Prof Cohen: Just had a letter saying... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Prof Cohen

GillyA profile image
GillyA
•12 Replies

Just had a letter saying Prof Cohen at UCLH has retired and all patents will be reviewed 😟

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GillyA profile image
GillyA
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Star13 profile image
Star13

Yes she told me three weeks ago it was her last clinic that day. I’m devastated. 😢 All the good ones are retiring. I haven’t had a letter about being reviewed, that is a concern😳I hope they are not going to do what Guys did and discharge everyone.

Sand1985 profile image
Sand1985• in reply toStar13

I thought guys had a dedicated aps clinic or is that not the case? Which london hospitals do have a dedicated aps clinic then?

Star13 profile image
Star13• in reply toSand1985

Both Guys and UCH do have APS clinics but Guys were overwhelmed with new patients after the pandemic and had to discharge a great majority of patients to make way for new ones. The synic in me however thinks that was more about money because they get more money for new patients than they do for existing ones. Now I’m wondering with a change of management at the helm at UCL APS if they will do the same to save money. Let’s hope not.

Sand1985 profile image
Sand1985• in reply toStar13

Oh I see thanks for sharing. Let’s see what happens at uclh as I’m there too.

MaryF profile image
MaryFAdministrator

Thanks for letting us know, must be a worry for you. MaryF

Still-smiling profile image
Still-smiling

Hannah Cohen was the APS clinic and a world expert. Thanks to her had plasma exchange and rituximab. Occasionally would see rheumatology dreadful used to deny I have APS. The letter suggests other departments, other hospitals or discharge. Main problem my INR is 4-5 and I was one of the patients who trialled coagucheck machine 27 or so years ago. Doctors panic about such a high INR and to make matters worse local icb stopped funding GP testing!I am very poorly now and don't think I will be around for new treatments such as testing treatments for all autoimmune. Research biotech company Oxford and west coast US. Also now thanks to long COVID they are identifying proteins responsible. Thirty years and all been a challenge. But huge thanks yo Hannah

GillyA profile image
GillyA• in reply toStill-smiling

Yes, I’m worried too. The local anticoag service is very weak, I can’t self test or stabilise on warfarin. Prof Cohen and the anti coag team have made such a difference.

KellyInTexas profile image
KellyInTexasAdministrator• in reply toGillyA

I could never stabilize on warfarin. Im now on enoxaparin injections every 12 hours.

GillyA profile image
GillyA• in reply toKellyInTexas

Me too and the local system won’t prescribe it, so her clinic has been doing it.

Honeymonster profile image
Honeymonster

I am so sad to hear that!

She has been such a great help to me since my clots in 2018.

I feel sad also that I didn’t get to say goodbye and to thank her for everything.

My next appointment is in April. Who knows who we’ll see now as I know they have been very short staffed in the anticoagulation department for a year or so.

BTR1963 profile image
BTR1963

I’m very sad to see Prof Cohen go, she’s been my consultant for over 10 years and is absolutely amazing. She has referred to the clinic at the Royal Free, does anyone have any experience of it?

KellyInTexas profile image
KellyInTexasAdministrator

I have an appointment with her. Next week at the McMillan center. I haven’t had an email come through telling me otherwise… hopefully no surprises?

I hope UCLH has an excellent ApS specialist fill her amazing shoes.

Wishing her a peaceful , happy , and well deserved retirement! What an amazing career of service she’s given .

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