here we go again

[wendyb]

Hello there

i havent posted for a long time now. i used to be signed on as betty, but forgot my sign on, got a new job, and a billion others things so i have just re registered. been reading through some posts and its nice to hear/see familiar voices and a huge amount of new people!

the past year has been good to us,my dad is maintaining his health and indepenedce remarkably well, apart from a constant obsession to tidy and clear things out and buy new things that dont need buying!

he still swims each week, goes walking with his friend and spends loads of time in the garden doing and redoing things. I think he is quite surpirsed and inspired by the fact he isnt dead yet, whcih was his intial reaction when he was first diagnosed. so he has a really positive attitude.

however, in reality he is starting to deteriorate in some areas, he shuffles a lot more and forgets immediate conversations more. the last mentall state test showed a 5 point drop last time and so i am now starting to consider the next stages.

at the last consultancy we asked about ebixa ( to start conversation early this time)and as you'd expect the answer was a no, authority cant afford it . so we offered to pay , but he still said no beacuse then everyone will want it and then we'll end up paying for it. of course i have started a whole complaint procedure aginsts this , because i think its important not just for us but for others, to keep the pressure on. however in the meantime i need to find a consultant doctor who will monitor my dad and prescribe the drug when the time is correct. my dad is worried that i am going to fall out with the current consulatant, so deosnt want to push it too much, so i think the answer is a private doctor, but then do we switch entirely or what?

has anyone got any experince of this scenario, anyone got any advice. i have spoken to AS national who have helped with some NHS act stuff and a private doctor list but wonderd if you guys coukld help.

could you let me know if any of your family/spouse is taking ebixa/ what was the criteria for prescribing/did you have troubling gettting it/any tricks to fightin the system.

thanks a lot

hope you are all well.


wendy

 

[alaneg]

Re Ebixa

Hello Wendy
I am caring for my Dad (see "What can I expect next" thread) and he has been on Ebixa for about two years. I asked my fathers GP if he could advise where it could be obtained from and I was given the name of a consultant who we see every 6 months at the local BUPA hospital although neither I nor my father are in BUPA.
When he was first prescribed the drug we noticed no change in Dad's condition but a few months ago my Father went through a difficult stage and for about a week he refused to take it and during that time we noticed a marked decline in his mental state so perhaps it was having the effect of halting the decline. We did manage to persuade him to go back on the drug.
We have had no problems with the NHS consultant he sees at the memory clinic where he still gets Arecept on the NHS. Incidentally if you do get a private perscription for Ebixa shop around the various chemists as the prices they charge can vary considerably. I have found the Tesco pharmacy to be the cheapest , current price £82.75 for 4 weeks supply of 2 x 10mg per day.
Hope this helps
Best wishes
Alan

 

[wendyb]

ebixa

thanks very much, thats really helpful. does the consultant at the memory clinic monitor the ebixa as well as aricept as part of the care package or the bupa consultant. i guess what i'm asking is do you end up with conflicting consultancys?

thanks

wendy

 

[Jude]

Dear Wendy and Alaneg,

My father takes Aricept and my mother has been on Ebixa for just over a year now. She was unable to take Aricept as it made her extremely ill.

Our Consultant Psychiatrist prescribed Ebixa for my mother as a trial [one of two people in this area only] but she has remained on this drug ever since. It has made a considerable difference to her language problems and basic daily skills.

We have never been asked to pay for the prescriptions at any time, so it seems incredibly unfair for you to be faced with having to pay for this. Perhaps a word with another CP may help.

Jude