Whilst asking about my husbands feet in a previous topic it was suggested I ask my Husbands Palliative Care Nurse or MND Nurse..........WHAT????!!!
I have no knowledge of what this might be - where would we get such care?
Out of sheer frustration, nobody even knew we existed as far as this unfolding nightmare was concerned, in summer 2019 I started "trawling the net" and noted I could "Self Refer" - so I did and I have to say that the adaptations and wheelchair services have been really good to him - but that's all about equipment.
My husband was also given 3 months physio, which has long finished.
They are also fitting us a wet room at the end of November.
But other than that we have had nothing offered...................is this because he has not yet had the definitive diagnosis ?
There was a **** up last week with an appointment so he's now back on the list to see his consultant - he's not even had his muscle biopsy results yet and that must be over 2 months ago - after he eventually gets this appointment the consultant is saying she will send him for a second opinion to Sheffield.
I doubt this is going to happen anytime soon - Sheffield now in Tier 3 lockdown............and these processes seem to take months.............
If all this takes 6 months I think my husband will be bed bound by then..........god knows then what will happen............
He never sees the GP (not that you can now anyroad) thankfully he's in no pain so no need to.
I have become his full time nurse is this normal ?
Where do these MND services and Palliative care services come from?
So many questions, talk about "floundering"
Personally I am "Sinking" my son died recently so am trying to deal with that also.
Any info greatly appreciated
Thanks
Sue
I have no knowledge of what this might be - where would we get such care?
Out of sheer frustration, nobody even knew we existed as far as this unfolding nightmare was concerned, in summer 2019 I started "trawling the net" and noted I could "Self Refer" - so I did and I have to say that the adaptations and wheelchair services have been really good to him - but that's all about equipment.
My husband was also given 3 months physio, which has long finished.
They are also fitting us a wet room at the end of November.
But other than that we have had nothing offered...................is this because he has not yet had the definitive diagnosis ?
There was a **** up last week with an appointment so he's now back on the list to see his consultant - he's not even had his muscle biopsy results yet and that must be over 2 months ago - after he eventually gets this appointment the consultant is saying she will send him for a second opinion to Sheffield.
I doubt this is going to happen anytime soon - Sheffield now in Tier 3 lockdown............and these processes seem to take months.............
If all this takes 6 months I think my husband will be bed bound by then..........god knows then what will happen............
He never sees the GP (not that you can now anyroad) thankfully he's in no pain so no need to.
I have become his full time nurse is this normal ?
Where do these MND services and Palliative care services come from?
So many questions, talk about "floundering"
Personally I am "Sinking" my son died recently so am trying to deal with that also.
Any info greatly appreciated
Thanks
Sue
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