Can we talk about vaccine exemptions?

[user1471548941]

After a whole year of anxiety, stress and sleepless nights about vaccines I have today been refused an exemption.

I have attended a vaccine centre multiple times, each time showing extreme reactions to the needle that eventually the lead nurse asked me not to return until my GP had offered some support. Essentially I am so anxious I cannot stop stimming to a point I am still enough to get the needle in. The staff at the vaccine centre were wonderful; SO supportive and patient and tried everything available to them.

We spoke to the GP and asked about several things I would like to try, all of which I was told no, were not available (i.e. vaccine at home, gas and air). The options I was given were counselling or medication.

The referral for counselling was rejected based on the fact that the service isn’t suitable for autistic people and apparently no other service is available.

We are looking into private counselling but obviously it’s costly and there aren’t many counsellors available that know anything about autism.

The medication didn’t work because it made me so anxious, meltdowny that my partner did not feel comfortable taking me to the appointment (I was not permitted to drive on the medication).

On this basis the next GP we spoke to agreed that we had run out of options and that an exemption on the basis of being autistic and being caused significant distress was appropriate in this scenario. He said that it needed to be approved by a multi disciplinary team but that he would promote it being approved.

Today we had a call from the receptionist to say it’s been rejected with no reason given other than “not something we would approve at this time”. They cannot offer me another appointment to discuss for 5 weeks but having already spoken to 2 GPs, there’s nothing else that can be offered.

What am I supposed to do? The vaccine centre say don’t come without GP support, the GP can’t offer the support but also won’t offer the exemption.

It feels SO taboo to not be vaccinated and therefore it can’t be discussed. I feel ashamed that it is so difficult to vaccinate me and overwhelming am being made to feel that I should “just try harder” but to be honest, the repeated attempts, asking people to hold me down on beds, walking out after another failed attempt is just making it worse.

My NT husband is absolutely fuming on my behalf and says it’s not my fault and the GP is in the wrong.

Has anyone else been through this process or have any experiences to share that may be helpful?
Please no judgement on this thread, I have debated posting for a long time and haven’t for fear of the response. I’m now posting as I don’t know where else to turn and this neurodiverse board seems a safe place.

[Kitkat151]

Change GPS?

[ofwarren]

It's bollocks that they cannot do it at home. My autistic brother has had all 3 at home!!

[user1471548941]

Really @ofwarren?!! I was told it was illegal for them to remove the vaccine from an official vaccination centre! This was also the reason it couldn’t be done in the GP surgery with a long appointment time etc etc.

I feel like because I have a job and can speak (and am a woman…), I’m treated like I don’t have “real autism” and therefore haven’t been offered the correct adjustments etc. I’m just so tired of trying to make people understand that someone who has a job and can speak still has major difficulties in other areas.

[ofwarren]

Our GP surgery does them too so they are really lying to you.
My mum organised my brothers through the GP and they sent a nurse round.
Have you got anyone who can advocate for you?
I'd get a husband, friend or family member to write to your doctors surgery explaining the situation and say you need to have it at home or at the GP.

[BuanoKubiamVej]

Do you need an exemption for anything? ie is your job conditional on you having the vaccine by a certain date unless you have an exemption? I am just checking this because I know that one of the aspects of my own autism is that I can get a bit hung up on complying with "the rules" in a very literal way and NT people don't understand how stressful it is to not do so, when they would just shrug and find a workaround or just ignore it if the rules don't work for them.

Assuming that you do actually need this - The fact is that the vaccine centre has told you not to attend again without support from your GP. Your GP has said that basically no support is available. Therefore a vaccine can't happen. However what you don't have is a paper trail. I think that you need to speak to the clinical lead at the vaccine centre first and ask for them to write formally to your GP asking them to either provide you with suitable support or to issue you with an exemption because a vaccine cannot take place without such support. If the clinical lead wasn't present at your previous attempts you may need to try one more attempt at which you will do your very best to cooperate with, in order to provide that person with the evidence that they need to write such a letter. At the moment the GP only has your word for it and that's not enough but with a paper trail of formal letters it is possible to hold people to account. It's one thing to tell you verbally "no" and quite another to have to sign a formal letter confirming that they aren't going to accommodate your needs.

[BarrowInFurnessRailwayStation]

I'm so sorry you're distressed. Do you need to have a formal vaccine exemption? Many people haven't had the vaccine and they're getting on with their daily lives. Do you need it for work?

[user1471548941]

Thanks for the kind and useful responses.

Yes, I do need an exemption as the travel element of my job will be restarting this year. My employer will not be understanding without an “official” exemption. Hence now choosing this pathway.

My husband joins calls etc with me and was present at the appointment where we were told the exemption would be supported, otherwise I might have thought I dreamed it.

I think @BuanoKubiamVej has it spot on that we need more of a paper trail; I will look to try and organise this- it gives me something practical to do to move forward.

I’ve also booked an appointment with a private GP to try and get a second opinion/see what other support can be offered. It is attached to an NHS GP in the next town, so hopefully they will have a different view. I live in a small village with only 1 GP surgery.

Thank you for not judging!

[8MinutesToSunrise]

We have an accessible vaccine clinic in our area specifically for autistic people, might be worth asking your CCG if there is something similar locally.

[RatherBeRiding]

Absolute bollox that you cannot be vaccinated at home! My OP's elderly, housebound father was given the vaccine at home by the district nurse and I am pretty sure this is far from unusual. There are a lot of people who, for one reason or another, cannot attend an 'official' centre. It does sound like you are being fobbed off. Good luck with the private GP - I can't help but think you will find them more supportive.

[user1471548941]

We are heading back to the vaccination centre tonight that have been most supportive. The point will be an attempt at vaccination but then asking them to evidence the difficulties if unsuccessful.

I hate it and am already getting twitchy because I know what I’m about to put myself through but I really really love my job and if I turn down the opportunities this year I will be so gutted so it’s worth it.

I called 3 other GPs in the local area and none could offer a home vaccination, I certainly will not be joining the one that said “we cannot offer any support for vaccination, we expect adults to take responsibility for their own medical care” 🤔🤔🤔.

Thank you again for the non judgemental support- it appears to be a postcode lottery that I do not have a winning ticket for!

[BarrowInFurnessRailwayStation]

Do you have needle phobia? Is it the physical sensation or the idea of the needle?

[Bagadverts]

They can do home vaccines. Here is NHS England guidance and I’d be pretty sure you’d find something for NI/Wales/Scotland

www.england.nhs.uk/wp-content/uploads/2021/02/COVID-19-vaccination-training-for-clinicians-feb-2021.pdf

[felulageller]

You should speak to your union at work. If they were forcing you to travel and you can't because of your disability you should have a good case against them if they tried to discriminate against you.

Give up on the actual vaccine and see this for what it is- an employment issue.

[user1471548941]

@felulageller I would love to see it that way but it’s actually an all expenses paid trip to New York to be trained up for my next promotion, so they are not forcing me- I could chose not to go but there would be consequences to my own career!

Thank you for the link @Bagadverts we have sent this to the GP to ask them to review it. We also had another unsuccessful trip to the vaccine centre tonight and they have agreed to write to my GP to explain the severity of the issue.

[Muchtoomuchtodo]

@user1471548941, does your work have an occupational health department that might be able to support you either in having the vaccine or liaising with your GP and the MDT who approve or deny exemptions?

[Angelina1972]

Did you try taking Diazepam 20 minutes before going for the vaccine?

[user1471548941]

Just want to say thank you for all the support and suggestions on this thread.

We made another (traumatic but productive) trip to the vaccine centre where they agreed to contact my GP to confirm what was happening. I also wrote a letter to the practice to explain the levels of distress being caused and today the exemption was agreed “in principal”.

It’s not the perfect solution but it makes conversations with my employer about where I can and can’t travel to much easier with medical agreement.

With the support of my partner we are going to look into some private counselling to further understand my seemingly very deep issues with accessing medical care but we can now take time over this, chosing the right counsellor, not feeling time pressured etc.

Today a few things have happened where I have seen the autistic community and other women be the first to jump to each other’s defence so I wanted to say thank you.

[BarrowInFurnessRailwayStation]

I'm glad that you have a plan in place to help you in the future. I understand how difficult it is. I struggle with accessing medical help as well.