COVIDmaking a plan – my story

My name is Alison and I have a genetic immune disorder that makes me extremely vulnerable to COVID. I have been shielding since the start of the pandemic, I rarely go inside anywhere except for medical appointments. I have had all the vaccines but due to my condition I won’t have responded well and so remain at high risk.

Welcomed news – access to nMAbs and antivirals

The past 2 years has been a very hard and long slog for the entire immune deficiency community, so I welcomed the news late last year that the NHS was offering antibody and antiviral treatments to people who are at highest risk of becoming seriously ill, should we test positive. We were supposed to get a priority PCR test in the post to keep on standby, and if we tested positive, we would automatically be contacted to arrange access to Sotrovimab (neutralising-monoclonal antibody treatment – nMAbs) or Molnupiravir (antiviral) – both of which must be administered within 5 days from symptom onset.

Over Christmas I was pleased to see that many in the community had received their tests and email/letter instructions. I was feeling excited about returning to a more normal life, knowing that I would now stand a better chance if I did catch COVID thanks to the development of the new drugs.

Feeling let down by a system that didn’t work for me

Unfortunately, I did not receive the notification or the PCR, despite my qualifying medical condition. The NHS website stated that we should phone 119 if we hadn’t received the PCR by 10th Jan, so I did this, expecting them to be able to tell me how to get added to the list for priority treatment. Several frustrating calls later, they clearly didn’t have any information and guidance on this. I was told to contact my GP, then the immunology dept, even the local council’s department for social care, but nobody knew how to get people added to the list. It was a stressful waste of everybody’s time.

I am very grateful to Immunodeficiency UK for their advice on this.  Firstly, they have explained that it is unlikely that anyone can add me to the list, so I can save my effort and frustration and not take up any more of my time on this and they suggested planning how I would get a test and so on. Secondly, I am pleased to know that a group of charities, including Immunodeficiency UK, are raising this issue on our behalf.

Making my plan

That leaves me to concentrate on where I can influence things: planning for what to do if I develop symptoms, as time will be of the essence, and anxiety will no doubt be very high. I have received a backup (non-priority) PCR test from 119. I have also found my local walk-through test centre, the onsite test results are being returned more quickly than the postal ones now so if I am well enough that’s where I would go. I would then need to let my immunology team know as soon as I test positive, and they could then help support me to get the treatments.

Still disappointed but feeling better!

I remain disappointed and angry at the flaws in what happened to me, and I am fed up of promises being made and not being lived up to by the NHS as someone who is in the most vulnerable community. However, I do feel better having made a plan of action to use if needed.

If you are in a similar situation then plan too. It may make you feel more in control.

Posted 28/01/22