1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Care home changing medication

Discussion in 'I care for a person with dementia' started by father ted, Feb 21, 2018.

  1. father ted

    father ted Registered User

    Aug 16, 2010
    684
    London
    Mum recently went into care home.
    Prior to going in she was on Cocodamol x2 for pain 4 hourly. Mum seemed was OK on them but frequently asked for more an hour or two before the four hours were up.
    The home uses the GP services of a nearby practice with the GP visiting once a week and I was told that her meds would not be changed for the first 3 months. However I have now found out they have changed her analgesia.

    On a recent visit my Mum asked for painkillers and I noticed she got 1 paracetamol tablet. I asked the staff to get her another as I felt 1 paracetamol is woefully inadequate. She told me that the GP has taken her off the Cocodamol as it is far too strong. I told her that it was prescribed by our previous GP and that Paracetomol was ineffective for arthritic pain. She then said that my Mum doesn't ask for painkillers(when at home she was asking me all the time) and she said that because my Mum has capacity she can ask for them when she needs them. I countered this saying that she has poor short term memory issues too so you are assuming she will remember to ask for them when she sees you. I don't mind if they alternate the codeine with the paracetamol throughout the day but I much rather Mum has pain killers regularly to keep pain at bay than not giving them and waiting for her to ask which I think is unreasonable.
    She kept saying how addictive codeine was as if it were a gateway drug and within weeks would lead to Mum sitting in the lounge smoking a crack pipe! Surely pain control at 91 is more important. What are others experience? I am going to speak to GP soon and want to have a good few points to back up my argument.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,629
    Female
    London
    I too would be annoyed if a GP changed a prescription without involving me. However, codeine-based painkillers are stronger than Paracetamol or Ibuprofen and can cause addiction if taken for too long or too much. There definitely always has to be a gap of at least 4 hours inbetween and it's worrying if she asks for more sooner than that as that could indicate that her tolerance has changed. It's not a gateway drug but it can cause severe side effects if taken too long or not under medical supervision.

    This is what the NHS say: https://beta.nhs.uk/medicines/co-codamol-for-adults/

    Just calmly ask the GP about his decision. Everyone reacts differently to medication and I'm sure he just wants the best for her.
     
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    @father ted, my mother is in a care home in the States, so I don't know if that makes a difference to my reply.

    My mother has been in her care home for three years and she is 75. She has chronic arthritis, which causes her some level of constant discomfort or pain, and also pain from a couple of old injuries. In cold, wet, or changeable weather she feels the arthritic pain most keenly. She may also have some pain in the left kneecap, which she broke last year in a fall, and had to have surgery on, although when asked, she will deny this and only mention the arthritis pain.

    The care home have done their best to manage her pain. She receives some painkillers (plain Tylenol/acetaminophen/paracetamol) on a regular basis, a pain med I can't remember the name of every night before bed, and she has a standing PRN (as needed) order for Tylenol/acetaminophen/paracetamol with codeine. She also has lidocaine patches (topical anesthetic) for the areas where she complains of the most pain; these may give more psychological relief than physical, but whatever it takes is fine with me. They keep an eye on this to make sure she isn't getting too much of the paracetamol overall. They ask her at least every four hours, if she is in any pain.

    These medications are all ordered by the GP who comes to the nursing home, or his nurse practitioner, and there has been absolutely no nonsense about addictive drugs or any similar discussion. I have expressed to the care home and the GP, many times, that my main (non dementia) goal is to manage her pain as well as possible and they are in agreement.

    My grandmother, who had worse arthritis pain and also Alzheimer's, was on heavy duty narcotic painkillers for at least the last fifteen years of her life, again with an understanding GP and care home, and that was never an issue.

    I think that with something like chronic arthritic pain, it is, as you say, best to keep ahead of it with steady and regular dosing. Given your mother's age and condition, there is no way I would be worried about addiction, only adverse reactions (as with any patient).

    I do not think your mother should be expected to self report her pain. She should be monitored by the staff. They should ask if she is in pain. If she is not able to express it verbally, there are other scales to judge pain.

    I do not think it is acceptable for your mum to be in pain, and that you are 100% correct. Definitely speak directly to the GP. Good luck!
     
  4. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    I would speak with the GP...maybe the care home have have not fully described matters. Do you have Health poa? Dad could not ask for anything or verbalise his pain so in his NH they monitored facial expression and body language and we all agreed that pain relief should be given if in any doubt. Arthritis can be very painful and presumably her previous GP thought the pain relief regime worked well and had weighed up the balance of that against any addiction risk. Other than the 'hopefully do good but do no harm' argument in the medical profession I really don't understand for an elderly person in pain and with dementia which is only going one way and will inevitably bring about end of life why addiction is such a worry for them. Surely better to treat the here and now with whatever is effective to keep pain free and all about the best quality of life now...as attorney Health for Dad I was able to push that point for dad on a few issues
     
  5. father ted

    father ted Registered User

    Aug 16, 2010
    684
    London
    Thanks for your replies.
    I will be speaking to the GP in the next few days. I haven't got Health and Welfare POA but if it will help in situations like this I can see it would be advisable to get it.
     
  6. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    There are some folk on TP that haven't needed it and were able to be fully informed and involved without it however there were times when I felt having the legal authority to speak as though I was my dad was very helpful
     
  7. Careroncoffee

    Careroncoffee Registered User

    Feb 16, 2018
    39
    Female
    Watford, Hertfordshire
    @father ted I think something is remiss with the change in drugs. Co-codamol isn’t really that strong on the painkiller scale. Often what Drs/nurses/carers are concerned about is, codeine can cause constipation especially if someone isn’t eating and drinking normally and isn’t very mobile. Constipation can lead to urinary retention and a whole host of other issues.

    It’s often a case of the textbook says this so we must blindly follow. Patient centred care goes out of the window.

    Having been through a similar situation in hospital with my mum e.g. she wasn’t asking for painkillers so she can’t be in pain, she is now on low dose butrans patches instead of the co-codamol. Decent pain relief without gut issues. The patches may not suit your mum, but there are so many more options.

    The dr who gave me the ‘can’t be in pain.....’ chat had his own gut issues after that, namely retrieving the rocket that had found it’s way into his posterior ;)
     
  8. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    My mum has arthritis, years ago she was on heavy dose of ibuprofen, had gastric issues and this was replaced with co dydramol, stronger (more opioid) I think than co codamol, but same level of paracetamol, this was before dementia when she was managing her own meds.Dementia arrived Dec 13. So this gives an indication of how long she has been on them for. Never questioned by new GP or hospital on admission for pneumonia.

    the codrydamol was PRN - (one morning, one at night but 2 more as needed) so when the time came to move her to a supervised dosset box in her sheltered extra care it wasn't included, this worried me on 2 levels, she was clearly in pain, and not taking enough, although waking in the night to take one, and conversely if she forgot she had taken them she could overdose.

    I phoned GP and arranged for morning and evening dose to go in dosette box and removed prn dose. This seemed to create correct balance of pain relief, although the significant weight she has lost at the start of her dementia journey made a massive difference as well. I do hold H & W POA, but also which is what seems to allow conversations, my mum gave permission for things to be discussed with me and this is recorded on her GP records.

    I think my mum needs this level of pain relief, and GP seems happy to give it. I hope this helps to see that similar scenario to your mum and no issues. I would imagine it is a common scenario.

    Maybe need to emphasis awareness of asking for pain relief and need for pain relief, which I am sure I mentioned when requesting they go in dossette box, back in 2014
     
  9. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    A couple of years ago when my Dad was prescribed co-codomol after surgery, his GP did make it clear that he couldn't be on them for very long and the pills were heavily rationed. The driver for this seemed to be NICE prescribing rules. Maybe certain drugs have a red flag against them because they are addictive or could cause other health issues to liver, stomach etc if they are prescribed over a long time /in high dosages? Hopefully the GP can offer alternative medication.
     
  10. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    Hi
    Mum too is on patches as we wean her off cocodomol because of the tummy troubles, a situation she really does not need.
    In the hospital they were very keen for Mum to be off co codomol.
    @Careroncoffee it would appear we had the same Doc, a rocket was used too.
     
  11. Careroncoffee

    Careroncoffee Registered User

    Feb 16, 2018
    39
    Female
    Watford, Hertfordshire
  12. Orlaworld

    Orlaworld Registered User

    Feb 3, 2018
    25
    Might be worth asking if she can be prescribed analgesia patches since they can be applied and left as a slow relaease drug for several days. I’ve seen them work well for a number of people and they can be used in conjunction with other medications.
    The asking for meds argument goes out the window with someone who has short term memory problems as they won’t remember to ask for them.
    Good luck with GP.
     
  13. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    #13 Ann Mac, Feb 24, 2018
    Last edited: Feb 24, 2018
    @father ted - I just want to sympathise about meds being changed without you being informed. My Mil is in an otherwise brilliant care home, but like the hospital before it, the one thing that they are poor at is letting us know when Mil's meds have been changed. I usually only find out by chance when this has happened, and its led to her being prescribed a drug (for the THIRD time) that we know actually makes her agitation worse - and this info wasn't only given to both hospital and CH by us, it's actually included in her medical records and care notes!

    Similarly, we have had issues with prophylactic antibiotics being withdrawn, because the general consensus amongst the medical profession is that they 'rarely work'. We know that they 'rarely work' - however, Mil is one of the 'rare' people who they do help. After being prescribed them, she was UTI free for over 18 months. Within a week of her being admitted to hospital, she had a severe UTI, which (as is often the case with Mil) then led onto a really bad chest infection. We (again) found out by chance, that the meds had been stopped, as soon as she was admitted, despite it clearly being recorded in her notes why she was taking them - we had a battle royal to get them re-instated. When she was discharged into the CH, the hospital failed to add them to her repeat prescription list - we discovered this when she was again seriously ill with a UTI, followed by a chest infection. We got them re-instated again.

    Her agitation and behaviour has been getting worse over the last 3 months. In addition to the latest incident where the drug that impacts adversely on this situation being again prescribed, it now seems likely that the antibiotics have again been withdrawn by her new GP. We are waiting for confirmation. Meanwhile Mil has a really bad UTI, and as a result of this, her behaviour has deteriorated to the point where she attacked two members of staff in the last few days. One got a slap across the face - the other is now off work with a dislocated finger and a broken wrist . Because of how extreme her behaviour has been and the aggression, she now may not be able to stay at this CH - and this is a CH that specialises in aggressive/agitated behaviour. The only alternative is a secure ward in some sort of mental health facility or hospital. Not where any of us want our loved ones to end up. The situation has been further exaccerbated by her current GP apparently removing the sleeping medication that she used to have, on the grounds that she didn't 'need' that as well as the (useless) anti-psychotic that he prescribed - despite the fact that this had been tried in hospital, and it is documented that it proved to be ineffective. The fact that Mil is now rarely sleeping at night has made things worse -aren't we all crabbier when we can't sleep?

    I know that none of this is the same as the painkillers being taken away, but it seems to me that GP's and doctors and consultants are so arrogant that they don't bother to check, and even when confronted by 'ground floor' staff and nurses, who tell them that a change isn't working, that it's even making things worse, they will not admit that they are wrong, until you, as the relative, go in screaming and shouting and insisting. One consultant told me that whilst 'other consultants may disagree, at the moment, I am in charge and what I say, goes'.

    It about sums it up, doesn't it? And shows why we so often have to resort to the rockets!
     
  14. father ted

    father ted Registered User

    Aug 16, 2010
    684
    London
    Absolulurely agree AnnMac and have been told now that they will no longer prescribe Paracetamol and so the family have to buy it. The tablets are so cheap this is not an issue but I don't expect I"ll have a say when Mum has it!
     
  15. Careroncoffee

    Careroncoffee Registered User

    Feb 16, 2018
    39
    Female
    Watford, Hertfordshire
    @father ted drugs that can be bought over the counter are only not prescribed if they are for short term use only.

    If the drug is prescribed for long term use, then GP has a duty of care to maintain the prescription. This is especially relevant if the drug has to go in a dossett box.
     
  16. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    I am very surprised by this..at dad's NH they would only give medication provided directly by the pharmacy and prescribed by the GP and that is correct procedure I would imagine. Family should not be asked to provide medication regardless of the fact it is cheaper ... otherwise how can they be absolutely sure you haven't bought some off the internet and it isn't in fact what it says it is! Of course you would buy it from a well known supermarket but that is not the point! Perhaps it is only dad's NH who do this but I am glad they had a responsible and accountable procedure in place
     

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