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!

Recovery underway

time to healAfter all the hassle of the last 13 months, ending with a long wait for partly  avoidable reasons on Friday morning I went into theatre at ca 1400 Friday and emerged very groggy but adenoma-less on Friday evening.

I am typing this from my recovery bed in LGI, having spent a wakeful night in a High Dependency Bed because of my moderate sleep apnoea. As always, every single member of staff has been wonderful and although I do have a few constructive comments to offer this is not the post for that. This post is a celebration of the successes of our NHS. I expect to spend Saturday and Sunday in hospital and then, subject to blood tests being OK, go home on Monday when I will have at east 2 weeks ‘doing nothing’ – I gather the word is convalescence.

The effects of a 3 hour anaesthetic wore off overnight and I’m now feeling MUCH better than I had feared I might. The only pain is a flashing headache if I am daft enough to cough; my head does not feel congested (yet, as Suzanne keeps reminding me); my fluids are in balance (so no diabetes insipidus); bloods have so far been fine and so it’s fingers crossed for a Monday release.

I have just been transferred from the HDU bed to a normal ward – shame really as I had a side-room in HDU and share this ward with three other men, none of whom look anything like as healthy as I feel. Thankfully I have a window over Leeds from the 5th(?) floor and it’s bright with summer clouds. IMMEDIATE UPDATE – as I am typing I get moved to a private room. Not as nice a view – unless the sight of the helicopter landing pad turns you on, but quieter.

So what does the future hold? Visit from the Endocrinologist (Monday?) who will apparently prescribe hydrocortisone and something to prevent the Hydrocortisone messing up my stomach, then discharge and a list of other appointments – more bloods, Goldman Test for eyesight, MRI to see how much of the blancmange walnut was left behind…

So pleased that at least the surgery, which was the bit I was most concerned about, is over. So pleased also to see Suzanne (my wife if you don’t already know her) waiting as I came round from surgery and most of today to help keep me sane lying/sitting in this bed. She saved me from myself in week1 and possibly on occasions since and I just know that it has affected her more than she shows. Thank you Suzanne, I love you.

A rocky road to success…

MRI ScannerWhen my surgeon’s secretary rang last week to rearrange my surgery, I just about recall her mentioning a possible need for a further scan. Well, with less than 48 hrs to go before going under the knife, I had heard nothing and assumed that he had decided otherwise.

Imagine my surprise to have a call this afternoon from the booking service for Radiology (who do the MRI scans) saying something along the lines of ‘We have just found this request for a scan and would like to book you in”. Temporarily holding back my frustration I offer immediately this afternoon or Thursday (tomorrow) afternoon. No can do – we have no slots this afternoon and we only offer 0900 appointments. Well my restraint was under severe strain by now, so I explained as politely as I could (I do hope it actually WAS polite) that after rearranging my life three times for surgery that has yet to happen I had scheduled one thing in the morning that I really did not want to move and how hacked off I was with the whole process. Well, for once I did not get the ‘computer says no’ treatment. The nice lady (sorry, I did not get your name) asked if she could go away and see what was possible, maybe even arranging it for the morning of my surgery.

A phone call less than 10 minutes later and i was offered an appointment for 1800 today! Who knows what happened behind the scenes but thank you someone for meeting a patient’s needs, albeit 2nd time round.

What did we not hear?

earsTwo blog posts in one day – something interesting must have happened!

Amidst all the gloating, rage, disappointment about the referendum result, my great friend James Traeger reminded me, by posting this blog, that I am a change leadership professional. So here is a short piece reflecting on the outcome from that perspective.

There is a view that many of those voting for Brexit were essentially casting a protest vote. Protest at austerity, protest at uncontrolled immigration, protest at who knows what… What they are saying is that they have not been heard. As a good change professional (well, I think so anyway!) I need to recognise and be able to work with the difference between hearing someone and that person being heard; the difference between my ears listening to the words and my heart and brain listening for the meaning. I need to seek out and learn from the naysayers and the resistors, for sooner or later their grievances will surface and get in the way of progress. Listen to them properly, explore with them what lies behind their position, for only then can we start to change their minds.

We are also repeatedly told that effective change relies on a positive vision of the future. It is not enough to say what is wrong, we need some idea of what might constitute right. Yet here we are with a campaign about getting Britain out of the EU. Where is the compelling narrative of the future? Where is the roadmap for change? Where are the guiding coalition, the leaders? And where were the leaders who could understand and articulate the interlinked, systemic, nature of the argument (shame it wasn’t dialogue)?

Effective change leaders acknowledge the past, picking out and retaining the good whilst changing the bad. Not here, the baby risks being thrown out with the bathwater.

Finally, and for me this is almost above all else, effective change leaders are honest and humble. They don’t make promises and then change their minds; they don’t pursue their own agenda at the expense of the greater good; they recognise where things have gone  bit dodgy and set about repairing the damage…

Oh, for politicians of any hue who have studied and practised effective change leadership!

All change at Little England


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EU - inoroutWaking up at 0500 my wife whispered in my ear that it looks as if the majority have voted to leave the EU. I can hardly find the words to express the whirl of thoughts and emotions running through my body at a decision that leaves me wondering what our country has come to that we have a majority of voters who believe we can return to greatness by separating ourselves from one of the largest trading and social blocks in the world. I have been disappointed to be on the losing side of general elections, but never as disappointed as this.

The pound is already lower than for 30 years and I hate to think what will happen when the stock exchange opens. The years of instability we now face while trying to disentangle ourselves from the EU and negotiate alternative trade deals around the world. will hardly encourage inward investment (not that the Little Englanders will want that, after all those foreign Johnnies had better get their nose out of our business) and will likely lead to yet more of the bloody awful austerity that was not caused by the EU but by the greedy banking classes. Egocentrism wins.
I am sad that so many people think that closing our borders to people who make a net contribution to the economy is a good thing and just hope that those countries in which so many of our friends and relatives now live are not so small-minded and will allow them to continue living there. Those emigrants relying on incomes based in sterling have just had their incomes cut by 10% overnight, I doubt that they will thank you for that.

Isolationism has never been a good thing.

I’m trying to fight off my anger at this ridiculous decision, not because I am not angry but because it was anger that led to it. Unfortunately that anger got directed at the traditional enemy – ‘the other’ – rather than the real source of it, our own government and banking classes. For the first time in my life I now start to wonder whether there is a way to bypass a democratic decision. Shall we now pull out of TTIP, NATO etc because they cost us money – but recall that the money will not be spent on the NHS or roads it will be spent propping the pound up in order to make trade with our ex-friends affordable to them.

A sad, sad day and one which really makes me wonder about continuing to live in such a self-centred, little-minded country – but of course why would any other Europen country now want me there either?



Not again!

Staff shortages

Here I am less than 24 hours before surgery and, for the second time, it has been postponed. A very nice and massively apologetic phone call from my surgeon’s secretary advising that they are short of theatre staff and have had to move it to next week, same place same time – and hopefully not the same result!
She was at pains to explain that she had written on my behalf to the Clinical Director explaining what had happened – thank you.

So now I reorganise my life for the third time. I am fed up, my friends will be fed up of me telling them it is going to happen (and that I will be out of action for 2 weeks), my family are fed up (one of whom has now travelled down twice from Cumbria to help with transport and other arrangements.

For the first time in this whole process I am feeling totally pissed off, yet still sanguine(?) about being relatively low priority. Keep calm and carry on.

My story summarised

For those of you who have not the time or inclination to read all of the posts telling my story as I pass through the NHS, this 18 minute video was produced by Leeds Teaching Hospital Trust and shown to a recent internal conference on patient experience. It’s about to be edited down even further to show to the Board. I hope that it raises awareness of the challenges of getting the administration right and triggers the process improvements with which I hope to be associated.

Thank you to the Patient Experience Team for listening to me and helping make this film. If I look a bit grumpy on occasion (as in the still) then that’s because I spent about 90 minutes recalling just the downside of my experience. I want to reiterate that the medical care has, by and large, been wonderful.

The EU debate – worst of two worlds?

UnlikeEU - inorout,I suspect, many others, I will be voting in the EU referendum. Moreover, I have a predisposition to vote to stay in based as much on my own biases and prejudices as any hard data. Therein lies the biggest challenge that some of us face. I would like to be able to decide on a rational basis, upon indisputable facts about the various issues at play in what could be a defining decision on the future of our nation. But it’s a political arena and it’s hard to know what’s fact and what’s propaganda. It’s increasingly irritating that the debate (I would rather it was dialogue) is revolving around competing fears of what will happen if we stay/leave.

It is, of course, all speculation for nobody can actually know the consequences of the decision – especially when the consequences rest in the hands of politicians and bureaucrats of dozens of other countries around the world, to say nothing of the multinationals and bankers.

Where to go for this elusive ‘objective truth’? Well, accepting that there is no such thing leaves a hole which can only be filled with whatever sources are available. Newspapers? Each has their own agenda. Broadcast media? Some certainly seem to have an agenda, but what about the good old BBC which is required to be balanced? Well balance seems to consist of allowing equal airtime for opposing views and an attempt to provide independent analysis, but to me they are primarily a vehicle for lobbyists to air their views and I’m getting less and less interested in hearing what Dave or Boris want to tell me, especially when the tone of the debate gets more and more aerated.

So perhaps we can turn to that treasure trove of knowledge the internet? Same story here, what is ‘truth’ and what is propaganda? What about friends – either the real ones or those who simply carry that label on Facebook? Well one who meets both of those descriptions, and whose intellect I have long been impressed with, started posting some apparently objective analysis. But how do I decide it is objective? Academic references and seemingly independent research institutions and think-tanks are subsequently picked apart by others. How do I know they are independent? I don’t, they just somehow seem to be unconnected with the usual sources, but I know no more about their funders that the next man.

I guess where I am going is that, apart from the philosophical position, there is no ‘objective truth. All that exists is a series of more or less biased positions and/or data promoted by individuals some of whom clearly have personal agendas.

How then, do I decide which way to vote? Some (Boris’ camp?) seem to believe that we (the country, or perhaps big business) would be better off freed from the strictures of the EU bureaucracy who they suggest inhibit our ability to make our own decisions about how to live or whether it is OK to sell undersized bananas. One might argue (I do) that they believe in the power of free markets. Others (Cameron?) might want out because they recognise the looming United States of Europe and want to continue believing in a Great Britain that died with the Empire a generation ago. It does seem to me that the long-term vision of the founders of the EU was either hidden from the country when we first voted ‘In’ or our politicians missed it at the time.

Where are the ‘big beasts’ speaking on behalf of the concept of a united Europe? One that is not a United States but which shares enough values and beliefs to keep us from attacking each other for another 50 years; one that values solidarity and communality; one that enables free trade across one of the biggest trading blocks in the world; that facilitates free movement of people across borders that are but temporary artefacts created by politicians?

So in the end I guess I will vote based partly on my preference for the latter philosophy and partly on a belief that the uncertainty caused by exit will be more detrimental than the current dysfunction. For the system certainly needs change and maybe a narrow margin of stayers might give Dave et al a renewed mandate for tougher renegotiation of the way the institutions work.

Discuss. Please.