We are in the same position. DH had a brain bleed 12th Feb 2025. NHS stroke ward was so understaffed that if they managed to get him out of bed at all, it was sometimes not till the afternoon. If he soiled his pad he was offered the choice of going back to bed for a change and staying there for the rest of the day, or sitting in it if he wanted to stay up. NICE guidelines say 3 physio sessions a day, he was offered two a week.
Moved to the rehab unit after 5 weeks, same dangerous understaffing. One evening I found there was just one auxilliary as the sole member of staff on duty for 25 bedbound patients, unbelievably dangerous. I took out money on the house and moved him to a private hospital. Wonderful care but absolutely nothing for him when he got home.
He was left with no movement down his right hand side, and although his speech had improved, he lost it overnight, so cold not tell me what he needed. He was using a conveen at night at would sometimes pull this off and wet the bed. Changing the sheets on your own at 2.00 am for a patient who cannot move is not easy!
He has choking sessions, so cannot be left to eat on his own. Sometimes diarrhoea, which means getting the bulk off pants and trousers and rinsing them out before washing them. He has a persistent cough which makes his bad leg fly up in the air and land in painful positions, especially at night.
I had to fund a stair lift, an electric wheelchair, a converted shower room, an electric bed, a converted downstairs loo, a ramp to get in and out of the house, and two shower chairs to roll over the loos upstairs and downstairs. The only things the NHS provided were two transfer hoists. They lost his physio referral and it was 6 months before they gave him his statutory six sessions.
So I had to pay for a private physio too, at Ā£139.00 a session.
The NHS provided 4 weeks of carers, they said he needed two carers three times a day. When that stopped we were in our own. At first I paid for two calls a day, before we cut that down to one so that he could go to bed at the time of his choosing. Now I do the lot.
We did apply for CHC funding, but at the assessment a physio turned up late, took over the meeting and dismissed everthing we said, she said the money should go to those more in need!
He has improved, 11 months post stroke he started to walk a little. It is still very slow, a huge effort dragging his foot, using a quad stick. He can operate the shower himself and pull down a towel to dry the bits he can reach. His speech overnight is usually okay now, although a recent cold and UTI knocked it off again. He can use a pee bottle on his own in bed, so I don't always have to wake up for the three or four wees a night.
His cognition is fine, one blessing, but we both feel it would have been better if he had not survived. He would have escaped the past 20 months of frustration and despair at his condition, and I could have been starting to rebuild my life.
