Hello, my husband has primary progressive MS and was admitted to hospital on Saturday evening. He has a bladder infection, sepsis and heart failure was mentioned. Due to coronavirus I wasn’t allowed to go with him in the ambulance as patients only are allowed in. I phoned the ward on Sunday and they said he had a bladder infection, sepsis, etc and was quite poorly. No visitors allowed. At 7pm I had a phone call from a doctor asking if he had agreed not to be resuscitated and as he has never said what his wishes are what did I want them to do if he collapsed during the night. She painted a grim picture so I asked if I could see him and she said agreed. I went in and found him in a side ward as his symptoms were similar to coronavirus, short of breath, crackling chest, very hot, coughing, but he is always like this. The nurses said they didn’t know much about MS and they were going to help him to walk to the toilet until I said he needed a wheelchair. I phoned today and was told his parameters were within limits - whatever that means. Asked if I could visit but told no. I explained to the nurse that his phone was on the chair beside the bed and she said she would help him to phone me. She said he had been asking for his glasses, I said these were also on the chair beside the bed. That was that, there was no phone call from him. I phoned his mobile but it went to voicemail and have texted twice but no reply. Why can’t carers be allowed in to help? I have been worried sick all day. I do appreciate that the NHS staff are concerned mainly about coronavirus and they are overworked. I wish he had been able to stay at home and am also very worried how much worse he will be when he gets out. Last time he was in hospital with an infection his muscles had become much weaker as he had not been out of bed for 2 weeks (he could still walk a little then). I am sorry this is such a long post, I don’t have anyone else to ask for help.
Ah hello sweetheart.
I really feel for you in such a difficult situation.
You must be going spare with not knowing what`s going on.
It isnt good enough that your hubby isnt being helped in the way he needs.
He will also be worrying about you.
Try ringing the ward sister…riing someone in authority
Agree with Bouds. Sending hugs. Anne x
How are things now love?
Thank you very much for your replies. He has a kidney stone blocking a tube in his kidney but because he is still on IV antibiotics for an infection they don’t want to do anything yet. Today is the first day they have put him in a chair, he has been toileted in bed, bathed in bed, fed in bed. At home he gets up and dressed himself, washes and shaves in the bathroom, etc. They are now treating him as bedridden. 7 years ago he was riding a motorcycle and was totally independent. I find it hard to accept how this is going.
Oh dear, I am sorry things havent improved for you nd your hubby. The kidney stone must be causing a lot of pain.
The thing with being in hospital is the staff will probably find it easier to just do everything for him. Why not intervene and speak to a ward manager?
Thanks Boudica, I feel like I’ve been complaining almost daily, I feel very protective towards hiim. I know they are under lots of strain with covid etc. Today when I phoned him he was even more fed up as they have now lost his teeth so he will be limited with eating. When he is at home I think it helps him to do things for himself, especially personal things, but now he has lost his dignity. I can only hope that his infection clears soon so that they can sort out his kidney and allow him to come home. My best friend also has MS and she always said she tries to avoid hospital at all costs and now I can understand why. Thank you for being so understanding and sorry about my moaning.
Hi mmk, please dont feel the need to apologise for
re not moaning...youre reaching out to those who understand.
I`m here to listen sweetheart.
I’ve just read your posts for the first time and I feel quite angry at the treatment you and you husband have received. The hospital have had plenty of time to rule out CV19 so don’t use that to excuse the lack of care.
It’s basic nursing to make phone, glasses and teeth available. The first thing that MS does is to take away your dignity but I don’t expect decent nurses to do that as well.
As for “his parameters were within limits” that’s just jargon. I’ve spent some time in hospital and even I don’t know what that means.
Have you heard of the Patients Advisory Liaison Service? The reception at your hospital should be able to put you in contact with yours. Tell them what has happened, why you are upset, and what the hospital is going to do about it.
And please let us know how you get on. We really would like to know that you and your husband are on the right path.
Thank you Anthony and Boudica for your comments and advice, I’m pleased to say he is now home. When I first saw him he was very different, lost lots of weight in his arms, legs and face, I think where they don’t allow enough time for eating, he has become slower over the last few months, plus loss of teeth. His muscle strength is much lower now and will hopefully rebuild over time. (He is a great fan of Mr Motivator on You Tube and his 10 minute MS videos). On looking through the paperwork they gave him on leaving there was a “Respect” form which had been completed on his admission 3 weeks ago. The doctor had ticked a box to say he did not have capacity and should not be resuscitated, they have done this twice before when he had been admitted with infections. He was angry today and said he would want to be resuscitated if it was needed. I sometimes think that when they see MS as a diagnosis they treat people with less “respect”. He will contact his GP to get this sorted out for future reference. He had not been shaved while he was in there and was badly in need of a wash. I really wish I had been allowed to visit during his stay to help with his day to day care as the NHS don’t have time. I will definitely contact PALS as he has mentioned others who were left in the same way on his ward. Thank you so much for being there during this stressful time, it has been a real help.
Nice response Anthony xx