Donepezill sent in post no consultant or notification

Discussion in 'I care for a person with dementia' started by tatty, Dec 1, 2015.

  1. tatty

    tatty Registered User

    Oct 14, 2015
    MIl had a CT scan on 17/10 being chasing all and sundry for the results so has SW who wnated formal diagnosis as working diagnosis of AD and possibly some vascular only thus far.

    Memory clinic nurse confirmd in a letter after visit whenMIL agreed to scan back in June stating that after scan she would visit to discuss results and use of cognitive enhancing medication.

    MIL(she lives with us) is at SIL for her birthday 91 last week and has visited the doc there due to an infected cut on her leg, . We received an email from Memory C nurrse today saying sorry for the delay in replying but she was aware MIl has started medication and that she heard she had moved to Suffolk (SIL live there)!

    No medication not moved visiting ; can only assume that GP here have told Memory nurse this as SIL GPs had contacted then re: infected leg

    However tonight text from SIL that found new box of Donepezil on MIL table where have they come form??? After investigation and deduction one of the packets which we forwarded a couple of days ago with birthday cards for MIL was NOT a present but said pills, no letter canbe found accompanying them, though MIl is a squirreller no hospital franking or printed address label hence us thinking it a present addressed to MIL so not opened by us.

    I am furious , no visit from nurse , tablets sent via post to a person with dementia with no consultation explanation or discussion of side effects etc. SW and nurse think MIL has capacity so why are these tablets just sent with no consent to take them by MIL?The NHS at its worse -with potential dangerous consequences.

    A few phone calls will be made tomorrow, they won't like what I have to say.:mad:

    Could anyone elightened me on the pluses minuses of Donezepil as it is obviously too much to ask of a health professional to do? so.:confused:
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I'd be very surprised if they sent it in the post let alone without a letter or some instructions at the very least, I've never known that happen for any medicine ever.
    Below is a link to the AZ society fact sheet on Donepezil which explains a lot about it. In short it can help slow down the progress of the disease and there is no claim for an improvement although some people do seem to see one and from the factsheet "Between 40 and 70 per cent of people with Alzheimer's disease benefit from taking a cholinesterase inhibitor" so under half at worse to nearly three quarters at best. Is it any good, who knows but it's pretty much all there is available.
  3. tatty

    tatty Registered User

    Oct 14, 2015
    Thanks Kevini will have a look ,

    unless SIL discovers a letter that seems to be exactly what they've done weirdly from a hospital not in our area but in the same county and one where noone in the family has ever visited let alone been referred to, it's really odd. Even if a letter is found , not the way to administer a drug for the first time , no discussion, explanation or consent.
  4. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Has you MIL had an ECG? My mum has had her CT scan and consultation with the specialist who is looking to start her on donepezil, but she has had to have an ECG first. The same thing happened with my dad in 2006, but his ECG revealed atrial fibrulation (irregular heartbeat) and the GP wouldn't prescribe it.

    I would speak to the GP.
  5. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    #5 Morganlefay, Dec 2, 2015
    Last edited: Dec 2, 2015

    oh dear, poor you, I have such sympathy. We had v similar experience. I told the nurse we were going away and would be in France for hols. She asked my OH if he would like to see Consultant or would he be happy to get diagnosis by letter. And if the diagnosis was that he has a dementia would he take pills for it. He said 'yes' but no more explanation of the pills was given. (I worked in the Pharma industry and knew what Aricept is for, fortunately)
    So first she rang us on his mobile in France, when we had clearly told her our dates, so he wouldn't talk to her. THEN when we got back, late at night and tired there on the mat was a big brown envelope addressed to ME. I opened it and it contained a wodge of printouts from the Alz Soc, and a photopied letter the consultant had written to our GP, stating very baldly that he had Alzheimers. (he really isn't bad yet, and you might not realise) I had been fighting a battle with the same mental health Dept locally who had had a conversation with my OH about my depression,( uttelrly unconnected with his health.) I was about to make a formal complaint about patient confidentiality rules (which the NHS invoke when it suits them, but break when it suits them) since they should not have talked to him about my being depressed.
    I was FURIOUS, did they expect me to tell him this dreadful news ? Or what ? So I rang the GP (v difficult because she is hard to speak to, walls in this house paper thin so I had to keep making excuses to 'pop out' to sit in car to get her.) When I did finally get her I asked if she would please tell him the diagnosis because I wasn't going to. She refused outright (she's usually v friendly and helpful) because she said that he currently came under the hospital and she couldn't interfere. So I went ballistic. I lodged a formal complaint and had a lot of meetings. I asked HOW they ideally broke the news, and they seemed to have becoome so matter of fact about it that they had become callous. Shortly after my Oh got a packet of Aricept/donepezil in the post, and without discussing it with ahyone he started to take them. I went on making a fuss until there was a local enquiry, they promised to do it differently in future, they said they were short staffed (who isnt ?) etc etc and because at the time I was seriously depressed I just let it all drop.
    That was 2 years ago. he has been taking the pills ever since (he just renews the prescription with our surgery) he and I do not discuss his illness EVER, it is as if nothing has happened. BUT the pills seem to have made a big difference to him, he is getting worse, but VERY slowly, so I'm very happy with them and I urge you to let your MIL give them a go. We still don't discuss the illness and his GP won't discuss him with me (see they will break the confidentiality rules when it suits them, but not if it might suit you) so his illness is never talked about anywhere (she never even gives him routine checkups)
    The thing which helped most was going to talk to the people at the Alzheimers Society, who listened, gave me tissues, and were so kind and understanding. Apparently that sort of thing occurring with a new diagnosis is quite common, and they had heard it all before. Not that that helps, but makes me understand that that's where to expect kindness and support from, not the surgery.
    I'm sorry to go on so long but your post seemed so familiar. I will never forgive them and I did what I could to try to stop them treating people like that, but the pills do help and I know that the Alzheimers people are there when things get difficult again in the future. I send all good wishes, and hope that you can deal with their clumsy handling of your MIL's illness. And do talk to the Alz Soc: they are kind, understanding and wonderful people.
  6. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    Hi not sure I understand this I started taking Aricept tablets in November 1999 sixteen years ago the procedure for prescription is I have a mental or memory test twice a year and I had my last test a couple of weeks ago so as I said don't understand it arriving in post
  7. tatty

    tatty Registered User

    Oct 14, 2015
    Thanks all -thought we must be mistaken as we weren't present when MIL opened the packet. However spoken to the memory clinic nurse today who is lovely and she expalined that it was standard to send out pills asap after CT scan. but was unable to explain why sent with no letter explanation or even relaying of definitive diagnosis. She agreed starting pills before explained to MIL and diagnosis properly given was not best practice so is coming in early Jan to see MIL explain results and medication and discuss any side effects etc.

    Never got to bottom who authorised sending tablet straight to a vulnerable patient.

    MIL is on levothryroxine and has hypertention definitely think she needs a medical check before administering them , SIL certainly wouldn't want the responsibilty.

    Bizarre way of handling things.

    MIL has now a definitive diagnosis of mixed dementia

    Blimey Morganlefay your situation sounds horrendous at least I was given the choice by dementia nurse and GP seeing MIL we asked today, think nurse is better as she knows MIL and is very knowledgable and user friendly.

    Glad to hear pills they are often effective - lets hope MIL agrees to take them after proper explanation!

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