joining the dots....

Yesterday was a trip to the hospital.  Despite my compromised immune system (and that of other patients on similar medication) we had to share the waiting room with a little boy with chicken pox.  The potential for that to go pear shaped doesn't really bear thinking about.  Shingles in my situation could be fatal.  I did mention it to one of the nurses who got me out of the waiting room (I had my scarf wrapped around my face at this point, looking like a Ninja).  But the thing was it wasn't only me who could have been affected.  Plenty of others were there too.  The nurse who got me out of the waiting room said she thought it was wrong but she 'wasn't allowed to comment or do anything.'

Anyway, my eyes are going bad again.  I feel like I've been punched in the stomach.  I mentioned it to my husband briefly, but I don't want to dwell on it with him because I can see it's tearing him apart.  I just tell him I can live with it (not exactly a lot of choice there) and live with it I will.

The real fun and games though, began at the hospital pharmacy.  My medication was changed, so I had to pick up a new, two week prescription.  Simple, you might thing.  No. 

The thing is, that the medication I am on is hideously expensive.  So although I was prescribed 112 tablets, they only come in boxes of 100.  And they will not prescribe two boxes because that would be too much and too expensive.  Nor can they split a box to give me the correct amount.  So they sell me short but don't tell me.  As it happens, I have some tablets I can use from my last GP prescription.  But I can't stockpile these because:
(a) Once the GP knows I have had a hospital prescription, they will stop my tablets for as long as they think the hospital prescription will last (which means it will be short)
(b) once I don't pick up my tablets as usual from my local pharmacy they will stop ordering them.  This means that the next time I go to pick up my prescription, they may be out of stock - and their suppliers will also be out of stock.  Which means I can't have them.

And all the hospital pharmacy needed to do was split the bloody box!!! 
I did ask them why they hadn't.... 'We aren't allowed to.'

So what I would really like to know is, where are these invisible NHS tyrants who force all and sundry to through common sense and joined up thinking out of the window? 

Because I would very much like to get my hands on them.

How naive I was....

A couple of days ago I posted about the difficulties of getting a prescription for some new medication I am supposed to take to prevent me going blind.  I somehow thought, once I had the prescription, that my problems would be over.  In fact, they are just starting.

I waited a few days, then rang the pharmacy to check the tablets were in stock.  'Erm...some of them,' they said.
'How many?'
'Thirty six.'  Okay, I thought, that's 18 days supply.  I can wait and then someone can pick up the whole prescription when the rest come in. 
'When are the rest due?'
'We don't know.  The suppliers are out of stock.  They can't get them.'
I took a deep breath.  Counted to ten.  'So what happens now.'
'Well, you've got enough to be going on with...'
True.  But I don't want to take tablets knowing I am going to run out entirely.  That opens a whole can of worms and a lot of other problems. 
'Well what can be done to solve this problem?' I asked, trying to be helpful. 
'We could order a few months supply next time, if you're going to be on them a while, only we don't like to do that...'
'Whyever not?'
'Because they're expensive.'

And this is the crux, ladies and gentlemen.  Expense.  Never mind that eyesight is one of the most precious things we can have.  Never mind that the doctor is happy to prescribe it.  The pharmacy (the pharmacy!!!) are not happy about ordering it in.  Because it's expensive.

So now, on top of worrying about the government's welfare cuts, even the local pharmacy is deciding that those who are ill are somehow 'unworthy'.

Can't they see?  The only reason they are there, in our little high street, is because people who are sick/ill/disabled need to have their prescriptions filled.  Otherwise we'd all go to Superdrug instead. 

If they start making judgements like this, then some of the first people to lose their jobs look likely to be the bloody pharmacists!

Got my tablets...

When you're long term sick, the last thing you feel like doing is arguing over your tablets.  But I knew I was in for some aggro... having a rare disease means that little is actually licensed for treating it.  You have to cross-over and use drugs intended for some other condition.  Normally, that isn't a problem.  For years now, for example, drugs developed for epilepsy have been used to treat depression.    However, if the drug you are prescribed is expensive, it becomes a different game. 

Nobody wants to foot the bill.  Yes, it may help you get better - or in my case prevent me getting worse - but it's the cost, you see.  The immediate costs. The cost to me as a patient going blind, or the costs to a society where I can no longer function properly aren't even considered.  Besides, according to the media I have become just another statistic: a drain on the public purse, a scrounger.... it's too depressing to list.

I was fully expecting some aggravation with these tablets - known to be scarce, known to be expensive - the moment my consultant mentioned them.  But I rang the surgery last week and was told to phone back yesterday.  Which I did.   They said they would check it out and phone me back. 

Yes, I thought, cynically.  I can just see that happening.

And I was very pleasantly surprised.  Because a few hours later I had a phone call from one of the doctors (the doctors!!!!! ) telling me everything was sorted and the prescription written.

I could have kissed him, I really could.  Having psyched myself up with all sorts of arguments it was lovely to be proved wrong, to have things running like clockwork!