17th January after a protracted 3 year wait, Hubby has at last got a slot to replace his worn out left knee. We had his first attempt to get this operation done cancelled at the last minute back in 2010, due to the local hospital deciding that they could not deal with Hubby's other disabilities. The decision was of course taken after sitting on the waiting list for nearly a year all told.
So after much debate as to the benefits of carrying out such a procedure in some one who can not and is not likely to walk, it was decided to carry out the procedure for the alleviation of pain and to get Hubby putting some weight through his legs again as he was able to do when he was first sick. Being able to stand using a standing frame or tilt table is extremely beneficial for some one with a spinal injury as it helps with the processing of bodily functions.
RNOH Stanmore as usual with some negotiation, reluctantly recognise that Hubby needs someone with him to look after his pre existing problems. So they manage to source us a side room rather than a bed in an open bed ward. Our journey there was great as our local GP's made sure we had the appropriate type of ambulance with a technically qualified crew, minimum grade EMT. The usual first aid plus trained transport crew being of little use to me if we have an emergency Autonomic Dysreflexia attack to deal with.
When we arrive we find out we have been assigned to the Duke of Gloucester ward, which is very near to the EAT Restaurant but accessed by a linked walkway that is open to all the elements.The room is pleasant enough , has a TV, sink and room for wheelchair plus bags, and blow up mattress for me. I check with the staff as to how they want me to work with them. They don't want me emptying stuff in the sluice, so they will do all the urine bottle rinse outs for me, with me filling in a form re the amounts colour etc for them to officially record. Can understand this different requirement as the walk to the room would involve walking across the open ward which the other male patients might find disconcerting. They very kindly agree that I can use the staff room toilet which will save me walking back into the main hospital down those unsheltered walkways in the dead of night. We are met at the ward by a friendly face for me, Jackie the ward sister was at some of the Hospital rebuild project meetings I had previously attended.
Having passed to the staff the detailed care plan that I have developed for Hubby, just in case I am ever incapacitated , I receive quite a few compliments regarding its contents. Very gratifying to receive such from professionally medically qualified people, I must have learnt something I guess.
Hubby's Spinal Injury Consultant visits very soon after our arrival to see whether Hubby wants his Baclofen pump adjusting to deliver more medication while he goes through the procedure which might set off his very bad spasms. Hubby decides to try and manage as turning up the dose can affect his breathing and arm function.
Friday, Hubby leaves the ward at about 10am to go for his knee replacement op. It is freezing cold outside and he is wheeled along unsheltered walk ways back into the building that holds the theatres. About 1:30 pm I get the call that I am needed in recovery as Hubby is giving the staff hell. Apparently he feels they are moving his body about like he is a piece of meat rather than asking first. He is also I find out desperate for a urine catheter which might be the actual source of his irritation, and verbally combative behaviour. I sort this and we get him back on the ward as soon as possible. The operation went really well and nearly straight away I am able to move his knee, which is an absolute god send as he hates having his catheter done when lying down, preferring to sit over the edge of the bed which to do I have to bend his knees to swing him into the up right position.
Saturday and Sunday we meet the weekend on call physiotherapist but Hubby is not feeling well enough for her to get stuck into some passive exercises yet. We explain it is not such a problem anyway as he is bending his new knee on a regular basis anyway because of the way I have to look after him. Monday we meet the ward physiotherapist briefly, talk to him about Hubby's position and disabilities but no actual physiotherapy is carried out by him. Same on Tuesday and Wednesday , we are not surprised as we have come across many that if you mention spinal injury they will do anything except actually work hands on with the patient. If I had anything to do with this type of operation again and that it involved a Spinal injury patient I would recommend that the rehab be carried out by specialist spinal physio would are not afraid of what Spinal injury means but have enough joint mobilisation knowledge to give rehab on a joint replacement. Not such a loss in this case for us though as I carry out a lot of passive movement with him as part of our daily routines, we just feel a bit short changed that's all not being treated the same as the able bodied patients on the ward.
Hubby recovered pretty well , although because of the terrible food at RNOH I did start to become a bit concerned that he was surviving on baked potatoes and apple crumble as he could not stomach anything else on the menu. He had become dehydrated as his urine colour and amount told me so. We were therefore pleased to be told he could go home on Wednesday afternoon. We explain to the nurses that he needs an ambulance that could take him in his wheelchair but need a crew with at least one member that is EMT qualified , just in case of emergency and with the weather being so bad. So the nurse orders a technical ambulance for our journey home.
On the Wednesday we had to get Hubby's Baclofen pump refilled then after that we were free to head home. We got organised making sure we were all packed and ready . We let transport know that we are ready just in case our allotted crew is also ready a bit earlier than we had ordered.
From here on things went awry ...
feedback from the transport office was not accurate and led us to believe the type of crew requested was not being made available. Therefore trying to be helpful I say we will risk it with and ordinary crew as long as the crew are happy taking the risk especially in light of the weather closing in. Time was getting on, people were dithering , Hubby by 2pm had , enough and pulls the plug, which causes knock on problems because of the high demand on beds at this time. The Out Patient Manager whose department transport comes under, comes to apologise to Hubby, but he by this time is in no mood to listen. Apparently we were allocated the type of ambulance we had requested but it got delayed due to the weather , not the info conveyed to us. I had a quiet word with him on the side, telling him I was not impressed with his departments communication skills or management in a crisis situation i.e. the weather. I was thinking back on what we used to do in my traffic control days, where keeping the customer updated was paramount or else the power stations would not have had enough coal to burn.
The next morning the manager must have taken the decision that since we were willing to risk travel without an EMT the day before it was totally okay to provide a small mobility type van to transport us home. As soon as it showed up I knew it would be too small to fit electric wheelchair + special mattress + luggage and also have room for me to look after Hubby. Another hour delay , so we negotiate putting Hubby back on a bed for a while while we wait for a more suitable vehicle. Eventually a mini bus type vehicle turns up with just a driver, no EMT , but we need to get Hubby home so we risk it.
Thankfully it was an uneventful journey and we did not need to divert to the nearest A&E. Very annoying that in a hospital that deals with people that suffer from the potentially life threatening Autonomic Dysreflexia every day the transport department do not treat the potential risks in a sensible way.
RNOH Feedback scores :
Surgery 10/10 - Nursing 9/10 - Rehab 4/10 -Accommodation 3/10 - Food 1/10- Transport 1/10
Hi ! Angela & poor old Terence ...
ReplyDeleteI've only just read your blog ... once again, it's totally unexceptable the way you get treated by the NHS. These so called professionals clearly have no understanding or proper care and attention to detail with all that is required.
You are both always in my thoughts and prayers, Here's hoping that Terence's new knee makes things less painful.
Your both amazing individuals that deserve much better treatment ... I only wish these people would be more considerate and respectful.
Tours indeed for the cause,
Cllr. Robert H. Brown
Ramsey Town Council
Thank you for your continued support.
ReplyDeleteHubby is lucky to have a strong advocate like you with him in hospital. Although I feel fortunate to have been treated well overall in Canada's medical system after I had my brain surgery and stroke (as was my mother when she spent a significant time hospitalized when she had cancer), there were definitely times when my family had to step and say, "Hey, this needs to be done differently."
ReplyDeleteI have bookmarked your blog and will be back to read to read more...
Thank you it is gratifying to know people actually read what I write. Stay well and happy.
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