Visit to Stroke Team Consultant tomorrow … need urgent help re questions to ask and what they might ask/do HELP!
Bullet point list of ‘To do/ask’ would be excellent if anyone is online.
Remote caring for a Relative who Ive had to get Solicitors involved re her abusive Carers. All got too much tonight, and brain has scrambled.
Any ideas? 
😵💫
At my review stroke consultant went through what had happened in more detail than when I was on ward. They also asked me how things were going and checked me over for weaknesses etc. They also went through what had happened in days before stroke as my stroke cause is usually causes by trauma which hadn’t happened in my case. They reviewed my blood results too…these were bloods taken when I was in hospital.
The questions I asked were around why I had had a stroke as I had no stroke risk factors and am 49 so young for stroke. I also asked about my likely recovery and timescales etc. Depending on the severity you might want to ask about care plans. I also asked what happens next. I wanted to ensure I knew what to expect going forward and when I could expect it.
Don’t know if this is any help?
Hope it all goes ok. XX
Hi @Mrs5K
At my review stroke consultant went through what had happened in more detail than when I was on ward.
Well that’s good news tx
They also asked me how things were going and checked me over for weaknesses etc. They also went through what had happened in days before stroke as my stroke cause is usually causes by trauma which hadn’t happened in my case.
Again, thankyou, that will be something I can think about but it’s all a bit of a blank post/during
They reviewed my blood results too…these were bloods taken when I was in hospital.
Good to know. Although I wasn’t very confident re the ‘Dr’ (knew nothing about Strokes/TIAs, I saw in the ‘Holding area’, yes it was really called that! No Nurses, no alarm/call bell, left for ages without being booked in…v traumatic experience. No water, meds, food all day. Just ignored. The trauma Included a health care assistant kicking the trolley I was on, and I asked her why she did that and she tomped off! She wasn’t even involved in my care 😵💫😵💫
They tried to make me sit in a wheelchair so new ‘cattle’ I mean persons could be brought in from ambulance queue…I have to lie down now for many reasons,so stood my ground (well I wasn’t standing but u know what I mean). Another Nurse shouted at me, paramedics were trying NOT to admit me … waited 14 hours thru eve and night for them to turn up 
Am traumatised. And I had to fight to have the CT Scan done of my head, my GP had requested this AND my Spine … but finally after c.7hrs again being stoic they did JUST the head scan**
The questions I asked were around why I had had a stroke as I had no stroke risk factors and am 49 so young for stroke. I also asked about my likely recovery and timescales etc.
Good points 
Depending on the severity you might want to ask about care plans.
Thankyou, I will, but the Stroke I had 1.3 years ago I had zero support afterwards, got to top of ‘waiting list’ a month ago.
I also asked what happens next. I wanted to ensure I knew what to expect going forward and when I could expect it.
Yes, very important will do
Don’t know if this is any help?
Hope it all goes ok. XX
Bless you, this was extremely helpful @Mrs5k and huge thanks for responding so quickly, thankyou for your kind wishes XX
I’ve had a couple of other thoughts…if its not too late.
What do I need to do if I’m worried?
What constitutes the needto be worried? E.g. if my BP goes up today should I be worried or do I only need to worry if it stays raised for a week.
Good luck xxx
Good to know. Although I wasn’t very confident re the ‘Dr’ (knew nothing about Strokes/TIAs, I saw in the ‘Holding area’, yes it was really called that! No Nurses, no alarm/call bell, left for ages without being booked in…v traumatic experience. No water, meds, food all day. Just ignored. The trauma Included a health care assistant kicking the trolley I was on, and I asked her why she did that and she tomped off! She wasn’t even involved in my care 😵💫😵💫
This is very similar to the experience I had on my 2nd visit yo A&E. 17hrs I was in A&E & after I’d had a scan they put me in a chair in their “fit to sit” area and left me to it. I also had no food, drink or meds. When I asked if I could have some water they said no as I’d not had a Swallow test - I’m still waiting that test. It made me laugh as when I got to ward it was lunch time & they fed me…no questions asked. I also waited 1 1/2 hours to be taken to toilet ! Stroke ward were great though. Only A&E that wasn’t.
Txx:pray:
much appreciated
Wow! Unbelievable eh? I’m so sorry that you had that experience too. No, just waiting for patient transport to pick me up and trying to rush some notes/questions together! 😵💫
Tx @Mrs5K I appreciate you reaching out, especially re what to watch out for. 
Disastrous appt the consultant didn’t even examine me, no tests, and it wasn’t even the one I was supposed to see. Sigh. And so it continues Groundhog day/Life. Tx4 your ideas @Mrs5K.
@ZX1 oh no that’s a shame. Were you able to ask anything? Hope you can get some answers soon. Maybe try GP for advice? So sorry it didn’t work out ad you’d wanted. Stay strong. You’ve got this 
Hi @Mahoney, am heartbroken…gone round completely in a circle from last March ….when had first stroke. He didn’t do any tests or examine me yesterday…complete waste of mine and nhs time. He didn’t read the notes I’d made as I was finding it hard to speak.
And then I was left in a room, and no one answered the bell, so that a I could go to the loo, due to needing wheelchair as unsteady, and also book patient transport to escape to go home.
I had to zig zag across the room which in hindsight was dangerous, holding onto whatever furniture was available … made it to the door, and as it was a Sunday it took ages for someone to walk by … then I just called out to the next person for help who just looked at me 
in shock as if I’d deigned to speak to him, think he was an off duty consultant, can’t be sure.
But then all at the same time a healthcare asst turned up AND patient transport who’d been Sent all round the hospital to find me … except the obvious place the TIA/STROKE Clinic!!
Makes me wonder how many others are stuck in rooms crying out for help for days (or worse) even!! Complete torture camp at my local hospital.
V distressing. Also, don’t think I’ve mentioned on here that I have an Aspergers diagnosis (about 6 years ago, am a young in spirit 60 now, spirit feels 30, body feels 90) … nhs staff treat me as if I’m a child, have Alzheimer’s or as a non person. I have a genius IQ (xcuse th pun: not being big headed) and have held high level jobs thru life. I love having Aspergers…it’s the lack of respect and complete ignorance of what Autism is that gets me. GP Surgery, ‘Rehab Team’, Council OT’s … all ‘broken’ here where I live and with the ‘labels’ I have of eg Autism…I really feel I don’t stand a chance.
I really don’t know what I can do. I’ve paid to see a consultant in past Private basis (for other chronic conditions I have) … but a lot of them won’t think outside the box, or disagree with nhs diagnosis/non diagnosis… they don’t want to upset their peers that they work with in the NHS in the adjoining building!
Anyway, am in bed crying listening to Whitney Houston (80’s were my best decade).
Thanks @Mahoney
Hi @Mrs5K Am heartbroken…gone round completely in a circle from last March ….when had first stroke. He didn’t do any tests or examine me yesterday…complete waste of mine and nhs time. He didn’t read the notes I’d made as I was finding it hard to speak.
And then I was left in a room, and no one answered the bell, so that a I could go to the loo, due to needing wheelchair as unsteady, and also book patient transport to escape to go home.
I had to zig zag across the room which in hindsight was dangerous, holding onto whatever furniture was available … made it to the door, and as it was a Sunday it took ages for someone to walk by … then I just called out to the next person for help who just looked at me in shock as if I’d deigned to speak to him, think he was an off duty consultant, can’t be sure.
But then all at the same time a healthcare asst turned up AND patient transport who’d been Sent all round the hospital to find me … except the obvious place the TIA/STROKE Clinic!!
Makes me wonder how many others are stuck in rooms crying out for help for days (or worse) even!! Complete torture camp at my local hospital.
V distressing. Also, don’t think I’ve mentioned on here that I have an Aspergers diagnosis (about 6 years ago, am a young in spirit 60 now, spirit feels 30, body feels 90) … nhs staff treat me as if I’m a child, have Alzheimer’s or as a non person. I have a genius IQ (xcuse th pun: not being big headed) and have held high level jobs thru life. I love having Aspergers…it’s the lack of respect and complete ignorance of what Autism is that gets me. GP Surgery, ‘Rehab Team’, Council OT’s … all ‘broken’ here where I live and with the ‘labels’ I have of eg Autism…I really feel I don’t stand a chance.
I really don’t know what I can do. I’ve paid to see a consultant in past Private basis (for other chronic conditions I have) … but a lot of them won’t think outside the box, or disagree with nhs diagnosis/non diagnosis… they don’t want to upset their peers that they work with in the NHS in the adjoining building!
Anyway, am in bed crying listening to Whitney Houston (80’s were my best decade).
Thanks @Mrs5K sparkling_heart:
@ZX1 that whole experience has to have been quite distressing for you, next time you have an appointment at the hospital perhaps you can take someone with you, I appreciate covid restrictions may mean hospital staff don’t want another person with you however given your circumstances, they may let a nominated ‘carer’ be with you.
I was going to suggest having a private consultation, if you could afford it, but it seems you’ve had no joy following that route either.
What was the end result of the appointment eg we’re you discharged back to the care of your GP or did the stroke consultant say he wants another follow up appointment with you?
What is it you want to know? Is it why you had a stroke? Sometimes there is no explanation as to why one has a stroke.
Is it what happens next? Are you still receiving physio, sometimes physio after stroke on the NHS only lasts for a short period of time eg 6-8 weeks.
Have you contacted the Stroke Asociation for advice? Is there an Asperger’s charity that you can contact for support with that aspect of your health?
I can only offer words of encouragement, stay strong, stay positive and keep pushing for the answers that you want.
Best wishes
@ZX1 I’m so sorry you’re feeling so despondent. It sounds like a very unsatisfactory experience for you & I really feel for you. Did they say whether you would be seeing them again or have they discharged you back to your GP? You could contact PALS at the hospital to complain & ask them for help. I would also give the stroke association a call. They will be able to advise on what you can do next.
Try & stay strong.
Hope you feel a bit stronger tomorrow. Sending positive thoughts & hugs your way.
Re:
I’ve had a couple of other thoughts…if its not too late.
What do I need to do if I’m worried?
What constitutes the needto be worried? E.g. if my BP goes up today should I be worried or do I only need to worry if it stays raised for a week.
Good luck xxx
Tx again @Mrs5K … no, it was disastrous… long story, don’t want to depress people … suffice to say, complete waste of time (10 min appt during which Consultant spent 2 mins Speaking with an in patient query on his phone that had rung! Wasn’t even urgent. Wasn’t even the consultant I was supposed to see.
No tests done, no explanation or advice, he didn’t read the stroke assoc booklet areas that I’d highlighted so I dint have to speak much. no examination! Left me in a room lying down, with a wheelchair beside me with brakes off. Rang alarm bell as needed to go to loo … no response. So, after some time, Famongst my Tia ‘fugue’ I decided it was a good idea to hold on to the wobbly wheelchair, and ‘zig zag’ across the room, holding onto any surface to get to the door. Not good in hindsight. The TIA/STROKE Clinic has no reception bizarrely either …. You just have to ‘wait till someone turns up’ and that’s a quote!
Have just put PALS compla8nt in, but it all takes so much energy. And it’s so traumatic to keep going over the same story again and again.
So, am none the wiser, never going to that Clinic again. Total waste of my time and NHS resources.
Thankyou for being there, it really made a difference x
Re:
I’m so sorry you’re feeling so despondent. It sounds like a very unsatisfactory experience for you & I really feel for you. Did they say whether you would be seeing them again or have they discharged you back to your GP? You could contact PALS at the hospital to complain & ask them for help. I would also give the stroke association a call. They will be able to advise on what you can do next.
Try & stay strong.
Hope you feel a bit stronger tomorrow. Sending positive thoughts & hugs your way.
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Again sorry not to have replied sooner, not too well and trying to detraumatize, so good of you to reach out, thank goodness for this forum
Hi @Mahoney
that whole experience has to have been quite distressing for you, next time you have an appointment at the hospital perhaps you can take someone with you, I appreciate covid restrictions may mean hospital staff don’t want another person with you however given your circumstances, they may let a nominated ‘carer’ be with you.
Unfortunately I’m currently not in the position to have someon3 with me … good idea tho … LOADS of appointments, hospital,gps, etc, etc, and maybe one or two am accompanied…still not always effective having someone with you. Am working on getting some kind of support re that. I honestly don’t feel like going near the NHS anymore, but feel trapped in the system.
I was going to suggest having a private consultation, if you could afford it, but it seems you’ve had no joy following that route either.
If I became wealthy I’d be straight into a Private Hospital/Complementary Therapy long term treatment centre no doubt, and I’d fly there on my private helicopter (offsetting my carbon footprint of course). Yes, very cliquey where I live … not very professional eh?
What was the end result of the appointment eg we’re you discharged back to the care of your GP or did the stroke consultant say he wants another follow up appointment with you?
He didn’t say 😵💫:scream: … ahem, no comment.
What is it you want to know? Is it why you had a stroke? Sometimes there is no explanation as to why one has a stroke.
Is it what happens next? Are you still receiving physio, sometimes physio after stroke on the NHS only lasts for a short period of time eg 6-8 weeks.
I’m going to contact a senior consultant on the team when feeling stronger, that diagnosed my stroke last year and ask these questions, as he’s the only one that makes ANY sense and seems to actually CARE about people and their future.
Have you contacted the Stroke Asociation for advice? Not yet, been too traumatised to talk about it. They are an excellent support though.
Is there an Asperger’s charity that you can contact for support with that aspect of your health?
**Em … no.
The NAS don’t even have an info Helpline anymore. Support for Adults with Aspergers (especially Aspergians out working/at College etc is minimal, probably non existent now., UK wide. I think if I found (don’t laugh) an (appropriate) group that played ‘dungeons and dragons’ for example, I’d feel way better than going thru the Trauma of the NHS. 
Physio so far has not taken off, had to cancel as too ill, and referral made for just ONE part of the body, rather than holistically. Also, the stress of going 8nto these environments now can’t be helping my long term health. I have to ge5 a stretcher to/from in an Ambulance.
I can only offer words of encouragement, stay strong, stay positive and keep pushing for the answers that you want.
Huge thanks @Mahoney, you really do offer such amazing support thru this site for everyone. Hope all well,
Best wishes to you too 