Cambridge Survey

[Scots_dad]

Has anyone seen the neurologist on X that's looking to do the survey with people that have had AI Encephalitis?I couldn't find the link but sounded promising.

[Scots_dad]

Anyone seen it ?

This is the you tube video

[kitnkaboodle]

You mean this? bit.ly/MM_PATIENTS2024

Info:

Kaira Naidu MSc, a researcher at the University of Cambridge, invites you to take part in an important study on autoimmune encephalitis, a rare condition for which more research is needed. “We’ve designed an anonymous survey to hear directly from people living with autoimmune encephalitis. It asks about your mental health, patient-clinician relationships, and how your condition interacts with hormones, among other things. If you participate, you can help us uncover patterns and better understand the unique challenges faced by the autoimmune encephalitis community. Your insights will guide really important research, and has the potential to improve care for others.”

Patient Survey Details: Aimed at autoimmune encephalitis patients to explore their symptoms, healthcare relationships, and health status. Takes ~30 minutes to complete (participants can pause or stop anytime). Participants can enter a prize draw with two prizes of £200 each

Copy the survey link and paste it into your browser: bit.ly/MM_PATIENTS2024

Clinician Survey Details: Focuses on hormones, clinician-patient relationships, and autoimmune disease triggers. Takes ~15 minutes to complete. Participants can enter a prize draw with two prizes of £200 each. Cope this survey link and paste it into your broser: bit.ly/MM_CLIN2024

Participating is simple! Click the link here to access the survey.

Each survey takes about 30 minutes to complete, and you can pause to take a break anytime. And as a thank-you, you can enter a prize draw to win a £200 Amazon voucher. Winners will be notified after the surveys close. If you have any questions, please don’t hesitate to contact Kaira at [e-mail]. Thank you for helping us improve our understanding of autoimmune encephalitis. Together, we can make a real difference!

[Scots_dad in reply to kitnkaboodle]

Yes thank you for sharing

[Gandalf2]

If you just do a google search on 'neurologist on X that's looking to do the survey with people that have had AI Encephalitis' you will come up with a wealth of links to such surveys. Maybe this helps?

[Scots_dad in reply to Gandalf2]

Yeah someone else shared it on here and I took it alot of questions about what the follow up clinicians are doing which I couldn't answer as I haven't seen a doctor since I was released

[Gandalf2]

Our neurology doctor seems to be reluctant to engage with us since release. The support that he promised never turned up - we waited 18 months before we realised he hadn't arranged anything. We eventually got a variety of support/s through a social worker that we were referred to via our GP.

There seems to be a lack of oversight or accountability with doctors at the (neurologist) level. There has/have been no further scans, cognitive tests, occupational therapist's assessments or any other follow up apart from that arranged through my GP and social worker.

[Scots_dad in reply to Gandalf2]

Well I spoke to a neurologist today for the 1st time since I was released he's changing my medication right away and booking me in for a mri scan as he reckons ill have a scar on my brain , he also said iam having focal seizures

[Gandalf2]

Great news, I have a couple of scars as far as I remember. One gives no sense of taste or smell and the other no short term memory. I hope your injuries are liveable with. Good Luck and Best Wishes. G2

[Scots_dad in reply to Gandalf2]

Thank you very much 😃

[Gandalf2 in reply to Scots_dad]

Hi Scots, I looked up focal seizures and saw some videos on Ytube. It looks pretty bad. Looks like you may need a companion if you venture out. I don't how you are fixed at home or how ba your seizures are. I'm on anti-seizure meds which stop me from seizing. Maybe you can get similar. It's late now - I'll have to sign off. Best wishes, G2.

[Scots_dad in reply to Gandalf2]

Hi sorry for the late reply iam still on keppra although the neurologist has changed my meds , the focal seizures are daily now and think I'm getting used to them . The neurologist has booked me in for an Mri scan and he said they should have given me one whilst I was in hospital, although this could take up to 6 months I'm thinking of going private. The insomnia is the worse of all iam sitting typing this at 4.30 am and haven't slept right through once since

[Gandalf2 in reply to Scots_dad]

Hello, thanks for getting back, it all helps. With enc. it's a very hard ride sometimes. I've got a range of other conditions too so just having enc. wouldn't be too bad. Sometimes it seems that way anyway. Sorry if that's not funny at all. I can't imagine still having seizures.

Hang on for the MRI scans, it may not be six months. I'm getting scans and other attention without the long wait. You should have had a scan in hospital, I agree. I had one and it helped to figure out which parts of my brain were affected. Sometimes they can figure out these things just by deduction. If you memory goes then it will be such and such a part that's affected etc. But a scan is good and helps you feel more in touch with things.

I've been having a rough time with my extra probs but it's gone easy at the moment and that feels like luxury.

It's not nice having to rely on other people, however well-qualified, for your welfare; especially when promised things don't materialise. Oh well.

I'm sleeping ok, about 14-16 hours sometimes. It's not always been that way and sleep is fantastic. I hope you start to get the rest you need. Off topic: I visited Rob Roy's grave once by accident and there was a fir tree branch and some flowers there.

I used to walk round the block at night with my wife but I've got a catheter strapped to my leg these days and exercise is slightly off the menu - we'll see. I enjoy the internet, you can see amazing things and heartwarming stories. God Bless us all, everyone - as Tiny Tim would say. Better say goodnight - it's getting late. Best Wishes, G2

[Paula-38]

Professor Benedict Michael

[EncephInternational Partner]

Is it this one?

Led by Dr Melanie Sloan, the University of Cambridge is conducting a patient survey, exploring medical relationships, disease symptoms, and overall health.

Key Details:

• Takes about 30 minutes to complete (you can pause or stop anytime).

• Open to patients with autoimmune diseases, the general public, and clinicians.

• Participants can choose to enter a prize draw for two £200 prizes.

Survey links

• If you are affected by autoimmune encephalitis take the survey here: bit.ly/MM_PATIENTS2024

• If you do NOT have an autoimmune disease, take the general population survey here: bit.ly/MM_GENPOP2024

• If you are a clinician, take the clinician survey here: bit.ly/MM_CLIN2024

Questions? Contact Dr. Melanie Sloan at [e-mail] .

[Scots_dad in reply to EncephInternational]

Yes that 1 😊