All in the Mind, (FND) BBC Radio 4 ..

[Shimmyaway]

[e-mail].

This weeks’ episode was partly dedicated to FND, and is now on BBC SOUNDS. The interviews with 2 patients give a positive outlook for treatment and outcomes, from the dedicated team run by Prof Mark Edwards. Whilst this is admirable, and media coverage of FND welcome, the patient experience represented may not be typical of most FND sufferers who would love to step inside an FND clinic to receive satisfactory diagnosis , treatment, and ongoing support, from a knowledge able multidisciplinary team. The All in the Mind team are open to receiving emails.

[GreenCottage]

Thanks for posting, and thanks for alerting us to the email contact.

[Shimmyaway in reply to GreenCottage]

I have already contacted them, and added a list of the issues raised at the parliamentary event last year, which affect most of us not in the vicinity of an FND clinic. ..but the more the merrier please.

[GreenCottage in reply to Shimmyaway]

Yes, I have written to them and explained that here in Wales there is no pathway whatsoever for FND and asked the question if that would be acceptable in anyway if it was MS or Parkinson's.

[tabey]

I’m sorry I’m sure everyone who has worked on this is doing a great job but come on please change the title yeah this is a small rant but just seeing “all in the mind “ just hits my red button

Sorry if this upsets anyone and yes I know it ‘s a title but Fnd has taken so much from me and I’m often told oh it’s all in the mind you can over come this blah blah been trying every day for over 8 years now to improve my mind and I just seem to be getting worse

Like I said it’s not aimed at anyone but it’s just the title that has triggered my rant

As you can tell I’ve had a really harsh time of my Fnd of late and collapsing yesterday and being left on the floor out of it to be told no real point taking you to A&E because they will just say it’s all in the mind and discharge me like they have before has just rattled my cage

[Lady4 in reply to tabey]

Hi Tabey, I can see how that could trigger you as its so relatable to your current experienced. I am so so sorry you have been overlooked for so long, its not right and something has to change. Perhaps you could copy and paste your reply to this article in an email to them. Hugs xx

[Shimmyaway in reply to tabey]

The BBC team should have known they were treading on sensitive territory and made it clear to listeners they do not subscribe to the view that FND is all in the mind. Whilst it may be of no practical value to refer the 'doubters' in A/E to Jon Stone's article expressing contempt for those who accuse FND patients of 'malingering', it might just make them realise they should do their homework before they speak out against patients, and make them feel a little smaller. Best wishes.

[Van604 in reply to tabey]

I agree. Also, while I liked a lot of what the psychologist said, I do wish they wouldn't use such terms as "illness beliefs". This is so open to misinterpretation and just feeds into the idea that the illness isn't real and is all in the patient's mind. I liked the other term she used, "illness schema" better. Some people might think this is pedantic, but having been on the receiving end of physical abuse by a paramedic, who declared she thought this was "behavioural" and then gave me a vicious trapezium pinch, which left a nasty bruise, I know that words matter.

[Sparklingsunshine in reply to tabey]

Bipolar is in the mind, psychosis, schizophrenia, severe depression, personality disorders, bet no one tells those patients they need to think their way out of it. No they get access to medications, therapy, support and help. Titles like this just perpetuate the idea that people choose to have FND and if they just tried a bit harder they would recover.

[210272]

Thanks for posting about this - you saved me a job 😅 I listened to that and although it's clear that some good work is being done in the UK, access to effective treatment is so patchy that it's not surprising that some people don't get improvement. I am also concerned that conditions like Akathisia are being misdiagnosed as FND as are several other rare conditions.

[Lady4]

I took away a lot of positives:

By having that validation and explanation (not just directed to some website), it helps one understand and takes the element of fear away and early dx is key.

The psychologist said "that professionals acknowledge that stress and anxiety could be either a cause of the underlying symptoms or a consequence and that we have a long day to go to understanding how peoples experiences affect their mental health or the reverse".

However, I think either way access to rehabilitation should be timely. Professor Edwards said that some may not recover as quickly due to other conditions and I am sure with initial OT/PT assessments these would be addressed with additional psychology, specialist speech therapy etc. OT can do move than help with movement disorders they can also help with sensory issues.

Plus the time wasted on waiting to see a Neurologist could be used for rehabilitation.

I loved how the stand up, sit down technique whilst watching himself was game changing and that Specialist acknowledged he was re-directing the attention from the knee to the surface of the mirror to bring back automatic movement.

[GreenCottage in reply to Lady4]

Hi Lady4,

I have a lot of sensory symptoms and live in Wales UK where there is no NHS Pathway for FND. I was interested in your comment about OT being able to help sensory symptoms and was wondering if you know of anywhere where I can look this up.

Thanks in anticipation of your help.

[Lady4 in reply to GreenCottage]

Hi, sadly I couldn't access it because my son wasn't dx with Autism when young (still on the list, suspected to be on the Spectrum).

But I do believe adjusting sensory input whether decreasing or increasing can help have a better quality of life. Hence why I was trying to get a sensory assessment, however I did get hold of the questionnaire.

Did you check out the referral process that was on Re-Active's first paper posted in the Practical Neurology.

Bear with I will see if I can screenshot for you. I am so tempted to print this paper out and distribute to all local surgeries.

[GreenCottage in reply to Lady4]

Thanks for the reply. Yes I picked up the referral process and am now working on heart coherence using Heart math. I will also have another go at compression.

Wishing you all the best.

[Lady4 in reply to GreenCottage]

Thanks. You too, maybe you can find a private OT to do a sensory assessment if funds allow.

[Shimmyaway in reply to GreenCottage]

Hello again. I too have sensory symptoms ..sound and touch. I did have some therapy from a neuropsychiatric OT..but all she offered was talk, and specifically chose not to discuss whether she had ever had results with other patients, and was not willing to offer an opinion on the outcomes of my own therapy either ! Needless to say I still struggle with electronic sounds, which make me stutter or shriek. I tried to track down a sensory OT, but both the NHS and private ones are focused on children with ASD. I did come across the following articles. There are consensus guidelines for OT in FND. My therapist helped write them! but in practice ..nothing doing.

doi.org/10.1016/j.spen.2022...

Sensory Processing Difficulties and Occupational Therapy ...

Neurology® Journals

neurology.org › CPJ.0000000000200286

Hope that helps

[GreenCottage in reply to Shimmyaway]

Thank you for your help.

[Shimmyaway in reply to GreenCottage]

Occupational therapy consensus recommendations for ...

Journal of Neurology, Neurosurgery and Psychiatry

jnnp.bmj.com › content

It looks as if there are some problems with uploading /downloading

[Shimmyaway in reply to Shimmyaway]

Occupational therapy consensus recommendations for functional neurological disorder FREE

Journal of Neurology, Neurosurgery & Psychiatry Oct 2020, 91 (10) 1037-1045; DOI: 10.1136/jnnp-2019-322281

[GreenCottage in reply to Shimmyaway]

Thanks again 🙂

[Aberheart]

Thank you for sharing