COVID-19 issues in ENGLAND only

Highlight and discuss any ongoing issues regarding COVID-19 topics - vaccines, PCR kits, antib0dy treatments, antibody levels, T-Cell response, SOAP trial, isolation, social distancing, masks, immune-compromised status etc). Don't hesitate to also talk about the emotional, mental, physical or financial impact of COVID-19 for you and your family.

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sophie
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COVID-19 issues in ENGLAND only

Post by sophie » 04 Feb 2022 19:21

We are aware that NHS England is experiencing issues with notifications to patients who are immuno-compromised.
From an internal survey at MDS UK - we identified that approx 50% of our members have not received their 'vulnerable letter', nor invitations to have a 4th vaccine, nor been given access to priority PCR kits.
In another group of blood cancer patients (CLL), a coding error was found.
We are now asking whether something similar may be the cause for some MDS patients not receiving the required letters.
Feel free to share your experiences here.
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
PMTW19
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Re: COVID-19 issues in ENGLAND only

Post by PMTW19 » 11 Mar 2022 18:31

My daughter is a severe asthma and Addisons disease sufferer and is under the care of the Royal Brompton Hospital. She is on Mepozulimab - a vey expensive 'wonder drug'. Today she tested positive for Coronavirus. She was advised by the hospital that she should have had a home PCR kit on the results of which she could be given antivirals within 24 hours. This was the first that she'd heard of this. Apparently there is a 'list' that you have to be on in order to qualify for this service. She/we knew nothing about this nor did the 111 or 119 helplines or my GP surgery
This caused me to enquire on my own behalf. I have had a fourth vaccine but haven't been told anything about this home PCR test kit or the "list'.
I currently have two daughters and one son-in-law who are down with covid. Fortunately they are not living with us but I was in contact before they all tested positive.
Something is clearly wrong with the NHS system. 119 finally agreed to send me the Home Test kit but I've no idea how to get onto the 'list'?????
chris
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Re: COVID-19 issues in ENGLAND only

Post by chris » 11 Mar 2022 23:00

Hello there.
I am so sorry to hear that your daughter has contracted Covid, given her other serious health conditions. Also that she should have been identified for emergency Covid treatments and she did not receive any letter or Priority PCR kit?
I hope you have now managed to determine if she should be receiving one of the treatments?

Regarding your own situation, I’m sorry to say that you are not alone in wondering why you were not on a central list and notified by NHS about this treatment. MDS UK has been in lengthy correspondence for nearly a month with NHS England and NHS Digital (who manage all the data for NHS). There was also a meeting yesterday with NHSE and NHSD and other blood cancer charities and we are hoping to be able to let our members know that this issue will soon be sorted out! MDS was accepted as being one of the eligible groups back in December but, by then, all the letters had already been sent out. Some people with MDS did receive letters. Others didn’t and there seems no logical pattern! I have CMML, the MDS-type with low neutrophils, and I did not receive a letter or PCR kit either! Like you, I have had my 4th vaccine and received an official NHS invitation for this, stating I was immunosuppressed!

I hope you are a member of MDS UK as you will then receive updates about this situation via our e-newsletter?

The good news is that you have managed to get your Priority PCR kit so that should trigger rapid treatment should you test positive for Covid. Just check it is a priority kit. (It has a red box and states priority on the instruction booklet).
This must be a very worrying time for you. Hope you have managed to escape getting infected.

Kind regards

Chris
Chris. Local Patient Support Ambassador (Essex) (F) Age 72 (2022)). Diagnosed in 2008. CMML-1. Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 4-monthly. SE Essex
PMTW19
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Re: COVID-19 issues in ENGLAND only

Post by PMTW19 » 12 Mar 2022 14:27

Thanks for your reply Chris. My Priority PCR kit arrived this morning. All being well, I will not have to use it. Yes, I am a newly enrolled member and will be keeping an eye open for any updates on this subject. What really worries me is that there appears to be no formalised route for all of this. The letter from my haematologist confirming my MDS diagnosis clearly states that I am immunosuppressed and that I should get a fourth jab. My GP, the 111 and 119 services didnt have any idea about how to get me the jab. It was only after much agitation with the local Clinical Commissioning Group (CCG) that I managed to get it.
I am at very low risk MDS wise so I'm not particularly worried about my own situation right now but there are possibly others out there at higher risk who are going through the same problem.

Best Regards - Peter
chris
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Re: COVID-19 issues in ENGLAND only

Post by chris » 12 Mar 2022 19:45

Hit the nail on the head there, Peter! This has been very badly implemented. People who have not been informed about this cannot even push for their vaccines or Covid treatments - as you and I have done! It really shouldn’t be down to individual persistence to get vaccines and treatments we have been promised to protect us!
It becomes an “information lottery” instead of a postcode lottery?

As soon as I find out about progress I’ll post back on this topic.

Best wishes

Chris
Chris. Local Patient Support Ambassador (Essex) (F) Age 72 (2022)). Diagnosed in 2008. CMML-1. Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 4-monthly. SE Essex
PMTW19
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Re: COVID-19 issues in ENGLAND only

Post by PMTW19 » 12 Mar 2022 21:05

..... I should have added that I am coming up to my 86th birthday (no youngster). Blood problems (Pancytopaenia) were identified three years ago following routine blood tests. Bone marrow tests were taken late last year and MDS diagnosed in December last year. Next phone session with consultant will be at the end of this month. Having read the patient information booklet I shall have a lot of questions to ask!!

Peter
PMTW19
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Re: COVID-19 issues in ENGLAND only

Post by PMTW19 » 29 Mar 2022 19:33

5th COVID JAB
Just by way of an update, yesterday afternoon I received a phone call from my local CCG inviting me to book for my 5th Covid jab. This was on the basis of my being immunosupressed. It is just 3 month from the date of my 4th jab so something in the system appears to be working!!
chris
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Re: COVID-19 issues in ENGLAND only

Post by chris » 29 Mar 2022 23:19

That’s great news, Peter. Not sure which area of the country you live in but they now seem to have got their act together!!

I’m due my 5th one in mid-April. If I don’t hear soon I shall have to start agitating again but my local GP practice has never questioned my eligibility so I haven’t had the fight that some people have had!

Hope your next consultant appointment goes Ok.

Other good news is that we seem to have made some headway regarding the Covid treatment eligibility “list” and from around 7th April we are hoping that all MDS and CMML patients should receive confirmation of their eligibility for emergency Covid treatments. Watch this space!
Best wishes

Chris
Chris. Local Patient Support Ambassador (Essex) (F) Age 72 (2022)). Diagnosed in 2008. CMML-1. Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 4-monthly. SE Essex
PMTW19
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Re: COVID-19 issues in ENGLAND only

Post by PMTW19 » 30 Mar 2022 17:41

........I live on the boundaries of Surrey and Berkshire. I am registered with a GP in the West Surrey area and therefore fall under the auspices of the Surrey Heartlands Clinical Commissioning Group. So far, they seem to be 'on the ball'.
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