Today I feel betrayed.

I understand the desire to save money and get back to normal life. But we, the 500,000 who are immune compromised due to blood cancer or other reasons, are being left behind.

So there we have it:

No announcement of any plans to purchase long acting monoclonal antibodies already available in other countries

No requirement for those with COVID19 to self-isolate and the end of payments to those who do.

No more testing. 

This means a life of fear and even more social isolation for us.

 
No tests so we can understand what the risk is in the population via the ONS survey and decide when we feel more safe to go out. 

No more Zoe app test reports to also give you an idea of what your local infection rate is.

No more tests so we can ask family and friends to test before we meet them. 

No more tests so we can check ourselves regularly to reassure ourselves that we are safe. 

Tests only for those on the extremely at risk list, and only when we are symptomatic.

This means you won’t be able to keep a test at home. So if you get sick, you will be subject to deadly delays again.

And there are still many who do not realise they are on that list, so what of them and the automatic referral system? If the general population are not being tested how will we detect those who may benefit from the new treatments?

So we see once again the problems with this new unaccountable and unalterable list that many like me are still not on.  

The NHS, as I will outline below continue to deny there is a huge problem. A quick post onto a few social media patient forums today reveals MANY blood cancer patients (and presumably others) never got the letter or the priority PCR kits so presumably wouldn’t get the testing they need now, either.

If we can’t get tests how do we get access to the life saving covid19 treatments?

So it seems I really don’t matter to the government.  Do you?

All the changes leave us unprotected. The one that hurts the most is that they won’t buy the monoclonal antibodies I helped develop by being a volunteer in the clinical trial.   Available in more than 20 countries but not here. 

I do feel like I’ve been condemned to a greater risk of death and betrayed along with 500,000 others. 

This short video clip from a patient charity on the evusheld part of this betrayal says it well. 

Gemma Peters of Blood Cancer UK wrote to the Times today:

I mentioned earlier that I am still struggling to get the NHS to acknowledge that they have made a major error in the new list f the most vulnerable which is even more crucial now we learn it will be used to ration COVID testing.

The latest reply from NHS digital came today as if to cause a further slap in the face:

Dear Adrian Warnock,

 Thank you for your query relating to the list of people eligible for covid treatments.  Apologies for the delay in responding. We have been advised that you are not in the eligible cohort for this treatment and that you should discuss this with your General Practitioner, General Practice or Hospital Specialist.  

If the Health Care professional feels this condition should be included, they should outline their recommendation for this to be added to the eligibility list by emailing england.spoc-c19therapeutics@nhs.net   The email should be marked  for the attention of the Independent Advisory Group for priority cohorts. The list of health conditions has been agreed by the UK Chief Medical Officers, based on advice from an independent advisory group of health experts commissioned by the Department of Health and Social Care (DHSC).  We regret NHS Digital are unable to assist on this matter. 

Yours sincerely, Office of the Data Protection OfficerNHS Digital

Received by email.

This shows they didn’t even read my letter as I have not one but TWO conditions on their list. I have emailed this NHS England address and asked my consultant and GP to do so, but also replied to NHS digital as follows:

Hi
Can you confirm this is the end of your complaint processes as I am involving the health ombudsman. Why do you insist that there has been no error in compiling the list when you have already had to admit there was one error?  
I actually have TWO conditions that qualify me according to the official list. And as presumably the list is going to be used to give access to testing, it’s important it’s fixed as I will be unable to access life saving treatment without being on it. 

My two conditions CLL and a secondary immunodeficiency (receiving immunoglobulin replacement therapy) are both listed in the commissioning policy and my GP and hospital both assure me my notes are correctly coded. But despite that I was excluded from the list and still haven’t got a priority PCR or letter nor been added to the list for the automatic referrals. 

There NEEDS to be a process for getting individuals added who should have been added and to check your coding to see what other errors have been made. 
This is a matter of life and death. 

Yours 
Dr Adrian Warnock (retired)

sent to NHS Digital by email.

Who will help us?

If you are affected by this, I suggest you contact Blood Cancer UK or a different patient charity if you don’t have blood cancer and ask them to put your case forward to NHS England as a case study of someone still not on the list.

Learn more