[Clare.T]

I called St Thomas' yet again about renewing my Mepacrine prescription and actually got through to my consultant's secretary in person. Wonders never cease.
I hadn't realised how distressed I was at having run out for two months now and getting no response to my written and phone requests for a replacement for the prescription that got lost in post early December, and I nearly burst into tears when a human being answered. So she will organise it today & call me when it's ready to be picked up from the hospital pharmacy within a couple of days.
Good !
Clare

 

[sushi]

Clare i am so happy for you!

i cant believe it took that long to get a replacement.

:highfive:

 

[Clare.T]

Thanks sushi

I think the moral is to make a perfect pest of yourself in situations like this.
I have been too reluctant to do this because I am so aware of my needs being relatively insignificant when there are so many very ill people these top doctors have to deal with. So I have learnt my own lesson the hard way.

I also have learnt that I really really need this med which is a useful realisation.

I hope you're doing well sushi


Cheers
Clare

 

[Katharine]

Hi Clare,

I'm glad to hear that you finally got through to someone. It was obviously time you did.

I hope you start to feel a lot better again now,

all the best,
Katharine

 

[Sage Hen]

Hi Clare,

I was relieved to hear, that you finally recieved your much needed medication.

Sometimes, we think we are not letting something bother us, and then it all well's up inside us, and overflows..It can be quite shocking for us, sometimes.

You are as important as anyone else..and, I for one, am so glad, that you persisted.

I know, when we are feeling so poorly, it can take everything, to motivate ourselves to get to that point.

Sandy

 

[karen.w.]

Hi clare

That's good news,I hope you receive it quickly!

I'm shocked you still hadn't received it,I remember you mentioned it a while back :sad:
will it take some time for it to get back into your system?I hope not!

hope you feel better soon clare :hug:
take care..karen x

 

[Joandublin]

Clare! :highfive:

Im so glad you finally spoke to someone who sorted this out for you. Having dealt with machines for the last five weeks about my broken phone line, getting to speak to an actual real person was enough to bring tears to my eyes :worried: I can surely empathise with you:hugbetter:

Its something that I have a big bug-bear about. Push button options on telephones with smarmy sounding voices are enough to send me into a fit of instant rage. Why is it that the option I want is ALWAYS number 9?

Bring back humans on telephones! I can feel a campaign coming on....

Cheers
Joan:rose:

 

[cispence98]

I am sending you good wishes for a quick return of your RX:goodvibes:
I know what a pain it is to talk to these stupid automated systems now you have to wait for them to explain things in spanish before they even give you the prompts of what number to press that you need. Its such a hassle it use to be you could just press 0 and avoid the recorded prompts now they will reply INVALID ENTRY, invalid my behind!!
Isn't it funny how just the fact that you talked to a human on a phone is reason for celebration, pretty soon we will be going to robots for doctors!!

 

[macfamily53]

Oh my goodness Clare i am so sorry you have had to go through so much more stress then ever recently.I can only imagine how you must be feeling with the stress of lupus already then this (hugs)).I am just so glad it did pay in the end.You got it right that we need to keep on the medical staff when we need something so important.I sure hope you start feeling much better real soon(((hugs))).

Tammy

 

[Lily]

Hi Clare :woohoo:

Unbelievable 2 months You should not feel that you are any less important than anyone else they deal with They are after all providing a service to you and it's such a simple request that takes 5 seconds to carry out. So remember that if it happens again ( hopefully that will not be the case though!!!).

I hate those phone machines with a vengeance, it's such a shock when someone does actually answer that I am speechless momentarily :lol:

love
Lily

 

[keebler]

Hi Clare,

It took two months to get your med?

I am glad you finally got to talk to a human. I hate voice mail boxes. I seem to turn into a person who can't put two words together when I get the machine.hno:

Everybody's needs are equally as important. Please don't feel that way again.

Hope you get your energy back fast.

Love,
Lyn

 

[raggedyann1]

Clare,

I am so glad you are getting this taken care of. Yes being a pest is sometimes necessary. I have also learned that tears seem to get things done as well.

Karen

 

[bugsy]

Hi Clare :wavey:

At last - i can't believe that its taken so long to get a replacement prescription, thats disgusting. Its also awful that its taken so long to actually get to speak to a real person, i wonder what happened to the letters you have writen to them requesting this prescription.

As for the part where you say:

I am so aware of my needs being relatively insignificant when there are so many very ill people

thats a load of rubbish Clare, your needs are as important as anyone's needs. This med that you need is helping keep your lupus at bay, so its a very important need. Don't think that you are any less important.

I hope that you get the meds quickly and that you start to feel the benefits of taking it again after a 2 month break.

If i was you i would start to bug them now regarding your next prescription, then you may get it just in time for when these meds run out.............

Take good care of yourself :hug: Jo :hug:

 

[Clare.T]

Hi Jo and All

Well I confess I was a complete fool about it especially considering how much time I spend exhorting others to be proactive! :hehe: I really can't explain except that I got in a great glum about it, all mixed up with a whole lot of other difficulties. I just haven't been myself for a few months now.

I too wonder what happened to the letters and phone calls. This morning I realise I gave her our landline number, forgetting it has been out of order this past week so I'll have to call today with my mobile number. There goes this year's award for efficiency ! :rotfl:
I hope you're doing Ok Jo - it's always good to see you posting

Hugs to All

Clare

 

[LolaLola]

Dear Clare,
To be quite frank I was feeling like packing some of my Mepacrine off to you,however irresponsible the Docs. would view me as!

I may be preaching to the converted here, but why not ring the switchboard and ask for Scott Landers, he is the Manager in charge and he needs to know the truble you have had. As you know,I feel that we do not have a satisfactory point of contact so I always phone and tell him of any difficulties.

He is a nice person.

Glad you have sorted it.
Love Lola x

 

[Clare.T]

Thanks for that name LoLa ! Do you really think there are grounds for calling him ? Making a fuss at this level ? I don't really want to get anybody into trouble or get on the wrong side of anybody, although this does amount to pretty amazing failure to respond to a simple enough need. I had to call the consultant's secretary yesterday morning because I had clean forgotten that our land line was out of order. She said she hadn't been able to see the doctor the afternoon before but she would try again that morning. I dont know, I just didn't feel much confidence in her mumbling although she was civil enough. Anyway I still haven't heard anything, 13.40 Friday.
It's really sweet of you to think of sending me some I must say it has crossed my mind to ask my NYC doc for a prescription that the compounding US pharmacy would send me.
It is after all almost three months since the prescription I never got so I'd need a new one anyway at this point. If only I had got any sort of apology or good reason.

Cheers
Clare

 

[karen.w.]

Hi again clare

I advise you to ring scott landers who lola recommended & I would ask for your prescription to be faxed immediately to a local pharmacy.

I think enough is enough clare,from the sounds of it you could be waiting another week! you have been very patient & fair enough mistakes happen but you really shouldn't still be waiting now especially after ringing & explaining your predicament a couple of days ago :sad:

clare when I ran out of immuran I rang my locum doctor & he faxed a prescription to my nearest pharmacy within in an hour!


good luck to you clare I hope you get it sorted very soon!
I will wait in anticipation for the instalment of your medication saga!!

hugs to you :hug: karen x

 

[LolaLola]

Dear Clalre, Scott Landers would not view you as causing trouble. He is a nice enough person and does try his best. I always flag it up when the communication fails because I still think it needs improving. I can't tell you to contact him, but frankly I do feel it needs more of us to make a fuss over the lack of contact. Hang it all, the appointments are far apart, we need some reliable access. Much as I appreciate them I will not stop bugging them!
x Lola

PS You will be pleased to know Immi is coping a bit better, still quite unwell but the people here have been kind and it helps a lot.

 

[Clare.T]

Sorry for the belated update. Thank you all for your encouragement and the useful information.
I gave the secretary one more try asking her to make sure that Dr D Cruz understood the situation, that it was not a simple repeat prescription request but that I had now been out of the meds for two months and for whatever reason, my previous attempts to replace the lost last lot had got no response. I told her that my condition was deteriorating and I was getting distressed.

I never got any explanation for why that was so, but she did act effectively and the prescription was ready the very next day and she was apologetic.

I expressed appreciation and thanks of course - they have always been very responsive up until now.
I am feeling very much better in very way after two weeks back on the Mepacrine and I am sure it isn't purely psychological. I depend on this stuff.

Karen I can only get this med through the hospital pharmacy. Because it isn't licensed my GP wont prescribe it. If he did the only place you can get it is Boots which make the chemical up into pills. They were thinking of discontinuing the service because it is so seldom used outside vet practice but luckily they responded to pressure to continue.

Take care all
Clare

 

[greenhaggis]

I'm glad you managed to get your prescription sorted and are feeling better!

Just a thought, my Immunologist (he not that reliable though) told me that if he prescribes a medication that the GP is then obliged to deal with the repeats regardless of cost or license because that is what you need for your health. Perhaps you could check with your local PCT on this issue. If your GP has to prescribe I know my local chemist will keep some special meds available as long as I let him know I willl be a long term user. My chemist also special orders meds for me when they are not run of the mill ones!

Take care!

Love Lesley