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NHS email about Immunosuppressed and new drug

112 replies

CatAlice · 20/12/2021 18:09

Sotrovimab, a monoclonal antibody.
I've just had an email from the NHS telling me I would be eligable for one of the new drugs. I believ it has to be taken within 5 days of infection.
Apparently they are sending me a PCR test to have at home ready.

www.bbc.co.uk/news/health-59721240

OP posts:
PheasantsNest · 22/12/2021 15:54

My PCR arrived today that was mentioned in the email.

givememarmite · 22/12/2021 16:06

Can I ask if any of you who have received the email are in Wales? My mum (lives in Wales) should be eligible but has not heard anything yet, although things are not always rolled out at the same time in Wales as England.

herecomesthsun · 22/12/2021 16:12

I was in Group 4 as CEV and my son takes Methotrexate. We haven't heard anything, but then again, I didn't hear about shielding until June 2020 (I was already shielding on the advice of our Occupational Health department at work).

It sounds as though immunosuppressed people and people with blood cancer are more vulnerable so it's right that they are hearing first about this.

I would certainly check eligibility for treatment and offer to take part in a treatment trial if not eligible, were I to get covid.

TheMooch · 22/12/2021 16:15

Do check your junk mail. Mine was from Covid - nearly missed it.

BeyondShrinks · 22/12/2021 16:49

@givememarmite

Can I ask if any of you who have received the email are in Wales? My mum (lives in Wales) should be eligible but has not heard anything yet, although things are not always rolled out at the same time in Wales as England.
I'm in wales and should be eligible from what I can see here - no email yet
PastMyBestBeforeDate · 22/12/2021 16:52

marmite I have copied the end of the email below and it does make specific reference to England

"Yours sincerely

Professor Stephen Powis
National Medical Director
NHS England and NHS Improvement

If you need this letter in easy read or other languages, a copy of the letter can be viewed via www.england.nhs.uk/coronavirus/treatments

If you require this letter in braille or other languages, please contact [email protected]"

BeyondShrinks · 22/12/2021 16:54

Ah bugger.

Anyone got Frank Atherton's email address? Grin

FizzyOrange · 22/12/2021 17:02

I had a letter about it today and still no e-mail so maybe some people will just get letters?

Hmmph · 22/12/2021 17:23

List of those eligible from here:www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAttachment.aspx?Attachment_id=103862
I recommend going to the document and reading Appendix 1 as the list is clearly set out there!

Down’s syndrome
All patients with Down’s syndrome
Sickle cell disease
All patients with a diagnosis of sickle cell disease
Patients with a solid cancer
• Active metastatic cancer and active solid cancers (at any stage)
• All patients receiving chemotherapy within the last 3 months
• Patients receiving group B or C chemotherapy 3-12 months prior
• Patients receiving radiotherapy within the last 6 months
Patients with a haematologic malignancy
• Allogeneic haematopoietic stem cell transplant (HSCT) recipients in the last 12 months or active graft vs host disease (GVHD) regardless of time from transplant
• Autologous HSCT recipients in the last 12 months
• Individuals with haematological malignancies who
have
o received chimaeric antigen receptor (CAR)-T
cell therapy in the last 24 months, or
o anti-CD20 monoclonal antibody therapy in
the last 12 months
• Individuals with chronic B-cell lymphoproliferative
disorders receiving systemic treatment or
radiotherapy within the last 3 months
• Individuals with chronic B-cell lymphoproliferative
disorders with hypogammaglobulinaemia or
reduced peripheral B cell counts
• Individuals with acute leukaemias and clinically
aggressive lymphomas who are receiving chemotherapy or within 3 months of completion at the time of vaccination
7 For paediatric/adolescent patients (aged 12-17 years inclusive), paediatric multi-disciplinary team (MDT) assessment should be used to determine clinical capacity to benefit from the treatment
7
• Individuals with haematological malignancies who have received anti-CD38 monoclonal antibody or B- cell maturation agent (BCMA) targeted therapy in the last 6 months
• Individuals with chronic B-cell lymphoproliferative disorders not otherwise described above
Patients with renal disease
• Renal transplant recipients (including those with failed transplants within the past 12 months), particularly those who:
o Received B cell depleting therapy within the past 12 months (including alemtuzumab, rituximab [anti-CD20], anti-thymocyte globulin)
o Have an additional substantial risk factor which would in isolation make them eligible for nMABs or oral antivirals
o Not been vaccinated prior to transplantation
• Non-transplant patients who have received a
comparable level of immunosuppression
• Patients with chronic kidney stage (CKD) 4 or 5 (an
eGFR less than 30 ml/min/1.73m2) without immunosuppression
Patients with liver disease
• Patients with cirrhosis Child’s-Pugh class B and C (decompensated liver disease).
• Patients with a liver transplant
• Liver patients on immune suppressive therapy
(including patients with and without liver cirrhosis)
• Patients with cirrhosis Child’s-Pugh class A who are
not on immune suppressive therapy (compensated liver disease)
Patients with immune-mediated inflammatory disorders (IMID)
• IMID treated with rituximab or other B cell depleting therapy in the last 12 months
• IMID with active/unstable disease on corticosteroids, cyclophosphamide, tacrolimus, cyclosporin or mycophenolate.
• IMID with stable disease on either corticosteroids, cyclophosphamide, tacrolimus, cyclosporin or mycophenolate.
• IMID patients with active/unstable disease including those on biological monotherapy and on combination biologicals with thiopurine or methotrexate
Primary immune deficiencies
• Common variable immunodeficiency (CVID)
• Undefined primary antibody deficiency on
immunoglobulin (or eligible for Ig)
• Hyper-IgM syndromes
• Good’s syndrome (thymoma plus B-cell deficiency)
• Severe Combined Immunodeficiency (SCID)
8

• Autoimmune polyglandular syndromes/autoimmune polyendocrinopathy, candidiasis, ectodermal dystrophy (APECED syndrome)
• Primary immunodeficiency associated with impaired type I interferon signalling
• X-linked agammaglobulinaemia (and other primary agammaglobulinaemias)
HIV/AIDS
• Patients with high levels of immune suppression, have uncontrolled/untreated HIV (high viral load) or present acutely with an AIDS defining diagnosis
• On treatment for HIV with CD4 350 cells/mm3 and additional risk factors (e.g. age, diabetes, obesity, cardiovascular, liver or renal disease, homeless, those with alcohol-dependence)
Solid organ transplant recipients
All recipients of solid organ transplants not otherwise specified above
Rare neurological conditions
• Multiple sclerosis
• Motor neurone disease
• Myasthenia gravis
• Huntington’s disease

Teenylittlefella · 22/12/2021 17:30

Hmm. So dd may not be eligible as she isn't 12 yet, and isn't on biologics. She has IMID and is on thiopurine.

Teenylittlefella · 22/12/2021 17:31

Just checked. She is also under 40kg, another exclusion.

Ok will wait til she turns 12. She has had covid anyway!

kimlo · 22/12/2021 19:22

I can't work out which of those I come under.

I know what it is, it's the amount of steroids I take. I'm assuming the courses of pred, but I also take inhaled steroid as MART and steroid nasal spray. I'm on montelukast and spivira respimart too but they aren't steroid based.

givememarmite · 22/12/2021 19:38

Thank you @PastMyBestBeforeDate that's helpful. Guess we'll have to wait a bit and maybe contact her consultant after Christmas.

BeLessMe · 23/12/2021 18:04

@givememarmite

Can I ask if any of you who have received the email are in Wales? My mum (lives in Wales) should be eligible but has not heard anything yet, although things are not always rolled out at the same time in Wales as England.
Waiting here too. Wales are always so behind. it’s like a second class NHS sometimes. Sad
Smashedavacado · 23/12/2021 21:32

copasetic my DM is on exactly the same dosage. When she originally received a shielding letter she rang her GP surgery to ask why & they said it was probably a computer error. It was only my googling some time later which explained why.
Since then she has come off the steroids completely but received the PCR test today. No email - there was a letter inside explaining though.

TheVampiresWife · 24/12/2021 06:21

My GP receptionist didn't know anything about this and said it had nothing to do with GPs.

Looks like it's going to be the same balls up as with my third primary dose!

Sparklingbrook · 24/12/2021 07:05

My relative received their PCR test in the mail yesterday too.

HelloDulling · 24/12/2021 07:10

@givememarmite

Can I ask if any of you who have received the email are in Wales? My mum (lives in Wales) should be eligible but has not heard anything yet, although things are not always rolled out at the same time in Wales as England.
Nothing here, DH should be eligible.
nether · 24/12/2021 07:40

This info page from Blood Cancer UK has info for each home nation, including who to contact

bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/covid-antibody-treatment/

They say that they didnt know if the letter had yet been sent out in Wales, Scotland and NI

BeLessMe · 24/12/2021 17:53

Thank you @nether

BeyondShrinks · 31/12/2021 16:17

Fao the welsh immunosuppressed...

Waiting for a PCR result and doing some googling, I have found this - gov.wales/covid-19-treatments - which talks about antivirals for us lot (only within the first five days though, and given the faff with tests atm I'm not holding my breath...) and this - gov.wales/written-statement-statement-deployment-covid-therapies-wales - which says a letter is on its way. At Christmas. Hmm 🙄

givememarmite · 31/12/2021 21:12

I was just looking for this thread to reply that my mum got her letter yesterday @BeyondShrinks
It's going to be a bit difficult to administer in the first 5 days though isn't it with the time for PCR test results...hope you are ok and don't have to wait too long for your result

msbevvy · 31/12/2021 23:04

@givememarmite

I was just looking for this thread to reply that my mum got her letter yesterday *@BeyondShrinks* It's going to be a bit difficult to administer in the first 5 days though isn't it with the time for PCR test results...hope you are ok and don't have to wait too long for your result
The test that I received in the post is labelled for priority processing so hopefully it will be possible to get a result within the necessary timeframe.
Thatsveryniceofyou · 01/01/2022 10:28

I received the letter, but still no PCR through the post. Fingers crossed it comes soon. I hate how much chasing is put on the individual to sort (including the farce of 3rd primary dose, needing a booster etc)