More NHS quirks...
I received my NHS appointment to see Mr Ayliffe last week - it 'only' took about 10 weeks from referral to date of appointment. The scheduled appointment was for next Monday, but I had to keep my private appointment this morning as that was the follow-up - besides, I don't have any more tablets. The eyes aren't great - cataract, chronic flare, no cells in left eye; no flare but some cells in right - so I get to treat both eyes to Maxidex for a while, increase the MTX dose to 17.5 and Mr Ayliffe is also considering adding cyclosporine.
At this point I mentioned my NHS appointment and the date. As it turns out, Mr Ayliffe isn't even there that day - he wasn't particularly happy as apparently new patients to his clinic should be booked in to see him first... As his secretary didn't answer the phone when he tried to ring her (this seems to be a common problem - she's from the typists pool!) he asked me to phone and get the appointment moved back by a week - even though that would mean overbooking. So I duly rang the appointments number when I got home - when they finally answered they weren't able to rebook, but put me through to his secretary - and this is when it got annoying.
The secretary had only just answered the phone when her mobile rang - she took the call, and proceeded to talk for about 15 minutes!!! I wasn't going to hang up, after all she'd answered the phone and I'd been warned about that... but I was not a very happy camper by the time she did get back to me. I forgot to ask for her name though which was unfortunate - I will be watching my mail for my letter, otherwise I will be back on the phone to her!!! It was also weird how she struggled with my hospital number and said she couldn't make the appointment - but could tell me that my previous appointment had been cancelled (about 20 mins earlier... before I was transferred through to her!!)
Quite frustrating, as always, but once I manage to get through the paperwork the care will be worth it. Fortunately I don't have to deal with the NHS every day!
Anke,
I went cold reading that. I hope your letter does come through and you're spared a follow up call.
Also sorry that your eyes are not doing so well. Are you tolerating the methotrexate any better?
Hoping things are going to change for you soon as the IMT starts to be effective. I started off the same as you and was told it could take up to three months for each of those drugs to have an impact.
At my last appointment, the eye clinic was in chaos and I was told I didn't appear on the field of vision test list. I said nothing, just sat down and waited. When I reached the Prof he explained the chaos was caused by a change in their IT systems. Wonder if this is a nationwide change? Best of luck with your next appointment.
So sorry to hear of your frustration. You just have to take a deep breath and fight through the NHS bureuacracy. You know that you will be getting the best treatment when you get to see the main man. It must be yet another of those ludicrous NHS cutbacks. Mr A definately needs a decent secretary! I must say I recently had a fairly unhelpful encounter with the typing pool girl, but I persisted and got her to do what I wanted her to do in the end. It was a case of my doctor not wanting to prescribe the drugs (expense) but neither did the hospital. I needed Mr A to speak to my doctor to convince him of the wisdom and necessity of my treatment. Of course when he did speak to my doctor, Mr A managed to sort it out.
Re: More NHS quirks...
Thanks Maxine and Annie - the good news is that she actually phoned me back this morning to give me an appointment time so I feel calmer about it now. I'd still really like the letter though... but I'll be patient.
Now I just need to figure out how to get there for 8:45 - it's early, but a sign of Mr A's commitment to all of us - at one of my recent eye casualty experiences at the local hospital, the dr only arrived at 9:30... patients get booked in from 8:30 and should really be seen from 9am!
Re: More NHS quirks...
Forgot to add... Maxine, yes I'm more friendly with the methotrexate now. It took about 5 weeks and I'm still tired for a day or so after taking it, but it is much better thanks. Week 4 had a rather emotional wobble but that's also getting better. Hopefully the one extra tablet isn't going to be too noticable...!
Re: More NHS quirks...
Where do you live? I get the tram from Wimbledon and then the bus. Very quick Journey less than 45 mins door to door. Trains go to east Crowydon from Victoria/Clapham Junction I think then bus to hospital. Mr A is there from 8.45 but he slots in the extras (ie overbookings) by getting them come in early. You may be surprised at how quickly you are seen but be prepared for a wait, you never can tell. I always take a flask of coffee and something to eat!
Re: More NHS quirks...
My mistake West Croydon is the better station. Just checked, I always forget. See the hospital web site for bus details, but basically I think you can catch most buses from virtually opposite the station.
Re: More NHS quirks...
Annie and Anke,
We all seem to have similar experiences in eye clinics. Without a permanent, efficient secreatary, Mr A's life must be hell.
Glad your appointment has been booked, Anke, and the methotrexate is less troublesome.
Annie, the rheumatology nurses told me that GP practices will soon have to nominate one of their number to become the rheumatology expert and take on the job of monitoring the blood work etc that IMT patients require. Possibly it'll clarify who pays for the drugs as well. When my GP was asked to oversee the blood tests locally, his first question was, 'Who's paying?'
Have the cut backs in your area also affected the eye drops you are prescribed? The Prof always used to prescribe 2 10ml bottles of maxidex, but about six months ago, he only prescibed one and said this was all he was now allowed to prescribe.
We have a hard time of it, but I think those looking after us do as well.
My monitoring was a big issue for my doctor in relation to the drug prescribing. However it seems to have sorted itself out and I now get it done at a local kidney unit, although my GP told me that if he was prescriibng he should have the responsibility. I don't have eye drops so that is not an issue for me, but I only get the prescription for the immunosupressants a month at a time and I am told that that is due to drug cost. I was horrified when my pharmacist told me what a months supply actually cost so it is not surprising that it is an issue. Annie.
My GP was happy to prescribe and monitor methotrexate until it went over 12.5 mg. After that, I had to travel 30 miles for blood tests. Once I couldn't see the doors of trains and was taking taxis to appointments, they agreed to do the monitoring again.
I was thinking of moving to cut down the costs of transport and I've been urged to stay put because my NHS Trust is funding the latest, very expensive treatment.
Re: More NHS quirks...
Annie - thank you for the info! I'll be travelling from Richmond so will be on the train via Clapham - I'll be sure to check their website too though, I hadn't got that far. I actually received my letter for the appointment today too which was welcome news!
Maxine - I think you're right, we're definitely not the only ones struggling with 'the system' - I got the impression from Mr A that he'd almost rather schedule his own patients as he knows when he can fit things in, than have scenarios where 'wrong' things are scheduled and it then takes more effort to correct things.
The pharmacy gave me too few tablets for my first prescription, so I had to ask my GP to prescribe 5 MTX tablets. Her first question - who is doing the blood tests... It caused some confusion at the pharmacy too until I explained the situation!!
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