1. Q&A: Medication - Thurs 22nd November, 3-4pm

    Do you have questions about medication and drug treatments for dementia? There's no drug to cure dementia yet, but it's often possible to relieve some symptoms.

    Our next expert Q&A will be hosted by Simon from our Knowledge Services team. He will be answering your questions on Thursday 22nd November from 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.

Help to negotiate through the maze of rules?

Discussion in 'Welcome and how to use Talking Point' started by VerityH, Nov 9, 2018.

  1. VerityH

    VerityH Registered User

    Aug 21, 2018
    62
    I am sure this has been asked before, but my sister and I are so short of time while looking after our mum and dad that I just don't have time to trawl through previous posts - sorry if this is a duplication of previous questions.

    We are currently dealing with dad in hospital. He has been in EMI unit in a care home for 3 months, but he has a fractured spine due to osteoporosis and is pretty much immobile now and in a lot of pain, so we're swimming through treacle trying to work out what to do with him next. I don't think his current care home can cope with him - in theory,they SHOULD be able to, but the care there is really not up to the standard he needs, unlike the home my mum is in which is top notch. I think he needs nursing care, or certainly a lot more 'hands on' care as he can't turn himself in bed or get up an down unaided. As we are not allowed on his current ward until 1pm when all the doctors and physios have been and gone, we cannot find out what is happening with him. The nurse on his ward yesterday was singularly unhelpful yesterday, and during the 2 hours I was allowed to be with him yesterday afternoon, she sat on the other side of the glass partition and ignored us, despite me having asked for an update meeting with her when I arrived. The discharge nurse came round to talk discharge, and we said we couldn't get on with discharge process until we get dad's pain management under control and until one of the professionals talks to us as we need to organise better care for him when he is no longer in hospital and we need all the details if we are to organise a different care home and possibly nursing care. We are self funding, so absolutely no help from social services. I know responders to this post will say we're entitled to social services input, but I have tried and tried and tried and the best I can get from SS in West Cheshire is an offer of a list of care homes. Helpful? Not so much!

    I need to know if Age UK or Alzheimers Society or anyone else offer any kind of advice in this respect? I've been sent the NHS CHC guide by a well meaning friend, but it is 167 pages of jargon and I just don't really have the time to read and understand it properly just now.

    If anyone knows of a readable understandable guide produced by anyone for the layperson who spends half her life in the car to the hospital, sitting by the hospital bed or in the car on the way home from the hospital or visiting mum in the care home or sleeping I would be grateful for a link!

    We have requested a meeting with the consultant (the discharge nurse told us to email him, but the hospital do not give out phone numbers or email addresses for consultants) so we can find out what stage his care is at, whether they think he needs nursing care and whether they can find better ways of controlling his pain so he could at least be turned over in bed without screaming in agony.

    You guys are the experts - forget the NHS professionals! I look forward to your always helpful and calming advice.

    Thanks in advance.
     
  2. VerityH

    VerityH Registered User

    Aug 21, 2018
    62
    I should add that dad has no memory - doesn't know where he is, is deaf, can't understand anything, just says 'I'm lost' when I try to explain anything to him. How the professionals think he's going to tell us what he's had for lunch let alone what the doctor said is quite unbelievable. I wish John's Campaign would take a better hold. NHS staff, despite clearly dealing with dementia patients all the time, seem to make this whole process as difficult as they can. Each individual member of staff (with a few notable exceptions) is friendly, understanding and helpful, but the system is so disjointed nobody knows what the other people are doing. How, after the billions the govt has spent on NHS computer systems, can the discharge nurse not check out dad's file on the computer and see what medication he is on? I despair!
     
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,391
    Female
    Chester
    My mum was inappropriately discharged from hospital, not too much of a disaster in the grand scheme of things, but the discharge team phoned my mobile, which I didn't manage to answer in time and didn't leave a message so I turned up to visit her and they had a taxi on its way to take her to a rehab home.

    I kicked up a fuss and it was only when I said the magic words, I don't believe she has capacity to understand and I hold H & W POA, that suddenly I got action. You need to make sure the discharge team know and understand your father lacks capacity and if you hold H & W POA make sure this is on his record. Ask to speak to as senior a member of the discharge team as you can. Beware that after 5pm on Friday there will not be many people around who can help - which I found out - so take action today.

    The ward didn't really understand dementia, and as it wasn't listed on her notes, kept not believing me (not helped by my brother who had told them she 'just' had a few memory issues - I was told by a nurse she didn't have dementia because my brother had said this - I made them check her list of meds, which showed donepezil which is only prescribed for Alz). Make sure it is on your father's current hospital record - I got the ward nurse to show me the screen and add it.

    (check my location )

    In my case my mum is still relatively capable and did return to her current flat, handled differently she would have returned earlier, and never gone to rehab.

    My understanding is that a hospital social worker should be responsible at this stage, not the LA, but I might be wrong on this.

    I visited my mum during normal hours, but find out if there is a hospital policy for visiting outside normal hours for dementia sufferers, and if you hold H & W POA insist the Drs speak to you, not your dad about things.

    If you are self funding the LA SW is unlikely to find a home suitable, I think it is outside their remit, the hospital SW might be more helpful, perhaps locate that dept as he isn't the LAs responsibility whilst he is in hospital. You can ask /insist on a best interest meeting so they can tell you what level of care he needs and what sort of home would be suitable, but in the meantime still consider researching as mentioned below.

    Have you asked his current home if they will take him back? He is after all still paying for the room there. They would need to assess him and see if they can cope with him. Even if you aren't happy with the home, it might be a better place for your dad than hospital. You can then look for a more suitable home from there.

    If the hospital want to discharge him, his current home might well say they won't take him until they assess him

    If you think your dad needs nursing care I think to get this you need to start the CHC checklist process, he will likely fail to get CHC but will be awarded the nursing element of CHC which can only be paid to nursing homes, although this doesn't always result in a fee reduction from what I've read on TP.

    I think I've read you think the home your mum is in might be suitable on their nursing floor, speak to them, ask if they can take him, and have a vacancy. Even if LA funded in many areas you often have to do the leg work yourself, the system is very stretched. The best a SW is going to do is say the level of home they think your father needs, but homes then need to agree to take him, so getting the SW opinion isn't necessarily of a lot of value.

    You will need to find a home with vacancies and that is prepared to come in and assess your father.
     
  4. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,679
    Female
    Kent
    Brilliant advice above, I can only add that PALs (patient liaison services) might be able to help you with the lack of communication, and that I was told (Kent) that each hospital has a dementia Matron...so that might be someone else to try Re communication and visiting outside ‘normal’ hours. Do you have Admiral Nurses in your area? They provide support for carers and should have good knowledge of local services.
    I too, spent much time visiting homes to get a short list for my husband’s placement. As well as CQC reports, I looked on the Charity Commission website to check financial reports of potential placements.
     
  5. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,391
    Female
    Chester
    I never tried PALS as no time as was sorting mum out, and when I commented on what happened at my mum's memory clinic review on the same hospital site the CPN I saw said she wasn't surprised, similar had happened to her mum, and that PALS were I waste of time.

    I've complained to PALS at my hospital twice in respect of my daughter, and just a waste of time and energy.
     
  6. VerityH

    VerityH Registered User

    Aug 21, 2018
    62
    Thank you so much for your very thorough and helpful response. I love this forum and the wonderful contributors, who have all gained this valuable knowledge by fighting the system for their loved ones.

    Mum's care home can take dad and they currently have space. We met the doc this afternoon and he agrees discharge should be halted until we get pain/constipation /catheter sorted They have also scanned his prostate as the bloods indicated that might be an issue.

    Apparently the care home he is in have been involved but we haven't been contacted by anyone about what has been said. We'll follow that up later today.

    What people without family who can drop everything and advocate for them do I don't know!
    Thank you thank you thank you xxx
     
  7. VerityH

    VerityH Registered User

    Aug 21, 2018
    62
    I had cause to complain to PALS when my mum was in hospital in August, and they were actually quite helpful. Nothing really got resolved, but I got heard on the ward!
     
  8. VerityH

    VerityH Registered User

    Aug 21, 2018
    62
    There is a 'dementia nurse' - one! - but I haven't seen her (despite all the patients in dad's ward being dementia sufferers. My sister saw her earlier in the week in passing (not coming to see dad though) and she remembered our mum from the summer. I still find it weird that they don't want us there to explain to dad, to talk to him in a way he can understand and to save all the professionals' time in having to set up extra meetings to explain to us what's going on. The doctors, physios, radiography staff all said how grateful they were that we were with dad, but the ward staff on this new ward are very strict that we are only there between 1 and 3 and 5 and 7. Dad sleeps from teatime onwards, so nothing happens then, so we're only in with him for 2 hours per day, and during those 2 hours no professionals are in evidence, so we have to make a nuisance of ourselves trying to glean information on what has been done/is going to be done with dad. It's just exhausting and we always feel like we are rocking the boat when we are just trying to advocate for our dad. Hey ho. We're never going to change the system, but it gets exhausting getting your battle dress on every time you enter the hospital. Yawn.
     

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