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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 08-09-15, 03:39 PM   #1
King13
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Default St Georges Hospital Genetics Clinic

Hi All,

After requesting a my GP make a referral in April I finally had a letter from the above and need to call and make my first appointment by 17th this month...

Just wondering if anyone has experience of the above clinic and whether they were happy with the service/staff etc or whether you have any tips for people going for the first time?

I ask as not really sure what to expect, appreciate all clinics may differ.
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Old 08-09-15, 10:35 PM   #2
Pollypanda
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Default Re: St Georges Hospital Genetics Clinic

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Originally Posted by King13 View Post
Hi All,

After requesting a my GP make a referral in April I finally had a letter from the above and need to call and make my first appointment by 17th this month...

Just wondering if anyone has experience of the above clinic and whether they were happy with the service/staff etc or whether you have any tips for people going for the first time?

I ask as not really sure what to expect, appreciate all clinics may differ.
Hi there King13. I can help you out. My husband and I know the staff at St George's genetics clinic. This is the clinic we went through for my husband's Huntington's test, and again when I had a CVS test for Huntington's in my first pregnancy.

The people we've had the most interaction with are the genetic counsellers, Charlotte and Ginny. They are both lovely, caring ladies who will take care of you. So are the midwives in the Fetal Medicine Unit, if you are even in the position of needing their CVS services.

The only negative I can think of was during the testing process. We had a professor deliver the results, and he wasn't the right person. Not great on people skills. When he told us the results I burst into tears and he seemed surprised, and then just kept talking. I have no idea what he said as I was in pieces, but he didn't seem to notice.

However, this was in 2011 and I have a feeling that the counsellors are now much more involved in delivering test results. I would recommend that you double-check that and if they're not involved, don't be afraid to ask if they can be.

I wish you the best of luck xx
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Old 08-09-15, 11:18 PM   #3
Melody
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Default Re: St Georges Hospital Genetics Clinic

Hi King13,

Can't help you with St Georges although Pollypanda has given you her experience.

Ours was done locally but base in Northwick Park, they were excellent.

Just wanted to say Hello and welcome.
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Old 09-09-15, 09:03 AM   #4
Trish
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Default Re: St Georges Hospital Genetics Clinic

Hi King

No direct HD connection to St Georges although my Bro in Law goes there and see neurologists for another condition. Don't ask me what it is as they don't know, although interestingly they did the HD test as a precaution and said he was negative on that one. They then said he had CADASIL (click HERE for details but then ruled it out after other tests. He seems to be happy with the services he receives and seems to even like going.

Anyhoo

On the HD matter I did a search on the word 'George' in here and came across a thread started by a Member called Holly. Click here for Thread. There doesn't seem to be much by way of feedback on how it all went I am picking up from the htread and a post above that there does seem to be criticism of the Hospital's consideration for counselling and full awareness of what the implications are for those who test positive.

It might be worth asking to talk to your HDA Spcialist Care Advisor and ask what they can tell you about the hospital's handling of HD results. They may have a view on questions to ask before and during.

I wonder if it might also be worth contacting PALS and ask if they have any information such as leaflets on what to expect. Chances are they wont, but at least you might get something sent to you asking for feedback under this heading:

improve the NHS by listening to your concerns, suggestions and experiences and ensuring that people who design and manage services are aware of the issues you raise

The PALS contact details are here
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Old 09-09-15, 10:50 AM   #5
Allan
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Default Re: St Georges Hospital Genetics Clinic

.
Hi there

I've just looked up www.stgeorges.nhs.uk and found: Genetics, Movement Disorders and this guy, Dr Jan Coeburgh. They all mention HD.

I also collect Fact Sheets and similar texts from around the world:

Huntington Disease Testing Booklet

GENETIC TESTING for HUNTINGTON'S DISEASE

http://hda.org.uk/hda/factsheets

Huntington Disease - Neurological conditions 1

Genetic Testing

GeneticTesting for Huntington Disease

Predictive Testing for Huntington Disease

Apologies if it seems like overkill - but they are the best reads and you can probably mix and match ...... and find a few relevant questions to ask at your Genetic counselling sessions.

Best wishes

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Old 17-09-15, 10:16 PM   #6
Stuart
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Default Re: St Georges Hospital Genetics Clinic

Hi King,

I saw that you were to have called to make your first counseling appointment today and am wondering if you went ahead and did it.
I just went through testing three weeks ago and was very lucky to be negative.
Allan has given you some good links and I too recommend that you try to educate yourself as much as possible so that you know what the counselors are talking about and are prepared with some questions for them.

Most importantly you need to feel that you are taking the test because you want to and not because someone else is pressuring you to do it.

It took me quite a while to prepare because I needed to feel as sure as possible that I could handle a positive result. I read about it and I then carefully selected a handful of friends and family members to talk to about it. It was very tempting to go through it in secret but I'm glad I didn't because when I opened up about it to the right people they were very happy to be involved and lend their support.

Sharing my progress on here as I went through it was a huge thing for me. The amazing people on this MB are all living with HD which made me feel much less alone. I think it's only the people here who really fully understand.

I hope you are going ok.
All the best.
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