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

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  • Ellie
    replied
    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.

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  • Ellie
    replied
    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 [email protected] 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.

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  • Jude Hall
    replied
    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.

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  • miranda
    replied
    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.

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  • Jude Hall
    replied
    Thanks Terry

    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

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  • Terry
    replied
    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

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  • Terry
    replied
    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

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  • Ellie
    replied
    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.

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  • Jude Hall
    replied
    Hi Ellie
    I've decided after the bank holiday I'm going to call our gp surgery and ask the practice manager if mum can be referred to the community nurse or at least find out exactly what sort of support we should expect for Mum.
    Her mattress has 2 settings high and low pressure and if you turn the pump off the mattress on its own is surposed to be a level 5 pressure care so she has turned the pump off as even on the low setting the ridges are too painful for her. I think we need to tell the OT it's not the right sort of mattress for Mum. It's a mercury dynamic mattress and doesn't have any settings for body weight. In my opinion this is what happens when an OT orders equipment without assessing the patient first and not visiting to see if the equipment that's delivered is right and usable.
    It seems so unfair when you have to fight for the right equipment and care when you are suffering from a rapidly deteriorating life limiting condition. It's so exhausting but I shall keep fighting for her as much as possible to get the right equipment and care she deserves.

    Thanks to everyone who has messaged me with tips and ideas for my mum, love to all x

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  • Ellie
    replied
    Thanks for the explanation Jude.

    Yes I agree that maybe a different hospice may be better, as well as trying hard to get the community nurse involved (I'm at a loss as to why it's such a palaver for your mum to access one) Ideally she'd have someone overseeing her care which wouldn't involve an exhausting and uncomfortable 2.5hr roundtrip!

    Originally posted by Jude Hall View Post

    Not sure mum can cope with the air mattress as the ridges blow up every 14 mins and press painfully on her spinal stenosis soci don't think it's the right mattress for her. While I understand it's to top rated one for pressure care it's not comfortable for her as she is at present.
    Jude, are you sure the pressure / firmness of the mattress can't be lowered? Look at the control panel and see if there is a + and - button for weight or pressure. She shouldn't feel the ridges of the mattress - if the pressure can't be adjusted, she needs a different mattress. If you're unsure, what mattress is it and I can look it up. (I spent one very uncomfortable night on a mattress feeling ridges and I've no spinal issues, so IDK how your poor mum copes . I got a weight adjustable mattress which is very comfortable)

    Also, a 14 minute rotation seems long when at high risk of pressure sores.

    Hope she gets sorted soon - I think you'll be busy on the phone from Tuesday!!

    Love Ellie.

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  • Barry52
    replied
    Hi Jude,

    You may want to look at this MNDA link showing the care centres. I would think Cambridge or Birmingham is nearer than Nottingham.

    https://www.mndassociation.org/wp-co...d-networks.pdf

    Best wishes,
    Barry

    Leave a comment:


  • Jude Hall
    replied
    Originally posted by johnburton View Post
    I have a hospital bed provided by the NHS, but have enough power in my hands to operate the buttons. I have found a hospital bed that I could buy privately that uses infrared controls and so could be interfaced to and operated by an eye gaze tablet. It's something I'm considering for later.

    I have had little OT support in West Berkshire, but otherwise the NHS and the local MNDA team have been extremely supportive. I have bought most off the equipment I use, apart from the bed and a power wheelchair.

    I am taking Movicol for constipation, it being a stool softener rather than a laxative.

    I have no experience of hospices, although I know there are good ones in the area.
    Thanks for you post John, seems were on our own with it as you seem to be too.
    Take care x

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  • Jude Hall
    replied
    Originally posted by Kayleigh View Post
    Hello Jude,

    Sorry that your mum isn't receiving all the support from an OT and hospice etc that she should be. Hopefully MND Connect and your Regional Care Development Adviser will be able to help with sorting out these issues.

    You might already be aware that your local Adviser (for Central Midlands including Northamptonshire) is Scott Maloney:-

    https://www.mndassociation.org/getti...ment-advisers/

    Love and best wishes,
    Kayleigh x
    Thanks for you reply, yes I've spoken to Scot befor and he is aware of our plight with hospice. I might call him to ask him about swapping mum's care to a hospice in Northampton as they seem to be more supportive when She went for the day for a breathing meeting.
    The OT never comes to see mum at home and has ordered bits and bobs for her remotely, so like with the bed, she wasn't assessed the bed just arrived. Not sure mum can cope with the air mattress as the ridges blow up every 14 mins and press painfully on her spinal stenosis soci don't think it's the right mattress for her. While I understand it's to top rated one for pressure care it's not comfortable for her as she is at present. I guess we shall have a battle on our hands to get it changed.
    Some thing to look forward to after the bank holiday as won't get any joy now till Tuesday.

    Thanks for you supportive post.

    Leave a comment:


  • Jude Hall
    replied
    Originally posted by Ellie View Post
    Hi Jude,

    I’m so sorry your mum is struggling unnecessarily, which obviously is very distressing for you.

    To address some of your points:

    Bed controls - In the short-term I wonder if building up the buttons would make them easier to press? By this I mean putting a lump of Blu Tack, or similar, with an old button on top of the flat push-button control. I did this at your mum’s stage and used the heel of my hand, rather than fingers or thumbs, to press down. Or she may find a knuckle easier.

    Longer term, yes there are beds controls which interact with eye gaze environmental controls or switches, but you may find getting a compatible bed hard or her current control may be suitable. It’s worth asking the SLT at mum’s next Clinic appointment.

    OT - I am in a different health service but wherever one is, yes, most definitely people should be assessed by the OT before ordering any equipment, be it cutlery or a wheelchair. Obviously a person needs to be shown how to use a wheelchair, hoist etc. and not a spoon, nor will the equipment necessarily be demonstrated by the ordering OT but by the person delivering the equipment. That said, it is vital that wheelchairs, hoists etc. are set up to the user’s height, leg & arm length and individual specifications.

    Hospice - What a poor response from mum’s local hospice Hospices are for people with “life limiting conditions” so that definitely covers her. You said your mum spoke to the hospice OT, I wonder if this is right? If she didn’t speak to Nursing, she should. Referrals can be made by her GP, community nurse or, given their inaction, the MND Clinic or her MND nurse I daresay.

    Your mum would benefit from a short inpatient stay for “symptom control”, i.e. her pain and constipation etc. If none of the above people are willing to help, contact the MND Connect Helpline as your mum should have access to a hospice.

    Feeding - I know this came up a year ago but did your mum get a feeding tube? If she’s struggling to eat and is losing weight her energy levels are bound to be low - I was going to ask if a Dietitian or an SLT have assessed her recently, but I guess she hasn't been?

    When is her next Clinic appointment?

    Take care.

    Love Ellie.
    Hi Ellie,
    Mum no longer goes to an MND clinic. There in lies her problem I think. She did go to Nottingham at first who were great but then it was decided the 2.5hr journey was too much and they suggested her care be swapped to the local hospice 5mins down the road. We were told she would have access to everything she needed.so she no longer has an mnd team or MND link nurse. She goes to the hospice Dr every 3months when an OT or physio takes notes but hardly ever gives any in put.
    It was decided 4wks ago at her appointment they would send out a dietition to show mum a feeding tube and SALT team to assess her as she has never been assessed so far. Also they would send out OT to do an environmental assessment as she has never had one and do the CHC funding assessment. 4weeks on and we have only had responce from dietition who is comming in 2 weeks nothing from the OT or SALT teams.
    I think she needs to have a nurse visit but the Hospice told her their nurses are for cancer patients and the gp's said they only send a nurse out after a gp has been out. The gp came and said come to gp surgery if bowels are no better soon and so no nurse follow up arranged. What she needs is access to community nurse for symptom management but we just dont seem to be able to get access.
    Its a mess for her and I feel powerless to improve it for her. She seems to get no support at all.
    Thanks for the tip about buttons I'll give it a go.
    Sorry for going on but hope you can understand my frustration.

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  • Kayleigh
    replied
    Hello Jude,

    Sorry that your mum isn't receiving all the support from an OT and hospice etc that she should be. Hopefully MND Connect and your Regional Care Development Adviser will be able to help with sorting out these issues.

    You might already be aware that your local Adviser (for Central Midlands including Northamptonshire) is Scott Maloney:-

    https://www.mndassociation.org/getti...ment-advisers/

    Love and best wishes,
    Kayleigh x
    Last edited by Kayleigh; 20 April 2019, 16:41.

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