything in writing) that when the wetroom is done we would only need one carer to come in everyday instead of two. Angry, incensed, almost speechless, doesn't really describe how I felt after that conversation. There are millions of people claiming thousands in benefits, grants, housing benefits etc etc etc and we can't get two simple things for Mark without it turning into a horse trade!! Even with the blackmail it's still in the 18-24 month grant process.

Next morning instead of two carers turning up we had only one (not related to the above idiocy), he started off across the carpark, fell on the ice and dislocated his shoulder. Out to pick him up, ring amubulance, ring his work to say he's off to hospital and being the lovely helpful people they are didn't even offer to send someone else to see to Mark, just left us to it!! Situation normal there then.

Lots of days passed me by then. Monday this week, Mark finally got in touch with the secretary of the Consultant he is supposed to be seeing in Leeds to be told he couldn't see him privately unless he was prepared to pay for all subsequent treatment, AND, it was very unlikely he would see Mr Timothy but one of his team and that would probably be decided when they've seen the scans. The problem as we all know is that the scans don't really show anything so even getting through triage onto the actual waiting list could prove a problem. So we're totally in limbo with the whole thing, while Mark continues to slowly deteriorate.

Five am this morning Mark called me saying he thought his catheter was blocked - this wasn't supposed to happen. He was lying in a very wet bed because a very full bladder forced itself out through it's 'normal' exit ie, his willy. Am not at my best at that time of the morning but an hour later, we'd done an intermittent catheter, then put in another indwelling catheter so the supra pubic was bypassed. Pipes coming out of him everywhere now. Him washed and a complete pile of bedding needing to be washed, I head back to bed for a while. After carers and breakfast Mark sets about working out what went wrong and after creative use of a syringe and boiled water (any of you out there in the medical profession you didn't read any of this bit), he managed to clear it. Back to just the supra pubic again now. So that lasted 3 weeks, not a good start.

News on the house - none, still paperwork passing between solicitors and time running out on our current abode.

A small victory

After the week from hell, the last week has been a little calmer and we've had one small victory. After being told we wouldn't get a direct payment to enable us to put the ramps in the new house and we'd have to go through the full 18-24month grant process, we told the OT from Social Services we were going to take our story to the papers, due to the complete ridiculousness of the situation. Seems it doesn't matter how much you try to help yourself and you only need a small helping hand there are so many barriers it's impossible. We've found out since there are more departments and assessments put in place to stop people getting what they're entitled, the cost of preventing us getting the ramps and wetrooms is probably more than the cost of getting them done!! Anyway, the threat of negative publicity had some affect because he rang back the next Monday and said he had secured temporary ramps for us and would deliver them that week - our small victory. That's where it ends though, nothing for the wetroom.

We had a meeting with our benefits advisor and now all our own money has gone Mark is entitled to another £35 per week, but that change in benefits opens the door for him to have Council Tax and some Mortgage interest paid so very helpful overall. Another small positive.

The Careers, still a massive pain in our life. We've sacked them from the night time calls and it's back to me again. We've had a meeting with our Social Worker to get the process underway to change to direct payments. That process allows us to have Marks care money paid into an account set up by him and employ our own care. The waiting list for yet another assessment for that is 3 months, then some months before it's actually set up. We think this yet another massively time consuming and frustrating process will be better in the long run to help Mark back to a more independent life. We're also going to try and change our Care company because we can't stand another possible 6 months of the rubbish care he's receiving. The Social Worker is so disgusted with their standard of business she's going to try and get them off the Social Services register. It's hard enough when your life has been dumped on its head but having to put up with all just makes each day more stressful.

Mark had a morning out to his possible new place of work but apart from that he's continues to decline. He's spending the majority of each day in bed now due to increasing pain and as you can imagine his mental state is beginning to also deteriorate as a consequence. We're still waiting for an apptn with the Surgeon in Leeds and had decided to take that into our own hands as well and speak to his secretary and find out how long that's likely to take. If it's weeks we're going to try and see him privately. We have the money in Marks Trust which has been earmarked for all sorts of things for him when we move, but his quality of life is so bad now it's pointless having it in the bank but being almost completely bed bound.

The house purchase processes are moving on but still don't have any idea of a moving date. Being confined to home is beginning to frustrate both of us, we need to move on.