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"Two very different sides to the treatment received"

About: Queen Elizabeth University Hospital Glasgow / Neurology

(as a service user),

I am writing here to demonstrate that matters are getting worse rather than better in this Neurology Dept. As an outpatient and relative of an inpatient I feel I have seen two very different sides to the treatment received. Judging by my experiences I have every confidence that if I was to be seen as an emergency with an obvious problem like stroke I would be given exemplary care and treatment to save my life and limit effects of the episode you have experienced. 

As an outpatient, especially of long duration and even more especially as someone who has or has ever had any mental health difficulties, I feel I must beware. 

I have been attending for 10 years. I was referred after spending a week in the Royal where I had been sent after a visit to ophthalmology. MS was considered a possibility but alas no lesions appeared on screen to confirm it. TIA was diagnosed but on reflection stroke team at Stobhill decided discoloured area of the brain couldn't be attributed to this. Hormonal problems were raised by third consultant, who told me not to worry, that I'd be much better after menopause. Fourth consultant was confident my symptoms are definitely migraine related. I've had migraine since teenage years but failed to get any answer as to why it would change from visual problems, nausea and head pain over a couple of days to life changing and debilitating symptoms such as left sided weakness, severe pins and needles, vomiting, eye pain, digestive tract pain, blurred and/or double vision and bladder weakness but less head pain in my early 40s.

I have tried all suggested medications and suffered many horrific side effects but got very little relief.

As I was having difficulty accepting that migraine was the cause of all of my symptoms consultant number 4 decided after discussion with myself that "a new set of eyes" in the form of another Dr who would be asked to consult with me as if I were a patient attending for the first time. 

I hope you're still with me because this is why I wanted to share the above. After 10 years and 5 consultants...............Dr "new eyes" has decided...........

It's all in my head. But its neurological so it would be you might be saying. Alas by all in my head the Dr means it's the mind reflecting trauma onto the body and that trauma manifesting itself physically. This is the first time in my life I've had a scientist accept and give mind over matter as a diagnosis. FND is what they called it. After much research over the years I'm familiar with the term on forums where it seems to be generally accepted as meaning "great, you've had a few bumps in the road, a bit of anxiety, oh wonderful, a bit of PTSD. A fantastic diagnosis for a neurologist because it means goodbye, discharged, please go be someone else's problem."

I have to agree with this because after a prolonged physical examination I was told there was no time left for discussion or questions of which I have quite a few. I had a scrawled web address handed to me an told I'd find more information there. I can't imagine a more impersonal, cold, uncaring doctor who could barely conceal their contempt for the mad woman before them. I may have been persuaded had this doctor themselves asked me a few questions about my general health over the years and my current mental health treatments. Few questions, no discussion, no eye contact, just scrawling through my notes on the computer and a physical, seemingly for the benefit of the student in the room. Thankfully I'm not suicidal because I think this treatment could push someone more vulnerable over the edge. It's a diagnosis with comparatively little research behind it.

My opinion is that the department is so stretched this diagnosis will be attributed to more patients with mental as well as physical difficulties. How do they decide that the mental causes the physical rather than the other way around. Very dangerous territory which I think could lead to vulnerable patients not taking meds for mental illness in the hope of having their physical challenges taken seriously. 

Final point, by their very nature, many neurological illnesses are unpredictable yet if you are too ill to attend an appointment, you will be punished by having to wait six months or more for a new one. I saw consultant number 4 in March and waited until Oct for my appointment because as I was being seen as a new patient, after 10 years of attending I'd wait my turn like everyone else. 

I wasn't seen as a new patient, I felt like a pest to be gotten rid of. No follow up suggested or advice re migraine given so not sure if that's imagined too. 

Responses

Response from Elaine Burt, Chief Nurse, Regional Services, NHSGGC 16 months ago
Elaine Burt
Chief Nurse, Regional Services,
NHSGGC
Submitted on 24/10/2019 at 09:28
Published on Care Opinion at 09:28


Dear Glasgow222,

I was very sorry to read your post and your view that the outpatient neurology department did not meet your expectations. It is clear from your experience this has, and continues to be, a worrying time for you. Especially since there has been difficulty providing you with a clear diagnosis.

Our Consultants often have students with them as we are a teaching facility and this in no way influences them carrying out a thorough examination. I am very sorry that you felt this was the case.

Please let me reassure you that FND is a recognised condition that can be very distressing and disabling for patients. It is only after thorough tests are carried out to exclude other conditions, that a Consultant Neurologist would then consider and make a confirmed diagnosis of FND.

I can appreciate that you have questions and remain worried about your health and these could not be answered within the time available. We would be happy to offer a further appointment to assist you. If this would be helpful please can I ask you to contact Miss K. Donald, on 0141 2014500 or kim.Donald@ggc.scot.nhs.uk

Kind Regards

Elaine Burt

Chief Nurse Regional Services

NHS Greater Glasgow and Clyde

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