Masterclass in FND by Re-Active

[Lady4]

Sign up and save the date (I have 😊):

reactive.mykajabi.com/FNDMa...

[Poseypink]

Hah....just posted this info too. Looking forward to it!

[Lady4 in reply to Poseypink]

See you there 😉

[Lady4 in reply to Lady4]

Did you watch it. I set my alarm and just managed to stay up till nearly 3am.

Thoughts? On the app, yearly membership with 6 monthly 1-1 with Julie (founder). Although in reality will probably be another team member if oversubscribed.

[Shimmyaway]

It makes you fume, when you see the possible neuro rehabilitation we are not getting in the UK.. but DIY is better than nothing.. I'll be there.

[Lady4 in reply to Shimmyaway]

Totally, at least from my other post we know what sort of support we should be getting and we should challenge the powers that be.

I down loaded the kids/adolescents guide (written by grad student I think) and right at the back it showed the referral route that should be followed and support by a multi-discriplinary team (will try and find link and at the very least take a copy and post of route).

How many of us have had that support and how many depts actually talk to each other. With re-active, I can imagine them having team meetings about severe cases and how they can work together to meet the goals for the individual. I guess their service is paid for privately or their private health insurance.

We should be receiving a holistic approach something I pointed out to the GP surgery following a patients survey.

[Shimmyaway in reply to Lady4]

The so called multi disciplinary team at the Barberry ( on QE site) for the FND programme consists of one consultant neuropsychiatrist, one OT with neuro training, and sometimes a physio ..and this FND ' programme '..which I suspect is one size fits all , (no assessment) is just based on 6 sessions of talk therapy with the OT..not even CBT or a named type. I sincerely hope this has changed by the time your son gets to go to adult services. Fume, fume!

[Lady4 in reply to Shimmyaway]

Funny you mention them, I am away visiting friends and my girlfriend mentioned them. We are still under Childrens, think QE is neurology x

[Lady4 in reply to Shimmyaway]

Sorry should of read all your post, isn't Barberry Solihull NHS Trust?

[Shimmyaway in reply to Lady4]

You are right, but it is Solihull and Birmingham Mental Health Trust, so that is where the neuropsychiatry for B'hm is based ... I think it was Terry Griffiths who has posted about his experiences there😱

I hope your son's school is signposting him to where else he can apply... he would receive a more sympathetic welcome in one of the colleges esp for young people with disabilities, with more help available, but this is a hard step to take and one you and/or your son may not want to entertain., added to which the range of courses they offer might be somewhat limited too. Accepting the 'D' word, age 16 could be too hard for him to bear.

[Lady4]

I did ask him if he accepted his dx's and he was blasee about it, so not really taking it on board and he seemed not bothered re potentially not been accepted into 6th form, so unsure what to do. Think although SEN debate a possibility, that is giving him another label, which, in my opinion can do more damage than good.

[Lady4]

Just a reminder guys this Thurs at 5pm, although just wondered what time it is for UK.

[Lady4 in reply to Lady4]

We are 8 hrs ahead in the UK, so guessing 5pm Los Angeles time would be 9am for us but think its recorded too.

[Lady4 in reply to Lady4]

Correction, as we are ahead it will be 1am, ouch. Feel free to correct me

[Lady4]

Ps. Check out the latest re-active video: functional seizures and Sense of Control on utube. Again refers to autonomy and sensory.