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    Hospice facillities

    Every week I go to the hospice via ambulance to physio. They are very supportive and have offered me a massage on Thursday. My side (carer) goes for a massage too. Today they offered me spirtuist session to calm me You should contact your local hospice to what they can do for you.
    Last edited by jd58; 10 November 2020, 12:54.

    #2
    Completely agree John - hospices are fantastic places.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      How would I find anything out? - Do I have to wait until my husband gets his defo diagnosis? - If so and with current lockdown restrictions I think he will be bed bound within the next few months,
      Were you all referred via the consultant/mnd clinics?

      thanks

      Sue

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        #4
        Hi Sue,

        Use this link to find your local hospice: https://www.hospiceuk.org/about-hosp...aAuK2EALw_wcB#

        Then look at their website to see the referral criteria. Some hospices accept self-referrals but most need a referral from a healthcare professional - GP, Community Nurse etc.

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

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          #5
          Thanks Ellie - for some reason Wakefield Hospice didn't come up on that link ! - but I have taken the bull by the horns and emailed them to see if I can "Self Refer" my husband - I await their response.

          This is like treading treacle,

          Thanks, Sue

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            #6
            Fingers crossed, Sue - you both could definitely do with support.

            Let us know how you get on.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Hospice have been in touch and we have "put our names down" so that's something, they do offer all kinds of support but at the moment apart from telephone support for me, there is nothing else, they hope to get back to normal (don't we all) by the spring so at the very least they will be able to give him an assessment then even if he's still not been to Sheffield by then, I just hope he can physically get there,

              But I feel a bit easier now knowing that someone at least knows of us and we are on a "List" !! - so I am glad I did the referral

              thanks

              Sue

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                #8
                Hi Sue ,I was linked to my local hospice in Stratford on Avon as soon as I was diagnosed 5 months ago.The OT is linked to the hospice and in some way it seems that the physio, palliative care nurses etc all seem to do a multi disciplinary zoom meeting every month including the neurologist that I see 2 monthly.Every 2 weeks somebody from the hospice rings to check on me and my new symptoms and ask how my husband is coping.No hospice groups on site due to covid though.however various health professionals have been out to see us as and when needed in PPE.They are also there for any advise and found them an amazing support and reassurance that we aren't alone in this journey. Best wishes Mary

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                  #9
                  Hospice have been in touch again - feel better about it now.........I am to have an in-depth phone call next week and they will fill me in on what they have to offer my husband.........from my point of view they can also give me bereavement support due to the death of my son which in turn might help me cope better with my husband....if I can get the words out that is,

                  Glad I contacted them now, thanks

                  Sue



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                    #10
                    Oh I'm so glad, Sue. It might take until the 2nd or 3rd call for you to open up, but that's entirely normal. (I spent my first counselling session just sobbing and used up her tissue stock 😄)

                    Hospices really are wonderful!

                    Take good care of youself x
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                      #11
                      Sue, that’s fab. I’m going to click on the hospice link that Ellie put up now. I didn’t get a referral 3 years ago when I was finally diagnosed. Lynne x
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

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                        #12
                        Free Ambulancethere and back for mnd suffers in Wales. Hospice will give you the number.

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                          #13
                          I found that the local hospice that we knew of, didn't come up on the site that Ellie posted when I did a postcode search but did when I typed the town in. Might be better to just Google it.
                          Each day is made easier with a bit of humour.

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                            #14
                            Back from hospice had my hands, feet and lower legs massaged in oil Bliss.😍😍

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                              #15
                              jd58 I'm soooo jealous! Hope you sleep well tonight x
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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