I just had to come on here to have a moan really as I feel extremely let down by our local hospice
my mum has been in and out of our local hospice 4 times now each time for pain relief they have tried numerous things which haven’t worked and every time she’s gone back home with little relief seeing the consultant in the outpatients inbetween
she’s now been in over 5 weeks pain is better on ketamine but deteriorated a lot in that time from the point of being able to wash dress shower toilet eat etc to having 24 hour nursing care as she’s not eating is really weak practically bedbound very thin and just not the person she was
some days are better than others but overall she’s definitely not improving and just awful to see her go down
I was called to a meeting two weeks ago where they were wanting to discharge her home with care I didnt agree with this but was told they aren’t a long stay unit as medically she was “fit”
i was very vocal in the meeting as some of the things they were suggesting to her were just utter nonsense from giving her a leaflet on a stair lift…. she can’t even walk and needs support to do things.. just very politically correct but not considering the overall picture or having any common sense then they phone me the next day to say clinically she was too poorly due to high calcium so shed be staying whilst they treated that…
they were even going to drag her from her chair where she was asleep into the meeting so as the patient she could have “an informed choice” rather than just discuss things with me as her only next of kin which she was happy for them to do they even recorded the meeting
I did protest that I felt they were playing her off against me by trying to put things into her mind whilst I wasn’t there about what she could and couldn’t do
since then she’s had a steady decline
We have now been told that they have applied for funding for a nursing home as they agree she isn’t well enough to come home but again “fit” I’ve been told this has been accepted and I originally was told I had a choice where she went now I’m told I don’t and today again they spoke to my mum without me being present and gave her little choice to agree to being moved to a home they even showered her after not having one for a week to make sure they could tell the home she was ready to leave… and they have already spoken to the home before I go and see them on Saturday about her leaving to go there
I asked for and have asked numerous times for a call from a consultant as an update but instead they waited until this evening for me to get there to have the discussion infront of my mum as they know I won’t say anything infront of her she just nods and agrees
I just think they only care about bed days, money and how many patients through the door… I’m fuming at the way we’ve been treated this is a hospice where their strap line is compassionate care for you and the family
I’m worried moving her is completely the wrong thing to do she’s dying and maybe not immediately but still dying and I thought that’s what a hospice was for…
I’m disgusted at the treatment I feel they want her out as she’s overstayed her welcome I was told coming into the hospice 4 times is not always a good thing? They’ve completely disregarded what I want or my feelings she always said she wanted to die there but I feel they are forcing her out now and that won’t happen
sorry for the rant x
Hi KB1978
So sorry to read your story, your mum and the issues around the hospice. I am sure they are trying their best but rather like the hospital I am sure you realise their resources are limited, from what you say though it does sound like things could have been organised and communicated better.
In the last years of his life my dad tended to sort of ping-pong between a hospital and a care home but in the last few months he had to go to a specialist care home because his needs were high but not in need of a hospital type service. This puts people in something of a limbo of "care" falling to their local authority rather than the NHS - and it was a real nightmare. We were lucky with my dad in that my sister had lasting power of attorney and so the hospital had to listen to her - though acting on that was not always easy.
<<hugs>>
Steve
