At the mercy of others

My husband was due home today following a stroke.  We were told last Friday that the care agency used by the local nhs trust had accepted him.  The stupid system requires you to ring on the day and if the agency has capacity it will happen that day.  The hospital rang today and were told that they would not after all accept him. I had told him it would be today and I was really geared up for it. I have a small house which has been completely taken over by bed and various other pieces of equipment to the point that I have a corner of the living room to myself.   How dare they treat people like this. We are not a product to be discussed and pondered over and our fate decided by health and safety, protocols and people justifying their salaries.  We are human beings with feelings who are going through a very very difficult phase in their lives. The OT dramatises everything and has now insisted that we have a hoist as well just in case. My poor husband is being lost in the system. They are going to put together another ‘package’ I suspect Amazon could deliver it better than they. He is gradually losing heart and seems to me to becoming accepting of the system in the ward this is despite me doing a 52 mike round trip every day and being with him from 11 to 6.30 at night.  His mobility is suffering as their is no proper physio only a short time in the morning and then he is left in a chair all day.  This sounds a bit like a rant but I am angry that they are leaving him somewhere where he has no chance of improving.  Do stroke survivors rally when they get back home as I believe that being happy is a big motivator for recovery to whatever the optimum level is 

Hi Florence. I am really sorry for the situation you are in, but you do not say much about your husband’s condition. I had my stroke two years ago and physio at the hospital was excellent. Before I was allowed home I went on a home visit to assess my needs. Age U.K. put an extra rail up the stairs, a hand grip at the top and bottom and a seat in the shower. I knew I had to sleep downstairs for three weeks, but I had physio every day for a month from the Community Stroke Team. They taught me to climb the stairs and manoeuvre round the kitchen.

I was desperate to go home so, once there, I did improve a lot. However, everything depends on the individual and their determination. My partner joined a carer’s Group early on and that was a great support. He also had to cope with my early changes in mood....depression one minute, frustration the next, foul temper the next. However, my moods are more stable now and I have learnt to be patient. Do contact the Stroke Association for advice and support. They are most helpful. I hope things improve for you both.

Thank you for your message   My husband could walk with a rollator and was moved to a rehab centre  he was only there a week when he got a chest infection and this put him back in hospital  he has no paralysis just weakness on the left but cannot stand independently because the middle bit of him is really weak and this is the stability bit  I am I frustrated because he was using a Sara steady in hospital but did not always make it the first time   When he sat down again and tried a bit later he made it up   Because there is no time in hospital for this sort of thing they have started to hoist him everywhere which has set him back   Physio has not been forthcoming as he is on a general ward as the stroke ward said he was not bad enough for them   At least at home we should get some physio from the team and I can pay for an extra session    The Carers team want to maintain this type of transfer and I am frustrated that they won’t even let him try   I don’t now how long it takes to get just a little bit stronger but sitting down ina chair all day is knocking him back. 

You a right. Sitting down all day will not help. I had my stroke at 72, so needed constant exercise to build up stamina and lost muscle power. I still go to exercise classes three times a week because I really need to keep working at it. Would talking to your family go help? They can refer you on to more help, I believe. However, health authorities vary enormously. Do phone the Stroke Association helpline. I am sure they would be able to advise you.

Dear Florence

It is hard enough to negotiate the stroke pathway (whatever that might be) without the nhs failing him. There is precious little the nhs can do for those of us lucky enough to receive good care. 

I certainly did not rally when first getting home. I had a difficult time dealing with the place where I fell with the stroke. And I missed the hospital routine. Then things got better bit by bit. So dont get despondent if the homecoming is not what you hoped for. Things will improve its just so slow.

I take it that hubby is not mobile. I would hope he can transfer, otherwise it will be a big struggle at home. And he needs to take a bit of control himself. No one else can make him better, it is down to him (and me). Having a supportive wife helps but even you cant make his brain work for him.

Please also look after yourself. I insisted that my wife had time away from every day. At first that was having coffee/lunch in the hospital canteen and not chaining herself to my bedside. When I git home I insisted she went out each day. Couple of hours to start with, then half days then whole days. Carers need to be fit in order that they can care for us. Also, lokking after myself is helpful. I can sort out my errant brain and I get a kick out of managing for myself.

The local stoke groups might be a good place to run to. Its good to be with other stroke survivors and with people who understand. Hopefully they will also have sessions for carers, where you can compare notes and get tips.

Lots of us are here for you


Hello Florence,

You're exactly right in the things you've said. I've just had a stroke over in Belgium, and my treatment and after care were exceptional! Then I returned to the UK, and it's a lottery ( depending where you're living), I've been back here now for almost 6 weeks, sitting at home and I haven't seen a stroke  consultant yet! All I really want is for an expert to explain, why my stroke happened to me and what precautions I should now be taking ,and to come into contact with other SS. But absolutely nothing. So here I sit getting on with my Stroke by myself. But I decided to do some things myself. I'm making an effort to live more healthier and I've arranged to meet other SS at a group that meets once a month. If only I could get some support locally, even a visit from someone would be nice. I just think it's our system over here.



Have you rang the stroke association main telephone line they will put you in touch with your local group, who will assign stroke coordinator. Not all areas are lucky enough to have one but you never know you may have.  They will talk to you and try to help as much as they can.

I am in Norfolk and can't praise the stroke unit at the Queen Elizabeth Hosp even if they have been place in special measures!   I was readmitted within two weeks and got the same excellent service as the first time from the Stroke dept.

It is a learning curve, I was off work for over a year and have just returned for 5 hours a week, its not a lot but it has had a major impact on my mental well being. There is light at the end of the tunnel but it takes time.  It took me a long time to accept that it had happened but once I did things became easier.

Good luck, if you need to rant or just ask questions, then keep using the forum.

Good luck]


Hi Florence

I'm sorry you're experiencing all these problems since your husband's stroke - stroke happens so suddenly and then you're met with all these challenges of having your husband home, with full therapy in place is extra difficult for all involved.

As mentioned earlier, you could contact the stroke helpline who will be able to talk you through the process the hospital should be following to discharge your husband. The Helpline's details are telephone - 0303 3033 100 or email

You could also take a look at the Friends & Family section of this site, which provides some clear and useful information -

I hope this helps.

Take care