I watched the news update by Matt Hancock last night and just shook my head with dismay. Don't get me wrong, I am sorry for all the people who have had Covid and have lost loved ones due to it. The new Long Covid Centres that are going to be built to help people suffering from long term fatigue from it.... would the government have done this for stroke patients or indeed any other patients suffering from conditions that cause long term fatigue? I doubt it.
Their purpose of being built is to help victims of any future pandemics as well as this one who suffer from fatigue long term. It would be very nice if they invited stroke victims along in the meantime whilst they are waiting for another pandemic to arrive or will they lay empty gathering dust like most of the Nightingale Centres that they built to house patients if a second wave happened... Well, the second wave is here yet the Nightingale centres are still laying empty whilst the normal hospitals are cancelling operations because they are full. My local hospital is full to capacity with Covid patients yet 10 miles up the road there is a Nightingale Centre empty.
Did anyone hear the report by NICE regarding long covid etc ?
it seems they home in on ME and covid. But us stroke survivors don't get a mention. I have been hoping that this reaearch might give us some help, or maybe just some hope.
long covid sounds exactly the same as SF but I guess SF isn't glamorous enough.
anyone reading who has had a stroke since spring 2019 ish, you seem to be totally ignored. I do feel for you.
I have contact with a few stroke sufferers in the pandemic, and the level of care is much worse than when I had a stroke six years ago. The aftercare is non existent.
mind you, the pandemic has devastated most communities and people don't seem able to communicate. Not just us SS.
when my aftercare finished, which was six weeks after hospital discharge, I really did feel as though I had been on a cruise ship in the Pacific and then set adrift in a row boat. The nightmares and indeed night terrors, were horrific, especially the rowing boat.
But I could get to stroke groups and to group therapies. And even GPS. Whatever is going on nowadays.
to be honest, I don't have much idea how the site works today so I doubt I will grasp a new site. It seems that few people understand we are stroke damaged.