Oxygen user and covid antivirals

[BreatheasyBe]

Hi hope you’re well. My parents are staying with me, dad tested positive with covid yesterday. He’s doing really well a little coughing now and again so pretty mild. So far my lft are negative however I’ve made enquiries and my consultant doesn’t think I’d be eligible for antivirals if I test positive as I have a chronic condition but functioning immune system. (she hasn’t really been given any further guidance on it other than reading what’s on the gov app) I’m on oxygen and pre-assessment for double lung transplant. I’ve since called my gp and they can’t tell me anything either. They will try to have a response for me tomorrow. Can anyone give me any heads up if you’ve managed to get some or not if you tested positive for corona virus. Ps perspective from other areas in uk would be good too to make a comparison or to strengthen my case. Much appreciated.

[Patk1]

Did u have the PCR test sent out to u that most of us cev have,to do if have + lft?My sister and family recently had covid.they ea started 5 to 6 days apart.her hubby and young grandchildren didnt get it though

[BreatheasyBe in reply to Patk1]

No didn’t even know it was a thing here in Scotland

[Patk1 in reply to BreatheasyBe]

Im in england.x

[Hidden]

If you google phctrials.ox.ac.uk it should take you to the site where you can join the trial yourself. They should give you all of the information as to what to do if you test positive. My GP practice are taking part in the trial and telling all patients to ring if they have a positive lf test. I hope that helps

[BreatheasyBe in reply to Hidden]

Thank you I’ve had a wee look. Not a guarantee you’ll get the antivirals but at least some of us will.

[Bevvy]

Really shocked by your consultant. I would have thought if anyone should have access to medications it would be you!In England they identified people who are at particular risk if contracting Covid. I was identified but not sure how or why? I do have a dreadful history with my COPD and a “simple” cold can leave me extremely unwell for months. So maybe due to that 🤷‍♀️

Whatever reason I am grateful to being identified. As such I was sent a priority PCR test. If I believe I have Covid - maybe due to positive LFT or showing Covid symptoms. Then I do the PCR test and send it off. Either through special priority post boxes or courier. If it is confirmed I have Covid they will send me medications straight away. They need to be started within 5 days.

I just can’t understand how someone waiting for a transplant would not meet the criteria. Personally if you get nowhere with gp I would be re contacting consultant and challenging them. Hopefully you won’t contract Covid from your dad but you need to be part of system now so IF you contract Covid you can straight away access medications.

Am sure you must be worried but just because your dad has Covid does not mean you will do so. Keep washing your hands and keep away from dad. If you only have one bathroom keep it especially clean. Don’t know how old your parents are but maybe mum can help?

[BreatheasyBe in reply to Bevvy]

Thanks Bevvy. Yeah I’m shocked too I just don’t think the information is getting passed on. I’ve had a look and feel I fall into the last bullet point (uk) so will take this when discussing any outcome when gp calls back. Scotlands list of eligibility falls short of this additional eligibility criteria.

Scotland nhsinform.scot/illnesses-an...

Down's syndrome

Sickle cell disease

Patients with a solid cancer

Patients with a haematologic malignancy (cancer of the blood)

Patients with a renal (kidney) disease

Patients with liver disease

Patients with immune-mediated inflammatory disorders (IMID)

Primary immune deficiencies

HIV/AIDS

Solid organ transplant recipients

Rare neurological conditions

Uk nhs.uk/conditions/coronavir...

Down's syndrome

sickle cell disease

HIV or AIDS

chronic kidney disease (CKD) stage 4 or 5

certain types of cancer

had certain types of chemotherapy in the last 12 months

had radiotherapy in the last 6 months

had an organ transplant

a severe liver condition (such as cirrhosis)

a rare condition affecting the brain or nerves (multiple sclerosis, motor neurone disease, Huntington’s disease or myasthenia gravis)

certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)

*a condition or treatment that makes you more likely to get infections

[Bevvy in reply to BreatheasyBe]

Yes I see that final condition about being more likely to get infections is not on Scotland eligibility. It is possibly that point that makes me eligible.However surely there needs to be SOME leeway to allow for people who don’t meet such a strict eligibility? My understanding is that the medications may benefit people who are likely to become severely unwell. I understand that not all people who are CEV would meet eligibility but there needs to be some common sense applied in my opinion.

[BreatheasyBe in reply to Bevvy]

Email has been sent marked Urgent to my MSP

[Jandm]

You should surely be at the top of the priority list. I had an email from Health Unlocked yesterday about a trial if you test positive. I think i’d be on to my consultant again and trying every avenue possible. Good luck, I hope they quickly see sense

[BreatheasyBe in reply to Jandm]

I believe my consultants opinion is correct reading from Scotland’s guidelines. I’ve passed my query onto my MSP and he’s passed it onto the Scottish Parliament's Information Centre to ask if they can provide clarity.

[Jandm]

That’s a ridiculous amount of hoop jumping to have to go through when your well never mind when you are waiting for a lung transplant. I understand that each nation chooses the best path for society but your health is a different matter. Best practice should be more than just government legislation

[Patk1]

Hi BreatheasyBe.hows dad with covid? Hope uv avoided it so far xx

[BreatheasyBe in reply to Patk1]

Thanks for asking. He is doing well despite his many health problems. If that’s how I am if I get it I’ll be grand. So update today gp asked me to call nhs health records department- they say I don’t qualify. They can’t advise me on who or what organisation makes the decisions. It’s alarming really! I’ve contacted Gp to inform them of this and asked for a gp to call me back to find out who has authority. How can people like me go back out there take the risk when the antivirals aren’t available. I’m the lucky one not having to work many others my age would have families to support, mortgages to pay and put them self at that increased risk and currently don’t know they aren’t eligible for antivirals. England opening up yeah they’ve more people eligible for the antivirals but Scotland not on your nelly!

[Patk1]

I'm so pleased dads doing so well.hopefully u will not get it.ridiculous criteria! Severe lung disease should certainly be criteria!maybe worth boosting yr own immunity with supplements? E.g. vit c+zinc,vit d.Personally ill b wearing a mask forevermore in shops,venues etc as colds,flu,rev all go to my lungs

I leave antibac handgel in car+ house so grandchildren+ any visitors use it.x

[BreatheasyBe]

Yeah same here take all precautions necessary never went back out shopping etc felt risk to high for me personally.

[Alberta56]

I am shocked. Why are people in Scotland discriminated against?

[BreatheasyBe in reply to Alberta56]

Hi Alberta I’ve received a very detailed response from my MSP according to SPICe I will make a new post about it shortly.

[Alberta56]

Good that your MSP is on the ball. I hope your letter get the rules changed for all vulnerable people in Scotland.