Anyone had experience with getting ca... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Anyone had experience with getting care for FND in prison (UK)?

Devotedtolife
Devotedtolife

Hi everyone,

My husband was just diagnosed with FND. He is in prison which is hard enough for anyone and is constantly the victim of racist attacks. So he has no quiet, no protective environment, can't make his own choices and is always prepared for another external attack.

His FND is totally related to PTSD.

The medical team are not responding to the neurologist and he had a seizure on the stairs a couple of days ago and slid down them, only for a f__khead officer to taunt him and accuse him of faking it.

Before he was in prison I did not leave his side for over 2 years as he was always having seizures. Now that we have a diagnosis (for me at least) much of his behavior and choices now make sense. We are not even given enough time together to process the diagnosis and his care is getting blocked by the health care team. The neurologist sent him links to websites to do research but there are no computers in prisons. This is all such a nightmare.

I have started a complaint process but what I really want to ask is-

Has anyone been in this position?

Are there charities who might provide him therapy in prison?

Does anyone know of an FND specialist who is a criminologist? He pleaded guilty to 3 crimes when he was only guilty of 1, just to avoid the stress of it all. He had 2 seizures in the court and one at the police station.

Has anyone had experience in getting a prison to respect the diagnosis and make adjustments?

We can't try diets, therapies and he can't even contact the neurologist!

Anyone?

Any advice?

I love him so much and am prevented from caring from him whilst knowing he is completely vulnerable to ugly forces on all sides.

12 Replies
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Hidden
Hidden

I’m so sorry about you and your husband’s terrible predicament. I haven’t got any real advice to offer but re therapy - the Koestler Trust might be a helpful point of contact for art therapy. They do amazing work for people inside who are able to benefit from being mentored by visual artists.

The other thing I’m wondering about is whether you might be able to contact his neurologist and explain what’s been going on. It could be, as you’ve mentioned that the cause of his seizures is definitely PTSD, that the neurologist could then pass up the “FND” diagnosis in favour of a psychological one and transfer your husband’s case to psychiatry or clinical psychology as an urgent matter requiring a second opinion?

If his ptsd related symptoms could be moved to come under the heading of psychiatry or clinical psychology then I would have thought that your husband may be more likely to get better understanding and be better able to access appropriate help and protection from bullying under the prison services’ mental health guidelines?

From everything I’ve read to date “FND” is neither classed as a mental or physical health condition and as such is still largely misunderstood or disregarded by health professionals and the wider world. So it’s hardly surprising that a prison governor, prison officers and prisoners themselves aren’t going to take your husband’s symptoms as seriously as they need to be taken.

Devotedtolife
Devotedtolife in reply to Hidden

Thank you for the very invested reply.

The neurologist is part of a multi-disciplinary team, so I think, I hope the treatment he will get will be as for a psychological disorder.

It is so very complicated. He received a letter from the psyche specialist saying they had tried contacting the prison health care team and they hadn't responded at all.

Thank G-d for the professionalism of this doctor to also add a copy to my husband otherwise we would not know.

It transpires the letter of diagnosis was filed by the nurse without the doctor having seen it months ago.

So we now know about the actual diagnosis and this has cleared up so much for me myself. My husband is having a hard time believing it is all psychological. He has not seen any doctor about the diagnosis at all and appointments that were booked and scheduled were broken - not even cancelled by the health care team leaving the specialist hanging too.

So all he has had is a letter confirming the health care team are ignoring the hospital and hiding the diagnosis. He hasn't even been able to do research online. I have tried to tell him what I have learned from research but this is no replacement for being informed by a qualified and experienced specialist aware of how important this first stage is to get a patient into a positive path for recovery.

I just think about how he is coping and I am very proud that he is so dignified. Many people would be acting out. But at the same time he has just told me about symptoms he has not had before which means he is repressing all the anxiety and fear and he's getting worse. I really want to cry. He does too but has no place to cry in prison.

My heart breaks and my hands are pretty much tied.

He has no peace and quiet to relax in - he is being mentally tortured all day long with no right or power to respond.

I am sorry for unloading but very few can possibly process what the situation really is.

It's a living nightmare and what appears to be only battles ahead.

Thanks for reading :)

Hidden
Hidden in reply to Devotedtolife

I am so sorry for what you’re going through. I really don’t know much about any of this but it may be that your own GP would be best placed to advise on how you can access support for both of you as I’m guessing it’s pretty traumatic for you as well.

I do know that arts facilities are sometimes offered in prisons and have really helped people to find a form of creative escape and empowerment - particularly those with fragile mental health. Perhaps your husband could sign up to classes offering craft of art or music to give him some much needed peace and an outlet?

Also I should say that a diagnosis of a FND is not viewed as a psychological diagnosis as you seem to think.

FND symptoms can be triggered by a psychiatric or psychological disorder or trauma - but often they are viewed as a person just having a conversion disorder - which is not the same.

So this is why I mentioned that your husband may want to know this and feel less humiliated by others learning this too. It may help if he’s struggling with the psych aspect.

He may also be able to access physiotherapy and CBT which are the main therapies offered for those diagnosed with FND.. The neurologist founders of the FND movement are very much into targeted physiotherapy which they believe helps get the brain and the peripheral nervous system re-synchronised.

He may also benefit from a neuro psychology assessment and psychological therapy - which could help him process the PTSD? By accessing both he may also overcome his FND symptoms to a greater or lesser extent.

Anyway these are just some thoughts. I hope the situation starts to improve for you both very soon.

M3rry
M3rry in reply to Hidden

OK - I have no experience directly with the prison system (my only link was when I saw a specialist dentist who admitted that prison dental treatment was better than normal as they were not able to make them wait the normal 'waiting list' delay)

I think you might want to contact your MP (after Dec 12th) - people in prison do have the right to medical care - and it is illegal for them to receive less than normal NHS levels.

I do not know if it possible but try for a transfer to a different prison, there must be one out there that would be better for him - even if your trip to visit is longer. Is there any way to research this?

Long term you might need to go to court to demand basic health care is provided (human rights abuse) unfortunately.

Devotedtolife
Devotedtolife in reply to Hidden

Thank you for your response.

I am completely new to this and am eager to get a better understanding. Yes, I was thinking this is a psychological issue manifesting in the physical.

I thought conversion disorder was just another name for this.

I would really appreciate being given a better appreciation of the disorder.

How are these different?

Is this just a categorization issue?

I came across FND being described as complex PRSD - i.e. Comorbidity of PTSD + x.

If you have time please explain the differences as clarity will help me fight for him.

Thabk you for your support .

Hidden
Hidden in reply to Devotedtolife

I just don’t know enough about your situation to advise to be honest. But as you are pressing me then I will say that I suspect, from what you’ve said, that an FND diagnosis is not a good one for your husband to have.

From all I’ve experienced and read here it even leaves most non imprisoned people stranded unable to access support. It’s just such an unknown quantity as a premise still.

Many here on this community - and my neurologist - argue that it’s not a mental health condition at all. But nor is it viewed as organic. I think the idea is that it’s like a bad habit (or many habits) the brain has formed due to a great range of underlying causes. The idea is that we need to be reprogrammed out of these bad habits I think.

However to me underlying PTSD needs treating under the NHS mental health act whatever neuro symptoms it’s causing. So your husband should have been assessed by a psychiatrist and psychologist, not by a neurologist. This would have at least enabled him to be protected and treated under the HMP’s service’s mental health guidelines.

FND presently sits outside both kinds of NHS provisions as it is still a relatively new and very controversial diagnosis. Most who accept it here would say that it’s not viewed as psychological/ psychosomatic but is simply a problem some have with converting between the brain and the rest of the body - what people refer to as a hardware/ software issue.

I personally do not believe in FND at all - I think everything that happens in our bodies and minds is organic. But that’s just my own perspective. My own diagnosis is now under ??? But it is supposed to be overlaying a complex rheumatic/ systemic disease.

However the diagnosis is causing me PTSD of itself. I want my rare rheumatic disease treated and “FND” has been a major obstacle for me getting back onto treatment.

And of course I’m not in prison. So if I’m struggling to believe in it then I can only think that it’s going to be extra hard for your husband to grasp and benefit from in anyway. Also, as far as his relationships with prison staff and his fellow prisoners go - or when he’s released - I question whether a diagnosis of FND is going to be remotely helpful to ether of you. I hope I’m wrong or hope that explaining my perspective is useful to you in some way.

Meanwhile I agree with the previous poster that this should be taken up with your MP if possible.

Devotedtolife
Devotedtolife in reply to Hidden

Thank you for the time you invested in responding. I am sorry to hear about the complexities of your "diagnosis".

From what you wrote your physical health is underlying FND and I can only imagine how stressed doctors are pushing you around to different departments and only adding to your suffering. I am reading into your words of course. I hope you find a doctor with time for you and who believes in a holistic approach of healing the person rather than providing "health care".

I do better understand what you said about it not being a psychological condition. Thank you.

I also see that as different people have different underlying situations, you are all swimming in the dark and FBD becomes a "slippery" diagnosis to hear.

I can not go into details but my husband has PTSD having e oeriences countless traumatic experiences. As he is in prison any talking therapy causes stress because he had a few sessions a while ago and his words were later manipulated and used against him. People may think that is illegal but they did it nonetheless.

His very being is in an impossible situation. Like Brexit - can not remain and can not leave. No resolution expected short of a miracle.

I just want to put the prison in notice so that they make sure he is not arbitrarily subjected to avoidable additional stress.

I want them to know they have a positive duty to do this. He has been through enough and the excess abuse has to end.

The problem is there is no direct communication at all. He has just experienced new symptoms and doesn't have access to the internet to hear testimonies, he can not call the specialists etc the health care team buried the diagnosis knowingly. Yes, I am filing a complaint but what I want is for him to be respected as a human who is suffering all the time.

As you know this all leads to more anxiety.

I will not suggest that I know anything, but for your own well being I would avoid putting labels (like PTSD) on what you are experiencing. Just because it grandiose it. You want to minimize at least in words. I know there is an issue of "not being heard@, I don't mean to step on toes, just saying.

I hope you find healing soon

Hidden
Hidden in reply to Devotedtolife

Devotedtolife

Hi again. I just wanted to make sure you understand that I do not use the term PTSD minimally. Over a lifetime of quite dramatic life events, having many symptoms and conditions downplayed or misdiagnosed or overlooked throughout that lifetime, for this to culminate in a diagnosis of FND overlay has been traumatising to me! I have rheumatic diseases and other autoimmunity which are pretty hard to live with - pain can be imprisoning all of itself.

I’ve tried very hard to help you with basic explanations about FND from a non medical perspective -without telling my own story.

So as you don’t know anything about me please don’t minimise what I say or think I would self diagnose. It’s been recognised by a clinical psychologist in my case so, unlike my lazy FND diagnosis, I do know I have PTSD and medical PTSD (ie caused by bad medics and undiagnosed diseases and a catalogue of misdiagnosis’s). It is a very known problem - particularly when doctor egos allow for a diagnosis such as FND - which leaves many high and dry.

Hidden
Hidden in reply to Devotedtolife

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Devotedtolife
Devotedtolife in reply to Hidden

I meant no judgement or criticism. I have no idea who you are or what you have endured and continue to face.

I heard somewhere that we, I.e the world is safer because doctors ( ego-driven ones especially and other sociopathic tendencies) surgeons would be a danger to society but for the utility of the career paths they have chosen.

I can not know what you face and wish you healing - in the sense of becoming while again by means of a speedy and direct path.

My husbands doctor just filed the diagnosis away without doing a thing, including letting him know. Is it because he wished my husband ill? Is it because he knew nothing of FND and couldn't be bothered to research? Is it because he does not believe in FND?

I do not know.

But one thing I do know:

They say that the reason that dogs lick their private parts, is because they can.

I am just wondering how common that "diagnosis" is in doctors and generally people with authority.

I am sorry for all the difficulties you have faced. I am just learning and appreciated your the wisdom from your painful experience. I meant no ill and am sorry if my words did not adequately express that.

Hidden
Hidden in reply to Devotedtolife

No worries you have quite enough on your plate. Just focus on getting the best help you can for both you and your husband please. 😊

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