Friday 3 October 2008

4th Time Lucky?

I have just got back home this afternoon after 2 and a half days on an orthopaedic ward and a 2 hour operation to fix the right hip joint that dislocated 3 weeks ago.

Both legs are the same length again and I have a new ball at the end of the femur which is the same size as the previous one and not larger as I was led to believe might be necessary.

My wife and I had arrived at 06:50 a.m. on Wednesday at the theatre admission unit at our local hospital and we were asked to find a seat in the rapidly filling small waiting room which had an overflow of seats along an adjoining corridor.

After about 90 minutes the Senior Registrar turned up and asked for a consent form which we discussed and I signed. He mentioned that he was not prepared for the amount of administration he would have to do when he started studying medicine and felt too much of his time was being spent chasing up and managing others.

I was told I would be third on his list. After about 12 patients (mostly with Orthopaedic problems but thankfully not all to be seen by the senior registrar who would operate on me!) had left, I eventually left the waiting room after a bay had been freed up for me to change into a theatre gown and be swabbed (for MRSA colonisation) etc. When I left the waiting area there was only one other patient still waiting. After this initial 2 hour wait I was somewhat rushed through. I was told that the 2nd patient had required some complex blood products before their operation could proceed so I was bumped up the list.

I was welcomed into Theatre reception by Sue who recognised me from previous visits with "Oh hello again!". Half an hour later I was on a trolley in the familiar anaesthetic room but this time not with the tall Hungarian anaesthetist who had been in charge for the previous 3 visits since March.

The anaesthetist before me asked for the records and was pointed to the 6 inches of notes lying under the trolley and exclaimed "Oh I see - one of those!" He scanned the first couple of pages and sought confirmation that I had not had a pre-op assessment and realised he would be "flying blind". After a cannula was inserted into the back of my right hand, blood pressure monitoring cuff attached to my left arm and heart rhythm contact tabs stuck to my body, the Senior Registrar arrived and requested muscle relaxant and left the anaesthetist to consider whether to administer 10 or 15 mg of morphine. He decided on the higher dosage with "Oh well lets party!"

The previous week the senior registrar had said that this operation would be a short one although if they needed to they would exchange the socket as well as the head of the femur so they needed my consent to a full exchange operation. He did not however envisage any problem manipulating the joint back into place once he had reasonable access. In the event this confidence was misplaced.

My next impression was waking up in the theatre recovery room (used for all surgery not just Orthopaedics) talking to 2 nurses a couple of hours later. Of course the operation had not taken that time as I would have taken some time to come round from the anesthetic.

In response to a question about what operation had been performed, I quickly brought the 2 nurses up to date - starting with the original revision nearly 5 years ago, before moving on to the intervening post operative sepsis, 2 stage revision and previous week's manipulation under anaesthetic. As I rattled off this series of interventions I felt increasingly emotional. This soon passed but when stated so quickly it really does seem a lot to have had to endure - not just personally but by my wife and children as well.

My wife later mentioned that a colleague with orthopaedic experience did say there was such a thing as "Orthopaedic depression". I'm not sure my 60 seconds of emotion qualify as depression but I was getting near to having to face the bleak reality of the 7 1/2 years (I had to wait for 3 years for the original revision) from the original referral to hopefully possessing a functioning and stable hip joint once again.

I remembered that "this too will pass" and moved on to being positive about the future and looking forward to getting back to where I was a few weeks ago and then continuing to progress from that point.

I was taken from the recovery room to a single room in an adjoining ward while a long term bed was found elsewhere. 4 hours later I was taken to another ward and onto a bed in a 6 bed bay - which unlike the previous week was a single sex unit.

I was written up for 2 intramuscular injections each of steroids and antibiotics. The antibiotics were to be given 8 hours and 16 hours after surgery. The surgery had finished before noon but it was about 2 a.m. the next morning that I was given what turned out to be a single anti biotic injection. (i.e. 14 hours post surgery) I had been given the single steroid boost, that I was to receive, 90 minutes earlier.

The reasons for the delay were that I had not been written up by a doctor and once I had been written up the only Nurse senior enough to administer such injections for all the orthopaedic wards had been too busy to do it any earlier. If I do contract post operative sepsis again following this latest operation I will be very annoyed particularly if it could be attributed to being denied adequate anti biotic cover because of low levels of competent staff being present.

The next day I was allowed to stand up and bear full weight through both hips. The physiotherapists were pleased that I was able to move out of bed easily and to walk with 2 elbow crutches. 5 minutes later after a brief demonstration of my abilities to walk around the ward I was "signed off". A little later an Occupational Therapist arrived to assess my need for aids etc which of course I still had from the 2 stage revision earlier in the year. She needed little convincing that I would be able to manage so she too "signed off". In theory I was free to go home provided an X-Ray was satisfactory and the incision was clean.

The x-ray was ordered for the middle of the next morning and once seen by the house officer all that needed to be in place for my early discharge was the pharmacy to provide a supply of drugs and for some paperwork to be completed to let my GP know what had happened.

While waiting for lunch (and the drugs to arrive) a patient opposite - who had returned from theatre about 18 hours previously - was beginning to come around and want a urine bottle. Unfortunately his nurse call button and handset were not working. He raised a weak right arm and I went over to see what he wanted. I pressed my nurse call button twice (the first time - a nurse had come to the bed and acknowledged his need but became distracted en-route and never returned). I tried again and in all 10 minutes had elapsed before I decided I must find a nurse somewhere on the ward. As this was around lunch time the nurses were mainly involved in sorting out patient meals. One nurse responded by saying she could not help because it would mean changing out of the apron she was wearing to serve food, that she would then need to wash her hands and put on a different apron to provide the urine bottle and then wash her hands and change back again to continue serving food.

I noticed that a ward round had just started so interrupted it, with apologies, and explained to the senior nurse that Mohammed had been waiting 10 minutes for a urine bottle and was looking increasingly agitated. She excused herself and sorted it out straight away. Another example of inadequate staffing levels to cope with the demands on nursing staff which can work to the detriment of basic patient care.

As it happened the ward round I had disrupted was that being undertaken by the team that I was under. The consultant seemed pleased to see me walking around the ward and we exchanged a few comments. He had been present at the operation and the senior registrar explained that he had to call in a "muscle man" to help because they had difficulty manoeuvring the joint back into place. I thought he meant someone specialised in tissue damage and muscle reconstruction but what he really meant was that they had to call on the consultant to help provide more "weight in the scrum".

He then went on to say they had thought the consultant would provide the extra "beef" required but it turned out he was a lamb. They concurred that it had been a real effort to stretch the muscles etc sufficiently to relocate the joint and once back in place they could not dislocate it again which they try to do to work out how it might have happened so they can advise what action to take to reduce the chance of it happening again. They have put the dislocation down to scar tissue breaking down and changing the stresses and strains around the joint.

As I stood before them I noticed the Senior Registrar look down at my right foot which was pointing out about by only 5 degrees and not the 30 or so I had reported before the dislocation. I saw him glance at the consultant and (try to draw his attention to this). I wondered therefore if they might have taken this observation on board when they came to relocate the joint with a view to a straighter alignment. To my mind if I notice that the right foot again points out by a significant degree I will probably take this as an early warning that the joint is precariously located in the socket.

After some advise about how best to sit down, to take it easy and if I ever notice a leg length difference again not to improvise with a lift inside my shoe, the consultant said that it continued to surprise him that patients like me ( who have had repeated surgery to the same joint) experience no pain when the joint dislocates. Him and me both!

As soon as one morning after my discharge I have abandoned the elbow crutches for 2 walking sticks and can even manage with just one. I feel that my right leg is my own again and that I am increasingly confident when taking weight through it and realise that apart from taking things easy while the muscle and tendons in my right leg recover, I am now well on the way to my goal of walking - with or without a stick - by the end of the year so I feel back on track once again.

So hopefully this will turn out to be a case of 4th time lucky!

Thursday 25 September 2008

Return of the One Hip Wonder!

After the encouraging progress since the 2nd stage operation I have suffered a set back and now once again no longer have a functioning hip joint!

By way of background here is an email I sent to the orthopaedic surgeon's secretary which explains all except what had had happened at the time. Read on to discover how I found out that the hip had dislocated (2 weeks ago!)  and how this might yet be sorted out.

Kathryn,

You very kindly helped me contact Mr yyyyyy in the past during the run up to my recent 2 stage hip revision this year following on going post operative sepsis, for which I am most grateful.

I hope that you will be able to bring the following account to Mr yyyyy's attention and let me know if he thinks I should see him in a clinic before my next appointment which is scheduled for 24th October at 9:15 a.m.


On the evening of 11th September while sitting down I experienced a sensation about half way up the outside of my right thigh which was akin to a spasm or twitch. On standing my balance seemed to be affected. I thought nothing more of it at the time but over subsequent days became increasingly aware that things seemed different from before.

I am convinced now that I have a leg leg differential (LLD) of about minus 2 cms in my right leg. I am using an improvised heel raise inside my right shoe to compensate. If I walk bare foot I need to raise my right heel and and walk on the ball of my right foot. If I place my right foot flat on the floor I dip in height and my left knee bends to accommodate the difference in height.

(On Monday 15th September I collected 5 left shoes which have had the previous raised soles removed. If I was still using the previously raised shoes the difference would be even more pronounced.)

Prior to the "twang" that occurred on Thursday 11th Sept I was walking with my right foot pointed out by about 30 degrees. I notice now that my right foot points to the front.

It appears to me that something has changed and I do not think that I am imagining the difference. I am in no pain other than that associated with the gradual return of sensation along and around the incision line from the last operation. Although reducing there is still some swelling above the back of my right knee which I am able to massage to remove the feeling of hardness which gravity alone seems to create.

I am due to see Dr Kkkkkk, Rheumatologist at Hallamshire on Wednesday 24th September at 10:30 and will share with her my current concerns. I wonder if it would be appropriate in the circumstances to request an X-ray of my right hip to allow comparison with the most recent one, in advance of my next appointment with you in about 4 weeks time. Alternatively would you want me to see you sooner than planned, if that can be arranged?

Having had experience of LLD before I am not concerned about the fact of it and know that if necessary I can manage with raised soles in my right shoes but I do wonder if the fact of a sudden difference is attributable to a tightening up of ligaments and / or muscle ( which might explain the change in angle that my right foot now points) or if it is caused by some movement in or around the prosthesis which might warrant a more conservative approach to rest and weight bearing?

I hope you do not mind me raising this with you. I am happy to wait until my next appointment with you but want to avoid exacerbating any possible cause in the interim if that can or should be avoided.

Thank you.

Regards

Although the note was printed out,  the pressure of work meant the surgeon had not got around to looking at it before my out patient appointment with the Rheumatologist

So yesterday morning I caught a bus to the local hospital and arrived in time for my 10:30 appointment at which I shared the above email with the Rheumatologist along with copies of the 2 recent X-rays (which you can see in an earlier posting) and she agreed that a new X-ray was called for. She indicated that an X-Ray review meeting would be held later in the week and she would let me know what it showed. A follow up appointment was made for 4 months and I was given the X-Ray request form, after which I could return home.

I was seen by the radiographer inside 5 minutes and the first clue that I had as to what was going on was when, after the initial X-ray of both hips, 2 more were taken of the head of femur and acetabulum of my right hip. Conspiratorial whispers between the 2 radiographers aroused my fears that the hip joint had dislocated. When they said they were arranging for a wheel chair, to take me to see the doctor again, it was pretty clear what had happened. They could not confirm that the hip had dislocated as this was "best left to the doctor to explain".

5 minutes later I was staring at a very clear picture which showed the round head of femur isolated from and outside of the cup. It had popped out and up. To my eye it was about one and a half inches above the centre line of the socket and about an inch to the outside. (no wonder my balance was affected!) 

In a way it was nice to know and to understand the cause of what I had been experiencing but also a surprise - as I had always imagined dislocation would have been associated with a sudden movement, possibly some noise but most definitely a  lot of pain. Needless to say the image was also quite a blow as I imagined that some degree of surgery would be needed to put this right.

The rheumatologist spoke to the orthopaedic surgeon from another room as her phone was not working so I had to rely on her report of the discussion. The surgeon had said I was to go to a ward at his hospital and they would "pop it back". It sounded like this would be a manipulation and not require surgery at all. The rheumatologist could not confirm this but did agree it was possible.

A taxi was booked to take me home to prepare to get into the other hospital. I had taken a bus to the rheumatology clinic but they were reluctant for me to return home by bus with a dislocated hip - not surprising I suppose. A taxi was arranged. I rang a neighbour who agreed to take me in, I gathered overnight stuff together in an bag and decided not to have any food or drink in case a general anaesthetic would be required. I then rang my wife to leave a message but as it happened she was just finishing a morning clinic and was due to do admin in the afternoon so instead she caught a bus home and I told the neighbour his help would not be required - this time.

When we arrived on the ward suggested by the surgeon we waited about 45 minutes for a bed and eventually a nurse arrived to say that she had tried to contact me by phone so had left a message to say to go to a different ward. She escorted me to that ward and as I was being directed to a bed in one of the bays I mentioned that I had previously tested positive for MRSA colonisation but had the required 2 clear swabs yet understood I should let them know nonetheless. They checked the notes and found that their records only showed the positive test on arrival for the 2nd stage operation, a couple of months before, and they had no knowledge of the clear swabs.  I was told that I would have to wait for a side room to become available. When one did I was just settled in when I was told that I would need to move back to a 6 bed bay as the room was now required for a trauma patient being transferred from another district.

A couple of hours later the surgeon and some of his team appeared and we discussed the plan to manipulate the joint back into place under anaesthetic first thing on the next morning's operating list. We discussed what would happen if this did not succeed and I was pleased to hear that it did not require major reconstruction and in particular that the acetabulum cup would not be touched at all - so weight bearing should not be an issue. A nurse had indicated that the normal practice is to relocate the joint under anaesthetic and then to try to dislocate it again! That way the doctors understand how it could have occurred and can either take some remedial action later or advise on positions and movements to avoid.

The surgeon explained that if manipulation did not work and they felt that popping the existing head of femur back in place would not be sufficient to stop it dislocating again they could always unscrew the current head of femur and screw in place a slightly larger one which of course should be more resistant to popping out. I expect that there must be some trade off between size of ball and weight or degree of movement that is possible but will explore that later if and when I have some direct experience.

Prior to travelling from home to the hospital I "googled" the words dislocation, hip and revision and found an article published in 2002  by the Mayo clinic where over 1200 of their patients, who had revisions, were followed up after dislocation. About 7% dislocated of which 12 had surgery straight away (of these about half remained stable after 2 years and half had become unstable). The remainder of the 112 or so who had dislocated were initially treated by manipulation and of these a percentage later required surgery some later required further manipulation to redress a subsequent dislocation. The summary of the article mentioned that in 2002 not enough was known about the reasons for dislocation other than the generalisation that patients with revisions had more scarring and greater stretching of ligaments etc and that as these settled down after surgery the movement of the soft tissue could cause the joint to dislocate.

In our discussion with the surgeon he confirmed that in my case it was probably scar tissue breaking down that may have caused the movement. I wanted to know for future reference if I could have done anything to avoid it happening or could watch for certain signs that it might happen again in the future and he confirmed I had probably not done anything to bring this about. In a way this was comforting as I would hate to think I had been at all reckless.

As it happens my wife, the surgeon and I were all thinking it was unlikely that manipulation 2 weeks after the event would work and if it did the joint would probably pop straight out again - but this was left unsaid at the time although as you will hear our unspoken doubts were in fact confirmed.

I was visited by the friendly anaesthetist who had been present at the first and second stage operations and he confirmed that I would escape need for the tubes and lines that had been necessary before - as this was to be a closed procedure. It will not be many patients, I suspect who can claim that an anaesthetist has provided by far the greater degree of "continuity of care" but we greeted each other like long lost friends!

Shortly after this I was moved to a side ward again. One nurse holding the case notes had clarified that I had previously tested positive for MRSA colonisation and said it was her "eagle eyed" companion who had "spotted" this. I remember seeing a red sticker on the front of the case notes with the word "infection record" on it and had assumed this is how the fact would be drawn to the attention of staff. I was however surprised that someone could be congratulated for spotting this.

I have previously commented on the NHS being like a relay team with the best individuals but little training in handing over the baton. Well here are 2 examples. The fact that I was cleared of any colonisation was not reported back to the people who had initiated treatment so they had to assume I was not clear "because their records did not show this and they could not take my word for it" - fair enough. But, to add insult to injury, the mechanism for drawing attention to the fact someone posed an increased risk was not sufficiently clear for it to register without someone being congratulated for spotting it!

I am not going to raise this with the infection control coordinators as they seem to have enough to be getting on with after my last reflections on the difference between rhetoric and reality of infection control but at some stage in the future I will try to take this issue forward.

Being admitted as an emergency I had to wait till 12:40 the next morning for the junior doctor to see me and take a history including signing me up for medication. I had written this down for the rheumatologist so had that note with me which I handed over to the junior doctor along with recent blood test results. This saved a lot of time so I was able to get off to sleep about 1:00 a.m.

However I must admit it took a little while to get off to sleep as I  reflected on what I had  observed with a 100 year old lady in a bed opposite me while I was in the 6 bed bay. 

She needed hip surgery (probably following a fall and a fracture) . She had been seen in the morning and seemed fit enough for surgery but later in the day she was developing fluid on her lungs. She was receiving oxygen through a mask and had apparently been catheterised. In addition she had a cannula in one arm, connected to a line (probably saline) but through which she could have injections administered. She was obviously confused and distressed. She called out for nursing staff who, as is often the case were busy passing through on one round or another and could not easily stop to provide the comforting words ( and touch)  that she needed. My wife at one time spent some time with her and afterwards I and a fellow male opposite her would try to call for a nurse or try from our beds to calm her down. When nothing happened she would look from one of us to the other silently mouthing words we could not hear and stretching her arms out as it pleading with us to do something to help her.

I overheard a discussion between 2 doctors after one failed to get her consent to have another cannula fitted prior to contrast medium being injected before going for a scan. They had ascertained that she knew where she was and why she was in and therefore she was fit to give consent which she was withholding so they had to respect her wishes.

For the best part of an hour  she continued calling out saying in a most plaintiff manner "please help me" and looking around for anyone to respond. She became increasingly desperate and tried pulling lines out and rolling back the bed covers which seemed to be uncomfortable. What really got to me was that she must have lost touch with where she was and why she was there because she resorted to saying "please help me - I'll tell you anything you want to know just help me - I'll give you names and addresses if you want , yes I can give you names and addresses!" I'm sure she must have thought she was being tortured!

She was calmed down when a senior nurse spent a few minutes with her talking calmly and stroking her hair but a few minutes later deprived of this degree of human comfort she was again distressed. Her escalating anxiety was only suppressed after she had a shot of morphine administered through the cannula in her arm. It was interesting in a way to her gradually quieten down and then fall asleep. She lay asleep and at peace but in what looked like a very uncomfortable position. She was in this condition when 2 visitors arrived and were informed of her "progress" they were told she had refused the further cannula and in answer to a question was told it probably would not affect the operation to fix her hip which would probably proceed.

I have no way of knowing what will happen to this lady but cannot help thinking that the chances of her having a successful outcome and walking again free of pain are very slim. She is now bed bound and not exercising, her lungs are filling with fluid, because she is not having a scan the doctors might not be able to ascertain the extent of the problem so she will remain at risk under anaesthetic. 

The experience confirmed me in my desire not to have my life end like that - if I can avoid it. Not that I expect to be around till I'm 100! Three score and ten remains a very optimistic score for me but I am convinced that the discussion of NHS priorities needs to move beyond the emotional "saving of lives" and be replaced with "deaths deferred". Perhaps once that happens less  attention will be given to the length of life and more to the quality of one's death. The World Health Organisation's mantra of "adding life to years as well as years to life" and the trade off between "cure and care" sum up this need for a more mature discussion of what the NHS is and should be about.

Returning now to the procedure itself. I was wheeled to theatre reception area around 8:40 a.m. I was transferred to a trolley and wheeled into the anaesthetic room about 9:00. I had a single cannula inserted into the back of my right hand through which I was injected with a sedative. I remember the senior registrar introduce himself again and ask for muscle relaxant ( The surgeon was in London and I knew the Senior Registrar would be in charge but that he could call on the asssitance of another consultant if necessary). I guess a little while later the sedation kicked in or was augmented so I was unaware of what happened until recovering outside of theatre. The friendly anaesthetist informed me that it had not been successful and I then overheard a discussion between him and the senior registrar to the effect that I would be on the list next week for "surgical reduction".

I was back on the ward by 10:30, had been in theatre about 40 minutes (it was thought I would only be there for about 15 minutes) and by 11:30 was ready for food and drink which duly arrived at lunch time.

I was discharged at 4:30 p.m after speaking to the senior registrar who confirmed that it was not successful and that I would be asked to come in next week for an open procedure. My wife and I fired many questions at the guy who was confident that next week he would only need to make a small incision and would pop the joint back in and as a result I would not need tubes and lines, should be able to weight bear straight away as they would not reconstruct the socket at all and I  would probably be discharged home after a few days.  If necessary he would fit a larger ball to the end of the femur but that would not require any further cutting of tissue.

He confirmed also that the manipulation relies on brute strenght and that he and 3 others tried, including the consultant from an adjacent theatre and despite being drenched in sweat they could not relocate the joint. When he phoned his boss in London and told him the news his response was " I didnot think it would" - so we all thought the same but didnot say it - it was worth a try but the best chance of success is straight after dislocation while tendons etc are still loose - not 2 weeks later and after driving 300 miles from Cornwall, followed by climbing stairs, driving around town, getting on and off buses and ( no small feat in itself) walking from the hospital bus stop to the rheumatology department (up a steep hill and some distance away)

I have one more observation to make to round off this tale of woe. On the way out of the hospital , getting into a lift,  I passed a gentleman also using 2 elbow crutches but with a metal cage running on the outside of his right leg. In the lift we compared notes and he said that he has already had 5 operations since May this year. He originally came in for a minor operation on his knee (probably keyhole removal of debris from a cartilege - or similar exploratory examination) but his knee became infected so he has had repeat visits to theatre to clean it out and repair the damage to his knee. He explained that he cannot bend his knee now without using spanners to adjust nuts on the bars that are screwed into his leg in at least 8 places. I noticed a spring running on the outside of his knee which probably keeps the required tension while he gradually "undoes" his knee to bend it when sitting down. 

Despite my own problems 2 things help me retain both a sense of proportion and optimism (most of the time) - the first is "this too will pass" (a much more succint expression of Kipling's If you can treat those imposters of success and failure as the same) and "however bad you might think things are - there's always someone worse off than you". I guess I did not expect the second of these to be so well demonstrated getting into a lift on my way back home while I wait for "only" my 4th operation of the year! 

As a result of this latest chapter in the saga, I can retrace my steps (or should that be hops) and  once again am able to live down to the claim of being a "one hip wonder".


Infection Control Reflections - An encouraging response

Some time ago I received the following encouraging response to my reflections on infection control practice in my local acute hospital:

Dear Mr xxxxxx

Following our previous e-mails I have some information to share with you.

I have had some dicsussions with the Lead Infection Control Nurse Specialist and we are looking into various ways we can improve the consistency of delivery of the topical treatments for MRSA. We feel that a multi-pronged approach is likely to be most effective and the ideas listed below are just for starters.

Topical treatment issues

    • We are looking into producing posters for applying treatment which would include pictures along with relevant brief text. These could be presented to wards as posters for display but could also be produced as an information leaflet for patients that accompanies the topical treatments to the ward. We will discuss with Pharmacy re putting these posters/leafets in with the topical treatments which could help overcome the lack of information you experienced over the weekend and form part of the overall process improvement.
    • We are investigating the possibility of a topical treatment pack which would include antiseptics, cotton buds, alcohol gel, wipes, information etc but we'd need to find out how we could make this work.
    • We are looking into doing a series of roadshows to educate/re-educate staff on how topical treatments should be applied etc. We might borrow a resusci-Annie type model rather than use real flesh - unless we get volunteers!

Information
We are looking into the general MRSA information leaflet with a view to reworking it. One problem we have is that information leaflets have to be pitched at a certain level ( I think it is a reading age of 11) and if we add too much information we are asked to remove it as it is deemed to be too complicated. However, this is of course difficult given that this means that leaflets are often too bland etc for many people. We will see if we are allowed to produce a range of leaflets but there are all sorts of regulations etc that may prevent this.

Unanswered Questions
1) Our advice re shaving is to use disposable razors for the course of treatment, ideally using the Hibiscrub as the shaving foam. Any personal electric razor should also be thoroughly cleaned prior to re-use in case it's become contaminated.

2) The timing of MRSA screening is continually being reviewed and in fact we generally have a result on which we act within 18-24 hours. The Trust laboratories will shortly be processing and resulting MRSA screens seven days a week (currently 6 days a week) so any weekend delays should be a thing of the past. The issue of discharge screening is one on which there is no national agreement. One problem is that GPs have a variable response to being told a patient has MRSA. Many feel that they do not know what to do and therefore do not want to be repsonsible for informing patients of the results or for any follow up and mangement (I must stress some GPs are great but not all). We have addressed this issue with the PCT and we are currently appointing a PCT microbiologist and one of their roles will be to look into how to manage MRSA in the community and the education etc of community staff.

3) There is no correct dilution for Hibiscrub; it should be applied neat as you discovered.
4) We make widespread use of Infection Control policies and procedures in Sheffield Teaching Hospitals. For example, promotion of hand washing and audit of hand hygiene standards is a key feature of our Infection Control Accreditation Programme. Gloves and aprons are intended for routine use with non-infected patients when having contact with blood or body fluids such as dealing with commodes/bedpans, cleaning incontinent patients etc. Each of these is consistent with the approach of standard precautions, i.e. a set of precautions that should be applied at all times, with all patients, covering hand hygiene, use of protective equipment, disposal of waste, handling of laundry, dealing with blood spillage and covering of cuts/lesions. These are reflected in STH Infection Control Guidelines.

We agree that there is a tension between 'have to do' and 'should do' (point 7 of your reflections) but these targets have actually proved quite helpful to us in IPC to focus minds and resources. There are such a large number of issues which need to be addressed overall and there was a need to refine these to key ones at least to start with. Once these have been addressed other issues can be addressed over time. Please do not think that we will stop our efforts once the headline grabbing issues have been addressed, we have a long list of things we plan to do eventually. As you say these may vary locally but many effect the majority of areas. Also even when we do address something over time people forget etc and things need to be re-iterated time and again. As a Team we do try and help indivudal areas to address issues that are pertinent to them and this will increase once the big, healdine issues that effect all areas are sorted.

We would also like to support the senior managers in the Trust in respect of their efforts in respect of Infection Prevention and Control. They may not be perfect and perhaps come across as having the wrong focus and response when challenged but in our experience they are amongst the most supportive and receptive group of NHS managers and executives that we have come across. We will try subtly to suggest to them ways of reflecting this when they discuss/respond to infection issues publically etc.

Once again , thank you for sharing your experience and thoughts with use. The issues you have raised have been very useful and we will act on as many of them as we can. Things may takes several months to come to fruition but we do want to provide the best service we can although it is a long term project and will keep us busy for many years to come.

Kind regards, Christine

Progress - so far

A visit to the Out Patient Clinic on 19th August allowed progress to be reviewed with the surgeon.

At a previous clinic I had turned up with a memory stick to see if I could download some recent X-rays. The surgeon had a new wide screen computer monitor and was indeed able to bring up a list of recent x-rays and to display them. I had been sent some old X-Rays that had been digitised some time ago and was familiar with the viewing software so I knew it could export images. The surgeon was happy to try but all we achieved was the creation of a folder on my memory stick.

Since then he had acquired the know how and almost before we sat down he asked for the memory stick so he could provide me with the files. He was disappointed when I said I had not brought it this time but would next time around.

Nonetheless, as before I took a couple of photos with a digital camera and reproduce these . In time I will replace these with clearer images that will be downloaded - but these are clear enough to see what I tried to describe before.


I still had a stitch that had not dissolved and the surgeon was quick and quite keen to remove it in an infection free manner. We then discussed the mechanics of the solution and he was able to confirm that the segments were solid metal and not hollow as I had thought. They were not screwed into each other but instead were mortised into place with a hammer that compressed the dovetail end section into a recess at the top of the piece below.

He was keen also to show off his handiwork so we looked at the X-rays. My wife and I were both pleased that he took this degree of pride in his work.

He was happy for me to try to walk with one walking stick or preferably a single crutch and to start driving. I was not yet to fully weight bear but if all went well would be able to do after the next Out Patient appointment which was booked for 2 months time.

Friday 8 August 2008

A Minor Odyssey

Like Leopold Bloom in Joyce's Ulysses I had a minor adventure yesterday in my case 3 weeks after surgery. I ventured into town for the first time in quite some while, by myself aided only by a pair of elbow crutches. As I have not yet been cleared to drive the journey would need to be made by bus.

The reason for this was a visit to the chiropodist who I last saw in February. Unlike the local hairdresser who has been happy to visit at home 3 times this year the chiropodist, who I have visited for a few years now, does not do home visits so I have had to wait till I felt able to make the journey.

The appointment was for noon. The journey into town usually takes 20 minutes at this time of the day. There are 2 bus services that follow the same route that would get me near enough to the chiropodist's premises in the centre of town. Each service runs a 10 minute frequencies.

I needed to allow sufficient time to slowly negotiate the long and steep and sometimes damp paved drive from our house to the road before making my way on pavement around a corner and down hill to the bus stop. I always tend to assume that I will just miss a bus and allow an extra 10- 15 minutes for this. In the event I left home at 11:15 having just watched the start of the 4th test match against South Africa at the Oval.

The chiropodist is a private practitioner and any missed appointments have to be paid for. I was late once but was let off as he managed to squeeze me in between other appointment. On that occasion I was travelling by car and one of the main roads into the centre of town was blocked because a open top Sunbeam alpine had broken down astride a bus lane and the leftmost lane of two for everyone else. I think the driver realised something was wrong and was trying to pull across the bus lane towards a nearby filling station to get it off the road but was out of luck. As a result buses had to negotiate the way into the outside lane. This might not have caused a bottleneck but unfortunately the little sports car had broken down opposite a narrow lane used by large Tesco delivery vans and one had been trying to make its way out which usually meant stopping traffic across all lanes while it traced a graceful arc onto the public highway. As you can imagine this took some sorting out and I ended up 15 minutes late.

Yesterday my journey was similarly delayed. About half way to the centre of town on the bus route I take is one of 2 local hospitals. There are always plenty of travellers getting on and off at this stop and many times there are 2 or 3 buses waiting. In fact this stage on the route is often used to make up or take up time as appropriate. If buses are late they don't hang about but if they are early they can wait up to 5 minutes before setting off again. In fact if they are on time they are expected to wait 3 minutes so that is built into the overall route time calculation and is one of the timing buffers - the others are at each end of the route.

Before that however I safely negotiated the long drive and at the end stopped for a minute to chat to a neighbour who was gardening. He was part way through yet another course of radiotherapy and we agreed to compare notes next time we met. As luck would have it I turned the corner onto the main road ( and bus route) and made my way slowly downhill towards the bus stop. There were 3 people waiting so I thought even if a bus came at that moment there was a chance I could still catch it. After 5 yards I noticed movement among those waiting and one stuck a hand out. I stopped to look over my shoulder and sure enough a double decker was approaching. I was not going to rush as I had allowed for just this eventuality - If I made it by walking at a comfortable pace that would be a bonus. I watched as the 3 passengers queued up on board to pay and was still a few feet from the back of the bus when it started to move away.

I was pleased that I had not succumbed to the temptation to make a rush for it and settled in to wait up to another 120 minutes for the next bus. About 8 minutes later a single decker bus arrived and the driver dropped the platform so I could get on more easily with crutches. I presented my mobility bus pass ( the first time since it had changed to the national scheme) and was told to place it on the scanner which was pointed out to me. I did this and the scanner bleeped satisfactorily . I asked the driver to wait until I was safely seated which he was happy to do. A gentleman occupying one of the 2 front double seats asked if I would prefer to sit where he was to which I said yes and thank you. These seats offer more leg room and have a vertical support bar which is handy when the bus turns corners. He moved to one of the side bench seats. Once in place with crutches supported I shouted to the driver that I was safely seated and he set off.

A few stops later and we turned the corner towards the hospital. The vertical bar came in handy and stopped me falling about. We pulled into the bay outside the hospital and a few people got on the bus. Then the driver got out of his cab and said we had just been hit. None of us felt a thing but apparently a double decker bus had pulled in to the same bay and not wanting to stick too far out into the road and obscure line of sight for cars turning left out of the hospital onto the main road had pulled just a little too close to the bus ahead.

The diver explained we would be delayed 5 minutes while he exchanged details. After a couple of minutes some people got off to board another bus that had stopped just ahead. After a few more minutes even more people got off. I decided that I would wait until the next bus and if we had not set off by then would transfer. Given that I could not manage this too quickly I stood up and looked backwards to get as early warning as possible of the arrival of the next bus. As I was doing this the driver reported it would take longer than he thought and suggested we all transfer to the next bus which was just arriving. I now had 15 minutes to make the appointment. I reckoned as we were about half way that might just work out as I would get off after 10 minutes and still have 5 minutes to cross the road and make my way up the steep hill and around a corner to get to the chiropodists premises.

This is how it turned out and I managed to enter the premises he uses as the local town hall bell struck!

The return journey required a little planning. The nature of the bus routes around the city centre mean that negotiating one way streets sometimes means it is sometimes more sensible to complete a journey into the main transport interchange where passengers have to get off the bus, wait in the nearby shelter for 3 - 5 minutes then - when it is ready to start off again - reboard.

In my current state of mobility it made more sense to do this than to walk a couple of hundred yards to pick up the same bus a few stages into its return leg.

To my surprise the bus driver allowed me to stay seated in his bus at the interchange - for which I was very grateful. Common sense does sometimes permeate through even the most officious sytems.

The rest of the return journey was relatively uneventful but nonetheless I felt a real sense of accomplishment when I finally sat down again once back home.

Tuesday 29 July 2008

Infection Control - Rhetoric & Reality

I reproduce below the content of an email I sent a few days ago to the Coordinator for Infection Control for our local acute hospitals Foundation Trust. The message compares the Trust's infection control policy with recent personal experience after being told I had tested positive for MRSA.

The content is fairly self explanatory and relates some of my previous experience and interest in this area. The term nosocomial infection basically means the entire range of hospital acquired infections and while incorporating the headline problems of MRSA and C. Difficile, includes all avoidable infections contracted while in hospital. A large proportion of the community have MRSA colonisation in the nose and/or groin areas. It does no harm provided they are not immuno supressed and avoid transferring the bugs to an open wound. If it then becomes established in the blood stream it is called a bacteremia. It is the level of bacteremia's that hospitals monitor to demonstrate the progress they are making in hitting government targets to reduce MRSA.

I remain concerned at the gap between rhetoric and reality and wish to assist local management to avoid becoming complacent and overly self congratulatory.

I have changed names to "protect the guilty" - otherwise the email is unedited. By the way the doctor charged with responsibility for co-ordination of infection control policy is known as the DIPC which is pronounced by those in the know as "dipsy" - what a great example of a self deprecating acronym!

Dr B.......,

BACKGROUND:

We met on a couple of occasions in the past when I was one of the original Patient Governors of the Foundation Trust.

I expressed a particular interest in nosocomial monitoring arrangements and we discussed how such a system might be designed once test results could be obtained on a more regular basis from existing laboratory systems. I had experience of designing a graphical module of an Executive Information System for 2 hospitals in Saudi Arabia which provided both comparative and chronological reports and offered to assist if that would be useful. You were at the time preparing a proposal to the Trust Board for the establishment of teams of ward based co-ordinators.

Adequate control of hospital acquired infections was the first of 4 reasons I put forward in my election statement for wanting to be a Patient Governor. At the first meeting with the Chief Nurse, after being elected, I asked whether any system existed to regularly monitor nosocomial infection rates with a view to the early identification of potential hot spots. I was told, erroneously as it turned out, that a system , along the lines that I had described setting up in Saudi Arabia, was then in existence. I was content with this response and concentrated instead on other matters that I had identified in my election statement.

Soon after election as a Governor I developed post operative infection in my right thigh which required an operation to clean out and resulted in an exacerbation of renal impairment requiring 2 weeks on dialysis and about 4 months recuperation at home to have the strength to get out and about outside of the house. 4 years on and after significant tissue and bone loss due to infection a 2 stage hip revision has been carried out. I was discharged from ........ ............. ward 2 days ago on Tuesday 22nd July.

Prior to admission I had been swabbed for MRSA colonisation in nose and groin on several occasions and had always been pleased when the results were "negative" (I have used quotes to signify that I understand that a negative result only means an undetectable level of MRSA)

In accordance with current policy I was swabbed for MRSA on admission for the 2nd stage operation on 16th July and again on return to the ward from POSU on Friday 18th July. I was notified that I had tested positive on Saturday morning 19th July and would be moved to a side ward once one became available. The nursing staff had I think previously determined that I had some insight into the implications of this and were in any event busy with other things so I had no further information or guidance about what actions I might need to take.

I want now to describe as factually as possible my experiences and leave you to compare how far this accords with current guidance. I would then like to reflect on this and identify a number of areas where I think current practice needs to be reinforced by further training; where current information for patients needs to be reviewed to improve the likelihood of success in treating colonisations and finally to seek clarification on a number of matters that I remain unclear about.

I am doing because I wish contribute in a constructive manner to something I have been concerned about for 20 years and in no way desire what I have to say to be treated as a complaint. Unfortunately complaint handling is so defensive within the Trust that it only serves to frustrate and deny opportunities for organisational learning - and that is the last thing I wish to see.

I do hope that you understand the background to my contacting you and will wish to continue to read what I have to say and recognise that I do this in a spirit of continuing process improvement rather than of criticism.

SPECIFIC EXPERIENCE

(1) On Saturday morning 19th July I was told - in a whisper so that other patients could not hear - that I had MRSA in my nose - not that I had tested positive for colonisation only. From previous knowledge I knew I did not necessarily have a bacteremia and that what I had could be treated. I indicated to the nurse concerned that I understood this could be treated and was told that was so and told that I would be moved to a side room once one became available.

(2) Shortly after this the physiotherapist and assistant came to help me get out of bed and bear weight for the first time post operatively. The central and arterial lines had been removed the day before in POSU and I had only just had the catheter and epidural removed. As a result although a cannula was still in place in my arm it was no longer attached to any line. I asked the Physio if she had been notified of my changed infectious status to which she sought clarification. I said I had tested positive for MRSA colonisation in the nose. She confirmed she had not been told, thanked me and disappeared along with her colleague to acquire protective apron and gloves. A zimmer frame was borrowed from another patient, my progress monitored and while I was transferring to a relocated and higher than average bedside chair, the zimmer frame handle was wiped before the zimmer frame was returned to the patient from whom it had been borrowed.

(3) I was removed to a side room later in the afternoon on Saturday 19th July. I still had received no further guidance about what I could and could not do. I was provided with a plastic wallet containing some wet wipes and told these were for my sole use and not to be used by any other patient.

(4) On Sunday 20th July in the morning after the drug round a nurse left a carton containing the nasal ointment and a 500 ml container of Hibiscrub and said she would return shortly to help me to wash. I understood from her that I had to apply the ointment 3 times a day to each nostril - no cotton buds were provided so I assumed I had to use a little finger instead. When the time came for a wash a bowl placed in a plastic bag was filled with hot water and a capful of Hibiscrub was poured into the bowl. I was told that I had to wash my face and upper body and wash my hair with this. I used my own flannel but on her return the nurse provided me with some disposable paper flannels and asked me to wet one to "wash" my hair with. I understood from her I would need to repeat the hair wash on day 4 of the treatment. The nurse used a flannel to wash my back and when I had finished drying myself with my own towel emptied the bowl and left. Later that day I repeated the use of the nasal ointment a further 2 times.

(5) On Monday 21st July I had read the patient information that came with the nasal ointment and noted that I should ensure I used hand gel or similar to wash the nozzle of the ointment tube to avoid recolonisation. The Control Of Infection Co-ordinator for the ward unit called by in the morning to introduce herself and to leave a newly printed patient information leaflet. From discussion with her I understood that I should not use my own flannel, should have a change of underwear and nightwear each day again to avoid recolonisation and should have been provided with some cotton buds to apply the nasal ointment. Shortly after this a different nurse appeared with an uncovered but filled bowl of hot water for me to wash with. She also poured a capful of hibiscrub into the bowl. This time I used the disposable flannels provided. I continued to apply the nasal ointment throughout the day. I read the patient information leaflet and realised that I should have been provided with a clean towel each day. I noted that the ward staff did dispose of the bedding in a plastic bag each day in accordance with the guidance in the patient information leaflet.

(6) On Tuesday 22nd July morning a Health Care Assistant came to help me wash. She filled a bowl covered in a plastic bag with hot water and asked me I if I had my own soap and flannel . I assumed from this that she did not fully comprehend that I had to wash using the hibiscrub and disposable flannels. I suggested to her that I would need a clean towel which she was happy to provide. I was discharged home around 2:00 p.m. and understood that I should continue the treatment until today 24th July and wait for 3 clear nasal swabs before being declared "free" of colonisation by MRSA.

(7) On Wednesday 23rd July my first morning wash at home meant that I read the instructions more carefully and realised that the HIbiscrub should be applied neat and not diluted and should be left for about 4 minutes to dry before being rinsed off with a disposable flannel before drying off with a towel used the one time only. I also "washed" my hair with an undiluted quantity of hibiscrub. In the absence of cotton buds I continued to apply the nasal ointment by finger and to clean the nozzle with gel that I had brought back with me from the hospital.

(8) The difference in the feel of using neat hibiscrub over the heavily diluted form favoured by the nurses on the ward persuaded me that I should continue to use neat Hibscrub for a further 4 days at least.

REFLECTIONS AND OBSERVATIONS

(1) There did not appear to be any system in place on the ward to help visiting staff (such as physiotherapists) being updated about the infectious state of newly diagnosed patients with MRSA colonisation.

(2) Insufficient support is available at weekends to appropriately "counsel" patients who are told for the first time that they have MRSA colonisation. I am relatively well informed but could not help but think to myself does this mean I might lose my life , or a limb or is it being over cautious. I was unclear also what I could and could not do to assist in the process. I do understand that the newly printed patient information leaflets will help answer some of these questions in future.

(3) The patient information leaflet is clear and well presented. However in common with much hospital literature for patients while it is strong on WHAT to do or not do it is weak on WHY and HOW. I think there needs to be a brief explanation about the risk of recolonisation before describing how this is best achieved. I think some diagrams would be helpful in this as they would underline the need to avoid recolonisation by appropriate sequencing of actions.


(4) Having experienced what it feels like to use neat Hibiscrub compared to the massively diluted form I do think this needs to be clarified and may indicate a need for retraining of ward based staff. Although I have attended operations as an observer on occasions I have never before used neat hibiscrub. After using it in the manner suggested in the guidance the nearest I can come to describing what it is like is the application of factor 30 sun block. It is heavy and sticky. It shows up white for a while on application before being absorbed. On rinsing with a wet disposable flannel it suds up such that repeated rinsing is required to remove it before towelling dry. When used as a neat hair wash the hibiscrub thickens the hair and ideally requires a shower head to be rinsed out properly prior to drying. I noticed that as it is Hibiscrub is a 4% solution. I have not tried to work out the effective strength of the active ingredient when a capful of hibiscrub is poured into a bowl of water but it must be approaching homeopathic levels. Although I keep an open mind on homeopathy I am not a believer and would prefer not to have to rely on faith or placebo effects when it comes to the adequate control of infection.


(5) An adequate supply of cotton buds should be dispensed to patients to use with the nasal ointment OR patients provided with a bottle of hand gel to rinse the nozzle after each application. Whichever approach is adopted this should be clear from diagrams included in the patient information leaflet and in future staff training/ guidance.


(6) The need for a daily change of towel on the ward should be adhered to and not left to chance reading by individual patients.


(7) There is no doubt that in the last 4 years the culture on the wards towards control of infection has improved considerably. I was impressed by the use of plastic bags around wash bowls and of course the repeated applications of hand gel, use of aprons and disposable gloves - so well done on that score. Unfortunately for the Trust's senior management this a no-win situation because people like me are forced to question why was this not done before? In my mind - and I have shared this with David Flint (Trust Chairman), Andrew Pound (Chief Executive) and Monitor (The Foundation Trust Regulator) in the past - the reason is that local management are denied the time and space to concentrate on other than what they HAVE to do - as defined centrally by targets - and are not free to do what they SHOULD do - even if they had the inclination - i.e. to focus on what is important locally to the people they should be serving.

(8) There remains a vast gap between rhetoric and the reality when it comes to adherence to guidelines and protocols. I concluded, when with a colleague I undertook a planned but unannounced visit to test compliance with Better Standards for Better Health, that the Trust is well able to produce the paper evidence that it has policies in place for all that is required of it even when experience as patients and as Governors suggested otherwise. I believe that what I have outlined in relation to control of infection applies to a similar extent with most other aspects of the insurance policies for senior management that pass as Trust Guidelines for their staff.


(9) Unless this gap between rhetoric and reality is reduced there will remain considerable scope for complacency and inappropriate self congratulation. This worries me because MRSA and C Diff are I believe the tip of the nosocomial infection iceberg. We should be as concerned about monitoring overall levels as we are with the headline figures. l know I am preaching to the converted but do so hope that you will be able to have continued success evangelising this cause within our locals hospitals. My own post operative infection 4 years ago ( caused to my mind by wound drainage pooling on bed sheets not being attended to quickly enough while staff and visitors alike were able to come and go without any of the current precautions) will not have figured on the radar of senior management at the time. I do hope that this sort of underlying infection issue does now - although I very much doubt it. As I said I have no wish to raise my experiences as a complaint nor do I see any merit in communicating with the Trust's senior management direct - they have made it clear that they are unresponsive to any comment that might be construed as being in any way critical or embarrassing for them personally - however if you wish to draw any aspect of my experience and reflections to their attention to assist you in avoiding further complacency please feel free to quote and extract at will.


UNANSWERED QUESTIONS

I still have some unanswered questions that might well be of value addressing if only to produce clearer patient information in future.

(1) When is the best if any time to shave during the 5 day treatment course. Bearing in mind that both safety and electric razors pass very near to the nose should shaving be done before using neat hibiscrub or after?. Should the razor be disposed of or if an electric razor is used should it be cleaned with hand gel / hibiscrub after use?

(2) If swabbing is done to detect MRSA colonisation on arrival on a ward and a positive result only happens if the level is detectable , given that there is a 48 hour deley before reporting results why is a swab not taken on discharge and a patient's GP advised if the result is positive?


(3) What evidence exists for the level of dilution of hibiscrub before its use becomes symbolic rather than effective?


(4) Why are the precautions, that I saw in place once someone is diagnosed as having MRSA colonisation, not applied to all patients at all times - after all a proportion may well have high but as yet undetectable levels and this gives the appearance of a approach to the control of infection that best resembles russian roulette.


I do hope you will feel able to acknowledge receipt of this email even if you are unable to answer specific points. If you follow up on any of the reflections and observations I would be delighted. If you wish to use my personal experience as evidence to support further resources and help avoid complacency on the part of senior management you would very much have my blessing - although I acknowledge how difficult this would be for you.

I continue to wish you good luck in your efforts to coordinate the control of hospital acquired infections.

My desire is that adequte control of hospital acquired infections should in future rely on good sense rather than good fortune.

Regards

Monday 28 July 2008

Stage 2 complete - now for the "recovery phase"

The operation was performed on Thursday morning 17th July. I was first on the list and was taken to theatre around 8:30 a.m.

I met the Anaesthetist who was reading up on my notes when we arrived on the ward the previous afternoon. He was the same guy who saw me for the first stage. We had a pleasant chat on the ward and discussed medication changes and whether I could manage without a central line being inserted if at all possible. He recognised the need to try to alter the anti hypertensive regime as little as possible as this had been a slight issue last time around and agreed that central lines were unpleasant and he would if possible manage without one.

I had the weirdest dream the night before the operation. I pictured myself on the trolley in the ante room being prepared for surgery. I could see the ceiling tiles and imagined sitting up on the edge of the trolley for the epidural to be inserted, then lying down while a canula was inserted, we discussed the best arm to use and once the canula was in place I waited for the muscle relaxant to take hold - usually I have been asked to count down from 10 and by the time I had reached 6 or 5 I would be out. So I started counting down and as I reached 5 remember thinking (or should that be dreaming?) "soon be over for me and next thing I'll know I will be waking up in POSU" - only I continued counting down to 1 and then remember thinking perhaps I should extend my right arm and wave it about a bit for the muscle relaxant to take effect. Somewhere in my subconscious I must have begun to realise that not this was not going to plan and I woke up - it was about 4:00 a.m. I did not want to go back to sleep to that dream again so I switched on the bedside reading lamp and picked up the book I was part way through. Unfortunately this was the next in the series of Stephen Booth books my wife and I have been reading( based in the Peak District) and titled "The Dead Place"!

So when I was wheeled into the ante room it was very much with a sense of deja vu! Everything went much as I had dreamed a few hours earlier. The epidural insertion stimulated 2 distinct electrical discharges down my right leg which I can't remember experiencing to that degree before - I had been warned by the anaesthetist that this might happen a second or two before hand in each case. I remember acknowledging to one of the nurses that I would be catheterised and the next thing I remember is coming to still in the ante room abut 90 minutes later still not having been into theatre.

The kindly anaesthetist mentioned he had some trouble finding a vein which would not collapse, apologised for the bruising that was already apparent but would get worse, clarified that it had after all been necessary to fix a central line in my neck ( giving direct access to the right atrium for quick effect of any substance squirted in during the operation) and in passing confirmed that I had been catheterised and had the arterial line inserted. (This would provide a dynamic monitoring of BP , O2 levels etc both in theatre and later in POSU).

I think the surgeon might have appeared about this time - no doubt wondering when he would be able to start - I noticed the time was 10:20 - so I had been in the ante room being made ready for surgery for nearly 2 hours.

As before I was aware part way through the operation of some banging sounds but this time was unaware of the feeling of synchronised movement up the table. This level of awareness happened just the once and might well have been forgotten a few days later - it was of little significance.

I did however become aware towards the end of the operation of hands pressing down and pushing forward on the skin at the top of my right leg - I think I must have been on my left side at the time. This kneeding of the skin was followed by slight pricking sensations. I guessed that I was being sewn up and that the skin needed to be smoothed forward for a better alignment of the cut edges. I was then aware of staff removing perspex panels as I looked up. I had never seen this before and realised that above my head was a squarish frame that individual perspex panels seemed to clip into. Each panel was taken away by pulling down and slightly out. I realised that the original "Charnley - Howarth" theatres introduced air flow to take potential airborn infection away from the wound and that those not directly involved in the operation had to be one side or the other of this air flow. Some would be on the dirty side only and others on the "clean" side but never should the twain meet. I had always imagined that the air flow was provided within an inflatable tent but what I saw was a semi rigid construction.

I was next aware of the registrar standing at my feet ( I'm not sure if I was still on a trolley or had been transferred back to a bed) and expressing pleasure at a good job well done with particular pleasure at achieving equality of leg lengths. I will later explain the relevance of this given the approach adopted to providing me with an almost entire metal long "bone".

I looked up at the clock in POSU once I had been wheeled into the bed bay next to the one I occupied 4 months previously when it had only been open for a few days. The clock showed just after 12:40. So I had spent nearly as long being prepared for surgery as under the knife.

On the Post Operative Surgical Unit I soon appreciated the expected absence of any pain but was nonetheless pleased that I had touch sensitivity along the skin at the from of my thigh. The swelling looked considerably less than last time around. My leg appeared to be aligned properly as I could feel the back of my knee in contact with the bed and joy of joys my right foot did not flop over to the outside. Mind you my leg had been placed in a U shaped foam trough but I was sufficiently confident of my ability to move it in a straight line when bending my knee that I felt certain the pains in my knee that I had experienced for the last 12 weeks would be behind me now.

As before I required warming up by blowing air into a plastic ducted sheet. However after about an hour I was beginning to sit up and recognise where I was. A few chats with the assigned nurse and doctor later I began to feel cold again. I was given another blast of hot air and as my blood pressure had dropped was given a couple of injections via the central line to dilate blood vessels and improve the blood pressure. To my surprise the improvement was immediate. I enquired about this and was told about the benefits of a central line into the right atrium from where any substance was pumped rapidly around the body - I had not fully appreciated this aspect of central lines before. I had received dialysis through one for 2 weeks about 4 years ago but never been conscious of the quick fix that they offered.

The respite was temporary however as a while later my Blood pressure dropped again and I again felt cold. These symptoms were suggestive of blood loss so an examination was made of the incision line and sure enough a small pool of blood had collected near to the top of the incision line ( the very area I was conscious of in theatre needing to be stretched before being sewn up).

The solution was to quickly apply a dressing on top of the initial suture dressing and then hold that in place with slabs of pressure dressings. It worked and stopped the blood loss but not before setting off an allergic reaction to the adhesive where it was in direct contact with my skin. As a result I developed some nasty blisters that still required dressing for a week after discharge.

I had last eaten about 10 p.m. the previous evening ( and then only a biscuit with a cup of ovaltine). So it was about 2:00 a.m on the Friday morning when I asked for something to eat. I was brought a ham sandwich and some hot tea.

I was the last of the patients on POSU to be transferred back to their wards and it was not until about 1:30 p.m that this was sorted out. As a result I did manage to enjoy a hospital lunch while in POSU. Before leaving POSU for the second time in 12 weeks I thought it appropriate to enquire if there was a "frequent flyer" application form that I could complete while the arterial and central lines were removed and dressed. The ward would not accept a patient with either let alone both still in place. Then it was back to the ward and the same bay from which I had left for theatre about 30 hours before.

My blood pressure was still causing concern and later that (Friday) evening the friendly anaesthetist returned and he decided to rescind an instruction to restart some of the anti hypertensive treatment. We also discussed the operation and I asked him about the mechanics behind the replacement. He drew a diagram that I shall try to describe pending a copy of the X-Ray in about 3 weeks time when I next attend Out patients.

Try to think tape worm and the coiled wire to a telephone handset to get the right image. First things first - the remnant of my own femur, still in place above the knee, was further reduced in length and now I truly believe is no more than a couple of inches. The removed bone was pulverised and used to help fix in place a new plastic cup (or artificial acetabulum). The metal rod previously inserted into the stump of femur having been removed left a hole that was exploited by a small metal spike. This spike was attached to a metal ferule about 1 1/2 inches long that both fitted on top of and enclosed the remaining stump of femur. Now we get to the interesting tape worm approach to bridging the gap inside my right thigh to the hip joint itself. Well this was achieved by slotting and or screwing additional metal sections about 1 - 2 inches long on top of each other.

I will ask the surgeon if each piece was screwed onto the previous one or if each was recessed to stack on top of each other. So this segmented building up of a metal femur continue until near the top where the femur naturally bends inwards towards the acetabulaum and counteracts this arching in with something like a flying buttress seen outside of large churches. I think this metal flying buttress became the artificial trochanter or what we all think of as out hip bone when we stand with "hands on hips". The arching of the metal substitute femur was achieved by a series of smaller sections each wider on the outside than the inside. On the xray this looked like a tightly wound coil of wire. Finally at the apex of this graceful arch was another special segment - this one fitted onto the last of the pieces that made up the arch and straightened up before giving way to a slim stem topped of with a metal ball.

All in all the one hip wonder was gradually being transformed into the tin man!

I will not describe the comings and goings on the ward other than to say that the friendly anaesthetist agreed that the epidural could be removed the next ( Saturday) morning along with the cannula through which fluids had been provided along with a couple of units of blood to help raise my Haemoglobin levels.

So as I went to sleep on Friday night I was looking forward to being unhooked ready for the visit the next morning by the physiotherapist to encourage me to stand on and walk with my new tin leg.

Before that could happen however I was given some disturbing news which is best described by reproducing an email I sent on my return home to the coordinator of infection control for the Trust describing the gap between rhetoric and reality. This then will form my next posting in a day or two. I trust you will still be interested enough to want to find out what happened next - so .......... to be continued.

Wednesday 9 July 2008

... "But the bad news is ...."

In accordance with the letter (dated 2 weeks ago) confirming the operation I rang the ward to ascertain if there was a bed available. Well I tried phoning the ward. On 2 occasions the phone was not answered then it was engaged - then my wife rang and was told to call back an hour later. Then we got a call from the surgeon's waiting list co-coordinator to say the bad news was the list had been canceled as emergency demand had meant there were no beds available.

The co-coordinator could not say when the operation would be rescheduled for but assured me it was his top priority so we should hear before the end of the day or tomorrow morning.

My guess is at this stage that it will be deferred by 3 weeks. They have probably sent out invitation to come in letters to patients for the next 2 weeks so will probably bump patients who have not yet had confirmation back a week.

At some stage we will no doubt find out the real reason - although not unknown it is unusual for emergency bed crises to occur in the middle of summer. My guess is that some infection related problem in theatres or associated areas is responsible for the entire list being cancelled. In which circumstances it is better to wait for these issues to be sorted out first.

So the best laid plans need need to be rethought by my wife and I. I have however got all the hospital related toiletries etc ready and packed. These include an MP3 player, radio, plentiful supply of batteries, 2 books, a couple of Private Eyes and pyjamas, flannel and towel.

So now we .... await the call!

Tuesday 8 July 2008

"House bound" reflections approaching the 2nd stage

In 48 hours time, all being well, I will be wheeled into the operating theatre after having an epidural inserted and some muscle relaxant and sleep inducing substance squirted through a cannula in my arm. I will have been asked to count down from 10 and probably have reached 6 before being unable to continue.

The next thing I should be aware of is waking up - probably in the recovery room or the new Post Operative Surgical Unit (POSU) I described in an earlier posting - after the surgery.

In between I would have been given regular whiffs of general anaesthetic to stop me from being aware of the process of:
  • "unzipping" the scar from previous operations,
  • "knocking out" (probably literally) the cement and metal rod that have been the nearest I could get to having a functioning right hip for the last few months before
  • replacing it with a shiny new prosthesis that will be fixed and aligned to ensure somewhere near an optimum functioning of the knee , associate tendons and muscles that have been strained in recent months, before
  • "zipping me up again by closing the incision needed to gain access to most of my right thigh.
Anyway I hope the operation does not hold too many surprises for the surgeons and that the anaesthetist remembers to keep checking on my level of consciousness, as well as all the other things (s)he has to attend to, as I would not want to have any awareness of the hammering that will be taking place. I was aware a couple of times during the first stage operation of metallic echoing hammering sounds while sensing that I was moving up the table. Apparently I began "flailing about" so I think I managed to find a way of communicating my slightly aroused level of awareness to all around me!

So with that approaching it is perhaps not surprising that I have been reflecting on recent experiences of being a one hip wonder and a housebound husband.

I recall, from a visit to the Viking Museum in Largs, that the derivation of the term husband was from the term "house bound". It seems the shortage of coastal farming land in Norway in particular caused the Vikings there to need to accumulate wealth by sea faring and pillaging. While the eldest sons would inherit the limited farm land the younger ones had to accumulate wealth in this way to have the dowry to get married. Once married they neither had the need or inclination to travel away from the family home so were described as being "house bound" and therefore no longer available for selection for the next away leg in the European competition they then seemed to compete in most successfully. A similar fate seems to await recently married (30+ year old) men these days. They too are no longer being available for selection - for the pub soccer team team instead of the cross channel rowing running and wrestling that seems to have been required of the Viking precursors of today's "iron man" competitors.

Unsurprisingly I have both positive and negative thoughts approaching the next stage.

As political commentators know negatives always tend to outweigh the positives - so I shall start with the 5 things I will be most glad to see the back of (assuming all turns out as expected):

"In no particular order":

  1. The absence of spontaneity: Every movement, particularly if it involves carrying anything from one place to another, has to be planned in stages like a carefully managed project. In fact to follow the analogy further a successful outcome even requires mid stage reviews as well as a careful scoping of what is and is not possible.

    For example to wash in the morning means:
    (1) manoeuvre power chair through bathroom door ( preferably opened first!)
    (1a) Optional enabling measure - if bathroom mat is on floor carefully reach forward without tipping out of chair and place over side of bath to avoid snagging up in the rear wheels of chair
    (2) Continue straight ahead toward WC far enough to reach behind to close bathroom door behind the chair - twisting sufficiently to avoid dislocating right shoulder.
    (3) Carefully reverse into the space alongside sink - making sure sink is on the left side to avoid stretching across temporarily misaligned right leg.
    (4) Reach right to remove flannel and bath towel from heated towel rail.
    (5) Place towel folded in half across knees with open end facing away thus allowing it to be unrolled upwards to dry upper body when washed.
    (6) Half fill sink with hot water and begin washing with soapy flannel rinsing when necessary.
    (7) Use wet flannel to damp hair and then reach into cupboard above sink for brush to arrange remaining hair in an acceptable manner - i.e. away from balding front of head in a sweeping back fashion thus accentuating the few remaining dark streaks among the mostly white and few grey strands.
    (8) Replace brush and reach into cupboard for electric shaver (ignoring safety razor lather and brush that used to be the preferred method of shaving somehow inextricably associated with standing up!)
    (9) Apply pre electric shaving cream from supply at back of razor head, plunge razor into sink (its a wet electric shaver after all so why not?) and shave. On completion open razor head and clean in used water then place in razor stand in cupboard and close door.
    (10) Watch with some satisfaction as the mornings stubble arranges itself like magnetised iron filings in a pleasing pattern as the water drains away while the stubble remains on the inside of the sink.
    (11) Rinse sink with cold water , rinse out flannel and return along with bath towel to heated towel rail.
    (12) Manoeuvre chair forward sufficiently to be able to reach behind to open bathroom door.
    (13) Open bathroom door fully so as to be able to reverse out of bathroom safely.
    (14) Reverse out of bathroom taking care not to scratch door or door post on way out particularly if tempted to turn chair around while reversing - always a risky thing to do and a little like a F1 car attempting to overtake at a chicane ( I say only a little because of the relative speeds involved - OK its nothing like a F1 car overtaking but there is still the problem of losing control and driving through the obstacles instead of around them!)
    (15) Start planning the "getting dressed" project!

    Its even more complicated if attempting to travel somewhere as this involves transfers from chair, use of crutches, perhaps use of previously fetched mobility scooter, transfer into car and relying on someone else (usually long suffering wife) to fetch and carry bags etc or dismantle mobility scooter to fit into car boot.

  2. Being a burden to others: I know this is unavoidable but that knowledge does not make it any the less difficult to bear.

  3. Bio mechanical pains around the knee : The temporary realignment of my right leg means that I am unable to straighten it. From the hip the best I seem to be able to manage is about 20 degrees from straight. This means that my knee tends to be rotated to allow my lower leg to bend in toward whenever my right foot rests near to the left foot. I think this causes a different load to pass through the knee cap and tendons around the knee to what nature intended.

  4. Static discharge: The rubber tyres of the power chair can generate static electricity - especially across the floor of the kitchen and utility room if I travel at any speed. I am usually unaware of this until I touch something metallic or get near to an earthed electricity switch. Then I am reminded with the shock of the discharge. What I have been surprised by is the ability to use this method to detect moisture levels in everyday things. For example the used tea bags in contact with the edge of the stainless steel sink can cause a nasty shock if I have been whizzing around making tea with trips to the fridge, kettle, sink, cupboards etc. The one consolation is that when I forget about the static build up and touch or sometime kiss my wife I can honestly say that even after nearly 35 years of marriage sparks still fly between us!

  5. Limited Horizons :I have previously referred to the "expanding archipelago" of my existence but even after being able to get out and about when someone else drives my horizons have remained limited.

    We stretched them last week however when I attended a research panel meeting at the Royal College of Surgeons (in my capacity as 1 of 3 lay members) and stayed overnight around London first in a Travelodge and then in my son and wife's flat. This was followed by a few days in a holiday cottage in Norfolk. Although I was able to join in with these events I was well outside the comfort zone that I had established at home. These were days almost totally reliant on the use of crutches and therefore a lot of my time spent staying in chairs (as distinct from "staining chairs" - which my wife once accurately reported over the phone to my daughter, that I was managing to accomplish, to which she replied "but he's always staying in chairs"! )
... And now the 6 things I am most looking forward to:

  1. Walking with or without the aid of a stick: My realistic goal by the end of the year is to be able to walk short distances with or without using a walking stick. I have not used muscles in my right leg for over a year and have had some of the muscle removed because of the infection. I do not expect to be running marathons but would like slowly to progress to using the static bicycle and multigym in the converted garage that also houses a half size slate snooker table that I would like to get back to using.

    In addition I want to be able to climb the stairs leading up to the converted loft space where the ceiling mounted projector allows me to watch sport projected onto a blank end wall of the house. The same equipment doubles up for using the nintendo wii for golf and other sport simulations which I have been unable to take advantage of for a year now, along with the wii platform bought a few months back to entertain visitors who might want to simulate skiing downhill. I can't wait to use the wii platform for fitness and Yoga exercises - my son coined the phrase "wiihab" for this, which I think we should probably patent along with a series of programs that exploit the platform's use for gentle rehabilitation. ( note to self: have a word with the community physiotherapist to see if she can advise!)

  2. Getting the vote again! By this I mean by virtue of being able to do things I will no longer be totally dependent on others and will therefore be able to exercise the right to "vote with my feet" and do my own thing if I wanted.

    On the recent weekend break I accompanied everyone else around parts of Norfolk but tended to stay in the front car seat - it was too much of a task to continually get out and about then transfer back in when only using crutches. The mobility scooter was packed but remained in the car back at the cottage and not in the car we shared to travel around. I now know what elderly relatives must feel like on similar outings. Don't get me wrong I am grateful for being included in the plans but felt I had no right to contribute to discussions about what to do next - after all I could not do much - hence I had no vote.

  3. Returning to Voluntary Work Although I continue to manage the Sheffield Talking News web site from home I have not been able to attend the regular readings and therefore stopped being involved as an occasional reader, recording technician and editor. I have also been unable to contribute to the planning of services for older people in Sheffield (POPPS) as an "expert elder" to which I was very much committed until a year ago.

    Although I did manage to undertake a thematic analysis for the local PCT of comments on their proposed strategy and continue to try to resurrect its Clinical Audit Patient Panel , I have not regretted being a little more distant from the frustrations of local NHS management. After all despite protestations to the contrary neither the Acute Foundation Trust (of which I was a Patient Governor) nor the PCT are truly ready to listen to and respond to local expressions of what is wanted - especially when it is at variance with national attempts to steer local decisions. ("What do you mean you don't really want choice and you just want easy access to someone providing continuity of care? You've got it wrong - choice is good for you! So we'll provide you with what you really want but don't know it yet - lots of different ways of getting semi qualified practitioners to practice on you and if you are lucky some might travel all the way from Eastern Europe for the privilege!")

    My continuing membership of a national panel that prioritises NHS funded pharmaceutical research is a different matter and was worth the effort of attending 2 meetings in the last 4 months. I think its because its members are sure enough of their own abilities that they do not feel threatened by the views of lay members and are therefore prepared to listen respond and on occasions even be swayed by them.

    So I will get back to attending the Citizenship & Involvement Group of the local Healthy Cities Partnership but probably avoid the newly established LINks body that replaces CHC and Patient Forums (until such time as the democratic deficit in local health management is addressed and corrected.)

  4. Helping around the house and garden I will have no excuse and a lot of catching up to do. My wife has had to do everything while I could only watch, sometimes advise and support and occasionally help (the mobility scooter doubling up as a garden truck to fetch and carry implements, plants and weeds to and fro).

    During the course of the last 18 months or so we did manage to redesign the layout of an area of garden and to install a slate water feature. This required trips to organise purchase and delivery but also needed some preparatory electrical work first. I knew what I wanted to do but could not do it. So I bought the parts and found a local electrician prepared to carry out what I wanted to do. Then we needed to wait for our gardeners to find both time and men to manhandle the slate obelisk into place - it took 6 men in the end. The whole process took a lot longer than otherwise needed and I did not get to see the pleasing effect until some time after it had been completed during a brief window of mobility following a change in antibiotics but before the first stage operation.

  5. Some overseas travel The seven years from the right hip being diagnosed as needing to be replaced to hopefully a successful replacement with no infection has been full of cancelled trips (to Iceland and the Arctic to see the annular Solar eclipse, to Sydney for an IT conference and visit with my son who was working there at the time, to Sienna to join some Australian friends on tour and to exchange cricket memorabilia following the successful Ashes test series the year before for example)

    We did manage some trips together to Germany to stay with friends and to Rhodes last year (although the infection was taking hold with a vengeance then but we did not know it) My wife managed some trips abroad to exciting places with my daughter but we feel we have not had as eventful a holiday together as we used to. We have had good times in Northumberland in recent years but always armed with a suit case full of dressings that needed to be changed daily to keep the infection under some sort of control.

    So with luck next year we might be able to enjoy a rail journey to Moscow via Warsaw and then a 10 day river cruise to St Petersburg before a flight back to London. I doubt I will be able to see much of the Hermitage ( but then again who does - its so huge apparently). Both the rail and boat trips will allow me to travel without having to be too energetic so if it comes off it will be a transitional type of holiday before we become a little more independent in future.

  6. Woodturning hopefully moving on from one legged bowls to some more adventurous turning. I might even take up DJ's suggestion of selling some from a web site.
All being well after the operation I shall return in an even more contemplative mood and will in time add some postscripts which should fill in the "back story" of the last 7 years. I will however aim for those postings to be briefer than this one has been.

In conclusion therefore .... fingers crossed, wish me luck and .... TTFN