Shattering memories

Lefkada deserted village 2One day, while wandering around Lekfada Island (In the Ionian, in case you didn’t know), we came across this deserted village. Houses broken down and looking as if they might have been left in a hurry. We mused about earthquakes, displaced ethnicities, economic disaster etc and it was only  later that we found that the village had been hastily abandoned after a traumatic earthquake some years previously.

Now earthquakes are nothing new in this region and they are caused by three Lefkada deserted village 3tectonic plates which meet in the area of Kefalonia, Ithika and Zakynthos (Zanti). Apparently the plates, which are in constant motion are causing Greece to sink slowly into the Aegean. A major quake centred on nearby Kefalonia in 1953 was felt in Lefkada, but the real damage was likely done by one in Lefkada on August 14, 2003 – 50 years to the week after the 1953 quake.

I find it hard, if not impossible, to imagine such trauma. We regularly hear of earthquakes and other equivalent tragedies on the TV and radio, yet we are inevitably somewhat dissociated and insulated from them. Here I am so many years after the poor people watched and heard and felt as their word tumbled around them, not realising in the instant that they were witnessing the end of their village. The sadness was almost overwhelming, even so may years later.

As we wandered, we found NO evidence of the people who had probably lived here for centuries. Nothing, zip, zilch. Perhaps the odd bit of plastic suggesting that someone was trying, or had been trying, to keep the walls dry (essential if they are not to deteriorate beyond repair). A herd of goats could be heard tingling awaDeserted village in Lefkada following Earthquakes 1y at the far end of the village when we noticed the odd sign of regeneration starting. Was this one old owner returning? Was it the beginning of a complete rebuilding? Who knows? Whatever was happening, it was a sign of hope, a sign that perhaps this centuries-old village was not dead for all time.

Facebook Friend or Stalker

I love Facebook, it’s free, it’s simple, it allows me to keep in touch with family and friends (both ‘real’ and virtual) wherever they are in the world. Yes, it gets a bit full of adverts occasionally – but I have found a cool Add-In called AdBlockPlus that will block most of them as well as allowing configuration of lots of other potentially irritating features of FB. FB don’t like it and keep trying to get in it’s way, but so far ABP have managed to keep ahead of the programmers employed by Mark Zuckerberg, so give it a go.

So I use FB regularly, it is always on in both my phone and my laptop, I post several times a day and read my ‘Friends’ posts at a similar frequency. I rarely think about the consequences of my posts, having already paid a lot of attention to who I accept as a Friend, who I include in the various audiences allowed to read my posts, what I post etc… I work on the basis that, despite my best efforts, everything I post will probably be available to anyone with sufficient expertise anyway and so avoid posting photos of various bits of genitalia or being gratuitously offensive.

But a recent conversation has got me thinking about those ‘Friends’, one of who has admitted to reading posts but never posting anything themselves. My first, and admittedly rather extreme, thoughts were that this practice is in the same territory as stalking and that I would UnFriend the individual. Clearly it is not stalking, but I’m still very uneasy about someone who sucks stuff in about others’ lives but never gives anything out. How would I respond if a physical friend spent their whole time listening to my conversations, looking at my photos without ever speaking themselves or showing off their own family snaps? How long would I keep accepting that person into my house or inviting them to the pub? Would I question their motives for the apparent friendship? Isn’t friendship about a mutual exchange of information?

One part of me is interested in what lies behind this behaviour, another part thinks that even if I knew, what would I do with that insight and would it make any difference to how I feel?

So what would YOU do in these circumstances and why? I would really value your insights into the situation – please comment below. I promise I will share all comments (unless you specifically ask me not to).

Bursting my bubble

As an experiment and in an attempt to get out of my bubble and seek to understand some of the thinking, I committed myself to reading some of the right-wing media supporting Trump – in particular Brietbart as it seems to be perceived as the source of much of the thinking and supportive comment.
I don’t know if I want to continue.
The bile, the hatred, the racism, the conspiracy theories (one today being that ‘they’ are letting in “TB ridden” refugees so they can infect the true Americans and in turn collapse the country) are overwhelming and horrendously alien to my own mindset and values. Some of it makes the Daily Mail read like pink fluffy liberalism.
I guess that the real worry is that the publishers and many (most?) of their readers truly believe all this stuff, much as the relaitvley uneducated (by which I mean ‘do not really understand how the media works’) left and right in this country believe their own mouthpieces. The Guardian is no more ‘correct’ than the Telegraph.
Having been involved with the media over the years I believe that I do understand how most channels will represent even the most innocent story in a way which suits their agenda. Just think of the headlines and stories written about HS2 (not that HS2 is necessarily an ‘innocent’ story, it’ just a very good example of my point):
  • “Billions invested in UK jobs”
  • “Billions to be wasted on foreign trains”
  • “Trade and industry helped by faster journey times”
  • “Thousands of homes blighted”
  • “Property values near route rocket”
  • “Hedgehogs tunnels to be built”
  • “Lesser Spotted Winklewort habitat under threat”

You buys your paper and you takes your choice. None of the above are ‘wrong’, just different views on the self-same scheme. But unless the promoters of a scheme seek to understand the positions of other stakeholders the chances of accommodation are almost zero.

So it is with Trump, Brexit etc – bile in response to their bile just generates and even stinkier swamp, hatred in response to hatred just sets parties at war with each other, denial of positions closes down any possibility of change. As Stephen Covey said in his “7 Habits of Highly Effective People”, ‘Seek first to understand’. And you can only ever understand if you are willing to risk bursting your own bubble and investigating those things with which you disagree.

My pituitary journey

For those who have not really been following my journey over the last 18 months, this is a summary recorded by Leeds Teaching Hospitals Trust and shown to an internal conference. Watch and learn!

Due to unforeseen circumstances…

 A few days ago I received a text confirming an appointment at the hospital – this was news to me as I had not been advised of the appointment that was now being confirmed. OK, no problem the letter is likely to be in the post. Unfortunately there was no way I would have been able to attend the appointment without MAJOR disruption and rearrangement and as I know there is nothing significant outstanding I opted to text them back (as suggested) to postpone the appointment. Great stuff.

Even greater was someone ringing me later to rearrange the appointment and offering me another only 3 weeks away. Great stuff.

Today I got a letter:

“Due to unforeseen circumstances your appointment has been rescheduled. Please accept our apologies for any inconvenience caused.”

I haven’t yet had a letter about the original appointment and it would be slightly churlish to comment on the rearrangement. So I am going to be slightly churlish. It’s a minor thing, but the wording suggests that the hospital had to reschedule and are apologising for that. No, I rescheduled and I would simply suggest a small tweak (an additional letter) worded appropriately for the situation.

It’s in no way life-threatening but it is yet another, admittedly minor, example of not really being as patient-focussed as is the expectation. To be fair, this little exchange gets 9 out of 10 (which is MUCH more than some earlier exchanges) but the extra point is the one that makes the difference. Good stuff could easily be a bit better.

Getting better all the time

I have been delighted to spend most of today in the highly pleasurable company of 25 committed people working in the opthalmology team at Leeds Teaching Hospital Trust. We were working on how to improve the patient experience in their department, with me volunteering my time to the process as a patient representative.

I was delighted to be involved, having been fairly vociferous about the weaknesses (whoops, improvement opportunities!) that I came across during my recent journey through their system (not opthalmology though). Not being one to just complain (and I nearly lodged a formal complaint at one time, before realising that complaining would only lead to effort being committed to investigating my complaint rather than actually making improvements), I offered my services as both a patient and someone who claims to know a fair bit about organisational change and process improvements. That offer was taken up and so far I have been filmed telling the story that is contained in previous blogs, I have helped redesign some customer letters. Now the real hard work starts.

LTHT is one of just five trusts in the country chosen to pilot an approach to process improvement imported from Virginia Mason Hospital in Seattle. In turn they have adapted The Toyota Way – a highly structured approach to continuous improvement. LTHT are putting the patient at the forefront of their efforts in the belief that by getting this right, other things (including costs) will fall into place. That they are taking this philosophy to heart was evident by the warmth with which I was received and the attention that was paid to my observations and suggestions.  From my perspective, ‘patient first’ is a major shift and challenge in an industry that has traditionally been medic-led and where the stereotype (and all stereotypes are rooted in some reality) is of patients being called for the convenience of the staff not the patient.

A further aspect of the methodology (now branded “The Leeds Way”) is expressed as ‘Inch wide, mile deep’. Rather than looking widely across a process (‘mile wide’), they choose relatively tiny little areas (‘inch wide’) where improvements would have a big effect and study them in huge detail (‘mile deep’). So today we had a look at the core of the outpatients process (in their jargon – Pathway), searching for those few inches that needed deep study. We found them, and what was a delight was to find that the key areas of study related to minimising patient waiting times. The data was compelling – for new patients, they would typically spend around 90 minutes in the department, only 30 of which were actually spent with the specialists they had come to see; so of my 90 minutes in the department I spend a whole hour waiting for something to happen! Definitely room for improvement.

Lots of detailed investigations needed before further review by the team. However, my purpose here is not to delve into the detail of the improvement process so much as to praise the approach. Not only the approach of the improvement team and their methodology but perhaps even more the openness, creativity and enthusiasm of the range of people in the room (ranging from me and a volunteer through to General Managers, Clinical Directors and no less than the Deputy Chief Executive/Chief Nurse). Worthwhile and sustainable  improvements tend to be made by those directly involved in the processes and I feel that people left the room enthused, committed and somewhat more empowered than they arrived. Job well done.

Flood risk management – do we need changes?

FloodsEarlier today the (D)Efra Committee published its review of arrangements for flood risk management. I posted my initial response on Facebook and I stand by what I said there – essentially that the call for a new strategic authority and ‘floods czar’ is misguided. This piece explores more of the issues.

There is a real risk that the report is seen as either a knee-jerk response and/or politicking, yet there is some good (if not novel) stuff in there as well as at least one major flaw.

First the good. Well, that is the vast majority of the recommendations. It’s always good to have p(P)olitical backing, but let’s not get the idea that any of these recommendations are novel. Numbers 1-7, which are the obviously ‘operational’ ones are already developing here in Yorkshire and were long before this report was ever thought of.

The idea of a whole-catchment approach mirrors that of the Catchment Based Approach that Defra set up and funded for ‘environmental’ concerns and bringing those two approaches to catchment management closer together is one of my key aims.

Storing water and land management is a no-brainer, although I remain to be convinced that we should compensate farmers (especially) when the flood plain that they own gets flooded. After all every time it floods they get free fertiliser and soil and owning a flood plain surely means that you understand (Or should do) the issues. So many of our flood plains have been commandeered for other uses and I can get quite frustrated when people complain that their local flood plain floods.

Sustainable drainage systems – it’s taken at least 30 years since the water industry started funding research for SUDS to become mainstream. It’s about time that developers were compelled to install best practice SUDS whenever development of any size is undertaken. Every little bit helps. I believe that much greater emphasis now needs to be placed on retro-fitting SUDS. We have millions of hectares of hard standing in our cities and our roads and by adopting the ‘every little bit counts’ philosophy we can slowly but surely make inroads.

Maintenance and dredging – a sensible recommendation but I feel that insufficient emphasis was put on the very limited usefulness of dredging, especially after the then Environment Secretary, Liz Truss, effectively gave farmers and IDBs carte blanche to dredge in her knee-jerk reaction to the 2015 flooding.

Flood warnings and public understanding of risk – Whilst I have put these two recommendations together, the first is primarily technical and the second to do with communications. Nonetheless they are sides of a coin, without the former we cannot effectively deliver the latter. The key issue is one of active engagement at all times. The history of the EA, which I acknowledge is changing albeit very patchily, is one of ‘Decide, Announce, Defend’ and this has left a legacy of mistrust. They have also tended, IMHO, to consult rather than engage and only to do so transactionally and late, rather than recognising that collaboration demands ‘upstream’ (sorry, but I could not resist!) effort to build trust and understanding in order to be able to reap that when needed.

The rest of the recommendations are clearly relevant at a national strategic level and all except the last make absolute sense and should be acted upon as soon as possible. However, I take exception to the suggestion that a new governance model be created.

There are certainly multiple agencies involved in FRCM and whilst these all need to be involved, I fail to see how creating a single national FCRM body helps co-ordinate them. We already have such a body – the Environment Agency – and my personal and local intelligence suggest that they are doing an increasingly good job in trying circumstances (for which read ‘shortage of funds’). I might argue that a desire to address a democratic deficit has led to a proliferation of agencies with responsibilities, to the detriment of strategic planning. Only a cynic (moi?) would suggest that this also pushed spending and spending decisions out of the hand of national agencies and so allowing government to have an arms-length relationship with these strategic challenges.

Finally, separating the ‘environment’ and ‘flooding’ arms of the EA risks fragmentation of addressing ‘watery’ issues. There is already a, fortunately closing, gap between the two arms of the EA and separating the functions can only make it even more difficult to identify and deliver the collaborative multiple benefits that are undoubtedly available when we work together.

A useful document that doesn’t add much in practice!

Memories…and emotions

aberfan_1_smI was just watching a BBC Breakfast item about Aberfan. Now if that name means nothing to you then you are probably less that 60 years old. For those of us old enough to remember, it was probably one of those iconic moments in your history that you remember more vividly than most. It certainly is for me.

The item was about the 50th anniversary of the disaster  which was a catastrophic collapse of a colliery spoil tip in the Welsh village of Aberfan, near Merthyr Tydfil, on 21 October 1966, which killed 116 children and 28 adults. The tip slid down the slope right into an through the primary school and the film footage (very little outside broadcast in those days) showed hopeful but unexpectant men digging and women waiting to hear of the fate of their loved ones. All those mothers waiting outside the school still bring tears to my eyes, as did watching the item and the old footage.

I was intrigued by the unavoidable tears prompted by the memory and in turn the link between emotion and memories. It’s well-known that linking emotion to events helps consolidate them in long-term memory and enable retrieval. (For once, I am going to give a Wikipedia link, because it has an excellent summary of the field). This works in all directions – positive events, traumatic episodes – and one of the ways we work with clients using NLP techniques is to dissociate a traumatic memory from the emotion, thus helping people overcome phobias and to move on from ‘difficult’ situations.

Likewise the idea that it is ‘better’ to give experiences than things, on the basis that a positive experience is more likely to be remembered than some bit of plastic tat that ends up forgotten in the back of the garage.

So how do you create, for yourself or others, events that have some positive emotional content? Fill that memory bank with positives.

Aarrrgggghhhhh! Here we go again!

Get to the back of the queueA few weeks now since my operation and I had thought that all was going well after an initial mess-around over immediate post-operative follow-up.

Oh what a mistake!
One issue that does need addressing is a low testosterone level and on 22nd August I got a letter offering me an appointment with the endocrinologist to discuss this. Unfortunately I was due to be on holiday on the scheduled date (13th September) and so rang up noting on my copy that I had explained the position and asked for a postponment until after 19th September when I returned from holiday.
Today I rang up noting that I had heard nothing about a rearranged appointment and wondering what was happening. It turns out that my notes said I had cancelled the original appointment and so I was now at the back of the queue. Well, I suppose that saying I can’t attend is technically cancelling, but at the same time explaining why and asking for a rearrangement surely amounts to asking for a postponment? It seems not. The subtle distinction between “I do not want to see the Dr” and “I cannot see the Dr on the date you suggested, please can you arrange me another appointment” appears to be lost on the system at LTHT. Patient-friendly it is not.

Dr Murray’s secretary agreed to look into getting me a new appointment only to find that the first available one is on 3rd January 2017. Really!! So I asked her to have a word with Dr Murray, relating how long I had been in the system, with a view to finding an earlier appointment. I am not hopeful.

Fortunately this is not an urgent issue, and once again the clunkiness of the system is sadly exposed. I’m intrigued to see that one of LTHT’s core values is described thus (my bold):


  • Consistently deliver high quality, safe care.
  • Organise around the patient and their carers and focus on meeting their individual needs.

Well, the first of these is certainly delivered, but they have a long way to go to deliver the second!

Catching up

Catching upYou might have noticed that I have not blogged about ‘my condition’ for quite a few days. The truth is that I go so hacked off with the ongoing hassle, and one issue in particular (see below) that I almost lost interest. But it’s my health and sanity at stake, as well as the health of other patients who I hope do not have to undergo the saga of administrative incompetence that I have. So this post is by way of a catch-up, written whilst I am sitting having blood taken every half hour for a Glucagon Stimulation Test (checking the response of my pituitary to stimulus). I ‘passed’ the test before surgery so fully expect to do so again; the significance now is that this is the test that will (hopefully) get me off  oral hydrocortisone.

So where did I stop? The last two posts addressed the unsatisfactory situation I found myself in when a copy of my discharge letter was not sent to my GP and the ridiculous waiting times to speak with the appointments service. Since then things have moved on. I invoked my right to use the Patient Advice and Liaison Service (PALS) to try to clarify things and get that all-important endocrine clinic appointment in place. They did that and then I found myself in the odd situation that my appointment at the clinic was scheduled BEFORE the various tests that they would find useful had been completed! Still, I went along and had a useful and very worrying chat with one of the endocrine registrars. The positives were:

  • that ‘I’ had been reviewed by the MDT, who were not particularly concerned about anything
  • that the histology had come back OK (i.e. benign), with just a slightly increased propensity to regrow so they will look at the MRI in the MDT and we can decide what (if anything) to do with any remaining tumour
  • that the follow-ups tests taken before I was discharged were all normal

I was advised that when the varying outstanding results came through they would be reviewed and I would be contacted with any necessary advice.

Now the VERY worrying thing. My GP had arranged for blood tests for U&E (urea and electrolytes – kidney function) and I had the blood taken at Bradford Royal Infirmary. In the clinic, I was advised that there were no results ‘because the sample was too old to analyse’. Well this was surprising for a sample taken in BRI, but much more concerning was that my record showed the sample as having been arranged from the wrong surgery and one totally unknown to me. So what has happened here? Has someone else got my bloods, will I have to have the tests repeated, how can this happen? I’m not one for catastrophising but let’s imagine that some results were in my files and those results led to a particular action being taken that was detrimental to my health! And what about the patient who has maybe actually got my results? OUCH!

This cock-up was the straw that broke the camel’s back and I have decided that I will be putting in a formal complaint specifically relating to the various incidents of administrative blundering. I want to restate that at every point (except for the initial discussion with the stand-in GP) my medical care has been good to outstanding but the administration has been miserable and primary aim is for improvement not retribution.

I’ve had another Goldman Test (optical field of view – remember?), which shows a two-line increase in acuity and some recovery already in field. The blind spot is reducing and peripheral vision recovering. This is good and it was suggested that it would probably recover further as the swelling around my pituitary reduces further.

So how am I now? Medically – very well indeed. No pain – OK, one paracetamol’s worth on one occasion the day after surgery and I could easily have put up with it but why should I? No bruising, Hardly andy congestion (I had been warned that my nasal passages/sinuses/head could well feel congested for a while. No after effects beyond a nose that kept blocking for about a week but has now cleared very well. Mentally – as bright as a bee, having recognised that the 13 months of pre-operative hassles had probably been having more of an impact than I realised at the time; also hacked off (that’s the polite version) that the administrative hassles continue unabated.

Finally, I have started to think about the extent to which the whole system is (or more likely is not) connected in such a way as to make the patient journey smooth and effective. More on this soon.