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.

“Your call is important to us…” Really?

Not being a passive patient, and in the light of a discharge letter that indicated a clinic review 2 weeks after discharge, and having heard nothing, I thought it might be worth ringing the Referral and Booking Service to see if there was anything in the system for me. At 1630 I got the first ‘busy message’ – “Our call is important to us…please hold and we will answer shortly”. This was repeated at roughly 20 second intervals for the next 23 minutes before it was answered by a very helpful man who told me that there was no record of any appointment or request! Only the appointment for 28th June that was ‘postponed’ in the light of me having surgery 2 days later.

Helpfully he gave me the endocrinology consultant’s secretary’s number and transferred me – no response whatsoever.

So now I find that not only was the discharge letter not received by my GP (I cannot say whether it was sent, only that 10 days later he had not received it) but that also the follow-up arrangements stated in the letter appear not to have been acted upon either. Whoops is hardly strong enough.

Coincidentally I receive an email from the Patient Experience team in response to my last blog and take that opportunity to discuss the situation with them. This results in two actions – firstly a call from the Patient Advice and Liaison service who volunteer to chase my urgent concern about the missing endocrine clinic appointment and secondly an offer to review what has happened with the Head of Nursing for Neurology (?). Both of these are welcome and I reserve the right to make a formal complaint in due course – I understand that this will trigger a detailed review of what happened (or not) when and a detailed formal response.

My concern all along has been to improve processes, not just to complain, although I am beginning to wonder if a formal complaint might add to the weight of improvement effort already underway. I don’t in any way wish to devalue those efforts, for they do seem to be taking my concerns seriously, but maybe just maybe a formal detailed investigation might add something. I will wait to see.

Sort this mess out! PLEASE

not-good-enough-2So this morning I went to see my GP to review the discharge letter and get clarity on who needed to do what when. Imagine my surprise when, 10 days after discharge, he asks if I have brought a copy of the letter with me – because he hadn’t yet received one! I hadn’t because I naively imagined that the hospital would have sent him one. Apparently, letters from Bradford hospitals come electronically but Leeds have to post them! I explained that my primary concern was to ensure an ongoing supply of hydrocortisone until it was reviewed by the endocrinology team. He was happy to give me a prescription to tide me over and I was happy not to have it fulfilled until the last minute (credit to the pharmacy who were happy to reserve the drugs for me until I was certain they would be needed, potentially saving the NHS £76 for the cost of drugs).

Next, I ring Dr Murray’s secretary (the endocrinologist) to ask about possible follow-up appointments and the impact of running out of hydrocortisone because I haven’t yet had an appointment despite the discharge letter asking for a clinic appointment in 2 weeks. She says that I need to speak to the ward from where I was discharged…

Ring Ward L25 explaining the position, to be advised that they will fax the letter to my GP along with a comment that “they usually go electronically”. I just couldn’t be bothered to delve into what had happened.

Ring my GP back advising that the hospital would be faxing over a copy of the letter and wondering whether there might be a short slot for me to see Dr Manby once it arrives. After a bit of to-ing and fro-ing the receptionist agrees to speak with the DR and see what might be possible.

THIS IS NOT GOOD ENOUGH – here I am with my copy of a letter asking the doctor to initiate certain things(some of which I can interpret and some of which I cannot)

  • 2/52 repeat U+Us and BP
  • 2/52 endocrine review
  • 2/52 goldman visual fields test
  • 6/52 ns opd
  • 12/52 mri plus gad

and  the best part of 2 weeks into the process (and the 2/52 means in 2 weeks’ time) he hasn’t even got the letter asking him to do them! Even worse, all the documentation about hydrocortisone says not to stop suddenly and my stock is running out with no clinic appointment to review them (even though elsewhere in the discharge letter it states the need for a follow-up clinic appointment in 2 weeks). I remain uncertain about whether or not the 2-week and 8-week clinic appointments mentioned in my discharge letter have been requested, and if they haven’t who should be doing it.

Were I a passive patient and not informed and active, there is a significant chance that nothing would be happening and who knows what the implications of that might be on my health.

On the way home

going_home08:30 Monday 4th July 2016

Well, today is the day I hope to get home. Fluid balance is OK (which means I have not suffered a bout of diabetes insipidus), blood tests apparently OK despite one result with a low white cell count they are now OK, no cerebrospinal fluid pouring out of my nose (in fact just a slight bloody discharge, most especially after eating – presumably exercising my facial muscles is disturbing a clot somewhere up there).

The surgeon, Mr Nick Phillips, has just been to see me and was greeted with deepest thanks and a hug for a pain-free and, from my viewpoint, uneventful recovery so far. He said that the operation went successfully and was happy with the nasal discharges. From his viewpoint I am OK to go home. He will follow up with a further MRI in 3 or 6 months – they used to do them after 3 months but didn’t take any decisions at 3 months so are now looking to a 6 month follow-up. I asked what fills the hole left by the removal of a walnut-sized tumour; apparently the surrounding tissue, brain especially, expands even during the surgery and in the immediate aftermath it is filled with ‘gunge and blood clots’ that eventually dissolve (sometimes not for 3 months or more, hence the limited use of a 3 month MRI). The histology comes back a week on Wednesday and if, as is the case in over 99% of cases, it is non-aggressive then I will hear no more.

There is a dissolvable pack ‘up there’ which will be checked by the ENT surgeon (who cuts the hole in the sphenoid bone to enable access to the tumour for the neurosurgeon) in a few weeks time. If it has not fully dissolved then it may need a bit of a clean, but they are generally OK I was told.


Some unspecified doctor doing the ward rounds. Don’t you just hate it when they stand at the door of your room looking at the notes and talking about you rather than with you? I tried to engage them but to no avail!

…and so I wait…


The Endocrine Registrar comes round and takes about 2 minutes to agree that I can go home. Then we have a useful conversation about drug regime. Because they don’t yet know whether my pituitary is working properly, I will be on a ‘metabolic dose’ of hydrocortisone by mouth for a few weeks until the gland settles down and they get some bloods and new Glucagon Stimulation test. Meanwhile the drug may cause some weight gain, possibly over-activity or possibly acid reflux, although on the dose I have been given none of these are expected and so the Lanzoprazole I had been receiving ‘to protect your stomach’ has been discontinued. I’m happy with this because it is a Proton Pump Inhibitor and the other effects of this are some I would rather avoid.

She goes through a list of follow-up investigations, some of which I recall – blood test for hormone levels once the pituitary settles down, Glucagon test, Goldman Test for optic field, reassessment by the Multidisciplinary Team then a meeting with Rob Murray the endocrine consultant, followed by an MRI to see how much if any of the tumour is left behind.

So, I can go can I? Well no. It seems that I have to see the physiotherapist, the Occupational Therapist – a man who has been wandering around unaided, has just showered himself, has spent 2 days typing away whilst listening to the radio whilst discussing his case with various staff! Well, less than an hour later, it seems that I don’t need to see these people anyway 🙂

So I can go can I? Well no. I need to wait for the formal discharge letter and medications. The doctor is typing the letter as I chat at the ward desk but the challenge is going to be the meds. Apparently there could easily be a 1 to 2-hour wait for them to arrive from the pharmacy! I offer any help I can to speed things up but we agree that the best thing to do is to go away for a couple of hours and they will ring me when they arrive. So I go into town for lunch with Suzanne and Lucy, after which I buy a few goodies from Carluccios for the ward staff. Presented as ‘a bribe if the meds haven’t arrived and a reward if the have’. Well, as we were chatting I was told they were on their way, so reward it was 🙂

16:10 the drugs arrive and I get a quick rundown and briefing about carrying a green card to advise doctors of my current course of hydrocortisone and I am finally out of there.

Only just over three days after I went into surgery, this wonderful NHS has delivered admirably, leaving me sitting at home by 17:10 with my regular cup of Early Grey watching Andy Murray beat Nick Kyrgios (I hope).

Enough for now, the blog will continue but perhaps at a lower frequency as I expect stuff to be happening less frequently in the future.

Language patterns in medicine

wrong-questionIf you have read this far then you know that I have just spent a few days in hospital. As part of that I have been asked a host of questions about my health history and some of them have caused me a little concern, not on grounds of their content but their form. More than once in the last few days I have been asked questions such as:

“Do you know where you are?”

“You don’t have any allergies do you?”

“You are OK with that aren’t you?”

On one occasion I answered the first one with “Yes thank you”!

Now I accept that I am being a bit smart-ass with that answer because it was perfectly obvious that the nurse wanted to test my understanding of where I was by asking me to state where I was at that time. But at its heart it is a closed question.

The other ‘mistakes’ are not so innocent or harmless in my view – they are leading questions, and we all know where leading questions can take us (to the answer we are seeking). It’s easy for someone under stress, such as those waiting for an operation, to answer ‘Yes’ to the leading question without really thinking it through. It would be tragic for someone to receive inappropriate treatment simply because they got the ‘wrong’ answer to a leading question.

There is no room for these potential mistakes and I don’t know whether nurses and doctors get training in such aspects of language use – but they should!