"My appointment at MS clinic"

About: Kent & Canterbury Hospital / Neurology

(as a service user),

It started with a letter from the MS clinic inviting me to attend an appointment, (at that point I had been told by my GP that a recent brain scan could, given a number of symptoms that I had been treated for in the proceeding years, be MS or vascular changes). 

The appointment started with the consultant introducing themselves as a neurologist, telling me that my doctor said I had MS (news to me), & that in their opinion I hadn't got MS. they did not ask any questions about my history relating to symptoms (loss of voice for 13 months, problems with balance, recent problems with swallowing, altered sensation (fizzy arms, and base of spine), difficulties with bowels and bladder etc), neither did they ask about family history (one sister and one first cousin with confirmed MS). 

They examined me, and informed me that my arms weren't responding properly (is that why I keep dropping things?), & asked me if I suffered from peripheral neuropathy? (Whats that, and why do you ask?).

They then informed me that I was perfectly normal (ok, that's fine if true). When we sat down they informed me that they didn't think I had Trigeminal Neuralgia, (I did try to explain that this had been diagnosed some years ago in London but in the two lower branches of the trigeminal nerve), apparently you don't get TN in the upper quadrant (I know this to be factually incorrect).

They reeled out a long name and said that was the condition I have to explain the extreme pain I had been experiencing, no explanation of how it comes about. They went back to telling me that my MRI  brain scan was normal for my age. I asked about some previous strokes which had been diagnosed in 2013, following cognitive problems including speech, movement and left sided weakness. These strokes had been diagnosed by MRI with contrast, by a well known London hospital, and read by a team at Charring Cross. 

I had actually only been aware of one of them, but had at the time been unable to move, or speak, with searing pain in the head. Consultants had explained that I had experienced a small stroke, a bleed in the brain, and had shown us very clear markers on the contrast scan pictures. But nevertheless, the consultant at this appointment informed me that I had not had any strokes, the scan (without contrast), had shown a completely normal result.

By this time, I had given up. I have experienced consultants like this one in the past. I have long term mental illness, and as a result I think an assumption is made that I am making things up. I had a very strong feeling that the consultant was in a rush, and was patronising me. They made a number of statements that I know to be untrue (apparently it is impossible to develop MS over 50; and yet recent studies have shown MS to be UNDER diagnosed in the 50-65yrs old cohort), they swept away diagnosis made by doctors with more experience than themselves, and more information at hand, and left me feeling as though I was wasting their time and I left feeling very confused.

The actual dx isn't overly important as I do have a good GP, and know that she will treat symptoms as they arise in any case, and if treatment for MS in the area is led by the consultant I saw, I am better off without the dx. But I did come away feeling as though all the work that I've been doing over the last few years in respect of trying to maintain some degree of mobility, of reducing my Stroke risk (stopped smoking), was negated in one breath by a consultant in a rush to get away.

As a slightly amusing finale to all this, as we left the consulting room, and reached the main corridor, we saw the consultant coming out of the loo, perhaps they were in a rush to get there, but no patient would mind waiting an extra few minutes whilst they spend a penny!

Responses

Response from Kent & Canterbury Hospital

We are really sorry to hear you did not have a good experience in your neurology clinic appointment. We would like to be able to get further information from you so that we can undertake a thorough investigation in order to improve our services. We would therefore be grateful if you could please contact the PALS team. You can do this by:

Email: ekh-tr.pals@nhs.net

Phone: 01227 783145 or 01227 864314

Website: https://www.ekhuft.nhs.uk/patients-and-visitors/information-for-patients/patient-experience-team-and-pals/making-a-complaint/complaint-form/

Many thanks

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

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