Hi I was wondering if anyone knows about rights on getting treatment. I recently phoned my doctor to ask to get my spine checked due to pain numbness balance issues and poor mobilty and she said I would have to go back to neurology again first.l then ask if I could see John stone in Edinburgh as he was the only specialist in scotland and I have already seen a few awful neurologist . I was told he doesn't see anyone outside his area. I just need to have these test so I know in my mind everything's been checked.
Thanks
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Frazzled101
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After getting rejected in all major cities within 1-2 hours from where I live (Gainsborough in Lincolnshire) Lincoln, Hull, Sheffield, Leeds, Nottingham etc. Mh GP and his secretary did a mega job and managed to get me into the top place for epilepsy Chalefront I believe it's called and it was unbelievable. In the next 4 months I'll be having sleep studies, MRI and mental health help. We'd all been trying for 4 or 5 years for my neurologist to sort that (she is brilliant and saved my life by finding out my previous neurologist put me on meds that were red flagged for people with mental health issues) it's about having a good GP and a lot of hard work, patience and keep knocking on the door. So you'll get there eventually. Good luck with it all mate
Hi there always seems to be 2 issues with the NHS concerning FND in its many symptom forms.
1) Which NHS Professional Service is responsible for FND sufferers i.e defining condition as mental or physical (bear in mind the classification does define FND as affecting both!).
2) Which NHS budget is going to cover the necessary services to identify what and how to help FND symptoms for that individual i.e Neuro, Physio, Neuro Physio, Cognitive Behaviour Therapy, Occupational Therapy or Psychology etc
These both sound the same question right? But they are two very different problems!
GP'S tend to not have the necessary training or understanding of FND and in my experience fail to support and improve the Individual FND Symptoms, either by medications, referrals or simply acknowledging you have an actual debilitating health issue at all!
1a) You will need to convince your GP that you would benefit greatly from a Physical Assessment (Hands on) for your Spine i.e Orthopaedic Services - before going down the same route of more Neurological Reviews (Nervous System/ Mental Control/Ability).
2a) GP'S do have a responsibility to cover necessary services for an Individuals health. However they decide where the money is spent - so will always prefer the costs to come out of a Hospital Consultants budget (any Consultants will do!) rather than their own Local Practice.
You are entitled to a `Second Opinion' under the NHS rules if you feel your health is not beng properly addressed, and I would advise checking out the N.I.C.E rules on FND treatment/services, to see if they can help you out too- NICE set out the minimum medical requirements by law for each health condition.
Another route you GP may not be keen to go, but was the only route I managed to obtain to reach FND Multi-Disciplinary Rehab in a Neuro Hospital on the NHS. Is by requesting funding through the Primary Trust, who were the `parent body' in charge of GP Services. So that may well still be an option today or an equivalent managing body for your GP to access funding?
Of course if you are lucky enough to have the personal funds for a Private Spinal Orthopaedic Consultation - you will still need a GP referral outlining what that other Consultant Service should investigate. So basically getting your GP to cooperate is the best strategy and and also the most difficult hurdle.
TIP: My GP is useless (an fact with other Patients I know, not just me or FND). Therefore on occasion I ring up about an unresolved issue, knowing my GP is unavailable, just to get another GP that day. This way you effectively get a second opinion on the matter, without having to ask for one! Though don't do this too often, else they will suspect you are bucking the system!
Ultimately what you need to cope/deal with your symptoms on a daily basis is all FND Sufferers can hope to gain from the NHS currently.- even the specialised Rehab only focused on self-daily management of symptoms, without further medical intervention.
p.s Sometimes by going through another service like Physiotherapy, they will pick up on Spinal issues and recommend to the GP about going for a full Spinal assessment. Once the GP has a clear path, they can justify the spending! Just a thought?
I have had a timeout from doctors for a while now and a second opinion. I'll check out nice everything's just to much at the moment with zero help.Thanks for all your advice
I am on a treatment group therapy thing was told that there is a 3 or 4 page document that you can print off and give to your GP to apparently help your case as a lot of GPS still don't recognise or even know what it is we go through if I can get any more info I will let you know.
Sorry to hear what you are going through. I went through similar - after a number of comments that they were the doctor I left and found another GP- so you may want to do that as hard as it may be. You will get there but need the help of someone that will listen and help.
Where are you based as if your near George Elliot in Nuneaton I would recommend Dr Georgiva she helped me a lot. Sorry can't be anymore help. I've been trying to get myself an Fmri but have been told it is only used in research studies apparently. Good luck. Best wishes.
Hi, I have all these symptoms. Do you have good periods followed by periods of relapse? I've just had a spinal and head MRI but took me two years to get. I'm awaiting results. If it's clear il probably be given an FND diagnosis even though some other areas haven't been explored. My problems began 3 days after COVID vax. Keep pushing
From what I've read about Jon stone he seems to be the one to see at Edinburgh hospital as the amount of research he does and clinical trials. He seems to be the main one to be on top of FND at the moment. I did ask my own neurologist if i could see him but ended up getting a so called specialist that basically was more interested in getting an early lunch. Took me 2 hours to get there was expecting a 2 hour consultation with answers and a physical examination none of the above was done and I was in there 15 minutes.. so a 4 hour round trip where I could of done a 12 hour round trip if they would of let me see doctor stone in Edinburgh and I guess would of been more productive. So after 10 years of this diagnosis I'm still no closer to any answers and I've got to put up with pain management bullshit classes which were intact explained to me as physio . for the next 6 weeks again for the second time. I really hope you get to see doctor stone Good luck and I wish you all the best
If I were you I would look for a new doctor - I had a similar situation where I asked if I could be tested for a condition and was denied - yes the test would of confirmed it and not put me thru years of agony. Please give it some thought.
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Finally got some information on the treatment for FND
botox treatment
Numb lips and cheek on the right side
Scottish Petition on more NHS Support for FND Sufferers
