Category Archives: Pituitary

You 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.

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.

So 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.

08:30 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.

09:00

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…

12:10

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.

If 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!

After 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.