Well, the good news is I’m still alive. And in a ‘for what it’s worth’ sort of a way, so is Denise. The reason for the complete lack of activity on the site is that we’ve both been very unwell. Denise went down with the very nasty ophthalmic shingles and in a desperate attempt not to be seen as some pathetic, peripheral outsider, I attracted attention by pulling off a (literal) masterstroke. The core of the story and the whole sorry timeline went something like this….
Denise first complained of a slight irritation in her left eye, but within forty eight hours the pain had become unbearable. Went to GP, left without a diagnosis but with an appointment at the Eye Clinic the following day. Checked with the Clinic, who had us scheduled for that afternoon (mistake one!). Hastily ordered taxi got us there, only to remain without a diagnosis and, in return, an anti steroid drop. Two days later, appared to have a reaction to the drops, called ‘Out of Hours’ and got an appointment for 10.00pm. Got there and was informed that there was a 90 minute wait. Denise was in unbearable pain and hadn’t slept for three nights. So, obviously we jointly ignored the oblivious receptionist and checked in to the A&E service instead, an altogether more pleasant environment. Eventually got seen and was diagnosed with ophthalmic shingles, based purely on the rash on her forehead and around her eye. Left in taxi with retro virals and drops for home circa 12.20am.
On the advice of the nurse, tried to ring GP surgery to get an appointment with GP. Subjected to the most obnoxious, unhelpful and ‘can’t do, won’t do’ attitude of the receptionist, no matter what the issue. Her ‘solution’ to the patient dilemma was no, ring the following morning. So, having now no doubt ensured that I was well documented in the patient abusive and to be watched pile, I rang the next day, got a GP to visit and was told to double the retro virals and change the drops. As I write this memoire, she is still visiting the Eye Clinic and at the time of writing is still in considerable pain, has a dilated pupil and high pressure in the left eye (and with more fundamental changes in medication than you can shake a stick at).
Two days after finally getting a diagnosis, I was about to administer the eye drops to Denise when she noticed a droop in one side of the mouth and a failure to find any function in my left arm and hand. Despite her significant pain, she behaved wonderfully, made sure I was comfortable and dialled 999. I remained conscious throughout and my abiding memories are that the emergency service was first class. There was some consternation about the timescales for my CT scan to receive a secondary opinion ( to check for potential bleeds), but I was largely unaware and Denise dealt with all of it with uncommon clarity and good grace. I received the systemic thrombolysis, which is the administration of drugs called lytics or “clot busters” to dissolve blood clots that have acutely (suddenly) blocked your major arteries or veins and pose potentially serious or life-threatening implications. To be effective, the therapy needs to be initiated as soon as possible, before permanent damage has occurred and am aware I received them within the four hour cut off period.
I stayed in the ward for three days and was then discharged with comprehensive discharge paperwork, including requests for a carotid doppler, a kidney function test and follow-up consultant and stroke assessment clinics. Whilst, 12 weeks later I am well enough to write this post, I am disconcerted that:
- the outpatient appointments were transposed, meaning that the stroke assessment clinic was timetabled first and cancelled without notification after I’d arrived; I asp turned up for my stroke follow-up, only to be cancelled on arrival and without advanced notification
- every time I have asked for repeat meds through the EPS, it has failed and Denise had had to resort to ringing the GP to expedite the issue, with the receptionist staff categorically denying that what the GP then re-enacted can actually be done;
- despite the repeat EPS actually being done by a GP the night before, that no-one had the decency to ring up and confirm that what we had asked for had been completed.
- despite the practice manager having a voice mail on his answer phone with request to ring back he (or she) has singularly failed to respond;
- despite the best practice examples we can see on shows such as ‘GPs: Behind Closed Doors’, and despite the discharge data and associated actions being sent to the GP and only copied to me, until my follow-up with the consultant, I was still without the offer of a Carotid Doppler (hospital based) and kidney function test (GP service).
- It transpires that whilst it is laudable and indeed praiseworthy that an urgent GP appointment can usually still be arranged on the same day, it seems to be at the expense of virtually every other service that even a half witted GP practice with a half competent GP system can automate and flag up with minimal distress and with some semblance of continuity of care to the individual who is supposed to be core to the process.
I haven’t recounted the half of what actually happened, for risk of reader fatigue and the wavering and still fragile typing ability of my left hand. And whilst I can’t deny firsthand the first class service that I received from the paramedic team, it seems that the pre and post treatment processes and protocols are the subject of a can’t do, won’t do, my way or the highway, exemplified by some within the general practice community, that is everything about intent, commitment and work ethic and little or nothing to do with the wider, structural issue of funding. How often in my working career did I stress that whilst you endlessly spout the party line of negativity and show zero empathy for the struggling patient at the heart of the issue, you could have actually solved the question in hand and solved the individual’s genuine concerns. How little the world has moved on?
And the good news?
Well, I’m hoping that Denise is actually improving, despite her obvious concerns to the contrary, even if the changes are subtle. I’ve got virtually all my movement back (some residual limitations in the left hand), and I’ve still got atrial fibrillation on a regular basis but at least now I’m on anti- coagulant drugs to assist. However, they say it’s the second stroke that kills you 🙂 What price the patient centred approach to care? Well, I’m sure all the pathway boxes are scrupulously ticked.