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Family in Crisis

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    Family in Crisis

    Looking for advice please...
    My Mum has had MND since 2014 and is currently living at home in an adapted extension paid for by our local council. Although she is paralysed and bedbound and is on NIV 24 hours a day she is still able to talk and Swallow. Mum gets Continuing Healthcare and we know how lucky she is to get this as the assessments are rigorous and of putting to say the least. Mum has relatively good quality of life due to the fact that she is in her own home with all the equipment she needs including some really good assisted technology which still gives her a little independence. Mums care package is good with 2 carers coming in 4 times a day and a night sitter with her from the hours of 10pm til 8am. My Dad was her main carer until he had a fall in December resulting in him passing away unexpectedly just before Christmas. We asked the CCG at the time my Dad was admitted to hospital for some emergency care thinking that he would make a recovery but we were told “no” there is no funding available and we would have to manage Mums care as a family or put her in a nursing home. A nursing home was offered us at this time but we knew nothing of nursing homes and had not been to see the one suggested to us. We managed as a family until my Dad sadly passed away and then it became apparent that we needed to find a nursing home for Mum as none of us could afford to give up work to look after her. The CCG have been so unhelpfu, we are now taking unpaid time off work to look after my Mum whilst frantically looking for a suitable nursing home for her. She has had 3 nursing homes assess her so far and all have refused to take her due to her high level of need. We asked to meet with Mums case worker from the CCG who told us that if we can longer cover the care for my Mum she will be placed into hospital until they can find her a nursing home. This is the most stressful thing I have ever had to go through. Whilst I know compared to some people we are lucky in the fact that my Mum has CHC and a good care package in place, I feel that we have been held at gunpoint in regards to what will happen to my Mum now. My Mum has just lost her husband, she was unable to attend his funeral and we were not even offered any help then so we could attend, we had to ask a neighbor to sit with my Mum so we could lay my Dad to rest. My Mum is being forced to leave her home and go into a nursing home, she desperately wants to stay at home and we feel so so guilty for doing this to her. Myself and my brother are in danger of losing our jobs but the thought of Mum being taken into hospital fills us with dread. Hospital is no place for someone with such complex needs as my Mum, no disrespect to any of the nursing profession but they are understaffed and overworked and could not possibly give my Mum the level of care she needs.
    I’m wondering if anyone knows what our rights are in terms of the law and CHC, I know that Mums care is legally provided but can we insist that they pay for care in her own home or do they have the right to force her into a nursing home against her will? The CCG have told us that she could potentially be placed anywhere that has a bed for her and that are willing to accept her which could be anywhere in the country! My Mum has full capacity and has told us she wishes to be cared for in her own home. We are in the process of writing to our MP but does anyone know where we stand on this? Mum is in Manchester under Trafford council.
    Any advice is welcome, we haven’t even been able to process what has happened to our lovely Dad because Mums careis allconsuming at the moment.
    Thank you x

    Oh I am so sorry for what you've been through and are going through, losing your dad, now this horrible situation with your mum's care.

    You should ring the MND Helpline - 0808 802 6262 - for immediate advice. Hopefully someone will post on their experience too.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Hi Pinklollie ;

      I think that your mum has a right to be cared for where she wants to within reason. Sticking her in hospital or a care home that doesn't want her and can't meet her needs is not reasonable and outrageous.

      Don't know the legislation side of things.

      Writing or phoning to your MP is a GOOD thing to do and hopefully MNDA connect can guide you.

      Keep us informed.

      Love Terry
      TB once said that "The forum is still the best source for friendship and information."

      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


        hello Pinklollie
        I dont claim to have any experience with this but this link may help to the Independent review service whoch seems to review community care decisions.

        Please ignore above link it relates to review of community care grants.

        the following link may give you a starter for advice on continuing care
        Last edited by Guest; 17 January 2018, 18:02.


          Hello Pinklollie
          This does not sound right at all. Your family needs to be shown more compassion especially so soon after your father's passing. I am sure you are all still in shock.

          I was up at the NHNN today discussing my own worries about my future care. My husband died recently so I live alone. I was assured that as I progressed and needed care I would be able to stay in my own home and would eventually receive CHC.
          I am sure that the MNDA will be able to advise you so ring them asap and ask for their help.

          I do hope things improve and your mother is allowed to stay in her own home so that she can grieve for your father properly.