Good appointment: Having moved down to... - Hughes Syndrome A...

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Good appointment

london-lass profile image
7 Replies

Having moved down to Cornwall from London, I was referred to the Royal Cornwall Hospital in Truro to be covered for my APS. What an amazing team. The individual consultant did not want to be named, but the team are obviously well on top with recognized protocols. They had already seen one other patient with APS that morning! So I would recommend them. My Gp practice has individual appointments for INR testing, but are looking into my self testing. Ap.parently they have a few APS patients too

I appreciate that there is a South West group already set up, but it is a bit far for me to travel. If there is anyone out there in the Truro area who would like to meet up, it would be great to know. I am in Polzeath.

Will have to change my name on here! Keep going everyone! Blessings Ann

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london-lass profile image
london-lass
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7 Replies
Manofmendip profile image
Manofmendip

Hi Ann

This all sounds very positive indeed.

Our APS South West Group is based in Bath so I can understand that we are actually further from you than we were when you were in London. Good luck with setting up APS Kernow.

Please let Kate Hindle at HSF know about the names of the Drs at the Royal Cornwall Hospital who are APS knowledgeable, so that she can add them to the HSF website.

Best wishes.

Dave x

tim47 profile image
tim47

Really interested to hear about resources in Truro. I am near Exeter and travel to Swindon which is slightly further than Truro but to my mind a much worse drive especially when, as last time, the motorway got closed leading to something like a five hour journey. I will try and PM you.

Tim

tim47 profile image
tim47 in reply to tim47

Thanks for the reply Ann, have responded with some hopefully helpful info.

And, as I should have said before, welcome to the wonderful West Country and all that it has going for it.

Tim

Hello Ann! Hope the move went well and you're enjoying life in Cornwall. Please can you email me when you get a chance as we don't have any specialists on our list for the Cornwall area. Thanks Kate xx

london-lass profile image
london-lass in reply to

Hi all.

Thanks for the responses.

Kate, I have emailed you!

Tim, I will respond.

Man of Mendip, thanks for your kind words!

Blessings Ann

Andrewl profile image
Andrewl

Just a note to say of similar ilk, when I was in rural western highlands, north-west of fortwilliam, on the road to the isles, I had to get inr done at a medical centre there, and in conversation I wrongly assumed no one would know of APS, how wrong, they had several patients, and very switched on to it all. Suffice to say, some of the really rural centres are more familiar as they have to know more about it to cope in general, and maybe better attention to detail? However, Ann, wishing you all the best wishes for your new life in Cornwall, may it be a move of happiness and fulfilled dreams.

YvonneW profile image
YvonneW

Hi Andrew, Can you let Kate Hindle at the HSF office know the contact details for the unit where you were seen, so we can add them to the APS specialist directory on the website.

(kate.hindle@hughes-syndrome.org)

Thank you. Yvonne W

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