“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. “
Written by
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Did you read 2 days ago how over UK 200 members of this community were instrumental in providing evidence highlighting this problem and hence getting it corrected?
Hi Mtk1, I am still in the same position as you still waiting... Hopefully it will arrive in the next couple of days. Let us know when you receive it and I will do the same. Take care and Stay SafeSue
I have also contacted cll support and they told me to wait a few days to see if it arrived, and if not to re contact them and they will look into it for me, but no promises. Dave
My priority kit arrived two days ago. At first I couldn't understand why I had received a third kit as like many others I had given up waiting and requested a kit for myself and my wife . On the outside this kit has label " Registered Kit" and when you open it , clearly shows as a " Priority Kit".
Next day I received an email from NHS ( no letter) headed " Important information about new treatments for Coronavirus" confirming the process which we all know about..
Medical coding errors are a major issue and hard to rectify. For example Medicare in USA will normally pay for no more than two blood tests per year. Like most CLLer, I have multiple blood tests every year to determine my CLL progression. Have had several battles over blood test payment by Medicare due to incorrect medical coding submitted to Medicare. I am fortunate in that my wife used to do medical coding years ago, even though it is ever changing. My wife is able to interpret the EOB (Explanation of Benefits) from medical claims. It would be nice if we CLLer had some where we could obtain medical coding information.
The CCG is now telling people there is no more priority PCR Tests left so those of us who are still waiting and have not received one probably won't do now.
Officials have now altered the rules so that a positive lateral flow test (LFT) result online will be enough to qualify for the treatments – but the change does not come into effect until 10 February.
The new plans were slipped into the latest version of the commissioning policy for community treatment of Covid-19, which was updated on Friday.
Clinical commissioning groups (CCGs) are now telling people there are no more priority PCR tests available for them putting them at even greater potential harm if they catch Covid over the next 10 days.
The priority tests, which are the responsibility of the UK Health Security Agency (UKHSA), should return a result in hours but standard tests can take up to 72 hours to turnaround.
High risk patients have to start taking antivirals/antibody treatment within five days of coronavirus symptoms beginning – and ideally in the first 24-48 hours – for the drugs to take effect.
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The highest risk list, compiled by the Government, also powers an automatic referral system to the Covid Medicine Delivery Units (CMDUs) which is triggered when any patient on the list gets a positive PCR result.
Patients not on the list are put at a life-threatening disadvantage because they must instead find a GP, hospital doctor or nurse, A&E doctor, or a 111 call handler willing to refer them for the treatment – a process the charity Leukaemia Care said has left patients feeling “unsupported, frightened and abandoned”.
Blood cancer patient Dr Adrian Warnock, 50, from Loughton, Essex, and who has been shielding away from his family for almost two years, welcomed the change but said there were still major issues with the treatment programme.
He told i: “Relying on a positive LFT will speed up the delivery of life saving antivirals and antibodies for many. But as LFTs can show false negatives the failure to deliver priority PCR kits to many of those most vulnerable still poses a threat to our lives. Fixing the new list of those at highest risk remains critical to ensure the automatic referral system selects the right patients because some doctors still refuse to refer to CMDUs themselves.
“Requiring a certain level of symptoms or watching patients to see if they improve is dangerous as the whole point of these treatments is to treat people whilst they are only mildly unwell to prevent them getting worse and potentially needing a hospital admission.”
Dr Warnock, who writes a blog advising other blood cancer patients how to navigate the system, said another problem is people being denied access to the treatments because “we are not sick enough”.
He said: “At least one CMDU has used this line as an excuse not to give the treatment too early as there is no way of knowing if your symptoms will improve if you are given the treatment in the first couple of days of a Covid sickness.
“The whole point of treating vulnerable patients with antibodies or antivirals is to make sure they don’t get significantly unwell, which doesn’t usually happen for several days [following infection].”
Zack Pemberton-Whitely, chief executive of Leukaemia Care, thanked i for highlighting all the problems saying the change should lead to faster access to the NHS treatments for those at highest risk from Covid-19.
He said: “We’re also hearing from leukaemia patients who have now received their letters of eligibility and priority PCR kits in the post today. It is good to see the voice of leukaemia patients is being heard following the recent press coverage.
“However, whilst the change to lateral flow tests is a great start, we are concerned that leukaemia patients who haven’t yet received a priority PCR kit and cannot get hold of a standard PCR kit have to wait until 10 February to use lateral flows.
“Many leukaemia patients still can’t quickly access antiviral treatments and are worried what will happen if they catch Covid in the meantime.
“More work still needs to be done to identify those who are eligible but have been missed and to improve communications with those responsible for referrals to CMDUs.”
A UKHSA spokesperson said: “At the beginning of January, UKHSA was asked to provide around 1.3m priority PCR test kits to immunocompromised patients, details of which were provided by NHS England. UKHSA has now fulfilled this request and distributed all PCR test kits requested.
“We will continue to support this important work by ensuring eligible people receive their PCR test kits as soon as possible, where requested by NHS England.”
But whilst the CCGs said what they did another part of the NHS found an error and sent out lots more priority kits to at least some of us: inews.co.uk/news/health/cov...
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