Can it be right that after my husbands massive SAH and stroke in October last year, he has never had a follow up appointment. One was scheduled for this Friday, cancelled and re booked for July 19th, now cancelled again and is now on 4 October, almost a year to the day from his initial collapse. He has not seen a neuro doctor for a proper appointment in all this time, just a couple of visits to check on his meds, whilst in A and E with infections earlier this year. He is still awaiting the operation to replace his skull bone after the craniotomy, and is still waiting for an appointment with the neuro doctor re his seizures.
Do others feel that once you are discharged "that's it" you are on your own, get on with it. Steve has had several other medical issues in this time, kidney stone operation, blood clots in his lungs for which he is on Warfarin, continuing pain in every joint in his body (or so it feels) and continuing pain from the kidney op. He has made very little progress since discharge from hospital in February, his mobility is poor, and he has no real use in his left arm and hand.
Life is so hard, and no one seems to care.
We are hoping to attend our first Headway meeting tomorrow evening in Hull, and really hope to meet some other people who can empathise and share their stories.
Written by
Molly15
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Hi Molly. Sorry to hear your husband hasn't had follow up. It sound like there's a cock up in the booking office, not necessarily the hospital itself.
If you phone the consultant's secretary explaining to her what you've explained to us, she should be able to set up an appointment much sooner. October is ridiculous !
Will you let us know what the outcome is ? Best wishes xx
Hi cat, Thank you for replying. I have already done this, but she has advised to ask our gp to expedite an appointment sooner. We have an appt. with him on Thursday, so will hopefully get somewhere through him.
No matter how we try to think positive and not get down, time after time something else happens to make the situation worse. Steve is in bed now, trying to rest, but whenever he does that, he just ends up crying, because he cant stop thinking about our life now, compared to how it was. He cries a lot. Ive tried being sympathetic, which of course I am all of the time, and Ive tried to brush it off, and tell him to stop it, and be positive, but I know he cant help the crying. But it means we are in a permanent state of tears and feeling low, and just cant seem to find anything to bring ourselves out of it. Im putting a lot of faith in our visit to Headway tomorrow evening, I really hope we get to talk to some others in our situation, who can give us some hope.
I feel like all I do is complain about the way things are, there don't seem to be any positives for us, but I have to hope there will be soon
Oh Molly I'm so sorry you are both having to struggle so much for basic, essential care. My first follow-up was within three months & I can't understand why you're receiving such shabby treatment.
To be given a follow-up a year later is just neglect.......plain & simple. It makes me furious when I hear such stories of NHS decline in certain areas & it would be unnecessary if government would stop pouring money down the drain.
Good luck with your GP (although I can't believe the secretary couldn't make a space......all things considered). But I think, at this stage, I would be speaking to my MP ........representing our interests is what they're supposedly paid for.
Thank you cat, I know what you are saying is right, but I feel I have no fight in me, Im so worn out with just surviving every day. I keep meaning to telephone Headway and talk to someone there, but every time I think of it, I know I will just cry and its so hard to talk then! We will get there, I know it, but it is taking so long.
We have made the decision to move back to the Midlands just as soon as Steve has had his surgery, and is up to all the upheaval, probably in the Spring, at least then we will be close to family and support. This is what we are missing at the moment, and it will make all the difference.
I am amazed at your situation and how you cope, your daughter has been through so much hasn't she. Life is so cruel.
Has there been any help since discharge - physio, OT, etc? As it sounds like he still needs that, plus neuropsychology, but that's not available everywhere, certainly not where I live. My boyfriend Richard has had one neurology follow up since leaving hospital last August, and has his 2nd this August (we've also had a cancellation though), and I hope it's not cancelled again as Richard has now had a seizure too. But I certainly don't feel like we've been forgotten. we had a few weeks of community physio and OT on discharge, a few other local schemes (not sure on effectiveness but it got Richard out of the house a bit!). Now he has Outreach help from Homerton hospital for a few months but we had to wait until the new financial year for funding. But whilst in hospital we had a good discharge plan, and whilst I think the help could be more consistent it is there.
So I guess I'm saying compared to our experience you do seem to be just left high and dry. Certainly talk to Headway, don't put too much hope on the first support group but I think you will find that in time it will help. If there is a day centre nearby I would ask them to start the referral process now, as it takes a while, but once there it will give your husband a bit more structure to his week.
Also have you checked if there are other schemes in your area? Richard goes to a stroke swimming club and to the gym (a carer takes him).
I think that after discharge recovery is slow but can definitely still happen, it's frustrating when services are cut as if there is no therapy then how does someone recover?
I wish you luck, be positive, complain, there is help out there!
Hello Paula, That is a very interesting message, thank you so much. It has given me something to think about, and I will try to find out about more help in our area.
We did have physio and OT help when he was discharged, and the physio has been planned but cancelled so many times due to other illnesses that have cropped up. We have now been twice in succession, so hoping that we can settle in to some serious sessions, although at the moment they are only about 20 mins twice a week.
The swimming would be great, not sure how he would manage with having such a left sided weakness but again its something I need to find out about.
The neuropsychologist at Hull has left now and is on maternity leave, with no plans to replace her, but we are awaiting an appointment with a counsellor, but again its a long time coming. Maybe we are a little to impatient, but it always feels like nothing is ever going to happen.
It is so comforting to receive these replies, and to know other people understand and empathise.
Good luck to you two, and I look forward to hearing from you again.
Richard has left sided weakness too, and is ok with swimming. It is in the learner pool, he has help getting into the water and uses floating aids, and does a bit of swimming using his right arm. He also has an exercise routine for the pool.
I don't think you're being impatient, obviously you've had medical complications but I feel there should be more help out there for you.
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