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.)