Jane Pike 💜💙

❤ BFC. 💚 gardening. #MECFS #chronicpain #hiddenillness
Former political geek. Bit opinionated but *trying* to be kind ❤ 🚫 NO ONLY FANS ACCOUNTS - INSTABLOCK!

[Jane Pike 💜💙 @Janebfc]

I've just signed up to be part of the largest ever study into #ME if you have #MECFS & haven't yet registered now is the time! #myalgicencephalomyelitis #decodeme https://t.co/0kNwyxoJHu

[Jane Pike 💜💙 @Janebfc]

@forwardnotback I've already questioned the levothyroxine being monthly more than once & been stonewalled by receptionists. The practice has an in-house pharmacy adviser, they might be my best bet to ask for a discussion with.

[Jane Pike 💜💙 @Janebfc]

@forwardnotback Thanks Tim. It would make my life that bit easier if they will. And armed with the knowledge that I'm not asking for something that is beyond the realms of possibility- because I now know others get it - it will give me more confidence to ask.

[Will Hayward @WillHayCardiff]

You genuinely couldn’t make this up.

Reform UK called a press conference at the Welsh Parliament claiming that they were boycotting the Senedd because their “free speech” was being impinged on.

Joe Martin then said “how dare you ask that” to a journalist who asked a question he didn’t like then when I asked a question they walked off.

Quite an ending to a press conference about free speech…

[Jane Pike 💜💙 @Janebfc]

@grace_hawthorn @claire88424030 Exactly.

[Jane Pike 💜💙 @Janebfc]

@DrNWLuna @claire88424030 But if they were raped by someone buggering them they'd soon have a different f*cking opinion....

[Jane Pike 💜💙 @Janebfc]

@forwardnotback ..so I have to request that monthly & that I get. But it just gets ridiculous. Thanks for directing me to read the replies. I'm clearly on a bad deal. I'll add this to my list of battles to have with the docs.

[Jane Pike 💜💙 @Janebfc]

@forwardnotback I'm on about 15 plus about 3 or 4 as and when needed drugs. I'm on levothyroxine for underactive thyroid so that's a must to take continually, and they won't even issue it in the repeat dispensing batches, I have to request it each month. I'm also on a controlled drug (ctd)

[Jane Pike 💜💙 @Janebfc]

@forwardnotback My pharmacist gets 6 lots of prescriptions each for a months supply of a number of the items I take. The chemists then hold them to issue monthly. It's the nearest the GPs will get to issuing more than a month at a time. Convoluted you might say.

[Jane Pike 💜💙 @Janebfc]

@forwardnotback Yes, I get that. I'd asked because I have the dr prescribe, then pharmacist holds & issues 1 month at a time. You getting 2 months at a time is highly unusual as far as I know. The norm is 28 days supply at a time. If, like us, you're on lots of meds 2 months makes more sense.

[Jane Pike 💜💙 @Janebfc]

@forwardnotback And let's not get started on supply problems & the meds I'm on that aren't always available. Or the things they refuse to put on the repeat dispensing batches because they need monitoring or are meds to take when needed...🤦‍♀️ but you're right, your set up should be the standard.

[Jane Pike 💜💙 @Janebfc]

@forwardnotback The chemist then holds them & dispenses one month at a time. That's why I asked to just clarify. Not all my items are on repeat dispensing though & I seem to waste half my carer visits with chemist trips/chasing up doctors for things they haven't issued etc.

[Jane Pike 💜💙 @Janebfc]

The system is frustrating. And it also takes a nurse out of practice to sit wading through all the requests for hours triaging them which makes no sense whatsoever. If you want to discuss more than 1 thing you need to be assertive, clear & concise when filling the form out!

[Jane Pike 💜💙 @Janebfc]

Just had a Dr's appointment-was in about 20mins as I had asked to see them about 3 different things. There's no chest crackling so I'm going to stay on the new spiriva alongside the fostair for now to monitor it over a longer period. Esp as I was only on antibiotics last week. (1

[Jane Pike 💜💙 @Janebfc]

It would be so much easier. And yes the form says to put in when you're not available..but when you don't know what week even they're talking about it's tricky....and it can be several days before they contact you with an appointment so things can have changed in the interim! (8