Crohn’s, Colitis, IBD & Priority Groups for Covid-19 Vaccine

Thinking back to 12th March 2020 we had no idea what was to follow… 

When the government announced they planned to follow herd immunity to tackle Covid 19 I was devastated

I thought my days were numbered. You see, I have Crohn’s disease and have been immunosuppressed for a few years now. My medication, Infliximab and Mercaptopurine aka 6MP, help against Crohn’s flares but in doing so reduce my own immunityand the ability to fight infections.

On 13th March we took the decision to remove our children from school – it turned out it was a week prior to schools shutting, however we did not know this at the time. We went into Self Isolation.

I never received a letter from the government advising me to shield due to coronavirus

Although plenty of medical professionals advised it. I only received a phone call from the Shielding Advice Line confirming I was on the shielding list. I assumed the lack of letter was due to an administrative error and just muddled along as I was able to get priority deliveries from supermarkets. As I am self employed and work from home anyway I didn’t need a piece of paper to prove I was shielding so I didn’t think too much about it.

When Covid 19 vaccines were announced I checked the groups online and assumed I would be in Group 4 as Clinically Extremely Vulnerable or CEV

There seemed to be a lot of confusion about being immunocompromised and being deemed Clinically Extremly Vulnerable. Some medications, including the two I’m on, aren’t enough to warrant being in group four or CEV. However, reading publications from Crohn’s & Colitis UK (who have been fab in keeping up to date throughout the pandemic) it seems that your place in the vaccine grouping is not purely based on your medication, it is also whether you are currently in a flare, or your medical history can also be taken into account.

Crohn’s and Colitis UK have produced a thorough article for anyone with Crohn’s or Colitis wondering about the Coronavirus Vaccine, you can read it here

When I contacted my GP for some test results recently I asked what group I was in for the vaccine, it turned out I was group 6. I queried this with my GP  who told me they were given the list and there was nothing they could do about it. However this was not the experience some of my friends had.

I contacted my MP about the discrepancy in the Covid-19 vaccination groups 

While I am happy to wait my turn for the vaccine, it seemed odd thhat some people were being vaccinated while others, in the same position, were not and this just didn’t sit right with me.

Over the coming days more and more people were reporting that they had been vaccinated who were on the same medication so I decided to contact Crohn’s and Colitis UK via online chat. they confirmed that, due to the combination of the medication and the fact that my disease is currently active then I should be in group 4.

I went back to my GP who maintained they couldn’t do anything and suggested I fill out the shielding form on the government website. I did this and received an email telling to, wait for it… contact my GP to ask them to add me to the CEV register. My GP surgery said they would look into it.

In the meantime The Guardian published an article along the same lines

It suggested that a lot of people were missing out on a priority vaccine because a lot of GPs do not realise they can add patients to the list should they fit the criteria but have been missed for whatever reason. It is not as simple as just your health condition or medication, it’s a combination of factors.

At this point I got back to my MP detailing my experience up until now and asking that she help. Someone really needs to help vulnerable patients, we’ve been through enough, not least this last year. 

Yesterday I was at hospital having my Infliximab infusion

I have to say visits to the hospital make me particularly nervous for, I would think, obvious reasons. On my return home I had a call from my GP offering the vaccine on Wednesday. I am so relieved. They haven’t said whether it is due to me now being classed as clinically extremely vulnerable or it’s because that they are now dealing with group 6 (unlikely as my group 3 mum was only vaccinated on Saturday). Whatever the reason I am now being vaccinated tomorrow.

If you think you should receive the vaccine as critically extremely vulnerable please do not give up

Your GP can add you to the list, although many do not seem to realise this. If you are in any doubt about your risk level then fill out Crohn’s and Colitis Risk Level Tool

 

 

 

 

 

 

 

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