Filled in a GP econsult form asking if they kn... - CLL Support

CLL Support

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Filled in a GP econsult form asking if they knew what I do if PCR positive

Harvist profile image
9 Replies

Basically ? No.

Ring 119 seems to be the only route and if I feel "awful" try 111.

I think we're going to need a lot of effort to get the early treatments in the immediate future.

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Harvist profile image
Harvist
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9 Replies
Poodle2 profile image
Poodle2

Harvist, check my previous post, I was looking for the same info desperately last week since I was in a very close contact with someone who tested positive.

Tried to sum up everything in one post.

UKfulloflife profile image
UKfulloflife

I asked my consultant what I should do, should I test positive. Immediate answer.... ring my nurse specialist or my research practitioner (I'm on a trial) and if they weren't available, ring him. Others have said the same. as it seems this is the best way to get urgent access to the new treatments.

RosettaClapp profile image
RosettaClapp in reply to UKfulloflife

I have been trying to get through to my specialist nurse for a whole week now with no success at all sadly

Belfastbees profile image
Belfastbees

Poodles post was very good, great research and well set out. There's also been another user of the forum who tested for covid and did manage to get treatment eventually but having to ring around all the different medical folks is not really very encouraging. It must be stressful enough for folks to test pos and then have a feeling that noone knows what to do with them is further cause of stress.

RogerPinner profile image
RogerPinner

I received a letter from from the haematology dept at my hospital, UCLH. It pretty much reiterated the latest govt advice but in much more friendly and helpful terms. The one thing that stuck out for me was. "Your specialist team can also make a referral if necessary", see below.

"Following a positive PCR test, most patients will be contacted by a local NHS coronavirus medicines team to assess whether they might benefit from treatments ( Molnupiravir/Lagevrio and Sotrovimab/Xevudy). However, some patients including you might not be contacted.

If you test positive after a PCR test you must contact your GP practice or call 111 who can make a referral.

Your specialist team can also make a referral if necessary.

These treatments will only be available from the NHS and will not cost you anything. The NHS will never ask you for your bank account details or to pay for treatment."

That's my fall back, I know the hospital will be there if I need them. I'm unlikely to bother with 111 or the GP.

Roger

RosettaClapp profile image
RosettaClapp

all bluff and mirrors from this dreadful government sadly

RosettaClapp profile image
RosettaClapp

Bristol and S Gloucester seem to have things organised if this site is anything to go by but there seems to be nothing at all for Somerset sadly

remedy.bnssgccg.nhs.uk/covi...

charliegirl profile image
charliegirl

I am in Gloucestershire and had a telephone consultation with my local haematologist a couple of days ago. Apparently the Clinical Commissioning Group here is doing the organising of treatment. He asked me to contact haematology unit as well, however, if I test positive just to be doubly sure there is no delay.

I am hoping that I won't be inbthe position to need it though.

Happy Christmas

Charlie Girl

Access to antivirals for CLL patients is automatic in the UK. Once you have a positive PCR on the NHS it will like to your records, and start a process to ship you antivirals, or arrange IV antivirals in hospital. The GP’s are not involved.

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