Well hi there to all my mates and ta lots for all your kind wishes.
Yep! I had a bootiful rest, with craft sessions and pamperings galore!
Jacuzzi baths, power showers, folk washing me in places I`d better not mention!
Aromatherapy massages, chefs asking what i`d like to eat and making wonderful food…yes I hardly wavered from my diet!
Doctors and nurses offering all sorts of pills n potions!
m afraid there is a MASSIVE but`.
The medical Director came to see me a day or so ago.
After asking me how I was and how things are with my dx. I told her the whole sorry saga.
Another doc present at the time, took notes and between us we cobbled a letter together, which has gone to my neuro at halifax hospital… BTW my GP is still trying to get to know why Dr Lily at Leeds, discharged me without seeing me. I have said i`d like to have genetic testing, to see if they can find any naughty genes which belong to HSP. The letter also asked if I could be seen by the neuro in charge at Halifax, when I go for my October appointment there, rather than a registrar.
Now , here comes the big BUT;
The hospice gets a chunk of much needed dosh from the NHS, which they combine with donations and money from 11 local charity shops, to run the hospice. and the NHS have made some changes to the criteria for admitting respite patients.If these changes aren`t implemented, then they will withdraw their dosh.
This means from now on, only folk who need palliative care/end of life nursing, will be admitted for respite.
Luckily, I do not fit the new criteria, but I will miss it so much.
The staff are such wonderful angels, who made mine and Graham`s life so much easier, as the breaks did both of us good.
I have had 4 weeks stay in 2 years, so I appreciate that very much. It was all free and I showed my gratitude in donations of home made quilts, cushions, cards and money…that wasn`t homemade!!
So I left the hospice today in tears and with a lump in my throat. Many of the nurses hugged me and said how much they will miss me.
Right what do I do now? well, I don
t let the grass grow, as ive applied for funding from my Direct Payments team, to part pay for a hol in Blackers or Southport.
Anyways, here I am, back to add my two pennarth to the forum. Glad to be home.