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E246

Prof Mathais - Anyone Seeing Him As Inpatient - Opinion

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Hi,

Been on a waiting list for inpatient appointment with Prof Mathias in London.

At the original consultation (which was a second opinion) my notes were missing however he said I need a head scan and he would arrange cardio's during inpatient stay.

Then I became really ill before Xmas and GP wrote and they put me on urgent waiting list.

I got a phone call confirming I would be admitted for medication adjustment and symptom control but no mention of head scan.

So GP wrote again requesting this.

I phone last week and I am neither on the urgent list nor having a head scan, so have had to forward all correspondence and am awaiting word from Prof M.

SOOO fed up with the medical profession.

Is this appointment worth waiting for?

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Hi Emma

I was there the other day and am waiting for a 4 day in-patient app. I think they are SO busy as it is the only PROPER autonomic testing unit in the UK. I take it you already have had the TTT?

When I went the other day, I was kept waiting for over 2 hours as the desk staff did not mark me in so they presumed that I hadnt turned up! I saw one of his associates,who was just on his way to somewhere else, and he had to squeeze me in as I had to get back for my son at school. I had to rush through the hospital with him to another dept and by that time I was all rushed and my mind went blank when he asked me my issues lol! There was SO many things that I forgot to tell him.

I would contact them and jolt their minds about the MRI.

Was Mathias any good?

I have heard the waiting list can be months so you are lucky that your doc has wrote off to them

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Hi Tinks,

I had autonomic tests last september at the unit and then a consultation with P Mathias last october. Like you the staff were confused and I know to always ask to see the doc you want to at the beginning and it was a good job I did as they thought I was a repeat appointment and had me down to see someone else.

When i went in my test results were not in the file and therefore he could not say much. Subsequently I was put on the inpatient list (11 months) but was so ill before xmas gp wrote and should have been bumped up to the urgent list.

I am travelling from Newcastle so it was a lot of travelling which I can't do on my own and I still have no results.

In Newcastle I am caught between cardio and syncopy depts. I keep being passed backwards and forwards and still I have svt's that trigger either the pots or a cardio problem and no one knows which.

Keep me posted and likewise I will let you know what happens.

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Can only speak from my own experience but for piece of mind alone it is well worth seeing Prof M. Dealing with an Autonomic dr who is a leader in their field and has seen many others with POTS is extremely reassuring.

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I have to say that Prof Mathias is a very calm collective and caring consultant however the sytem he works in is not!! I have used all my savings i ONCE had to go privately, and still there have been mix ups between having notes moved from dr to dr. My advice and i realise its not always possible is if you can afford for even a private consultation, they are un rushed and the time between new drugs suggested can be weeks instead of months. I am lucky i was in a position with family and friends I could pay for my diagnosis becuase after 4 years the NHS had given up on me....

Trying to end on a positive yes i believe Mathias is worth every penny with his knowledge, experience and compassion.

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An other thing is depending where you are in the UK there are a few Dr.'s with an interest in ANS dysfunction, that you may want to try as well.

This is a good read; http://www.stars.org.uk/files/file/pots-downloadable-pdf/newcastle-perspective.pdf

You could try finding these guys as well;

http://bjcardio.co.uk/2010/02/postural-orthostatic-tachycardia-syndrome-pots-a-diagnostic-dilemma/

Just click on 'view details' under Authors.

Not sure if this may be of use:! http://pmj.bmj.com/content/83/981/478.abstract

There is a Dr. in Bristol that has been doing some work in the field I will try find his details if needed ok.

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The doctor in Bristol is doctor Glynn Thomas he's at the Bristol Heart Institute and has several POTS patients. He seems to be a gem!

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Just one thing with with Dr Thomas, a few months ago I was told by his PA that he is not able to take any NHS patients at Bristol and if you want to see him privately he spells it out to you before you even book an appointment.

He can not prescribe any drugs himself, the drug in question for me at the time was octreotide. He says he can see you as a private patient but he will draw up an "action plan" to be sent to your GP. So you have to have an excellent GP who is willing to write out pre scriptions for things like Midodrine that are not licensed for POTS. Again i am so lucky with my GP becuase as his wife has Sebelium in London which is the only clinic in the UK that can legally dish it out for migraines. And his words to me were I can see the red tape that i can cut for you and help you here. My point is Dr Thomas can only adivce what you should take but your GP has to agree to pre scribe it to you.

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