Covid lateral flow tests before chemo

Hi all.
I had my first instructions for chemo from bcn and oncology last Friday. One of the things I need to do is to obtain covid lateral flow tests as I will need to do 2 before each of my sessions. The instructions say that I can obtain the test free as a vulnerable patient from the Gov website. I did this many times when we were in the throes of covid, but the site has changed now and it says to obtain them from local pharmacy with proof of treatment.
I went to my local pharmacy with my expanding pack of hospital letters, and they were only prepared to sell the tests, but I could order them online. I explained that it is no longer possible and the website says I can get them free at pharmacy. When I asked her when she last ordered online herself she admitted it was ‘a while ago’.
Does anyone else feel like they’re going round in circles and going nowhere?
Tomorrow I’ll try another pharmacy and phone bcn at hospital to see if they can help.
Thanks for listening.
Frustrated x

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I think maybe your GP needs to tick a box and then you get sent them automatically so try GP ?

Thank you Jill. I’ll try that if I don’t get any joy with the others. It’s so frustrating trying to do as I’ve been asked and everywhere I turn there seem to be obstacles x

Yes I can totally understand ! The NHS is a maze of frustration at the moment !!!Many of us got sent some lateral flow tests earlier in the year simply because we’d had cancer in the past (even many years ago ) which is why I think maybe the GP needs to tick something to say you’ve had / are having cancer treatment to trigger them
being sent .Do you have a BC nurse maybe they will know ?

I have a bcn allocated but I’m reluctant to try her.
The first time I contacted her, voicemail and email she took a week to respond, by which time I had gone asked elsewhere. The 2nd time I emailed her it took 3 weeks exactly to respond. Then she didn’t answer my question anyway. I don’t think I’ll be troubling her again.
I’m sure I’ll find out something tomorrow x

Maybe try the BCN helpline here then see if they know how you get hold of them ?

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0808 800 6000

Thank you x

When you go online tick the box that qualifies for covid treatments tgen you can order them . If you are having chemo it makes you clinically vulnerable. You need to make sure your gp updates your details to show this. Hope this helps xx

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Yes that’s what I thought too GP needs to tick relevant box in your records then you can order .

I wasn’t aware that gp needs to update my records. Strange though, that the website doesn’t even let me get as far as putting in any details. It just says that vulnerable people can get tests from pharmacies.
I’m going round in circles. Aaaargggh!

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I ordered tests online last week but ive just checked and as you say it now says go to a pharmacy. I would take your hospital paperwork as proof and a screenshot of the nhs website that shows you can no longer order them online to the pharmacy. They obviously dont know its been changed as its obviously been in the last few days. A lot of hassle you can do without. Good luck xx

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I had same experience when I tried to get my housebound elderly Dad a home visit for Covid jab - no-one - GP , 111 119 or district nurses had a clue where I should go to to arrange - gave up and took him in a wheelchair .

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Well how bizarre! I asked the nurses in the chemo unit if I needed to have lateral flow tests and they said “No”. So I attended for treatments and didn’t have any lateral flow tests. However one day two packs of lateral flow tests mysteriously arrived in the post without any explanation whatever! So I put them in the cupboard in case I should need them. A little while later I was unwell and felt it was not just an ordinary cold so I use one of these lateral flow tests, and found I had covid. So all that happened was that I had to miss my treatment that week because I wasn’t well enough to go.

Mystery might be solved!
Spoke to bcn this afternoon. She said that the powers that be are looking into whether covid testing is still necessary. They must have pulled the free tests from the websites already. I don’t need to worry about them.
In the meantime, she wanted to book my first pre chemo assessment next week. Unfortunately the allocated time is just when I will be on the p&r bus en route to hospital to see bcn. She will try to get me s slot in person as I will be on site, rather than expect me to discuss on the bus!

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Nope! Bcn says they haven’t stopped the covid test requirement after all. Pharmacies DO have to supply them to for us. I phoned my local pharmacy this morning asking that they check this as I won’t be the only person asking for them.
As if life isn’t stressful enough!

The saga continues.
Phoned same pharmacy this morning to ask if tgey have the up to date information. They seemed to be aware that they are responsible for supplying, but haven’t got any just now.
Tried a larger pharmacy further away. After consulting with the main man the assistant hung up on me, so I phoned straight back. After a long wait to be answered the man answered. My polite ‘I seem to have been cut off’ was answered with they are not on the list to supply.
Going into town tomorrow for haircut. I really hope Boots can help!
I guess there will be many other patients asking the same thing before long.

How about writing to your MP and asking them to write the minister of health on your behalf? If this policy isn’t working then it’s up to the government to sort it out. I think the policy must be different in Wales because, as I said, we are not asked to do covid tests before each treatment, but without me asking for them I was sent two boxes in the post, and actually had to use one when I had covid symptoms, and found out I was positive so how to miss my treatment.

Hooray! In town for my pre chemo pixie haircut. Went to Boots and they knew what I was talking about! It has only just begun and I was the first person requesting. They were able to supply me with a box of 5.
For anyone else, they have to complete a quick form which includes nhs number, and evidence that tests are required. I took my whole folder since my diagnosis to make sure I had no problem.

Hello everyone, I am having the very same problem along with many other people here in North London - no covid test kits at pharmacies but have to test before my next 15 three weekly treatments. It shouldn’t be up to already stressed individual patients to write to their MPs? We need hospitals and big organisations to escalate this and pronto! Tulip x

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