Birmingham FND Hospital

[Littlecook]

I called the Birmingham hospital today regarding my referral, but told it should be talked about on Monday but the waiting list is 9 to 12 months how do I cope in the mean time if I can't talk to my doctor and can't get talking therapy what the ----should I do . Christmas is 19 days away and I know I will be struggling I can't cope with having my special need boys around me ,I just know I will explode someone please help me .

[Cornelia35]

Hi, even with the 1 year waiting list you should be thankful living in a country that has treatment options. You will cope .. my dizziness decreased for some months but now it came back very ugly ,constant and worse than ever.. You live in the UK you will find help eventually.. I have to travel change planes hotels taxis to go to a country that provides treatment.. imagine what a difficult task .. i live alone i have no help no family etc you will be fine think about it with more optimism that your treatment is near! You will not break .. you will have a chance to improve

[Shimmyaway in reply to Cornelia35]

We all need to count our blessings in the face of our difficulties, and yours seem to be particularly burdensome. Best wishes.

[Cornelia35 in reply to Shimmyaway]

Thank you 🙏🏻 And i wish you the same

[Lady4]

Is that the Neurology referral? My son is on another NHS Trust referral waiting list and I have no idea how long before he gets an appointment but to be honest I am not sure what help they will offer. Its just day to day self management. Celebrate the "wins" and don't put too much pressure on yourself. Try and live in the moment.

[Shimmyaway in reply to Lady4]

The Barberry referral for L_Cook is to the neuropsychiatry dept, where I had some treatment, and have been re referred there by the GP ..but as you say the hope of something useful being offered is not high, with the day to day management and experimentation more important. Is your son being referred to an MH Trust or neurology .. crazily not in the same building even!

[Lady4 in reply to Shimmyaway]

Just neurology.

[Shimmyaway in reply to Lady4]

Do they have a therapeutic team to back up the FND diagnosis? The QE make it plain they haven't ..hence referrals to the Barberry NHS MH Trust.

[Lady4 in reply to Shimmyaway]

Not sure yet.

[Shimmyaway]

Little Cook, you have rechristened the Barberry Hospital! If only they thought FND was as worthy of attention as we do! Rejoice, they are talking about you next Monday .. my third referral ( 2 already declined) has not yet been authorised! The talking therapy from the Barberry is likely to help you to manage FND better, but may not provide a solution to the underlying problems so maybe you could get some help from your GP surgery in respect of the management of the condition, which might alleviate some of the mental strain. They must have a mental health counsellor. As for Xmas, would it be possible to invite folks one at a time ..they must understand that you are not in good enough health to be the host you once were. You need and deserve a peaceful Xmas.

[Shimmyaway]

Hi again Littlecook. Have you tried some of the techniques described in the attached blog? fndrecovery.com/2022/07/09/...

The person who runs it (Maxi) can be contacted at [e-mail]. It sounds as if he has a professional base of medical knowledge, whilst also being affected by FND. He does a lot to help himself .. a good role model.

[Lady4 in reply to Shimmyaway]

Hi I have just been reading Max's blog, will look out for her Re-Active interview and just highlighted her "Mirror Magic" blog.

This just highlights how external focus helps so much.

[Shimmyaway in reply to Shimmyaway]

Littlecook, make sure you watch the videos from Sanjay Gupta about POTS ..it has some tips for dizziness that might help you.. things you can do for yourself right now, not in a years time from the Barberry.

[Shimmyaway]

The Queen Elizabeth belongs to the University Hospitals Trust, and offers neurology appts to potential FND patients, but they have no therapeutic back up team, and so refer you to the neuropsychiatry dept at the Barberry Hospital, on the same site as the QE, but belonging to the Birm & Solihull Mental Health Trust. The Barberry is 'in need of improvement' in 3 out of 5 areas ..and that does not include any inspection of outpatient neuropsychiatry, which I found to be place of false hope...and as L_Cook tells us, has a one year waiting list. So back to the DIY!

You can download the FND patient leaflet from the Barberry from their site.

[Shimmyaway]

I expect you didn't have a diagnosis in those days of a condition, that involved the word 'psychiatric' .. so they didn't get shot of you, as they do with the FND patients and put them on to the 'mental health route'.

[KatKitt117]

sorry I’m from Canada , I’m assuming your wait list is for a hospital that specializes in FND? Am I understanding that correctly? I was just officially diagnosed end of February after many years of suffering tingling and pains, headaches etc that no one had answers for. But any case we don’t have specialty hospitals. It was my neurologist who finally figured it out and confirmed it was FND . Thankfully I already started seeing her before i completely tipped over experience the full weight/struggle of FND from severe jerking to no longer being able to speak properly, not being able to work etc. But with that said it was over a year wait just to see her.

But back to point. I was recommended to see a psychotherapist I guess to clear depris so to speak around the malfunctioning nerves. I got one specialized in neurology. Sceptical at first but but once highlighted that FND can be caused by many factors - stress, genetics etc but whether the case stress in the brain can impact the pathways, the healing processes to gaining some connection. And having the issues with disorder uproot my whole way of life ..told that even that needs to be vented. So I gave it a shot - plus she gives me task to work at home . I also have to go to a massage therapist to help with tension cause by jerking and clamping up etc and now after waiting months I’m working with my atlethic doctor to help come up with plan to help my body muscles etc to cope physically with pain and issues so I can try to can more strength and control. I no idea if I’ll be able to work again, speak normally again or what not but It does help a bit to have this little team trying to support me.

Anyways my point is that although it’s very frustrating to wait while enduringt it’s good you got the referral. And it’s good that you are meeting with somebody despite the wait. Hopefully they,l set you up with a plan , a team that’ll help And that’ll work with you and your Gp in meantime to help with other avenues to heal cope.

I Truley hope you get support both mentally and physically

And sorry takes me time to focus and stay on track these days..

[Shimmyaway in reply to KatKitt117]

We would love to think the Barberry Hospital in Birmingham, uk, is specialist FND ...but it is not!! ..it's a normal Mental Health Trust hospital with a neuropsychiatry dept, but no multidisciplinary team as recommended by the gurus of FND, The talking therapy they offered me had no beneficial effect, may work for others. I agree that physical therapy can reduce the pain and body tension, so I get that privately , and do 'flow roping' at home .. you could try it, it's a good tension reliever, and gentle for the nervous system ..and free!

Sorry to hear of the severe symptoms you are suffering from, but as you say, your team keeps you going and positive in outlook... and please don't apologise for being Canadian! Glad you are getting back on track .. and find the strength to put the effort in.

Littlecook, I hope I haven't hijacked your post, Katkitt has shown us what effort it will take to get ourselves back on track. Best foot forward!

[Shimmyaway in reply to KatKitt117]

From a previous post from a Canadian, I learnt there IS a specialist FND place in Ontario (the only state that has one) but he was not allowed to go there, as he didn't live in Ontario. ..do you?

[Littlecook in reply to Shimmyaway]

I'm afraid not I live in the UK 🇬🇧 ,thank you anyway.