how to get somebody assessed

[salamander160]

Hi, My niece has several serious health problems. She has been waiting for an assessment by a neurologist for quite some time, apparently the referral was supposed to be sent last year but because of my nieces medical history, the gp hasn't done it, they are not taking her seriously enough. She has started having seizures or what they think are seizures but until they assess her, they won't know for sure. What is the best way to make the doctors listen and get her the assessments she clearly needs? My niece has so many symptoms which point towards a neurological problem, she has been told they will do a brain scan but it hasn't happened. Because of her medical history, mental health and what have you, they have given her a label and the medical professionals can't see the issues beyond that label and they are really dragging their feet. Is there a way to make them get her the help she needs?

[Dvorak]

What you describe may be something called "diagnostic overshadowing" and I think my friend is subject to it on occasion too. I don't know how to tackle it other than being persistent, sorry.

This article relates to nursing and people with learning disabilities and I know it occurs sometimes with people with mental health diagnoses too

rcn.org.uk/congress/congres...

[Leaf100]

Hi Salamander.The only thing I can come up with is to insist on a referral to a neuropsychiatrist. They know both the nuerological side and the mental health side and can refer for any scans or other tests they deem necessary.

If your niece has had any falls or impacts which were sudden and caused stop /start action very quickly, she may have a bi, as those can occur with no visible outward evidence or even evidence in scans - in that case the diagnosis is clinical and done by the neuropsychiatrist - a neurologist is not your best bet as they look for physical damage that can be seen in scans. (Some people get brain injuries from a bicycle dropping off a curb the wrong way , for example - it isn't always something dramatic - head balls in football can also do it.)

I ran into this attitude with my original gp who said I had a concussion and because symptoms went on more than 6 months accused me of faking. Eye roll. I went to a new gp and got a referral to a neuropsychiatrist - I got the name of the person to ask for from my local brain injury society - so maybe check with Headway for a name or an organization near you who knows who is informed. They may even be able to help you find a more sympathetic gp.

Keep us posted.

Leaf

[salamander160 in reply to Leaf100]

Hi, Ok I will forward your posts to my niece, some of seems very familiar, it is very frustrating when you have to fight to be listened to or diagnosed. my niece asked me to add the bit below, Thanks for your advice.

You need to add in that I was hospitalised last year because I couldn't walk properly and that they thought it was m.e /ms or FND 

[Leaf100 in reply to salamander160]

OK, let your neice know the neuropsych can also tell the difference between all those... or get tests etc to help them figure it out... they maybalso do some testing themselves or get a neuropsychologist to do some for them...

FND is just the latest catch phrase for 'we don't know, label given, do CBT and physical therapy and go away'... which was never the intention behind that- it was created in recognition that there are issues in function that are not down to currently observable physical damage... and it doesn't mean there may be some kind of chemical or other malfunction of the nervous system. It is seen in functional MRIs but that is only done for reassearch, not diagnosis. It is , unfortunately, not well understood yet, so many docs will say it is only psychological - that was never the intent. Historically they used to think MS was merely psychological, for example. And of course it isn't.

If she does get an fnd diagnosis let me know and I will explain what goes on. It won't be a cure but she will know more about it than most docs do. I had access to a course from a top person in that field for awhile and can remember enough to pass on some basics. There are, unfortunately, a lot of people put there trying to force it in a certain direction based on what they think they already know and it isn't on the money.

If she is having seizures they don't necessarily mean epilepsy. And there are something like over 200 causes of tremors.

[skydivesurvivor]

ring social services, they should be able to get things started. Good luck

[salamander160 in reply to skydivesurvivor]

That won't work, need to get a good gp.

[James1984]

You need to take charge of the situation yourself by the sounds of it. Google a Neurologist in your area that specialises in Epilepsy, then ask your GP to write a referral letter to them. They will probably send her for an EEG scan that will pickup on any possible micro-seizures she may be having, let alone a full seizure.

[JontyB]

suggest you take charge of the situation or change gp surgery. That’s what I did last year as I was not happy with my surgery

[Klaus27]

Hi salamander160,I am sorry to hear about your nieces experiences. I apologise in advance if I repeat any advice given by others. My daughter was labelled with mental health issues between 2015 and 2021, her symptoms were a term I now know as 'executive dysfunction' ( emtional, cognitive & behavioral) , I kept telling everyone but they had blind biase and just passed her from one mental health team to another, it was awful. Nothing made sense, and it was so obviously neurological. It transpired she had all these symptoms because she had a tumour in her brain ( not a brain tumour. But the impact was the same). Is your niece able to go to A&E, or depending on her location go to somewhere like UCLH A&E ? When I spoke to a neurologist there ( I just cold called their department) they said it was a shame I hadn't brought her to their A&E, even though we live near Southend, as they would probably have done a brain scan based on her symptoms. I don't mean to worry you unnecessarily, but it may help her get seen sooner and rule out certain things. I hope she gets some help soon.

[salamander160 in reply to Klaus27]

Ok, sorry to hear about your daughter, yes it is tough and today it is made worse when they try to diagnose over the phone. I will pass it on to my niece, she is independent but is struggling to get heard. Thanks again.

[Klaus27 in reply to salamander160]

Thank you. My daughter was independent too, and very articulate. It presented itself in a different way, but a professional had the knowledge to join the dots. I hope your niece gets seen soon as telephone consultations aren't quite the same.

[pinkvision]

Hi, first make an official complaint to the GP practice, make sure you do it in writing. Then if nothing happens go to another GP practice and ask for an assessment with fresh eyes that looks beyond the mental health issues. If your niece is beyond the six month period post injury, a neuropsychology or neuropsychiatry assessment may be the better option. Neurologists require a positive brain scan to work with, whereas the other options separate the psychological from the neurological by testing functional behaviour patterns (if they are any good).

If the first GP won't do anything and you go to another practice and get a referral and they find a brain injury problem, then as long as you have made an official complaint you can sue the first GP for damages.