Awaiting continuous health care meeting anxious over outcome!

Discussion in 'I care for a person with dementia' started by rainsford76, Nov 2, 2016.

  1. rainsford76

    rainsford76 Registered User

    Jul 21, 2013
    15
    cwmbran gwent
    Mum who has middle to late stages of vascular dementia fell out of her rise and recline chair at home. Mums mobility was poor but once she was standing she could walk with assistance. This happened about six weeks ago and has been hospitalised since. None of the family saw what happened we can only presume either she got hold of controller or my dad who also has Alzheimers got hold of controller as the chair was verticle as we arived.. After a long battle with not having equipment and good care providers we were finally getting somewhere just prior to her fall which was the frustrating thing about all this.

    Anyway as my partner tried to lift my mum she vomited so felt we had no choice but to call 999. The paramedics checked her over and she was fine but a little concerned as she had a low heart rate and wanted to keep her in over night. Her heart rate then got back to normal but still wouldnt release her even though she was medically fit. Please note we already had all the equipment, house adjusted,and full care package in place with private sit's in place when we were working. I kept saying we can put a lock on chair, we can put cameras in but as the paramedics raised concerns they kept her in. Its been six weeks now since she has been hospitalised and she has had no physio in this time as she is not understanding instructions as unfamiliar surroundings and they dont have enough staff to keep persevering. I asked if could bring chair in but as material would be risk of infection. They are just hoisting her to toilet and also not even bathing her properly just bed baths. She also hasn't had her hair washed since there even though I've requested several times. I know they are doing there best but even when our family offer to help we get told that mum needs to get use to them.

    I'm sorry for ranting but just soooo frustrated by it all now as now we are told have to wait for continuous health care meeting as may need 24hr care now as she has declined so much since hospitalised. Not sure if this will be in a care home now which is really upsetting the family after we have battled so hard to keep both my parents home and whilst all this is happening dad is constantly on the phone asking how mum is even when I've just brought him home from visiting her..

    Please can anybody who has been through similar circumstances give advice on continuous health care if this is something that can be offered at home and also if there is a limit of time they can keep my mum hospitalised?
     
  2. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    412
  3. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    We are in a similar situation - mum had a fall at home 6 weeks ago and has been hospitalised ever since. We had the Continuing Care meeting last week (which was granted) and we are looking for a care home for mum. My mum lived alone prior to being in hospital and we were already concerned for her safety, so we agree with the recommendation of a care home.

    The Care to be Different website has some good information. I also find this factsheet from Age UK http://www.ageuk.org.uk/Documents/E...and_NHS-funded_nursing_care_fcs.pdf?dtrk=true a good starting point.

    There are usually 2 stages in the decision making. Firstly a checklist, and then if she meets that criteria a more involved meeting where a Decision Support Tool (DST) is completed.

    You can find links to both documents here https://www.gov.uk/government/publi...inuing-healthcare-and-nhs-funded-nursing-care

    It's more than likely you are at the DST stage - in my mum's case the Checklist was done without our knowledge. As a starting point I would go through the domains and make a note of what your mum's needs are. If possible have evidence of her needs, even if it's only dates as to when she has fallen etc. If you have carers coming in is there any thing in their log that might help? If she has lost weight what was her weight previously? And so on.

    At the meeting there is likely to be at least the CHC co-ordinator, a medical person (in our case the ward sister) and a hospital social worker. Be prepared for a long meeting - 2 hours is not unusual, so if you're paying for car parking don't just pay for half an hour!

    Be prepared to stand your ground - if you disagree with their decision on a particular domain ask them to note this. If you have a Lasting Power of Attoney for Health Decisions be sure to take this (or preferably a certified copy) to the meeting.
     
  4. Leswi

    Leswi Registered User

    Jul 13, 2014
    120
    Bedfordshire
    I got CHC funding and kept mum at home. Had a big battle to get enough funding to pay overnight care and sufficient day care but perseverance paid off. I had lovely private carers too, not agency and that was a battle as CHC assessor wanted me to use their agency carers. Keep fighting for things to be done how you want them and good luck.
     
  5. nitram

    nitram Registered User

    Apr 6, 2011
    18,555
    Male
    North Manchester
    The bar for CHC is set very high so get yourself prepared with as much evidenced information as you can.

    If there is not unanimous agreement on what score to give in any domain make sure that the highest score is recorded, even if only one member, and notes added as to why scores varied. This indicates to the panel that they should consider all the points raised in the notes.

    If the lead person disagrees with this point them to
    User Notes - Key Principles - 22 in the DST document:-

    If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion

    Ask the lead person to read out what they are submitting to the panel.

    If you manage to obtain CHC in a domestic setting and get to the stage of worrying about finance note that, unlike CHC for a residential setting AA remains payable.

    Best of luck with the DST.
     

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