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Thread: Light touch bed controls? what to expect from your OT service? And changing hospices?

  1. #11
    Forum Member Ellie's Avatar
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    Yes, that mattress is doing her no favours.

    Given your mum's stenosis in addition to MND, she really needs one without foam.

    Best of luck getting the nurse.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
    Forum Member Terry's Avatar
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    Hi Jude;

    Make sure your mum is not constipated at all costs. Don't know how often your mum goes but for me if it went on for three days I would take some suppositories. Constipation early on after diagnoses along with ingesting something into the lungs later on are probably the two main risks.

    Ring Mnda connect tomorrow and ask them to try and sort out some support for her so that you're not fighting alone and in the wrong directions.

    Hospices and Macmillan nurses don't just deal with cancer, perhaps 75% of there time is spent on that.

    Love Terry

  3. #13
    Forum Member Terry's Avatar
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    Hi Jude;

    Years ago I was involved with the design and installation of a room in the hospice that had bed, curtain, window, light, TV and alarm call. This was all controlled from a single switch that could be operated by various methods. It was called, Possum and there web site is here:- http://www.possum.co.uk/products/newfreeway/
    http://www.possum.co.uk/products/hc1823/

    There are other companies doing a similar thing.

    Love Terry

  4. #14
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    Thanks Terry

    Quote Originally Posted by Terry View Post
    Hi Jude;

    Make sure your mum is not constipated at all costs. Don't know how often your mum goes but for me if it went on for three days I would take some suppositories. Constipation early on after diagnoses along with ingesting something into the lungs later on are probably the two main risks.

    Ring Mnda connect tomorrow and ask them to try and sort out some support for her so that you're not fighting alone and in the wrong directions.

    Hospices and Macmillan nurses don't just deal with cancer, perhaps 75% of there time is spent on that.

    Love Terry

    Hi Terry, thanks for your message. I know that the hospice are surposed to deal with any end of life care not only cancer but the OT was very abrupt as she always is and plainly said to mum when mum asked for nursing help that "you do know the nurses at the hospice are predominantly for cancer patients" not a helpful answer when mum has not been to the loo for the last 5 days and feeling very unwell.
    My sister is going to make some calls for us tomorrow, so watch this space. Thanks for your second post Terry with the web sites to look into.
    Much appreciated, Jude x

  5. #15
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    Is your mum under the care of the Oxford MND centre at John Radcliffe Hospital? Rachael Marsden the specialist nurse clinic co-ordinator might be able to advise you.

  6. #16
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    Hi Ellie
    When mum spoke to the hospice the receptionist said who is your nurse , mum said rightly that she didn't have a nurse. They put her through to the therapy team. The OT answered and mum said she needed help with her constipation as she hadn't passed anything for 3 days. She also asked if she was surposed to have a nurse to be in contact with who might be able to help. The OT answered by saying, well you wont have a nurse because the hospice is predominately for cancer patients and offered no other support.
    The problem we have is mum was being seen in Nottingham MND clinic where there was access to every service she needed. Then It was felt that as this was a 1.5hr journey it would be better for Mum if we swapped her care to the nearest hospice to home. We were assured we would have access to the same services as were on hand in Nottingham. Unfortunately this just doesn't seem to be the case. We have an OT who is absolutly incompetent , bordering on neglectful. A physio who sits in with us and the Dr every 3 months who just sits and takes notes and does nothing else.
    This last week we had a little break through in that the gp sent out a nurse to see mum for a chat and then another nurse to do an ennima. Even though the bowels don't seam to have moved much with that.
    The OT came out this week too as we had told her the mattress in the bed wasn't right for Mum. It's taken her 15 days to come so mum has been on an uncomfortable painful mattress for 15 nights. We also thought the OT was going to do mum's first ever full assessment and fill in the CHC forms. It turned out she was 2.5hrs late comming . When She arrived mum was on the bed with her breathing machine on. The OT walked in the room and befor Dad could help mum off with the mask so she could talk, the OT said so what's wrong with this mattress then. She didn't ask how mum was or let mum catch her breath. Mum managed to say that the cells of the mattress were blowing up right on the point of her spinal stenosis which was causing more pain and unbearable even on the lowest pressure and on static mode she could still feel the ridges of the deflated cells. Also she explained how she was struggling with the hand controls. Basically the OT agreed to change the mattress but said she hasn't got time to stop to do the CHC form so she would make another appointment for that. There was no talk about doing an assessment of mum's needs. She is struggling with eating and getting off the loo and so many more things so we desperately wanted her to have a full assessment.

    I really feel mum is being neglected hence we want to try and get mum's care moved to the next nearest hospice which seams to meet the needs of other MND pts who we know, much better than what we are experiencing at present. We have just got tp work out how to do this to get the care mum needs and so deserves.

    Thanks for reading, regards Jude x.

  7. #17
    Forum Member Ellie's Avatar
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    Hi Jude,

    MND Nurses wouldn't neccessarily have links with a hospice - you need to contact your regional MNDA co-ordinator Scott Maloney on 0345 3751830 or email him at scott.maloney@mndassociation.org and get him involved in helping sort out your mum's care, once and for all...

    Here's the link to the Northamptonshire MNDA Branch http://www.mndnorthants.org.uk/index.htm

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #18
    Forum Member Ellie's Avatar
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    PS Jude. Would that nurse the GP organised come again? Your mum may need another enema, suppositories or to take a laxative such as Movicol/Laxido on a regular basis.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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