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Masterclass in FND by Re-Active - Functional Neurol...
Masterclass in FND by Re-Active
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Hah....just posted this info too. Looking forward to it!
See you there 😉
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.
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.
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!
Funny you mention them, I am away visiting friends and my girlfriend mentioned them. We are still under Childrens, think QE is neurology x
Sorry should of read all your post, isn't Barberry Solihull NHS Trust?
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.
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.
Just a reminder guys this Thurs at 5pm, although just wondered what time it is for UK.
Ps. Check out the latest re-active video: functional seizures and Sense of Control on utube. Again refers to autonomy and sensory.