Tuesday, 24 November 2009

Overhaul Day

It is now just over 1 year since the last of the 4 hip operations last year and by chance I have had a mini overhaul today. In the morning I went to the Chiropodist that has tended to me for the last 4 years or so - about 5 times a year - for nail clipping and scraping away of various bits of hard skin.

About 90 minutes of useful time at home after this appointment and I was driving back across town for an annual appointment at the metabolic unit. I had about 6 weeks before attended for a scan and blood tests. After 3 good years leading up to the hip ops last year I had managed to add approx 3% bone density per annum. The inactivity for most of 2007/8 not surprisingly meant that the trend was reversed. A sensible discussion then resulted in a decision to defer any further intervention pending increased weight bearing and mobility and Vitamin D augmentation ( through sunshine rather than activated Vitamin D capsules). I was therefore pleased that bone markers in the blood were showing less activity ( in other words I was not needing to replace bone lost through inactivity) I have stabilised at the extreme of the normal range for a man of my age, which is not bad given all the other problems and long term steroid use.

We have again agreed on a conservative approach with no addition of biphosphonates ( which will be complicated by the renal impairment and might require discussion at a quarterly joint clinic in my absence).

I have been reading Gerd Gigeenzer's excellent book "Reckoning With Risk" - learning to live with uncertainty and have realised with my multiple long term conditions and complicated polypharmacy I am much more likely to die WITH any number of of conditions rather than FROM most (if any) of them.

So against that background I attended the 3rd of my clinical appointments today. This was a 30 minute visit to the dentist to have a bridged crown cut into 2 in preparation for a follow up appointment at the dental hospital on Friday afternoon to have debris cleared out, at which time the surgeon will take a biopsy to "rule out" oral cancer.

Now here is the background to this last "interesting" episode of my medical history.

About 1 year ago - after the 4 hip operations - I became aware of a soft tissue bulge at the back of my upper right 4 tooth. As it happened I saw a public health leaflet at the pharmacy which was drawing attention to Oral Cancer. It advised that if such changes had not resolved within 3 weeks it was important to let a dentist have a look. Feeling a little like one of the "worried well" I made an appointment and was reassured when after X-Ray a lot of broken tooth, root etc was revealed. It was unlikely to be cancer and it was agreed to watch and treat in a conservative manner. A scheduled 6 month follow up early this year resulted in no action other than a number of photographs - it is something that is uncommon enough to be worthy of sticking in an album / lecture notes. However the latest 6 monthly check led to a different dentist (tutor - as this is a teaching practice linked to the dental school) deciding that a referral to the dental hospital was required.

So I was referred to Mr Payne! the dentist ( I kid you not!) who decided he would prefer the dental practice to cut the tooth shortly before he would clean out the debris ( which might require some cutting and stitching). We agreed a date when he could do stage 2 and I was left to arrange for the local practice to carry out the first stage.

Now I know I am not in any of the high risk groups for oral cancer ( I do not smoke or chew tobacco nor do I drink above advised levels of alcohol). So even if the biopsy is "positive" I will not proceed with any heroic intervention. Any assessment of risk based on testing is often expressed in percentage terms ( you know 80 % - or whatever - of positive tests are associated with Cancer). In reality this confuses people tested who are in high risk groups and those like me who are not. I suspect that the probability of a positive result being wrong for people in low risk groups is not known - so my chances will be distorted by including me in a reference group of people with high risk.

So imprecise is the understanding of relative risk and what represents the correct reference set that it does make me wonder how likely it is that we can ever achieve "informed consent".

Given that I have already survived longer than we thought likely in the 80's - and that I have lived the last 4 or 5 years as if I was on borrowed time(wanting to make the most of the rest of my life) I will neither be relieved if the biopsy proves "negative" nor anxious if it turns out "positive".

Oral cancer is of course more destructive than say prostrate cancer for example and the prognosis is certainly less promising but given the chances of a really accurate diagnosis and assessment of risk I do not think ( at this stage at least) that it will make any difference to how I will react. Time of course will tell and I aim to make the most of that limited commodity - for as long as I can :-)

Tuesday, 17 February 2009

The sound of dropping batons in Health Care

First the update: Patient is doing well and walking without any aids, - being more mobile (and able to carry items as well as himself up and down stairs) has resulted in tackling jobs that have needed doing for a couple of years being ticked off the to do list and a related shedding of about 8 lbs with a related reversion to the need to wear a belt to keep trousers in place.

The snow of the last 2 weeks has constrained my ability to explore more widely but the world I had previously described in terms of an ever shrinking archipelago of activity zones is part of an expanding universe once again.

In the meantime I have visited a number of follow up out patient clinics and suffered from well meaning clinicians taking isolated decisions with no one really able to advise me on all the potential interactions.

Whenever I mention the analogy of the best runners in the world never winning relay races because they are forever dropping the baton everyone gets the point BUT no-one is able to do anything about it.

My most recent experience is a typical example of this.

About a year ago, while house bound and relying on a power chair to get around inside, a GP from the local practice visited to carry out a prescription review. I was at the time still taking about 750 individual tablets each month (down from the high of just under 1000 individual tablets each month following a change of long term antibiotic cover).

As part of the work I do as a lay member of a panel that prioritises NHS funded pharmaceutical research I had become aware that one of the medications I had been taking for about 4 years was an anti arrhythmia drug (sotalol hydrochloride) used as a precaution against a repeat of the single episode of atrial fibrillation I suffered the night before the long delayed revision of my right hip, while waiting to have an arterial/venous shunt arranged to prepare me for renal dialysis. The shunt operation was delayed to allow me to be able to mobilise with elbow crutches after the hip replacement (The one that resulted in post operative infection lasting over 4 years along with significant tissue and bone loss). I became aware of the fact that as many as 1:5 cases of atrial fibrillation are "lone episodes" and furthermore that a proportion can resolve spontaneously. So I questioned whether given the circumstances surrounding my single episode I still needed to take the sotalol. My renal function improved after the eventual operation and that improvement has been maintained (apart from the 2 weeks on dialysis when the post operative infection first manifested itself and needed an emergency operation to clean out the operation site). A referral to the local cardiology department was set in train. I received 3 letters in sequence rearranging the initial clinic appointment with 3 different cardiologists before the visit took place. It was in the period after the 2 stage revision but before the 2 operations to manage the dislocation that I saw an intelligent young consultant cardiologist. He agreed that; with the renal problems at the time , related to very high potassium levels,and allied to possible anxiety about being operated on after 3 years of waiting and complaining; most people may have had a similar experience. Given that ECGs a week before and ever since have shown no hint of AF he recommended that I stop the Sotalol immediately. "It was not even a therapeutic dose" he said.

I was discharged from the cardiology clinic pending the review of an echo study of my heart that he would arrange and if necessary advise my GP about. I had mentioned to him that I had been told that long term hypertension had resulted in a thickening of one of the chambers but that the judgement at that time was this was neither surprising nor required any action. In the event the review of the echo study confirmed this slight thickening and the consultant wrote to me telling me it was nothing to worry about but he had written to my GP to start me on " a tablet" to help.

"A tablet" ! what use was that? I have been in the habit of asking clinicians to please check with the renal clinic before changing any medication or adjusting strengths as sometimes there is a need to reduce dosage levels to minimise any toxic side effects caused by impaired renal function. I also tend to check the patient drug information and Mims etc so that I am at least aware of potential interactions. I thought we had had a fairly adult conversation about the background to the request to review the need to stay on Sotalol or not. I was annoyed that I should not be better informed about the proposed change to my medication. "A tablet" was not telling me anything. I would have to wait for the GP surgery to change the repeat prescription to find out what had been proposed. A couple of months passed and my repeat prescriptions ( held by the local pharmacy who I telephone with my needs) had not changed and I thought little more about it. However I became gradually aware of tension across my forehead and a strange feeling when standing after sitting down for a while. I decided to check my Blood Pressure and instead of the 140 over 80 it was around 180 over 95. (When I had the hip manipulated back in place - after dislocating - the BP reading was similarly high but a second reading was more acceptable and operation was allowed to proceed.)

What I had not realised was that the sotalol had also been contributing to the control of blood pressure and by stopping the "non therapeutic" dosage my BP was no longer as well controlled as it should have been.

I rang the local General Practice and as it was a Friday morning hoped that they would be able to check with the cardiologist what it was he had previously recommended before any other change in medication to control the BP was considered. The GP had no record from the Cardiologist of the medication change but agreed to ring me back once he had spoken to the cardiology department. When he called back he reported that the cardiology had no record on computer of the recommended change. They checked their paper records and did have a copy of the letter sent to me but no copy of the letter which they would (should?) have sent to the General Practice stating precisely what had been proposed. In the meantime the GP and I agreed that I should take an additional anti-hypertensive tablet (one which I had taken years before and tolerated with no problem) pending clarification from the cardiology department. I rang the pharmacy and they agreed to dispense this on ringing the General Practice to get approval. My BP began to drop nearer but still not at the previous satisfactory level.

A later visit to the renal clinic involved relaying much of the above to a new consultant there that I had not seen previously (I have no problem with this as the unit have a good track record for shared records and team work - so although it is good to see a familiar face I was relaxed about this particularly as my renal impairment is now so much better.) There were however 2 causes for slight concern at this clinic. The first was that my Haemoglobin was if anything too high and there was therefore a need to adjust the strength and frequency of EPO that is injected at home and because the Blood Pressure was still on the highish side to add a further tablet to help control it. I was given a 2 week supply. Within a day or so my BP readings had returned to their previous levels.

So the sotalol had been contributing to controlling my hypertension even if not at a therapeutic level for control of (what did apparently turn out to have been a "lone episode" of) atrial fibrillation.

By trial and error I now take 2 new tablets in its place. I still do not know what was proposed by the cardiologist but it was probably a class of drug similar to that added by the renal clinic.

My GP has written to me recently after receiving the follow up letter from the renal clinic in which they would have referred to the raised BP and their immediate (short term?) response which is in addition to his previous immediate (and short term) response. He has asked me whether in the circumstances I would like to be referred to the hypertension clinic ( which I admit has a great reputation and which I attended for over 18 months while they carefully adjusted my medication before following the sudden stopping of a drug that I tried to tell staff at the time should not be stopped because of known "rebound" problems.)

I am still considering this suggestion as yet another clinic will only exacerbate the problems of co-ordination of the poly pharmacy and possibly increase the risk of batons being dropped but it might yet be the most sensible way of getting to grips with the previous dropping of batons since the sudden stopping of the sotalol.

I suppose the moral of the tale is "if its not broken don't fix it" and that a little knowledge can be a dangerous thing as I should not even have suggested that the need for sotalol for control of AF be reviewed. But this conclusion misses the point that given the range of drugs I am on unless I keep it myself and check things out the local NHS is unable to share drug information in a straightforward manner. Is it too much to ask that patients like me have a portable record with medication listed and what is more important why it is being taken and what side effects there might be - both beneficial and negative. I can do this myself and do subscribe to Zaptag for this purpose but few if any of the clinicians I have contact with know of it or think about asking for it.

I have concluded before that patients like me "pressure test " systems. By responding better to our complex needs I believe the quality of care provided to patients with one off problems will also improve. With an ageing population the best clinicians will increasingly be hampered by inadequate processes and by systems that work against both the sharing of records and true collaborative working for the benefit of individual patients.

It should not be but obviously remains too much to ask for.

As a "prisoner of hope" I still look forward to a future when the storm troopers who manage public services follow the imminent fall from grace of those who - with an excess of faith in market mechanisms - have wrought so much havoc to financial services. Perhaps then we will replace apparently "efficient" hospital activity for one off events, with effective care for the increasing number of those in our communities who have complex and multiple needs and who as a result (though less than 1/2 % of a population) consume over 50% of what is spent on the NHS*.

*(Birmingham figures quoted by Mark Britnell - now in charge of delivering "World Class" Commissioning -whatever that is- of Health care in England.)

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.


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.


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!

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.