I am an autistic chronically ill woman and am in my 30s. In May last year I woke up one day feeling very poorly and basically unable to move or speak. I live alone and was so out of it I couldn't really phone anyone. I thought it was just a really severe attack of vertigo which I suffer from sometimes. I just slept for three days, and on the third day phoned my GP who prescribed some pills for vertigo.
Over the next few months I started noticing really weird things like I was extremely clumsy, had a lot of weakness in my hands (couldn't pick up a mug or glass without dropping it), and my speech was all weird. Plus headaches. I phoned the GP back who arranged for me to have an MRI. MRI was in October 2020 and they said at the time of the MRI that I wouldn't get the results until May 2021 because that's how long the neurologist waiting list was.
Last week I finally had my appointment with the neurologist (phone appointment) where he told me he'd looked at my MRI results which showed that I'd had a "mini stroke" and that he needed to see me in person and that I'd be sent another appointment. A letter has just arrived saying that appointment will be in March 2022 and will be yet another phone appointment.
I'm incredibly concerned that I apparently have had a stroke yet haven't been seen in person by a single doctor. Obviously it was only a small one but I'm still unwell from it. Both my parents of strokes in their 50s/60s. I'm honestly so scared that I'll have another stroke.
What can I do to get access to medical treatment? It just seems incredible that someone can have a flipping stroke and have to wait two years to see a doctor!
Hi Sunshine and welcome
I do think you have been treated quite shabbily by the NHS. In view of your family history and underlying health conditions, you shouldn't have to wait so long to see the neurologist. There is no need for phone appointments as the NHS is not under stress anymore. I also had a mini stroke in October last year which was at the height of Covid. I was misdiagnosed in A & E (went into A & E in an ambulance) and told I could go home and hadn't had a stroke. I was phoned the next day by the stroke unit doctor to go for an MRI the same day as, in his opinion, I had had a stroke! He rang me a couple of days later with the results confirming his suspicions that I'd had a tiny bleed and 2 small blood clots on the brain. He changed my meds and I'm OK now.
In theory, you should now be on meds to stop another stroke and this is why the neurologist said he needed to see you in person. If it were me, I would ring the number on the appointment letter and stress that it must be a face to face appointment not a phone call next year. Tell them you are not happy about it and ask the neurologists secretary to phone you back so you can speak to them. Sometimes appointment letters are churned out by computers so they do get it wrong. I went to an eye appointment at my local hospital this week but was sent the wrong letter so consequently I had no idea that I wouldn't be able to drive due to the drops they needed to put in my eyes. Because I drove there, they had to re-arrange the appointment.
I hope you get some answers soon. Keep in touch on here and let us know how you go on.
Hello Sunshine. Sorry to hear that you have been neglected by medical professionals who should be caring for you.
"Onwards and Upwards", has given you good advice.
March 2022 is not acceptable for the follow-up appointment. If you feel able, you must phone the neurologist's secretary and insist that you are seen much sooner than next year. It's ridiculous. I don't think the neurologist would be happy to wait for that long.
If you feel you need help to do that, you could contact the Stroke Association and explain your situation. They will give you advice and support.
It is good to hear from you, and lots of people will support you on this site.
Good luck with getting a better appointment date. Looking forward to reading your posts.
That's just not on, strokes cost the NHS huge amounts of funding per person, it is in their best interest to prevent them. I would be persistent, there should be a chief stroke consultant at your hospital, I believe neurologists aren't the only staff dealing with this kind of matter.
It might be worth contacting the hospital PALS ( patient liaison service) they are there for problems like this. Someone else can ring on your behalf if it would be easier for you.
I think it's very unreasonable to give you the appointment they did. Hope you get some answers soon.