• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Help getting Ebixa

West

Registered User
Feb 15, 2006
5
Leicester
I am hoping that someone might be able to hep me with a problem I am experiencing. My mother who is in her 60s was recently taken off Aricept by her doctor. The explanation is that the drug is not as effective as it was but since she has come off it off it I have noticed a fast deterioration in her condition and as a result I am now looking at the option of Ebixa for her. I know this does not work for everyone but I am keen to try it as it has improved the quality of life for some people. The problem I am facing is actually getting a private prescription as this is not available on the NHS where she lives. Her psychiatrist and GP are not willing to offer us a private prescription although we are willing to pay for it. Their explanation is that they do not offer private prescriptions and only deal with the NHS. I know this can be purchased in Boots with private prescription or on the net so do not understand the problem. I would welcome any ideas on how I can resolved this.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hello West, sorry I cannot help you with your search for private prescription, but wanted to welcome you to TP.

I am sure someone out there will have some suggestions soon. Keep posting, Connie
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi West,

There has to be some way to do this as the results of a questionaire by the Alzheimer's Society showed that 46% percent of those taking Ebixa had it via private prescription.

http://www.alzheimers.org.uk/News_and_campaigns/Campaigning/PDF/NICE2004/Appendix 4 Results of questionnaire survey.pdf

Perhaps you would need to see a private consultant psychiatrist to obtain the prescription, but that could cause conflicts with the NHS consultant who is already treating her???

It might be worth ringing the national Alzheimer's Society helpline on 0845 300 0336 for some more ideas.

Take care,

Sandy
 

Margarita

Registered User
Feb 17, 2006
10,824
london
My mother is on Ebixa for the last 2 years mum has Alzhimers & she get Ebixa on the NSH she does not have to pay for it .

My mother was diagnosed with AD at the age of 73 in Gibraltar when she retried out there,& they gave it to hear ,I was worried when I brought her back that they would make her pay for it as it’s a new drug ,it’s a really good drug it took a while 2 kick in .I live in London and I can not believe that you have to pay for it .what part of England are you in ?
 
Last edited:

Margarita

Registered User
Feb 17, 2006
10,824
london
So what you are saying that it’s the doctor that does not want to give it to your mother ?

A consultant gave my mother the Ebixa on the NHS.

Have you seen a NHS consultant ?

I do not know the law on the right of demanding /asking what medication we think is best for our self’s or are relatives ,but if I was you I would find out ,does anyone out there no?
 

carol

Registered User
Jun 24, 2004
196
Surrey/Hampshire
Hello West,

My mother in law was diagnosed with alzheimers 8 years ago. Possibly 3 or 4 years ago she had aricept on a private prescription because the nhs would not fund it, then she was funded on the nhs and more recently 6 months ago she was put on Ebixa, I am sure it was only because my husband was at the appointment and asked lots of questions, my 86 yr old father in law just accepts all that is said and can't wait to get out of the appointment. Mother in law is on full dose of aricept and full dose of ebixa, both funded by the nhs. She has another appointment with the consultant in April, and have no idea whether she will still be kept on this medication. I am not sure how much it helps, but the alternative is probably worse. Her short term memory has virtually gone, her sentences now are not making sense and she is doubley incontinent, she has carers coming in three times a day to deal with personal issues, ie. bathing and toiletting, pad changing, she does not remember that carers come in, she just goes with them into the bathroom they are a friendly bunch, so there is a lot of laughter, she also goes to a day centre 3 days a week, and does not recall going there.

We have just done a weeks respite, which went really well, but once again she has no recollection of it, even when we were driving away she didn't realise she had been there for a week.

Best wishes.

Carol
 

West

Registered User
Feb 15, 2006
5
Leicester
Thanks for your message. I realise this will not be an easy situation to resolve. Even trying the private route is very difficult. I think the chances of getting this drug depends on where you live in the country and been fortunate enough to find a doctor who can help. It seems that some people are able to get this without to much difficulty but unfortunately I seem to have major problems. I cant be the only one.
 

wendy43uk

Registered User
Dec 22, 2005
64
sheffield
west

hi i was told by the the hosptal that at the momeant people can have ebixa even though it will be stopped soon to new people hope this helps