Dear all
I thought you would like the links to the Ataxia UK website with advice on the taking the vaccine from the Medical Advisory Panel at Ataxia UK (first link), and also to an information leaflet produced by Ataxia UK, Suzanne Booth and Professor Giunti (Ataxia nurse and Consultant Neurologist at the London Ataxia Centre) (link 2)
ataxia.org.uk/latest-news/c...
ataxia.org.uk/wp-content/up...
Best wishes
Harriet
Good evening Harriet, many thanks for taking the time to post the information, is there an actual paper leaflet I could get hold of? Also could you tell me if I should be down as vulnerable on my GP health records? I was previously when my old gp who is been under for a long time was there, but since she’s left it seems I am no longer down as that, despite them obviously been aware of my diagnosis of CA, how do I go about this for future reference especially now the Covid vaccine is out & soon to become available to vulnerable people. Sorry to be such a bother but I’m just unsure of who to ask who’s answers I know are correct.
Many thanks in advance Tracy😊
Dear Tracy
First of all, I have sent you a wee PM!
Your GP records will follow you everywhere, irrespective of who your GP is.
If you were classed as 'clinically extremely vulnerable' during the first lockdown you will've received a letter from the NHS and your details will've been entered onto a database held centrally. This will apply to some but not all people with ataxia.
All patients with a diagnosis of ataxia are 'clinically vulnerable' to the effects of Covid-19. Your diagnosis of CA will remain on your GP records, even though your old GP has left. You do not need to do anything to make them aware you are 'clinically vulnerable'. As your diagnosis is in your GP records your GP practice will already be aware.
In each instance you do not need to do a thing. When it is your turn to receive the vaccine your GP practice will contact you.
I hope this answers your question!
Harriet
Many thanks for your reply Harriet I will look at my inbox after this reply. No I wasn’t down as clinically vulnerable just vulnerable but I had to chase my own flu vac up as at first they said I wasn’t eligible for it! I myself had to one again explain my C/A to them saying it was classed as a progressive neurologist disease & that is got intouch with them in the advice of ataxia uk, with a link to the page attached! they seem to think it only affects my balance & that’s it, where as my old gp had a full understanding of it. I’m getting to the stage of just being so fed up having to chase things up myself & constantly explain my illness despite the fact that I’ve left countless information packs that I’ve requested from ataxia uk. I honestly just feel like not bothering with anything & to stop trying to get someone to take my illness as what it truly entails, I’ve just had enough of everything at present & feel like I’m a huge burden who’s just trying to get attention😕
You are most certainly not a burden. Get that out of your head straight away!
As far as Covid goes 'clinically vulnerable' and 'vulnerable' are the same thing.
Unfortunately your situation with the flu vaccine doesn't surprise me. I have never been approached by my GP telling me I should have it, and I am sure there are many others in the same boat. The most important thing is that you have had it now and you explained why you need it. Good on you!
I totally understand how frustrating it is, especially when you have taken the time to try and make them understand and they don't listen. However don't give up. What you are doing is very important, most importantly to keep you safe but also in educating others into a rare disease.
The other thing about getting angry and frustrated is it takes up a lot of energy, something that is very important to those of us with ataxia. Try and conserve your energy by not getting frustrated so you can use it on more pleasurable activities that you enjoy!
I know times are difficult at the moment but please try and have as happy Christmas as you possibly can!
Harriet
Thank you so very much for your all help & all your very kind words.
Wishing you & your family a very happy Christmas & a hopeful wonderful & much better new year! Xxx
Thank you - Happy Christmas all at Ataxia UK and all my friends x
Haeriet i called you the other day but i got someone else, domt feel right ans have carers, proffesor wants that i have more hours with carer and even do a couple of wakimg hours , just wondered if you did an angry harriet to northamptonshire counci and could tell them to butt out of my health cos they never read proffessors letters, hope your well ,bet you dont remember me. Kind regards clive cornish
Hi Clive
I am well thanks!
I replied to an email you sent to the Helpline on 9th March. Please let me know if you haven't got it and I can send it again.
In order to access more care you would need to be assessed by Social Services. I am afraid I am not able to call the Council on your behalf.
If you are not happy with the treatment you receive from the Council you can make a complaint. Have a look at the following link-
northamptonshire.gov.uk/cou...
I hope you get your issue resolved.
Best wishes
Harriet
Hi supposed to be reassessed 18 months ago but as they know nothing about ataxia, superficial siderosis thry just keep passing the buck,we have two hospitals here, kettering and northamoton but since 2013 i have been going to oxford and see a p Lockdown hasnt helped but im suppksed to improve spasticity to keep at least as good as i am and use wheelchair less but the drs bere just dont get it
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