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"Unhelpful information from neurologist"

About: Queen Elizabeth University Hospital Glasgow / Neurosurgery (Ward 64 – 66)

(as a service user),

I was diagnosed with multiple sclerosis in early 2023. Since then, I have seen my neurologist twice and both times I have left feeling belittled, stupid and ignored. This is actually following on from how I felt prior to being diagnosed when GPs were not taking my symptoms seriously. 

In the first appointment the doctor spent a lot of time explaining the disease to me, I had already done a lot of research prior to this. I had a few questions, one of which was incredibly important: Can my MS develop into the more degenerative Secondary Progressive MS (SPMS)? They told me no, and I believed them. Only when actually speaking to another person with MS who recently was diagnosed with SPMS, that it is in fact very true. It took me a while to process this. 

I also asked if they had any recommendations on diets? ( I have read info about the Wahls Protocol and the Overcoming MS diet, which has had positive results).  They said no, nothing else. 

I asked if my weight increase/decrease had been found to have any link to symptoms or relapses?

Again they said no, and seemed to think I was talking about a diet to lose weight, not because of any health reasons. 

I asked if I can access my MRI scans? They told me no. I learned later that this was wrong. 

I asked if the  lesion locations in the brain influence the symptoms I experience?  I was told no.

Besides this, when asking about my symptoms, I mentioned brain fog and memory problems I've been experiencing. They  told me it was probably because I was depressed. Completely overlooking the fact that they are incredibly common symptoms, and not even entertaining the idea that they are related to my MS. Also, they asked me why I was depressed. Maybe because I was diagnosed with a chronic illness this year. After being told this in our 2nd appointment, I realised there was no point talking about any other symptoms I have been experiencing, and there were more, because they were just going to try to explain them all away. 

Finally, when talking about my fatigue, which is sometimes debilitating and makes working a full-time job, they made it clear there was nothing that could be done (mentioned modafinil but only said it wasn't really used anymore). Failing to mention anything I could try to help, not even asking if I drink coffee.

I can take the lack of bedside manner and poor communication skills. But for a professional in the field, working with people that have MS, they should NOT be giving the wrong information. I don't know if they somehow thought they were protecting my feelings, maybe because I'm a young woman and I might get hysterical, but that is not their decision to make.  

Finally, I really don't appreciate being told I will probably change my mind when asked if I want children and I said no. I find this so unbelievably patronising and sexist. 

I have learned more about the disease from social media instead of a doctor. I have also felt better treated by strangers online.  

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Responses

Response from Eilidh Gallagher, Clinical Services Manager, Institute of Neurological Sciences, NHSGGC 7 months ago
Eilidh Gallagher
Clinical Services Manager, Institute of Neurological Sciences,
NHSGGC
Submitted on 11/09/2023 at 15:28
Published on Care Opinion at 15:28


Dear delphinusfw64,

Thank you for taking the time to share your experience. I am sorry to read of your experience with the Neurology department and your MS Consultant. We strive to deliver high quality person centred care and I am sincerely sorry if we have fallen short of this expectation for you. I'd be keen to further investigate your experience to see if we can learn anything or improve any of the information that you have been given.

You can contact me via e-mail or phone per the below if I can be of any help.

Kind regards,

Eilidh Gallagher
Clinical Service Manager
Neurology

tel: 0141 201 2548
email: eilidh.gallagher@ggc.scot.nhs.uk

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