This was in our local newspaper today

[Ratcliffe]

I read this about a PSP sufferer who was kicked out of his nursing home. I'm so angry

leicestermercury.co.uk/news...

[Kevin_1]

Hi

That's grim!

I do hope they make a complaint to the CQC.

I can understand their decision to downgrade to a Care Home, but.... planning and responsibility?

It sounds like he needed to be in a hospice anyway. Where were the NHS in all of this?

I hope your doing OK.

Best to you

Warmly

Kevin

[AliBee1]

That is disgusting.

I have a friend whose husband has PSP (she is not on this forum) and her husband was due to go into respite for a week in December but she was told that his usual nursing home could no longer take him because he needed two people to move him. It is the home organised by our local hospice for him as they can no longer provide bed care due to funding.

What are care homes up to?

Luckily the home he goes to for day care took him for 4 days so she did get her break. What are care homes doing?

AliBee

[Dadshelper]

That is horrible. When I was looking at nursing homes for dad I found not all are equal by any means. Some only took certain types of patients, other only offered certain types of care. I talked to a dozen facilities and visited 7 of those before making a decision.

Ron

[Katiebow]

Disgusting and heartless, call themselves a care home. I think Kevin is correct in saying needs hospice to take over the care but shouldn't there be communication between the various agencies to ensure a sufferer isn't left high and dry without proper care. What sort of a world do we live in!

Aside from that I hope you are coping Derek, it's tough isn't it?

Love Kate xxx

[Spiralsparkle]

I saw this article on Facebook it made me upset & angry too. I saw his photo before reading & thought he had PSP or CBD just by the look of his face.

Like others have said why weren't all the agencies talking to get this sorted for the best interests.

How distressing for the man and his family in his last days. That will stay with them forever.

Here demand for beds is greater than availabiliy for hospice.

It is a sad state of affairs when people are at their most vulnerable.

[Ratcliffe]

Hi all, thanks for the replies. It does make you wonder why there wasn’t anything going on behind the scenes, but it does seem to be left to the families in so many cases.

Whether that’s just financially overstretched authorities, or there still not being the knowledge of how PSP/CBD and their variants progress and develop within these agencies I do not know, but it’s still heart wrenching.

As Spiralsparkle said, I saw the picture and just knew he had PSP even before reading the article itself. It’s amazing how we just know, but I guess even after the event, we are still slightly in carer mode and looking for symptoms etc.

Thanks for asking after me, I’m doing OK, as I said before Christmas, I decided to shut myself off from a few things for a bit because so much stuff was getting in to of me, but I’m working through it, and slowly getting there.

I just need to do the obligatory diet now again 😂

I hope you are all doing OK!

[Heady]

What upsets me the most is, they see this poor man, who obviously can not communicate at any level and presume he is not aware of any of his circumstances. We all know this is so wrong! I bet he knew everything that was going on.

Lots of love

Anne

[salem16]

Justified your complaint. Not many know how to care for psp. Seems they not want to learn. Sad.