Hi all, sorry for not reply8ng yet to your kind replies … will do for sure. Been chaotic, ESPECIALLY try8ng to get a TIA Clinic appt (now three/four weeks later!) so not sure if going to help.
So traumatised by that hospital 
dread8ng going to appt tody.
Any tips re what to ask the c9nsultant? What tips? What tests to ask for? Going on my own and dreading it. What to exp3ct? Hope you’re all well and doing ok 
My experience of the TIA clinic was that it was like a conveyor belt as a group of us was moved from department to department for ultrasound scans, MRIs, blood tests and stuff. It took some serious organisational skill from the nurse who made sure that we each moved to the next step in our journey on time. She was the one with the most useful advice as well, in contrast to the consultant who seemed almost bored when I finally got to see him.
The gaps in the process came afterwards. I was ejected from up the hospital with my a prescription and little understanding of what would happen next. The letter sent to my GP lacked any real detail and communication with the hospital was virtually non-existent, so I ended up liaising between them to get my meds turned into a repeat prescription.
I was also frustrated that the NHS seemed to lose interest when I was out of immediate danger. I had been told that I had significant atherosclerosis in my let carotid artery, but not significant enough to warrant treatment. There was no interest in whether the atherosclerosis was more widespread or what risk it presented, even with a long family history of heart disease. The feeling was that I should just wait for the next 999 call and they’d try to pick me up and put me together again, which is why I ended up seeing a private cardiologist. I prefer a more proactive approach.
Good luck at the clinic, I hope it all goes well and that you get everything you need from it. It can very helpful find out what really happened to you and why, but remember that the NHS is a vast, complex machine and sometimes you need to grease some of the cogs yourself to get it to work properly.
@harimanjaro Thankyou for your reply …. that pa8nts a picture for me That does sound like a conveyor belt!! Efficient tho … I know what you mean by the ‘consultant boredom’ … that must have been very frustrating. After all these years you’d think there’d becmo4 ‘joined up thinking’ … same with my GP and Immunologist … ypthey were in different counties and kept passing the buck with me liaising between them! Now I’ve got an imm’t in Bristol … I don’t think Cornwall can deal with such a challenge. Anyway.
That’s shocking just ‘wait till the next 999 call’, esp with Family history of heart disease … same approach here in Cornwall. Wish I could go private, but even then they’re over7n with people desperate to get away from the nhs 
I like the ‘greasing the cog’s analogy … why should we have to do their work though? Been doing that for decades…. they owe me thousands in back pay 
Thankyou for your kind wishes, I just pray they do an MRIScan of n6 head and neck as have had three ‘tia’s in c.four weeks, feeling bit miserable too as I got up at 5.00am for an early patient transport ambulance … rushed around (well ish) and then clicked I’d got myself mixed up with the fracture clinic this week 1.30! At least it’s an example to give to the consultant if they’re interested that is. I feel a bit of a Plonker as Rodney would say (Only fools and horses). might try and get a nap in before the ambulance comes. Thanks again, and I wish you well with your treatment 
I think that defines the situation exactly.
I also think it is important that you speak out like this.
Dealing with disability after the event is complicated by the fact that what in effect is a brain injury causes such a wide range of problems. The complexity of this is such that the initial rescue is not set up to deal with recovery once stability has been achieved.
So, you are, hopefully, not now likely to die or worsen, the treatment is set up to provide that stability. If you continue with the recommendations then that is how things should stay. You are, in effect, on that dreaded plateau where nothing much changes for better or for worse.
You might receive some help to pick up your life. This traumatic event, has very likely had life changing effects. It is unlikely that you will be able to fit it all neatly back in the box. You are not simply going to return to where you were before all this happened.
To quote a nursery rhyme:
Sitting on walls is a risky business, but so is life.
If you want to start taking risks again then you must accept responsibility for the consequences.
Yes, you can leave the plateau. However no doctor, surgeon or professional person, can take over assuring you of a good outcome.
Try to be realistic, listen to advice, make your choices. I don’t believe there is a royal road that leads to where, who and what you once were.
There’s no travelling back. You have to continue forwards. We all do.
They neglected to give us a reverse gear.
The essential you is still there. You can do what you will with what remains.
There are no guarantees about any outcome. We each must find our own way. We can offer to listen, to share what we have learnt, express our opinions, make plans, hope, congratulate, commiserate. We are human beings, we can do all this and more.
keep on keepin on
In some ways this all sounds very negative.
Don’t despair, use your energy, your life, with care.
Life has it’s ups and downs but we are built to deal with that.
You can and you will.
Very wise words @Bobbi
Trace
Wise words indeed, @Bobbi, and I particularly agree about doctors not being able to assure a good outcome. It was entirely up to me to put myself together again and rightly so, but what I lacked was the knowledge to do so and the NHS doctors didn’t really help with that. The private consultant did though, and using the information he gave me I’m back to living a good life with hopefully a lower chance of needing the NHS to pick me up again at enormous expense. I think my greatest frustration comes from the fact that I was lucky enough to be able to afford that, and so many other people can’t. I wish it was different.
I’m just describing my experience and the view I am left with.
I was in a sorry state when I left hospital.
Since then there has been some improvement.
Some has been due to advice and encouragement from others going through the same post stroke experience.
I truly believe we can by what we have to say and also by example influence our peers for the better.
We owe it to one another to speak up and talk of, write about and share our traumatic experience and its effects, outcomes and the answers we have discovered.
I feel there is long way to go yet. There are all sorts of possibilities. Working together we can achieve much.
Occupational Therapists, carers and other professionals have been a great help.
Just like Oliver Twist, I can only hold out my begging bowl and utter these words, “More please.”