My Experience living with someone with MSA

[Wythalbus]

My wife was diagnosed with MSA in late 2017. We joined the MSA group which was at the local Marie Curie Hospice. Had great support. Made decision to care for her at home. She spent last 18 months in hospital bed in lounge all equipt. provided Bed, Hoist etc. District Nurse got CHC funding in Oct 2020 & later had assessment by CHC team via Zoom with 2 people who had never seen or spoken to wife or Nurse and funding withdrawn. Wife died in Oct 2021 and only now 8 months since her death have the CHC responded to the appeal that we put in in Jan 2021. Had fantastic support during her illness but have to say that the CHC experience has been stressful and I think their organisation is not fit for purpose. I was just getting over the death of my wife when a letter arrived to say I had not responded to a non existent letter they say they sent in May 2022 and that my appeal had been cancelled. I gave them a strongly worded reply!!

[FredaE]

i am afrad yours is not the only experience like this ......isend you all commiserations

[Diane831]

I am so sorry that you have been through this experience. It is so unfair and I know that you are not alone in your experience. We did get the award with the support of the hospice team, but so many people don’t. I hope that you get an apologetic response to your strongly worded letter!!

[Kaye31]

That is so tough to read, so sorry for your loss and upset x

[Hidden]

Unbelievable!!! Why is everything so difficult. Peter wants to remain in his own home too rather than a care home. Who can blame him? I think CHC rely on families to pick up the slack. I still can't get my head around, how you assess someone with MSA via zoom? This is so awful for you. Thankfully your wife is at peace now. Try and look after you now. Kind regards Sharon xx