allaboutGeoff

The major news 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.

Well, this morning I got a letter from the Outpatients Appointment Service at LTHT letting me know that I had an appointment ‘under the care of’ Dr Ghosh’ for 30th December. Well, I don’t think I have ever seen Dr Ghosh, so wonder what this appointment is for; it doesn’t say on the letter so I ring up. It tuns out that this is the long-awaited sleep apneoa appointment. Good!

While on the phone I suggested that it might be helpful if they could put on the letter which clinic/specialism the appointment is for. Apparrently they can’t do this because of confidentiality reaons “the letter might get opened by the wrong person”. Don’t understand this because some previous letters have contained such detail – I just picked up a random one that happens to be on my desk and it clearly says “your neurosurgery appointment”. Moreover, I have received, from the same hospital, copies of letters with large amounts of personal medical detail.

Am I being fobbed off, or are there different protocols for different specialisms, and if so why?

By the way, the new blood pressure ‘agent’ (seems to be the current jargon) has had a pretty impressive and rapid effect with my BP dropping about 15/10 within days of starting it. Impressive.

Just back from seeing my GP after having coincidentally having been rung by Anna in the pre-operative team at LTHT. By the way, this is the ONE team over there that has been proactive and kept asking about progress,;I passed on my thanks and congratulations for their efforts.

The pre-op people had spoken to my GP (or was it to the surgery, I did not check) to be told that I had not yet been to see him – what they did not know, nor were they told, was that I had an scheduled appointment about 4 hours after speaking with them. The pre-op people want three BP checks in a week and didn’t seem at all interested in my home checks, which is  a shame because when I saw the GP he said he ws perfectly happy to accept them and didn’t even check my BP.

Instead, he perused my latest data, showing a reduction from about 160/100 to 140/90, and suggested that now I was on the full dose of Ramipril it was probably time to introduce another agent in order to bring it down even further. So I come home with some Amlodipine to add into the mix. Aparrently I have to watch out for (usually) transient facial flushing and/or swollen ankles.

OK by me, I believe that this will not only get me closer to a surgery date but will, in the long term, extend my life – always a good thing 🙂

Remember that all this is catalysed by a wish by the pre-op people, technically the anaesthetist, to get my BP ‘under control’. Now apparrently a pre-op assessment only lasts 12 weeks and my understanding is that I will only be listed once my BP comes down. With a queue of 16 weeks last time I asked, there is an interesting challenge here!

I was listening to some medics and politicians talking on the radio the other day about a target of patients being treated within 18 weeks of being referred to hospital. I wish!

And so I ended up thinking about where we are (I am) right now, so here goes…

I was first advised of this Pituitary Adenoma on Thursday 28th May (2015), was referred to St James’ (part of LTHT) the same day and seen by someone on Monday 8th June. So presumably my 18 weeks runs from then and ran out on Monday 12th October?

However, I still do not have a surgery date and I have two outstanding issues. Firstly that I was referred to the sleep clinic as part of the pre-operative assessment process. I have still to receive an appointment as a follow-up to that despite it being almost 2 weeks since my GP said he would make the referral. (I hope he did, I will check when I see the GP on Tuesday). I was told that this would not affect my listing for surgery apart from needing a high dependency bed after surgery, but it would be good to sort it out.

The second issue is controlling my blood pressure. Yes, some of the delay is legitimately attributable to the desire to bring my blood pressure down before operating, although it’s intriguing that the letter that sent me back to my GP for action on this did not have a target BP nor did it have any detail about who/where to send it back to when BP is under control. But on reflection, my biggest gripe is that this whole process of BP control could have been started so much sooner. It must have been apparent at first look that some substantial medical intervention would be needed and I could have been sent for BP control much earlier and hence be available for surgery much sooner.

I would like to think, indeed this is my rationalisation, that if things were more serious I would be getting more urgent attention…

Fortunately (?) I have yet to hear from DVLA to whom I sent the relevant form advising them of my condition. I can’t imagine that they will withdraw my licence, but again it would be good to have clarity.

The good news is that when I raised my experiences with LTHT’s Head of Patient Experience, I was taken very seriously and we are now working to see how my story might help their learning journey and improve systems and hence the experiences of future patients.

So I went along to see Dr Manby (my usual GP is on holiday) for a blood pressure review, taking along my own spreadsheet and graph from my monitoring over the last 3 weeks. Some reduction from around 160/100 to 150/95 but not yet enough to be happy so my Ramipril dose has been increased to 5mg per day and we will check again in 3 weeks time.

As part of the process, patients who get an increased dose are asked for another kidney function test about 2 weeks after increasing the dose. So, having explained that I seem to have deep veins inside my elbow and that it is much simpler to take it from the back of my hand I ask for and receive the paperwork for blood to be taken at the hospital and am happy to arrange it to the agreed  schedule. Intriguingly, when I ask why I can’t have them done at Leeds Dr Manby says that I can and not least because Bradford send all their bloods to Leeds for analysis anyway. Now this is not what I was told by the Health Assistant who tried and failed to take blood samples 3 weeks ago – she was insistent that I had to go to Bradford.

He referred to a slightly unclear fax they received from Leeds about the sleep clinic, so I explained the admin mess and suggested that this may have come from the pre-op assessment (they did say that they would do this). All clarified, he agreed to send for an urgent appointment to get this resolved.

Next is to consolidate the ‘lifestyle changes’ I have already started implementing – more exercise and less food being the essence. The trick for me will be not to make too big a deal about this and to avoid anything radical. Being something of a foodie, I have already started thinking about the food issue:

• Whatever I eat needs to be tasty and filling – feeling hungry all the time is surely not necessary;
• Extremes need to be avoided – banning chocolate, ice-cream, bread, bacon etc removes the possibility of occasional treats
• No ‘dieting’ – it’s about balance and quantity not only eating courgettes or beetroot!
• Supplements – are they proven to be necessary, or is there evidence that overdosing has no ill effect?

I’m going to write more about this in the next few days, so that’s all for now folks!

Frustrated yet still smiling

6 months ago I considered myself to be an unfit  yet  healthy man. Now, thanks to the ministrations of the NHS, I find myself ‘suffering’ with a string of conditions, most of which appear to be having no  effect on my actual lifestyle.

Today’s tale is of a telephone call received I was in France from the nurse in the preoperative units. She said she understood I had been put on a trial of something or other as a consequence of my visits to the sleep clinic. explained that yes I have been to the sleep clinic but that as yet I have received no feedback and that I had certainly not been advised that I was to partake in any sort of trial.

I repeated that I had received no feedback whatsoever about the results of the overnight blood oxygen monitor test. The nurse explained that the aneasthetist had seen the results and suggested that was evidence of mild sleep apnoea that he would like exploring.As I recall, there was also a suggestion that my GP had received a letter and was aware of this. I explained that, on more than one occasion, I had asked to receive copies of all correspondence from the hospital about me and had received nothing from the sleep clinic so I was starting to wonder what happened.
After a bit of pleasant to-ing and fro-ing the nurse agreed she would get the sleep clinic to send me a copy of the correspondence and also check with the GP about my blood pressure at the end of the month.

Once more, a disconnected administrative system and a lack of recognition that it is me who is the real customer and not my GP, leave me not knowing what is happening and what needs to happen next. Surely it would be easy to provide me, the customer as well as patient, with perhaps a flowchart illustrating the anticipated route through the system as well as expected wait times between stages and who to contact as any particular time about any particular issue?
I still consider myself to be an unsafe and healthy man, although I am starting to be worn down by all this seemingly unnecessary to-ing and fro-ing.  My heart sank for a few moments when I realised that once more information about me was being transmitted without my knowledge and that it seemed that a decision had apparently been made without consulting me.

ADDENDUM – 2 hours later

Same nurse rings back to explain firstly that she had copied me her copy of the letter about my sleep clinic and secondly that my GP would have to refer me back to the sleep clinic “because he holds the budget”! FFS – it was OK for the pre-op screening to refer me in the first place, yet now they have found something to ‘explore’ I have to go back to my GP for a referral brought on by the hospital in the first place. Yet another delay while I get back from France, book an appointment with my GP, only to be referred back to the hospital! Grrrrrr…..

Good job this adenoma is not serious (is it?) or needing critical care.

As I set off for the French trip that I have been postponing for week, I still await developments.

My blood pressure is slowly coming down and when I get back to Blighty I will need to try to arrange the appointment that the GP requested. It’s currently running at around 155/100 but as I wasn’t given a target by the surgeon I don’t know where I stand.

I took the overnight oxygen monitor back last week as requested but have no idea when i might get any feedback. Once again a gap in the system – surely it would have been easy enough to download the data there and then and let me know whether there is any concern, but that would be patient/customer friendly wouldn’t it? This gap has helped me realise another less than satisfactory aspect of the whole administration of my case, namely that I have never been told how to contact the various specialists dealing with me. Most of the letters come from some anonymous Appointments Service and on the odd occasion I have actually managed to get in touch with anyone I have taken the initiative and found out the relevant PA/Secretary’s number myself. It helps that I know a few very senior people in the Trust and can manage to bypass the gatekeepers if necessary, although I do my best not to (ab)use this inside knowledge unless absolutely necessary. Having said that…

The positive news is that I have been speaking to the hospital’s Head of Patient Experience (who IS one of those insiders) about all this and we have agreed to try to find  way for me to tell my story in a constructive way. I don’t want to complain formally but I do want my experience (which is by no means extreme) to inform improvements to the system. I’m going to spend some time coming up with my own ideas about what I would expect and how the current system falls short.