Wednesday, 19 March 2014

A little communication goes a long way

My battle with a dry mouth and swallowing issues continues.  After my disastrous ENT appointment where I collapsed after being bullied into having Lidocaine sprayed up my nose I went to see the top ENT at Bassetlaw Hospital.

I was prepared for the appointment, I had written down my symptoms so I wouldn't forget anything but all he wanted to do was send me for the barium swallow test.

I asked why and he said because your GP has asked me to.  I tried to explain that I only had difficulty swallowing dry and textured foods because they stick in my throat because my mouth is dry.  He said I needed to have the test done to check my swallowing.

I pointed out the difficulty I would have going without anything to eat or drink for 11 hours.  He looked confused and said I didn't have to.  I explained the appointment letter letter clearly stated no food or drink after midnight the day before the test.  My test was booked for 10:30 and would take 30 minutes, hence no food or drink for 11 hours.  He said that wasn't the case at all.  He asked the nurse and she said they were sending out a generic letter with that information on for all procedures, which isn't exactly helpful to people like me who need to stay hydrated.

I showed my long list of symptoms to the ENT and he said I'd have to discuss those with my GP.  I politely told him that I was here to consult him about those issues!  He decided to examine me and he asked if he could look in my throat.  Instead of putting a camera down my nose he held my tongue down with a strip of gauze and looked in my throat with a small mirror, similar to the kind dentists use.  It was quick, painless and gladly there was nothing wrong with my vocal chords.

Now why couldn't the other doctor have done that?!?!?

The ENT still wanted me to have the barium swallow test.  I still failed to see the point and told him I didn't want to have any unnecessary tests that would delay and investigations and treatment into the real cause of my problems - my very dry mouth.  He said what investigations?  So I had to show my hand.  I asked him directly about Sjogren's Syndrome.  He agreed that many of my symptoms were consistent with Sjogren's, although he said my low grade fevers and weightloss were not associated with the condition.  The ENT said he would refer me to his colleague who would look into it for me, and he would let him decide if I needed the barium swallow test or not.  Yeah, he wasn't going to let go of that one!

Considering my run of bad luck with consultants from Bassetlaw Hospital I decided to see if there were any private consultant I could see instead.  It's an expense we can't really afford, but when it comes to my health we can't afford not to.

I came across an article in The Guardian about Sjogren's Syndrome and it gave the helpline number for the British Sjogren's Syndrome Associaion  so I gave them a call.  I spoke to a very nice lady who was interested in my story and she recommended a specialist called Dr Elizabeth Price.  She recognised my symptoms, including the low grade fevers and weight loss, and she said it's surprising how many Sjogren's patients also have Ehlers Danlos Syndrome and POTS.  I thanked her for her advice and I have booked an appointment to see Dr Price.

Communication is very important.  So is getting to speak to the right people.  I just wish the NHS would actually LISTEN to me when I'm trying to ask for their help.  Ignoring me and exclusively going by what a GP has written in a letter after seeing me for two minutes is never going to give the most accurate story.  I'm just grateful that money buys time in private appointments and the more time you have the more chance you have of getting someone to listen.  I'm also grateful for the BSSA's helpline, it could mean I've found the missing piece in the jigsaw.

I'll keep you updated!

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