RNOH: Surgery full marks , Transport 1 out of 10

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

Surgery Day

08:00 in the morning yesterday, Friday 17th August, the Anaesthetist arrived to take a very detailed medical history. So Hubby asks me to do the talking as he gets a bit wary of repeating his story of all the operations since 2007, his allergies and particular on going medical difficulties. Nearer to 09:00 the plastic surgeon sent his under study in with the consent forms to sign, while he stayed in the office next door. Odd to say the least, OH not impressed.
Just after 09:00  the porters came to take Hubby to theatre. Before he goes we label his left knee as "fragile" to remind the team to take care so his knee does not blow up with swelling.

While he is in theatre, I go do some laundry  and talk briefly with the accommodation manager to obtain a room key just in case I cant manage to  continue looking after Hubby during the night due to his new bed turning regime. Currently live off 5 hours sleep a night, anything less may become too detrimental to my health. 

11:30 meet Hubby back in recovery. He is pale, groggy but awake and surprisingly quite "compos mentis". He has two drains attached to his back wound. syphoning off the blood into two sport drink sized bottles.  They have also given him a huge 1 litre bag of IV Hartman fluid, which worries me some what knowing how his one kidney will eventually over the coming while react to that, over producing urine. So to be on the safe side I give him a catheter to drain off any excess. No reaction yet, only a normal amount. Can be potentially serious not to manage as can result in an Autonomic Dysreflexia attack. Whilst in recovery we see one of the other surgeons giving some feedback to his patient re the success of the operation, Hubby is slightly irked that he is given none.

12:10 we arrive back on the ward. Negotiate straight away re removal of the oxygen, the extra fluids and the 'flotron' boots which are by now causing painful spasms in his leg. We discuss with sister the care regime regarding turning as Hubby has to avoid laying on his back . We try putting him on his left side and he finds it extremely painful , so the plan is amended to 4 hours on right side alternated with an hour on left side. He also negotiates a special position for eating as he cant eat when laid down, his muscles having been weakened by his spinal cord injury means he has to have some of the gravity of sitting up to eat his food. By this time lunch is on the ward, fish and chips. It was horrible, re heated battered fish and the chips well Hubby took a bite and spat it straight out as it exploded in his mouth, being too powdery and dry. I make a dash to the hospital canteen and pay for some fresher looking fare which he managed to eat. They take your benefits away from you because you are supposed to be fed and watered in hospital, what a joke.

15:00 I decide to do another catheter, thank goodness I did, I was right, his kidney has kicked in,  huge amount of urine collected and again at 18:00, 23:30 , you know that physics law of gravity what goes up must come down, well here's a new one 

what goes in must come out....

There's Patches & There's Patches

Weekend

pretty uneventful, starting to get into a routine, up at 6am do his catheter, lie down for another 20mins, up roll up bedding, put mattress into vacuum pack bag roll out the air. Get a wash or shower, ready for another day. Saturday got out to ASDA in the afternoon, bought a really cheap DVD player as the ones on the provided TV's are not working and some food for myself for the week.

Monday 2nd July

Lots to do on this day. Try to co-ordinate everything with the busy nursing team, we manage it, sort of, but a bit manic. 2 lots of IV antibiotics, bowel emptying, vacuum dressing change, sounds easy when you say it quick. Every item takes time and can not be done at the same time. The Etrapenem Antibiotic takes 1/2 hour, the [x-]mycin one takes nearly an hour, bowels 2 hours, vac dressing 1/2 hour, then there's lunch and dinner, as you can see the whole afternoon is shot. Well we get Hubby settled after all that poor dude is knackered. Then just before 6pm the drug run, brought us a bit of a laugh. They tried to prescribe Nicotine Patches instead of his pain patches. Very funny since Hubby has never smoked and was a keen sportsman before his illness. We could have been upset by this but you have to keep a sense of humour about these things.

Yesterday.

Got up as usual. Get Hubby his breakfast, look out of the window and see a beautiful little beasty.

A little dear, thought it was a goat at first but no it really is an urban dear. Yesterday was quite busy, doctors rounds and met up with Hubby's OT again. Hoping to mobilise him in a wheelchair with pump attached. Any way we will see. Have a bit of do with cleaner he has a thick heavy cold, coughing and sneezing and then wondered why I didn't want him anywhere near Hubby.

Progress & Recognition

We left the house at 11am in an ambulance with our just in case paramedic on board. Hubby laid on his back positioned on a piece Roho cushioning to try and save his pressure sore from getting even worse. There he laid for the 1 1/2 journey feeling the pain cursing through his body with every bump and lump in the roads. His swollen feet on fire with the neuropathic pain.

We phoned the Outpatient Assessment Centre Bolsover Street, Central London, when we were about 15 minutes away and to their credit, porters were waiting for us to take us up to the first floor appointment. No sooner had we arrived and they decided to send Hubby for some more x-rays, which we found rather odd since in the preceding weeks, both MRI / CT scans had already been taken. Oh, a different angle is required with Hubby sitting up to show how his spine looks under the pressure of gravity. Okay we said, not sure how we will accomplish that for you as Hubby can not sit up unaided. Anyway we managed it, sort of, with me and the radiology nurse helping to prop him up. I love how these consultants order these tests and do not have a clue how difficult it is for the patient to actually do it.

We eventually got to see the consultant after a further wait. By this time the wound blood was starting to seep through the dressing, so I guess he got to see it at its worse. He did not seem to deliberate for long before announcing to his colleagues, that a bed needs to be found urgently for his patient. They will try and get him in early next week, or as soon as a bed becomes available. He told Hubby that he hoped he realised that it will be a prolonged hospital stay, we said what about a month , he said no maybe longer. He mentioned something about Hubby's Baclofen pump being a possible extra source of infection, that was something new to us which we will have to research what he meant.

We thought we were finished so asked the ambulance crew up, but no apparently they wanted to do  pre-admission procedures to apparently save time next week during his admission. Hubby by this time is getting very grumpy, having not being able eat, being in pain etc etc. The poor Doctor taking the bloods & details got the brunt of Hubby's displeasure, which I hope he does not take personally.

We eventually set off for home at about  5.30pm. On the way back the driver got a bit lost and we ended up on the M1 rather than A1 so Hubby had to endure an even more bumpy cross country trip. At one point I thought we were in medical trouble with Hubby as he went as pale as a white sheet, his face contorted in pain. How he managed to keep it together I do not know, as even myself able bodied as I am was in pain, feeling sick etc. We arrived back home just after 7. 8 hours since leaving home in the morning.

Can someone tell me how this is conducive to good patient care, well being. It is about time specialist units like this made use of information technology , doing consultations in conjunction with local doctors via video phones.

So now we wait for the available bed at RNOH Stanmore and another torturous journey to hospital. At least we have a few days to get everything ready.

Overall a successful but painful visit .....

The Inequalities of Life in the UK, Medical Apartheid.

Hubby is getting his 7cm x 7cm thoracic, spinal deep, grade 4 wound, dressed every day by the local nurses, who keep telling us he should be in hospital, because of the amount of bleeding, swelling . Do the Doctors not have a duty to listen to their concerns ?

It was with some irony, that I watched the news of a certain high profile elderly gentleman being hospitalised with an UTI. Most of us plebs would be thrown a bottle of antibiotics and be told to get on with it. Having said that  I am glad someone in this inequitable country is getting the medical treatment needed to stay healthy, and wish him long life and health, as I would any fellow human being.

So its been 4 months 4 days since Hubby sustained an injury to his back whilst on holiday. The wound is not progressing in a timely manner from the initial, Inflammation Stage è Proliferative èMaturation . Most documents I have read say that stages 1&2 should last no more than 2 months, where as the last stage can take months - years. While he still has the necrotic tissue in place his wound stands no chance of healing over and is a ticking time bomb for possible infection, and further destabilisation of his spine. Only reason he has not got systemically sick already is the broad spectrum antibiotics he is taking. 


There will be no surprise to many readers of this piece, that there is Medical Apartheid in the UK. If you have money you get treated straight away, if not they leave you as long as they think they can get away with , gambling  that you don't get too sick to treat, kind of hoping that you die so problem goes away, or fire fight as you have to go into hospital under emergency rather than urgent conditions. Do not let anyone fool you , your hospital admission unless you are in A&E and at deaths door today, is based firstly on how many spare beds, surgeon schedules, not on whether you have an urgent clinical need to be medically sorted. 


As I said its a gamble taken by the admissions people who do not always know how ill you are, what effects the delay will have on your long term life expectancy or quality of life. One might cynically  ask , and do they care? probably not. There will be no personal accountability for the decisions that they make. 


Make a complaint , be prepared to receive a letter that bears no relation to the reality that you went through, no proper investigation, no root cause analysis, just trite politicking. Remember the NHS is not a learning organisation, in the management organisation meaning of the word , it repeats and repeats the same mistakes over and over again. One life lost or ruined is one too many in my book.


So all I can ask is please do not play Russian Roulette with my Hubby's life, I like having him around. One family funeral is enough this year for anyone.