There has been concern that people with ataxia have not been put into the correct categories in the Covid-19 Vaccination Priority List.
Ataxia UK has written information about the vaccine and has also created template letters that you can send to your GPs to ensure you have been placed in the correct category.
The below links to the Ataxia UK website give information on the vaccine, which categories people with ataxia should be in, as well as to the template letters you can use to send to your GP.
I used a similar letter to send to my GP and have now been put in the correct category-category 6.
Just to make clear the initial putting people into categories is nothing to do with GPs. This is done centrally by a coding regime. The problem is cerebellar ataxia does not have its own code. Unless you inform the GP of what category you should be in they will not be aware that you have been missed.
Those who have had shielding letters from the NHS will be in the correct category (category 4) and do not need to contact their GP if you have not already been vaccinated. Your GP will contact you.
Obviously if you have already been vaccinated (which is great!) you don't need to do anything.
Best wishes
Harriet
Written by
HarryB
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Many thanks for this. I had to inform my health centre myself & used the information leaflet brought out by ataxia uk. I sent one to the manager & one to my GP with a brief note with my name, address, date of birth etc & explained my diagnosis, when I was diagnosed & by whom & asked if I was on the vulnerable register for the vaccine. The manager rang me the following day & said I wasn’t! But I was now & the code had been put in my medical records. I’m so glad I did it or I’d have been sat here waiting & never hearing anything!
Thank you for resent information.I feel that .I have not been told anything at all about covid19. I have not had the vaccine and I have not been told which category I've been put in, if any! I am going to use the template you sent and on Monday I will ask for some info from another Dr at my surgery. I am going to ask for a referral to a neurologist nearer home as my current consultant doesn't think she is mine and apparently she's on annual leave.
Hi Ataxia UKThank you for the letter template and the info.
I hand delivered it today to my doctors and 3 hours later received text reassuring me that I am in group 6 and would not get overlooked.
So pleased that it was read and actioned.
I know that ataxia was not on my medical records at the surgery which is an oversight on their part despite over time receiving letters from the neurologist.
I have just been contacted by my local practice manager and was told that the letter was a mistake and their must have been a mistake and It made no difference to my level remains at 6. I don't mind being in group 6 but I do mind that the information provided by experts was apparently ignored and I was told that if they have any vaccination left over I would be contacted. That was not the point of the letter or the information I provided. What do you think I should do now?
It is extremely disappointing that your GP surgery has reacted in the way they have. As you say the information provided by Ataxia UK is based on clinical fact, not opinion.
On this occasion, as you have been put in category 6, I would be the same as you and be happy to be there. The vaccination programme is being rolled out so quickly and efficiently it hopefully will not be long until you are called up.
Have your GP surgery received a GP pack from Ataxia UK? If not you could contact the Helpline (helpline@ataxia.org.uk) and ask for one to be sent out. This is not straightforward at the moment as all staff at Ataxia UK are working from home, so their capacity to put things in the post is reduced at the moment. However this could be done when Lockdown is over and the staff are back in the office.
I just wanted to let you know how wonderful my Consultant at Sheffield is. We had a telephone conversation this year because of Covid and as a result of that conversation she organised a jab for me!
Thank you very much Harriet for this great idea. Many doctors don't know/think of ataxia conditions. I wil also do it in Barcelona and encourage the Spanish Federation to prepare us a letter.
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