NHS sending out a PCR test to all CLL patients

[flyhigher]

I've just read Leukaemia Care's latest email newsletter. In their advice about these new Covid treatments for the likes of us, they say:

"If you have symptoms of COVID-19, you should take a PCR test. If you are eligible for the COVID-19 treatments, you will soon be sent a PCR test in the post to keep at home just in case you develop COVID-19 symptoms. This is so that in the first instance you develop symptoms, you can take a PCR test as quickly as possible. If you use your test, the NHS will send you a replacement so that you always have one to hand.

"Test kits should be sent out to eligible patients by 10th January 2022. If you develop COVID-19 symptoms before receiving your home PCR kit, you can book a PCR as normal..."

Anyone with CLL is eligible. Haven't seen this mentioned before. I suppose it will happen. Even if it does, I have no intention of going out on the tiles to see if the process works!

Here's the link:

leukaemiacare.org.uk/suppor...

[mrsjsmith]

Yes I heard it last night because a fellow patient has an amazing CNS who gave her the same information and a list of London hospitals participating in the CMDU. She said she was also told access would also be available via 111. Here’s to a more positive 2022 🤞

Colette

[Shooey in reply to mrsjsmith]

Weird, I messaged my CNS at Addenbrookes yesterday asking how I could get hold of the treatment, if required. The response was that they hadn’t received any information and first port of call would be my GP.So, I guess it’s batten down the hatches AGAIN

Hope you can enjoy a Christmas of sorts Colette

Shooey

[RosettaClapp in reply to Shooey]

Musgrove Park Taunton said the same and I doubt if my gp has put my name forward to be included anyway ..he doesnt consider cll to be a proper cancer sadly

[Shooey in reply to RosettaClapp]

Really?? Cancer is cancer doesn’t matter which one you’ve got!!

[RosettaClapp in reply to Shooey]

He actually said its not a proper cancer like breast cancer so Ive not got a lot of faith in him now

[lotn9 in reply to RosettaClapp]

Hello Rosetta, I would change your doctor immediately, it may be difficult, but if he said that CLL is not a real cancer, he has no right in calling himself a doctor at all. Hope you find someone you can form a rapport with and may all of us get well soon, keep well, keep safe and keep smiling. Happy Christmas and a better new year.

[RosettaClapp in reply to lotn9]

I have been with him for at least 30 years and it would be a wrench but I am seriously looking into changing surgeries..this isnt the only brush I have had with him recently sadly Its been since I hit 65 really

[Newdawn Administrator in reply to RosettaClapp]

I wonder if your GP even understands CLL to any significant degree Rosetta. My now early retired GP was the doctor in the surgery said to have the greatest knowledge and he was frankly clueless. I’ve sat explaining things to him for quite extended sessions! He admitted GP’s are primed to acute and immediate rather than chronic so a fast acting cancer will always take hierarchical priority for them. However, it shouldn’t devalue our worth or need for care and protection.

Soon after I was diagnosed with CLL, my GP tried to minimise things a bit and said he’d prefer to call it ‘lymphocytosis’. I replied that he could call it athlete’s foot if it made him feel better but it still had the potential to kill me!

We reached an understanding after that and the surgery have always taken my health situation very seriously. When my lymph nodes massively enlarged around my neck and jaw, my GP was horrified and asked me what they’d do for me! 😧🙄 I explained all the treatments to him and how they worked!

Hope you get sorted soon.

Response edited to remove personal info as the original post isn’t locked to this community.

Newdawn

[Annie1920 in reply to Newdawn]

It's a sad state of affairs isn't it? I'm sure mine wouldn't t be open to my explanations... I'm not expecting him to be a top expert but not to block access to a 4th jab or antibody treatment.. Its not that much surely?

[sun_flower in reply to Newdawn]

My gp told me he had never heard of CLL

[Peggy4 in reply to sun_flower]

Oh my!😱

[Susanbarratt in reply to RosettaClapp]

My husband has a GP with the same attitude. The hospital write asking him to order Shingrix for my husband. Never heard anything since.

[RosettaClapp in reply to Susanbarratt]

it really is a lottery ...and sadly we are having to really fight for ourselves inspite of gp ignorance

[mrsjsmith in reply to Shooey]

It’s a game trying to find out information and I have failed with your hospital.As I understand it ‘ each integrated care system (ICS) has been established to roll out nMABs usually in a hospital setting

There are 5 in London and Barts and St George’s have online information.

Infusions will be usually administered in a hospital setting.

The PANORAMIC study, the pill is down to the GP to recruit.

My friends CNS found all the information for her but the head cancer nurse at my hospital also palmed me off with the GP nonsense, but my hospital is interestingly not on the list.

Somewhere here is the Leukaemia Care link and it is very useful, and perhaps they could direct you to your nearest hospital.

Good luck

Colette

[Shooey in reply to mrsjsmith]

Thanks Colette, will make some further enquires! Will also look into the Panoramic study.Shooey

[mrsjsmith in reply to Shooey]

I also online found a link to the PANORAMIC study that is worth bookmarking.

Colette

[Shooey in reply to mrsjsmith]

Just tried to register only to be told not eligible!

[RosettaClapp in reply to Shooey]

you can only register if you have a positive PCR test

[mrsjsmith in reply to Shooey]

Ah Thank you Rosetta useful to know.

Colette

[Shooey in reply to mrsjsmith]

Thanks Colette and Rosetta, let’s hope that none of us have the need to register!!

[mrsjsmith in reply to Shooey]

Agreed 🤞🤞🤞 but better to have the information to hand. I always panic in a drama and forget what to doColette x

[RosettaClapp in reply to mrsjsmith]

Here is the most recent link

phc.ox.ac.uk/news/oxford-be...

this isnt specifically for us but it does explain clearly the system in principle crohnsandcolitis.org.uk/new...

[mrsjsmith in reply to RosettaClapp]

Thank you and I have forwarded to someone with crohns.

Colette

[RosettaClapp in reply to mrsjsmith]

good idea but the content is relevant to us too

[mrsjsmith in reply to RosettaClapp]

Thank you,

Indeed but Crohns hadn’t crossed my mind until I saw your link.

Colette

[RosettaClapp in reply to mrsjsmith]

nor mine in fact there are a lot of us who are immuno-supressed which make it even more unfair that we seem to have been put on the back burner by a lot of frontline non-specialist medics

[wroxham-gb in reply to Shooey]

Me too, you need to have a positive pcr test. Also applies I think to anti viral pills Paxlovid.We need to find out where our local( to us) cmdu units are.

I spoke to my GP Friday pm and he said there was a case to prescribe for me if they are allowed to in the future

He was very very interested in what I had to say (thanks to this forum on knowledge).

Sue

[Shooey in reply to wroxham-gb]

Morning Auntie SueAll googled out trying to find a hospital with a CMDU unit within 50 miles of my backwater and really surprised that Addenbrookes don’t appear to have one at the moment. As Colette has suggested I will try Leukaemia Care, certainly don’t fancy having to make a trip to London at the moment!

Feels like deja vu at the moment after the hassle some of us had getting the third vaccine, would just be good to get all our ducks in a row in advance in case the worst happens.

Shooey x

[mrsjsmith in reply to Shooey]

Shooey,

I hope they are able to help. A huge ask, but it would be amazing if they could find that list and publish it. It would relieve general anxiety.

I have noticed I am clenching my teeth which is difficult to stop now ! Anyone got any hints ? Luckily my dentist is also a friend but I don’t like to ask.

Colette

[Shooey in reply to mrsjsmith]

If we don't ask we don't get! As for the teeth clenching, happens to me every time I happen to catch you know who on the TV, usually ends up with lots of expletives and the dog's soft toys being thrown at it. Not really much help am I!!!Shooey

[mrsjsmith in reply to Shooey]

Thank you, agreed no help, especially as I don’t have a dog and throwing the cats scratching post would probably break the tv 🙄

Colette

[Shooey in reply to mrsjsmith]

Hi, Leukemia Care called back this morning, yes there is a list but they are not planning to publish on their website.Donna kindly checked for me and I have two within 20 miles, she even gave me the ward number!

So, some comfort and good to know that things seem to be falling into place, not planning on having to use it though!

Shooey

[mrsjsmith in reply to Shooey]

That’s such a comfort ! Yes I also have two local ones. And useful to know for anyone else who is concerned. I wait that’s most of us 🤔

[wroxham-gb in reply to Shooey]

Just asked my friend who works at track & trace (very busy) and she hadn't heard of it. Might it be that it is still in the process of being set up across the country with some further ahead.Love aunty Sue.xx

[RosettaClapp in reply to wroxham-gb]

I have tried several times to find the nearest CMDU to me with no joy whatsoever ..not even a definition as to what it is !!grrr

[wroxham-gb in reply to RosettaClapp]

My GP hasent been informed yet so I think it's all in the process of being set up for most. Good thing is these treatments are available if any of us are unlucky enough to catch Covid.All we need is a positive pcr test.

Which I'd sooner not have. I'm sure we'll all keep digging for information.

My friend is going to ask and see what she can find out.

Stay safe.

Sue

[RosettaClapp in reply to wroxham-gb]

they have all had an edict sent out 6th December from JVC and gov.com ...so he just hasnt read it yet !

[mrsjsmith in reply to RosettaClapp]

Ladies I asked my GP about CHDU and she also hadn’t heard of it and her advice was call the surgery and they would do an ERS ( electronic referral system ) search or out of hours call 119 ! Let’s just pray we never need this.

Colette

[wroxham-gb in reply to RosettaClapp]

Sorry I cannot answer for someone else.Best wishes.

Sue

[mrsjsmith in reply to RosettaClapp]

Covid medicine delivery unit. You might have more luck with that.

[Annie1920 in reply to mrsjsmith]

I did! And I've just come off the phone to blood cancer UK and they don't have a list either of where to find them

[mrsjsmith in reply to Annie1920]

Sorry about that. Without overwhelming them some members found Leukaemia Care helpful.Colette

[Psmithuk]

I hear/see these things and then have to check whether the NHS means 'National' or just 'England’. Anyone know if this applies to Wales/Scotland/N Ireland as well?Cx

[Belfastbees in reply to Psmithuk]

A good question, always comes to my mind as well as an NI resident. I do feel NHS ni is slow to catch up. I must say though I have been able to book a pcr test and get it locally within hours every time I have required one. That might change as the numbers ramp up of course.

[RosettaClapp in reply to Belfastbees]

we are supposedly getting a PCR kit to have 'by us' to then be able to post it off asap ..I have jumped the gun and ordered one from 119 I did explain why I wanted one when I'm not yet infected and they were fine with that

[Belfastbees in reply to RosettaClapp]

119 is specifically for NHS England I think, outside my jurasdiction. I've had no problems getting a test if needed but I expect as the numbers rise it will become harder. I will look into it.

[RosettaClapp in reply to Belfastbees]

I hadnt realised 119 was only for England ..sorry

[Belfastbees in reply to RosettaClapp]

No, it's OK, no need to apologise! That's just a Google search told me that. I might ring it tomorrow.

[flyhigher in reply to Psmithuk]

Being a Scot in England, I know how you feel. I also have a good Scottish surname that nearly everyone in England is incapable of spelling or pronouncing. Scunnering!

[Psmithuk in reply to flyhigher]

I’m dying to know what it is, with pronunciation tips, but know I mustn’t ask!

[RosettaClapp in reply to Psmithuk]

as I read the nhs instructions to medics its everyone not just England ref C1468 sent out 3rd Dec 21 this gives links to all the relevant documents From

Covid-19 Update

An important clarification

Monoclonal antibody treatment for Covid-19

In the last newsletter we stated that NHS England had authorised monoclonal antibody treatment at home for certain patients, including those with CLL. Previously this was only available after hospital admission.

We have learnt from members that not all health providers are aware of this important development, and we are giving links below to the relevant announcements for England and Scotland. You may wish to use these documents to clarify the position if you need to contact your health provider should you become infected by Covid.

Please note that Wales and Northern Ireland may follow different guidance.

Key points:

Directive issued on 6 December and is effective from 18 December

Patient must have a positive PCR test for Covid

Patient must be in one of the specified high-risk categories, which includes CLL, whether you have received treatment or not.

You can find the NHS announcements here:

CEM_CMO_2021_020.pdf

nMABs_AV Community RPS.pdf

cas.mhra.gov.uk/ViewandAckn...

from CLLSupport letter just now

[Psmithuk in reply to RosettaClapp]

Thanks, I’ll keep my fingers crossed!Cx

[RosettaClapp in reply to Psmithuk]

think we are crossing every thing ..it is just such a pity we have to fight for everything we are entitled to

[Psmithuk in reply to RosettaClapp]

I was going to write a comment about 'self-advocacy' when I replied!

[RosettaClapp in reply to Psmithuk]

Its all very well if we are feeling ok but if not ..then what??

[Inklinggirl in reply to RosettaClapp]

Hi Rosetta. I was just reading what you'd written and I feel exactly the same. My GP practice is terrible and constantly ignore anything I write or that my (slightly confused about the jabs) consultant writes. I only got a third jab because I went with a consultant letter to the vaccine hub, despite the fact that I'd enquired and sent the letter to my GP. I never received any NHS letter about the third jab, just about a booster, so I don't think I'm coded appropriately and people keep posting that they are now receiving something about the antivirals. I am going to have to go again, cap in hand, to the vaccine hub for the booster and see if they give it to me! I feel like I have to research everything to get what I'm entitled to and will have to deliver yet another letter to my GP surgery, which will probably be ignored! I also have had the attitude of 'it's not a bad cancer' so it's not really a problem. I don't believe they are taking things seriously! Sorry for the rant, but I related to what you said! Take care

[mrsjsmith in reply to Inklinggirl]

Please check the CLL support letter issue 14 and a link to a letter called Official Publication approval reference:C1468 which gives clear guidance. Ask to speak to the practice manager and quote that letter.

[Inklinggirl in reply to mrsjsmith]

Thank you 🙂

[Annie1920 in reply to Inklinggirl]

I do so sympathise.. It seems we are not alone but I'm not too sure that gets us any further.. I do resent being treated as unimportant and not worth bothering with!

[Inklinggirl in reply to Annie1920]

I hope you can get sorted Annie. My partner is going to try and speak to my GP practice as I’ve given up and he’s so much better at all that!! Take care and I hope you can enjoy Christmas

[Annie1920 in reply to Inklinggirl]

It is just such a pain we have to fight EVERY time isn't it... I did get my 4th jab yesterday at a walk in vaccination centre.. They were very considerate.. Took me to the head of the queue and fast tracked me though and out to do my waiting in the car.. It still couldn't be registered as anything but a booster though.. So now I've got 2x boosters on my entry in the NHS data base!!

[Hidden]

Read somewhere that the new COVID19 pills will be trialled with 10,000 people. Not many of us then!I won’t hold my breath waiting and expecting a PCR test as nothing suggested by the government for someone with CLL but in remission as I am has actually happened without a struggle by me.

Something else for the NHS to get wrong and cause anxiety. Too many bright ideas by the chiefs but no one to carry them out.

[Belfastbees in reply to Hidden]

The guidance quotes anyone with CLL at any stage of treatment, I'd expect that would include you, indeed us all. Diagnosis should be enough.

[Hidden in reply to Belfastbees]

That’s the problem phrase ” any stage of treatment “. In remission GPs read as not having treatment. Would be better if it stated “anyone diagnosed with CLL” to include those on watch and wait. I’ve struggled to get my vaccinations even though recognised by the government as CEV.

[Belfastbees in reply to Hidden]

Well, I actually took another look and include this screenshot. No mention of treatment, before or after. My misquote in my original comment. Definitely reads pretty much all inclusive to me, unless your doc says you're cured/ no longer have CLL!

Quote

[RosettaClapp in reply to Hidden]

gps have had very specific instructions ...BUT..its whether they have read them I doubt mine has too

[Annie1920 in reply to Hidden]

The JCVI list says nothing about any stage of treatment.. Diagnosis with CLL and a positive PCR test in first 5 days of symptoms is enough and it's the NHS panel that decides what treatment is offered and where it will be given..

[RosettaClapp in reply to Hidden]

that was in the first edict but its been widened now ...but I couldn't find any indication of where in Somerset there is a CMDU

[Annie1920 in reply to Hidden]

From the JVCI instruction ALL CLL patients with positive PCR in the first 5 days of symptoms will be eligible to be referred to the NHS panel that decides what we might be offered and where

[sparkler]

Yes, all of us with CLL are eligible to be referred to a CMDU if we test positive with a PCR. It may be our GP who refers us, or via a call to 111. Then it’s the CMDU that decides which of the two treatments would be better for us. I suppose they may decide we don’t need either.

I’m not holding my breath for the arrival of a letter and PCR test dropping through my letterbox; so far, nothing has happened as it should for me. From the beginning of this pandemic nightmare, with the need to be included on the CEV list for supermarkets’ home deliveries, to every f%#%¥ vaccination, it’s been a constant battle.

Like all other Govt schemes to help the vulnerable immunosuppressed, I’m afraid it won’t run smoothly, though I’m always hopeful.

The system seems to work for some but not for others. It’s a lottery

Good luck flyhigher and all

sparkler x

[CguLLer in reply to sparkler]

Totally agree with you. Likewise I was not on CEV list, didn’t get called as priority for first or second vaccines and didn’t get called for third (I took the booster as advised and am gearing up for a fight over getting fourth). Every time I questioned any of this I was met with silence or they didn’t understand what I was talking about. So no I am holding my breath on this one either.

[RosettaClapp in reply to CguLLer]

sounds like my practice sadly too..I rang 119 and got through to dept dealing with records of vaccines ..to be told I will need a letter from either gp or consultant to get the 'booster' label changed to 3rd dose to be eligible to book a 4th dose

[CguLLer in reply to RosettaClapp]

My GP practice has “outsourced” vaccine delivery to a local federation. When I contact the federation they say they are only administering the vaccine and any decisions about eligibility is made by the GPs. If I phone the GP practice they say they cannot answer questions on vaccines and do I go round in circles. My next step is to write directly to my GP about my vaccine and to make sure I am on the list for the PCR and covid treatment (which I hope we never need).

[Annie1920 in reply to CguLLer]

That's what I have done.. But I did it via the admin system so that the gp realises the rest of the practice is aware 😂😂

[Harvist in reply to sparkler]

"Like all other Govt schemes to help the vulnerable immunosuppressed, I’m afraid it won’t run smoothly, though I’m always hopeful."

That sentence sums up the situation nicely. I am a gentle touch carer for my older sister. She is a very intelligent retired professional who lives on her own. She has immense problems with any IT issues even though she uses the internet for grocery ordersm YouTube etc every day. The e-consult forms for GPs confuse her very time and I end up doing it for her.

There are so many people in the country who need clear, concise and consistent messages from our "leaders" and who are failed at every turns. I include us!

It is almost as if we are an afterthought that needs to be dragged into government actions by charities like BloodCancerUK every single time.

The only thing they can offer as proof of action is the vaccination programme to which all thanks to our NHS who provide the best for us despite the government and not because of it.

[Harvist in reply to Harvist]

I forgot to make my point! The confusion of messaging and getting information from the media rather than the government means many of us will be too late to get the therapies and treatments that are newly available because we don't know the correct procedures.

Confusion over the 3rd dose and the booster for us will be replicated if we actually get the virus.

Who do we contact first,

how do we get a PCR test immediately,

do GPs and hospitals know we are entitled to special therapies,

will a test site be open anywhere near us,

will 119 or GP answer the phone,

can we just rock up at A&E and ask for the treatment,

does anyone in Government actually care???

[RosettaClapp in reply to Harvist]

there are several nhs/ukgovernment edicts that do explain that we should keep a PCR test to hand and do it directly we think we have symptoms..there is a link to join a study (PANORAMIC is the name and Blood Cancer Uk has an article too )which is how I intend to do it

[RosettaClapp in reply to sparkler]

I have rung 119 and explained why I needed a PCR test on standby and it came in 24 hours in the post which I will use should Ineed to and then register with Panoramic study

[mrsjsmith in reply to RosettaClapp]

More useful information.

Thank you

[blowinginthewind]

Thank you so much for this information; I realise I probably won't have it by Christmas, but I can at least feel less scared of getting covid knowing I will get treatment.

Liz

[Psmithuk]

Exactly!Cx

[kensim9]

I'm in Scotland, I have been proactive in getting 3rd Primary & Booster appointment in January 2022. Just received Home ordered PCR kit, I'm not waiting till get letter, as never had one yet.Can worry what to do once catch Covid-19 (as seems inevitable)

[Roxy101]

Early treatment is a must and I can't find any protocols which have been put in place. They don't want to have hospitalisations yet they appear to be purposely suppressing any early treatment.

[netspert]

If you test positive, are there any approved treatments available, other than a Respirator? In the USA, there is only Monoclonal Antibodies, which are expensive and being politicized by Biden - and some places won't give them to non-vaxxed patients.

[Calopteryx]

Just been for my regular 3 monthly consultation and was talking to the consultant about the new Covid treatments for those with blood cancers and other conditions. She was surprised I knew about it and said "You CLL patients, are very well informed!". So hats off to this network of gurus, and the blood cancer charities who disseminate the information. I wouldn't have known otherwise.Incidentally she looked at my bloods and said my immunoglobulin levels remain low,at about a third of normal levels just highlighting how poor my immune system is.

Merry Christmas everyone! 😊

[Newdawn Administrator]

I’ve just received my letter telling me a PCR is being sent to me and what to do in the event of infection which is reassuring. Hope not to use it however!

Newdawn

[Annie1920]

I've just re read your post and noticed it was sent out 29 days ago.. And still a great many of us are in limbo.. Grrrr