Two hospital day has arrived. That's two different appointments, with two different specialities, in two different hospitals only two hours apart. The 'what can possibly go wrong' possibilities for this scenario are endless. Fortunately I left my 'new doctor' anxieties behind on tuesday, having met both of these doctors previously I know all I really have to worry about are the practicalities. My rheumatologist is a lovely, gentle man who even if he did think it was 'all in your head' is more the type to sit and hold a patient's hand while they cry rather than being unpleasant to them. My respiratory doctor is not the hand holding type but medically rather good and possessed of sufficient communication skills to be relatively easy to talk to. So, you'd expect it all to be fine, but I've finally reached the understanding that three decades of being labelled a crazed, attention seeking malingerer has probably left permanent scars on my psyche. Unlike physical scars a bit of rubbing vitamin E oil in won't help much, so like other patients in this situation, its for us to develop the coping skills and learn not to project that anxiety onto the doctor. Some days I am better at this than others...meeting Dr Heartsink not being one of those days!
So, really its the practicalities causing me to stress. Since October I've barely ventured out of my pyjamas, and on the rare occasions I have there has been someone with me all the time so all I had to do was sit in the wheelchair and be pushed. That doesn't sound too energetic but has still completely wiped me out, so the prospect of today is daunting.
I have to drive myself to hospital 1 and park in time for my appointment. Then, unload the BendyBus (mobility scooter) using the power hoist. This involves standing for about two minutes, a bit of fiddling to detatch the power hoist attachmenty things then putting the hoist away. It really doesn't sound like much, but it is quite the challenge for a bendy, exhausted body. Then there's the getting into the hospital over the usual pavement bumps which each have the potential to dislocate multiple joints. The sitting in the uncomfortable scooter or chair while waiting, the getting up to see the doctor, sitting down, being examined, getting back up again, leaving, hopefully on time to load the BendyBus back into the BendyVan before driving to hospital 2 and repeating the whole process. This also unfortunately coincides with the time of day that my body usually demands to be horizontal, drugged and unconscious for a minimum two hours so that could also be interesting!
I had asked a friend if they could take me, but the appointments time clash with family duties and unsurprisingly my big society network all tend to do that activity we call 'paid work' during which bosses usually frown upon people taking a half day to perform their big society volunteering roles. It's not like a 10 minute lift to drop me off at the hospital, it's a big ask. Hours spent sitting in waiting rooms, pushing a wheelchair around, loading and unloading a wheelchair etc. So, its down to me. Fortunately Disability Living Allowance means that I have a mobility vehicle equipped to take a scooter so I can take myself and pay the price afterwards. When Personal Independence Payment is introduced, like many currently entitled to high rate mobility allowance and therefore the motability scheme I may well not qualify for the enhanced rates of PIP and so lose my car.
If that does happen, like everyone else in this situation I will have no choice but to use patient transport for appointments. I won't be able to pay for taxis as that would have come from DLA money. So, each time I have an appointment I'll have to contact my GP to arrange patient transport. Patient transport is an ambulance 'bus' that goes all over the place collecting people and delivering them to hospital. Patient transport does not really pay attention to appointment times, so if you have an 11am appointment at a hospital 10 minutes travel time from home its very likely patient transport will turn up to collect you at 7am. And then shout at you for not being ready. Not that I have ever had that specific experience or anything.
All those old people you see abandoned for hours in outpatient clinics, looking woebegone and neglected? They're waiting for patient transport. In the past I've given water to such patients who've been left ignored for hours on hot days waiting for transport services. It's impractical, designed to fit around people who are old or have nothing else to do but be 'sick' and very definitely won't allow for only taking a half day off work to attend an appointment for those without transport who are trying to remain in work. It's also not any cheaper than leaving people with DLA and mobility vehicles, which are a significant part of new car sales in the UK. Something the Chancellor clearly hasn't heard about...if half a million people lose their DLA, and only 250,000 drop out of the motability scheme...well, that's quarter of a million new car sales not happening with subsequent consequences for the economy. I have in the past tried to ask senior car industry people what impact this might have...they scratch their heads, tell me I'm wrong and then go away with that pinched, stressed look currently sported by most of the Cabinet which translates to 'dammit, she is right and we haven't considered that'.
So...two appointments. If I'm lucky the batteries on the scooter won't pack in leaving me stranded...but at least if they do I'll be in a hospital where there are people around. Hopefully someone will see sense at hospital one and send the notes with me to hospital two otherwise I fear the NHS will simply be tipping the cost of a consultant's appointment down the drain through its stubborn insistence that I must not go anywhere near my notes. Finger's crossed for some common sense!
Update 1100: Common sense has prevailed! A very lovely, very sensible admin lady phoned and has rearranged my rheumatology appointment for later this month. And promised to ensure my notes make it to the right appointment this afternoon, thanks lovely admin lady!