UK NHS admits priority PCR error. Some kits sent out to CLL patients missed off. Hundreds have missed out on treatment referrals

Until very recently the NHS was denying that there had been any problems with identifying those at highest risk of COVID19 in order to offer them priority PCR kits and automated referral for antibodies or antivirals. They also claimed they would not be updating the list and further priority PCR kits would not be sent out.

However earlier this week many CLL patients reported that they had received priority PCR kits all of a sudden. Some of these people had no idea what the kits were for as they do not include an explanatory letter as to why they are being sent, and when they should be used.

NHS acknowledges that “under a thousand” patients were not referred for treatment automatically because of this error. What thus means is not that they failed to get a priorty PCR kit but that they tested positive on a normal kit and didnt get automatic CMDU referrals. Some may well have died as a direct result. Especially if they had no idea the treatments even existed so didnt seek them out. Sorry but this is a bigger scandal than drinking at Downing Street.

PCR kits will remain important for when an LFT is negative but someone has symptoms suggestive of COVID and the list drives automatic referrals to treatment with monoclonal antibodies and antivirals so needs to be fixed to save lives.

I have been able to get confirmation from NHS Digital that an error affecting patients with CLL has been identified. However not all patients with CLL have received their priority kit yet, including myself. And some with other diagnoses have also been missed off, presumably for other computer errors. NHS digital are still denying any other errors have occurred, a spokesman said:

“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with Blood Cancer UK to get the communication out to those affected yesterday and letters and PCR kits have been dispatched, please find our statement below including a sincere apology to all those affected.
We sincerely apologise to the patients affected by this error, which has now been rectified.
“We are contacting all those omitted to make them aware they are potentially eligible for treatment and have worked with UKHSA to send priority PCR kits to these patients.”
Background:
•                On 25 January 2022, it was identified that a medical code used to identify Chronic lymphocytic leukaemia (CLL) had been accidentally excluded in the CLL cohort due to human error. Rectification of this error was completed on 29 January 2022.
•                As a result, a subset of those with this condition were not digitally identified as being potentially eligible for treatment and will not have received a letter, though some may have been referred by other routes.
•                This letter is not required to access treatment, which patients can access by contacting their GP or 111 for a referral, but it does help to explain to patients what will happen if they test positive
•                Initial analysis indicates that under 1,000 patients were not triaged to be considered for possible treatment as a result
UKHSA have confirmed that priority PCR tests have been dispatched to all those affected by the CLL code omission. If you have concerns regarding other conditions I’m afraid these will have to be directed to NHSE in the first instance.
EMail to Adrian Warnock

Since the NHS has no mechanism for patients to raise these issues themselves those with blood cancer should contact blood cancer UK on 0808 2080 888 and ask for their case to be raised as an example. If you have a different condition then speak to a patient group for that condition and see if they can replicate what Blood Cancer UK have achieved.

Blood Cancer UK reported the following on their Facebook page:

Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test
But we heard from lots of people with blood cancer, on our support line and via a survey, who told us they thought they should have received a letter but hadn’t. There seemed to be a particular problem with people with chronic lymphocytic leukaemia (CLL), which was worrying because everyone with CLL should be eligible to be considered for the new treatments.
As people shared their experiences (and thank you to everyone who did so!), we collated their information and had conversations with NHS Digital, as they are the body responsible for providing the data used to send the letters. They used this information to investigate what seemed to be going wrong.
As a result of that work, they have identified an error affecting one code that meant some people with CLL weren’t being sent the letters. This error has now been corrected, and these people with CLL have started getting letters and priority PCR tests.
This mistake has resulted in the last month being a stressful time for some people with CLL. But we understand that human error sometimes happens with new policies like this, and we are very grateful to NHS Digital for listening to people with blood cancer, for investigating and fixing the problem and they sincerely apologise to all those affected. We think this error has only happened in England.
We want to say a massive thank you to our community for taking the time to call or fill in our survey, and particularly to those who agreed for us to share their NHS numbers with NHS Digital to help their investigation. By helping them get to a fix more quickly, you may have literally saved lives.
We have also heard about other people with blood cancer not being sent the letters, and are continuing to work with NHS Digital and their colleagues at NHS England to look into why this is. If you think you are eligible for the treatments and have not received a letter about it, please do let us know so we can continue to tell the NHS about any patterns in the people now getting letters. It’s vital that every eligible person can access the new treatments if they contract Covid.
Anyone newly diagnosed with CLL should have a letter sent from their consultant which will tell them what to do if they test positive for coronavirus. If you have been diagnosed in the last few weeks and have not received a letter then please speak to your consultant.
You can email support@bloodcancer.org.uk or call us on 0808 2080 888. Thank you!
https://www.facebook.com/bloodcanceruncensored/posts/457825085944157

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