Category Archives: Pituitary

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.

Connecting the dots – or not!

Connecting the dotsFrom the very beginning of my (ongoing) journey, I have felt that nobody was ‘connecting the dots’. I mentioned in earlier posts the feeling that I was being seen as a sequence/collection of symptoms rather than a whole entity presenting with a single syndrome. Well, recent experiences reinforce that feeling.

Loyal readers will recall that my operation, originally scheduled for 8th April was postponed (for very understandable and acceptable reasons) and has now been rescheduled for 24th June. On the day, and during a conversation with ‘my’ surgeon (actually one of them as I understand there may be as many as three finally involved!) we agreed the new date and he said “I will dictate a letter this afternoon confirming the date”. So the letter arrived on 25th (?) April. It was a helpful and informative letter, but with header details of ‘Dictated 08 Apr  … Typed 21 Apr’. Does it really take nearly 2 weeks to get a letter typed up?!

Anyway, it didn’t actually matter – at least in terms of the medical process – although I had been left wondering for over a week about whether or not the situation might have changed.

Next, in early May, I get a letter inviting me to an Endocrinology Outpatient appointment on 28th June. If you are observant you may have noticed that this is only four days after the surgery, for which I expect to be in hospital for at least three days! Puzzled, I rang the Referral and Booking Service Cluster 5 as suggested. After the usual security clearance and explaining my puzzlement that I was being invited for an outpatients appointment on a day when I might conceivably actually be an inpatient, I was informed that this was an appointment that should have happened last December, being a routine follow-up 3-4 months after my initial appointment. Yes, you read it right, it should have happened 15 weeks ago! I hope the recording of the phone call shows that I was polite!

Clearly the booker (or whatever her job title is) was not going to be able to resolve the puzzle and credit to her for giving me the phone number of Dr Murray’s Secretary and transferring me there and then. I explained that I had been referred for surgery that had yet to happen and wondered if this was a post-surgery appointment. I remain unclear about what had actually happened, suffice it to say that she volunteered to cancel this appointment and send another out. All that after a 2-minute wait while I hear her very clearly explaining how to do something unrelated to my call to a colleague in her office.

So yet again we appear to have disconnected dots – the Endocrinology Team not being aware of, or not acting on, the information that my surgery had yet to happen. And what happened to the appointment that should have been arranged for December?

It’s got to the stage that first I laugh at it and then I get on sorting things out myself – I am left wondering what someone less stress-resilient and less organisationally-aware would do.

On a more positive note, I went along to spend an hour or so in front of the cameras for the Patient Experience Team last week. Having contacted them and offered my experience as both a patient and change leadership wallah, they have been working away seeking opportunities to use my experience to reinforce the case for and help them improve their administrative systems, most especially appointments. I am delighted to be able to help in any way I can, I suspect that others might have found this journey much more traumatic than I and I reinforced my key message that the admin processes are as important as the medical processes in the overall care of patients. After all, the letter is for many people their first contact with the hospital and it is the ongoing route through which long-term patients are kept informed of appointments etc. Organisations who rely on good customer service, and the NHS must surely be one of those:

  • have  easy and transparent ways for customers to contact them,
  • they respond quickly to any changes in either the patient’s or the organisation’s situation,
  • they explain very clearly what the customer can expect,
  • they find out what the customer wants and do their best to meet those wants,
  • they constantly check how their customers are.

Some way to go here, but to hear that they will be looking at Kaizen/Lean/Toyota methodologies (and that I will be involved) is reassuring and a future partnership with Virginia Mason Medical Center in Seattle, who have radically improved their systems using these methodologies is encouraging. The journey will be challenging, tough and rewarding and I look forward to being part of it.

Bleeding patients/patience!

Not todaySo,today’s the day. Some 10 months after the initial discovery of my pituitary adenoma I am scheduled for surgery and arrive at Leeds General Infirmary at 0700 as scheduled. Interviews with one of the surgical team, the anaesthetist, the nurse, a CT scan of my face…and then the wait…

Let me cut to the chase – at ca 1400, I leave LGI because my surgery has been postponed. While I was waiting another patient had a brain bleed and needed the bed in the High Dependency Unit that had been reserved for me. I totally understand this and am really pleased that someone more in need than myself was able to have their needs met. Sitting in reception at the same time as myself was another old guy who was waiting for surgery on a ‘proper’ brain tumour that had been discovered only 3 weeks ago. He too was waiting in the hope of an HDU bed and I would be very happy for his needs to also come before mine.

So here am I writing this while hacked off, tired, slightly hungry (although the first thing we did after seeing the surgeon – of which more later – was to go downstairs to Costa for a sandwich and a coffee) and relieved that we have also rescheduled.

The surgeon (Mr Phillips) came to see us, full of apologies explaining the situation and recalling that he had only had to cancel a couple of these procedures in 10 years of doing 1 or 2 a week. The issue was not surgery but the HDU bed that the anaesthetist insists I need because I have slight to moderate sleep apnoea. (I wonder about the relative costs of wasted theatre/surgeon time c.f. wasted HDU time). Apparently the target for rescheduling is 4 weeks, and I was really pleased that he had remembered my Turkey trip around which today’s date had been arranged. To cut a long story short we agreed that there was no fundamental reason why the rescheduling could not wait until late June when my sailing in Turkey was over. My vision had not significantly deteriorated in the 12 months since the first Goldman Test, no other symptoms had emerged, the prognosis was not threatening so we were both cool about the postponement. The only significant risk is that there is a big bleed – causing serious headaches and blackouts, so we would know about it – and that’s no more likely in the future than the past. Bearing in mind that this thing has possibly been growing in my head for 20 years this seems a risk worth taking.

I keep surprising myself about the calmness with which I find myself handling this. Those of you who know me well might not recognise ‘Calm Geoff’, although I do know from my own self-reflection that when things get serious I find myself very calm, rational and far from the extrovert gobby loudmouth many of you will recognise. Yes, I know that I have felt stressed – a low level background most of the time, although it was surfacing yesterday before the ‘distraction therapy’ of a visit to the theatre (Chicago at Bradford Alhambra, since you ask, which was very good). Even so, my stress levels this morning can’t have been too bad because my blood pressure and heart rate were perfectly normal for me. Red Heart Hanging on Branch Something tells me that somehow this may be more stressful for those around me than for myself and I can only thank Suzanne from the bottom of my heart for her help, support, forbearance and love throughout it all.

Time to pack my bags

Keep calm and packI went for a 3rd pre-operative assessment this afternoon. Firstly, congratulations to the booking service who moved my appointment on the phone when I rang to point out that they had chosen a date when I would be in France. Straightforward as usual – they do seem very efficient in pre-op assessment – with BP, bloods, cardio, height & weight and medical history checks. All seems to be well, pending return of the bloods.

Secondly, congratulations to the nurse in pre-op (I’m so sorry I didn’t catch her name) who went out of her way to ring up and get me an appointment for an updated Goldman Test – even to the extent of offering me alternative appointments (nobody has ever done that before).

All my questions – about whether, contrary to the impression given in the letter asking me along for surgery, I would be staying in overnight (yes, probably for a couple of nights unless I react badly to the procedure); about whether or not Suanne would be able to accompany me to the theatre (yes); about relative trivia such as clothing and what to bring with me ( a small overnight bag, “slippers and dressing gown if you have one but don’t go out and buy them because you will be in a surgical gown most of the time”)…

Turns out that the nurse I saw used to work in neurosurgery, so I discovered that I will not be having a vacuum cleaner shoved up my nose after all – it is aparrently referred to as a ‘globsucker’.

So, I am now ready to rock ‘n roll, just need to pack my bag next week – Suzanne has booked us to go and see Chicago on Thursday night so that should take my mind off having to get up at 0600 to be at the ward by 0700. I still feel quite laid back about the whole procedure, let’s hope that continues. My only concern is whether I will be able to take a pre-planned trip to Belgium later in the week I expect to be discharged. Last minute decision I think.

We have a date!

mature-man-smiles-from-his-hospital-bedWell, after  many months of waiting I have a date for my operation.

A few days ago my surgeon’s secretary rang and spoke to Suzanne (I was out), asking if I could come in on 18th March. She said no, and reminded them that we had already corresponded and agreed that in view of the lack of urgency and my pre-existing arrangements, 1st or 8th April would suit my personal agenda much better. No problem, we will let you know…

Well, they have done and on Friday 8th April I will be going in to Leeds General Infirmary for day surgery with a 2 or 3 day overnight recovery stay. Whoopee, the long wait is nearly over!

I have to admit to paradoxical feelings. One the one hand delight that the wait is nearly over and that I face an apparently complex yet straightforward procedure; on the other the perhaps inevitable nervousness consequential on facing a general anaesthetic and having a camera, drill/saw and vacuum cleaner shoved up my nose to extricate this adenoma. All the same, it’s going to be another talking point and at least in principle it’s not life-threatening like heart surgery could be.

Somewhat astonishingly the date, and the next few days that I will spend in hospital, does not clash with ANY pre-existing appointments. HOWEVER, I am scheduled to travel to Belgium (by land) starting on the Friday after discharge. I will have to discuss this with the surgeon.

The interesting thing is that before then I will probably have to go through a third pre-operative assessment as the second one will have time-expired. I wonder if the system can synchronise these events? If I do have to it’s no real problem, just a hassle of scheduling half a day when it might actually take 30 mins like last time!

Hey ho, off to hospital we go.

ADDENDUM

On detailed reading of the letter something seems to be missing. The letter refers to it being a ‘day case’ ward, with no mention of whether or not I will be staying in hospital to recover. All my previous discussions have indicated a 2 or 3 days stay.

I wonder if this is yet another example of not connecting the dots?

9 months too late!

Another pack of stuff from the hospital today, from my Key Worker who will apparently “…act as a point of contact for you to provide information, advice and support.” Well, well well…

The content is great, with one possible exception, and I will come back to this later. The intrigue is that it’s 9 months too late! The ‘setup’ in the letter is :

  • “Following your appointment with Mr Phillips..” – which happened over 5 months ago
  • “…you have attended the pre-assessment clinic…” – twice, once 4 months ago and once about a month ago

It seems that my Key Worker will “..aim to visit me while (I am) an inpatient…to complete an holistic assessment which looks at any needs (I) may have”, although as she may not see me during my inpatient stay “..I will contact you …2 weeks after your discharge for routine follow-up.” So she only aims to visit me and if she doesn’t then my holistic needs assessment will not get done (or might get done 2 weeks after discharge, I’m unsure). Now this might just be poor wording or it might be that I am not ‘guaranteed’ a visit and holistic assessment of my needs before I am discharged, which is slightly concerning.

And it also seems that I have to contact her when I get  date for surgery – how difficult is it for the hospital to let her know?!

Anyway, grump over and on to the material content. As I mentioned above, most of it is very helpful, or would have been had I been given it at diagnosis.

  • A good leaflet from MacMillan explaining about the pituitary and tumours (although the phrase “usually always benign” might need clarifying!).
  • A leaflet about my Key Worker, who I now read I can “…expect to be given soon after your diagnosis…”. Well, if 9 months is soon then there is no wonder the NHS is in a bit of a state.
  • A leaflet about the Leeds Specialist Pituitary Service and their Multi-Disciplinary approach.
  • A leaflet from The Pituitary Foundation – who I had earlier found to be a good source of information, although if you read this column regularly you might recall that I found their support group somewhat less than supportive.
  • Finally a leaflet which while informative raises a totally new issue to me about Steroid Replacement Therapy. The letter offers the leaflet on the basis that “…it is usual to be prescribed steroids following surgery…! Well that is news to me, indeed I recall a discussion in which I was told that, because it is a non-functioning tumour and i have few adverse symptoms, it was quite likely that I would not need any ongoing drug treatment. Does this nurse know something I don’t? Is this a standard letter issues without thought or consideration of the individual circumstances?

So here we are again, some great and helpful stuff mixed up with processes that don’t seem to recognise me as an individual and which raise new questions (will my key worker see me in hospital to plan an ‘holistic assessment’? Will I be prescribed steroids and if so how come nobody has previously mentioned a cortisol deficiency?)!

I’m pleased that I am going to have the opportunity to draw the whole saga to the attention of the powers that be in LTHT and highlight a few areas where improvements in the patient experience can be made.

Meanwhile, I have booked a flight to SW France for late March in anticipation of surgery in early April.

Coming soon…

Well, things are moving forward again and I have a few bits and pieces to add to the story so here goes…

Firstly back to that sleep apneoa. We already know that my consultant decided that a mask would be more hassle than it was worth. He had also commented on how long it had taken for me to get to see him. The letter he sent me and my GP also mentions that fact and that he will ‘look into’ why it took so long. I look forward to hearing the results of his ‘looking into’. On a slight downbeat note, I was contacted by the customer experience team with a suggestion that the film unit would contact me in early January to arrange some filming. Well, it’s long gone early January and so far no response. Perhaps they need a chase.

I also had an encouraging interchange about the timing of my surgery. As nobody was contacting me, I contacted the surgeon’s secretary asking when I might be listed. The answer was ‘March’ – but when in March I wondered? So instead of simply asking, I explained a couple of constraints (my birthday on 20th when I don’t really want to be in hospital and a trip to Turkey in July which will involve flying) and wondered if my surgery date could be fitted around that. The response was encouraging “We will do our utmost to accommodate your request…”.  A known date would be good, but this commitment is an improvement on simply not knowing.

Ready for surgery

Pre-operative assessmentToday’s visit to Leeds General Infirmary was for a pre-surgery re-assessment, the old one now being time expired after 13 weeks. Until I pass this gateway I cannot get on the surgery list, so I was keen to ‘pass’. I had already been impressed that I received an appointment so soon after getting clearance on my blood pressure (1 week from clearance to appointment) and seeing the sleep clinic (again about a week).

Even more impressed with the controlled whirlwind I entered when I arrived just before 1300 for my re-assessment. On announcing myself I was immediately sent down for an ECG; ECG complete with no waiting in 5 minutes; back to reception to be sent off for an interview with the nurse, who was personable, helpful and quickly reviewed my earlier notes asking for any changes to earlier responses; blood pressure OK, swabs for MRSA went up my nose, under armpits and in my groin (last time’s were clear); sent off for blood samples where I didn’t even get to sit down before I was asked through and a very chatty young man swiftly and smoothly took four samples from the back of my hand (without even challenging my proposition that this would be easier than my inner elbow) and sent me back to reception from where I was dismissed having completed the assessment. All in all about 35 minutes, much of which was spent wandering around from one location ot the next. Great service.

Finally, a mention that I may be referred for another Goldman Test (for visual field assessment) because the last one was 5 months ago. This should not delay surgery though.

Even better was the help given to me in identifying to whom I needed to speak to check that I was on the waiting list (and possibly influence about when I am listed!). Thank you everyone this afternoon, I walked away well pleased with a smile on my face. Only downside was that I had paid for 3 hours parking and only needed 1 – oh well, small price to pay 🙂

Whooppeee! Sleep apneoa not a problem

The major newCPAPs is that after a very informative visit to Dr Elliot in the Sleep Clinic I will not be sleepng in a CPAP* device. To summarise his words “A CPAP would make a difference but not the sort of difference that you will like!”

The essence of the story is that my overnight monitor showed that my incidence of ‘breathing breaks’ is at the bottom end of moderate. If it was Low (the next category down) they would do nothing, and as I am not showing any symptoms of daytime tiredness he sees no reason to inflict a face mask on me in which I would have to sleep. I’m rather pleased with that outcome as yet another asymptomatic condition has been assessed and a decision made not to do anything.

He also said that there is an association between high blood pressure and sleep apneoa, so as my BP comes down the SA could reduce. As will it also as my weight reduces 🙂

So, that is one obstacle to surgery removed. Aparrently the concern is to help the anaesthetist understand how much, if any, sedative to give after the operation.

Dr Elliot was superb. Empathetic, clear in his explanations and expectations and I even managed to get into the clinic first at 0900 as promised on the appointment letter. He even said that a letter would be on it’s way to my GP, copy to me, today! And to add to the trail of administrative woes, he commented that he didn’t understand why it had taken so ong to get me into his clinic! Me neither.

 

*Continuous Positive Airway Pressure device – ‘blows’ air up your nose to keep the airways open and reduce the incidence of ‘non-breathing’ events.