I have not posted an update for a while so this contains ‘action’ (and mostly the lack thereof) over the last couple of weeks. The summary is that I am still waiting for medical progress whilst encouraged that the Patient Experience Team at LTHT have engaged with me and want me to help them improve their systems.
After a couple of visits to the GP, I am now on what I understand to be the usual upper dose of Ramipril (10mg a day – althugh as drug dosage is generally weight-dependent I’m not sure if this takes account of my above-average weight). BP is still coming down and I am due for another review in early December. What’s interesting, and impressive, is that the Pre-operative Assessment team at LTHT have been proactive on this, ringing me on a couple of occasions to ask how it was going. The latest, a couple of days ago, suggested that because of the delay in getting my BP down I would have to go through the pre-op assessment again. Oh well, I understand.
I did ask what the target was for my BP but was told “We cannot give you one”, nor could/would they give me a range of acceptable BP. If they don’t know what is acceptable then how will they know it is OK!? The great thing is that they will contact my GP to see how it is going – one less hassle for me 🙂
Still have not heard from the sleep apneoa clinc after my GP referred me on the request of the pre-op team. Maybe they have a long waiting list, and maybe a simple acknowledgement would reassure me that they at least have me in the system; maybe they could just give me an appointment even if it is 3 months into the future?
I have made contact with the Patient Experience Team at LTHT, they have read my blog and reecntly I was invited to meet some members of the team with a view to exploring how I might be abel to help improve the patiet experience.
I stressed that at all points the (medical) care I have received has been fine, with one exception that I have already mentioned – at no point has anybody ever sat me down for a conversation along the lines of “OK Geoff, so this is what a pitutary adenoma is, this is what we expect, this is the prognosis, this is the care pathway you will experience…” Nearly everything I know has been either offered me in parts or confirmed with the medics after my own internet research. IMHO such a conversatin could/should be done by either my GP or the first consultant I saw at the hospital.
I was delighted at how well my willingness to help was received and ws pleased myself to hear that some of the issues I have raised were already on the agenda for improvement (not as a consequence of my story – I’m not claiming any credit for that). So we, OK they, cooked up three specific opportunities for me to help – acting as a patient voice on a couple of development projects and maybe making a film of my experience to be used in various formats and for training and awareness. Let’s see what happens, I am encouraged.
So, the summary again – waiting for BP to come further down, waiting for an appointment for sleep apneoa about to get involved in improving the administrative processes about which I have been critical.
Amd how am I feeling? Medically/physically fine – there are no additional symptoms and as I have said already if this had not been discovered incidentally on the original MRI then I woudl be waking around happily ignorant. Phsycholgically, I still hold to my view that it’s not affecting me – although others might be better equipped to comment on that. When asked, I happily say that I am not full of bravado but genuinely unaffected – mind you the seemingly interminable proccess might be starting to irritate me (which of course puts my BP up!!)