Be prepared: devise a plan a & a plan b for your so... - Mencap

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Be prepared: devise a plan a & a plan b for your son or daughters vaccine!!

Trigger36
Trigger36

Severely autistic daughter 16 Pfizer jab unsuccessful last week horrendous experience for us both no empathy no understanding of s.e.n at all..its taken a week to rearrange this jab to be tailored to our daughters needs !!..no plan a or b no call to tailor this vacation process for leah .hello its 2021 shocking!!🤯🤯🤯

15 Replies
Sarah_Mencap
Sarah_MencapAdministrator

Hello Trigger36

Thank you for sharing about this. I am very sorry that you and your daughter had this experience.

It is great that you have been able to rearrange the jab to suit your daughter. What is happening to make it easier? I am sure other parents would be interested to hear what reason adjustments they have made.

Best wishes

Sarah

Hi Sarah get your gp 's to listen to your son or daughters specific needs arrange a telephone appointment first..now our gp is doing Pfizer jab in our car in Leah's restraint although her arms are free so could be interesting!..make sure they have a understanding of special needs!!..calm atmosphere is needed .not just anyone to give vaccine & to definitely not say " it's ok I'm not gonna hurt you!!!🤯

Trigger36
Trigger36 in reply to Trigger36

This could definitely not put you in a good position for future treatment it's a set up to fail from the start if no empathy & understanding believe me!!🤞

Sarah_Mencap
Sarah_MencapAdministrator in reply to Trigger36

Thanks for this. These are really good ideas. I think parents are really struggling to know what they can and can't ask for. This will really help :)

Cheers

Sarah

So much uncertainty in such a stressful time for everyone...sending love xxx

So sorry to hear this. My daughter is similar, had jab last week. Did you have a topical anaesthetic cream to apply beforehand? We asked for Emla cream and a clear dressing, apply to jab site at least an hour before, keeps it numb for at least 2 hours. We also made a book, ( just 2 pieces of A4 folded and stapled.) Our girl had labelled covid “the terrible germs’” so we used this and a couple of her favourite things to more or less bribe her, ie, “Only people who have the special medicine can go biking or to McDonald’s.” The big difference is obviously surgery attitude. We were given the last appointment of the day and the nurse took us straight in past others in the queue, daughter had her iPad throughout. As soon as we left she was whipped off to McDonald’s for a treat. The Emla cream made a huge difference. We also had Astra Zeneca jab as it’s less likely to cause a reaction, nurse was happy to let us go straight after (because no allergies previously) I’m sure you’ve thought of all this but just in case. Sorry for the long winded reply, best of luck next week, 🤞

Mommajan_
Mommajan_ in reply to C-N-M

Hi. This is a great tip! My daughter who is 22 with a mod/severe LD and a needle phobia is getting her jab on Monday. So I’ve just rang the surgery, on your advice, to order the emla cream. Thank you so much! Feeling a bit less stressed out now 😅

Trigger36
Trigger36 in reply to Mommajan_

Good luck I'll be thinking of you 🌷

C-N-M
C-N-M in reply to Mommajan_

Hi, hope it helps. If you’re unsure, ask them to show you how and where to apply, they could even mark your arm as a guide. Good luck x

Trigger36
Trigger36 in reply to C-N-M

Morning thank you for these tips and advice its lovely we can share stuff..on here 🌈🌈

FragileXmum
FragileXmum in reply to C-N-M

I spoke with the GP a couple of days ago about strategies for my son's covid jab next week. He is 28 and has Fragile X Syndrome/Autism/moderate-severe LD. He found having the flu jab last autumn distressing so we are anticipating a similar picture next week. The GP was very helpful and has prescribed emla cream and diazepam. She also said if he has difficulty getting to the surgery at the appointed time (which is early in the day) not to worry and get there when we can, he will still be vaccinated. So helpful to have a good response.👍

Absolutely posative response in 2021 we need more of this please right across the board of gp surgerys 🌈🌈🌈🌈

C-N-M
C-N-M in reply to FragileXmum

Thats great, can’t understand why we still have to fight for this type of response in the 21st century! There are enough stats on the abysmal outcomes for our loved ones for health professionals to get the message, and I’m speaking as a nurse so no unreasonable bias here. Really glad if my post has helped anyone and wishing all of you the best of luck with accessing the vaccine successfully XXX

That sounds like a horrendous experience for your daughter, however, on the flip side, my friends son who has multiple complex health conditions plus autism and complex learning disability had his vaccine last week. His support staff had visited the vaccine centre the week before his appointment and checked the procedure and to ensure reasonable adjustments would be put in place. They were told to send a member of staff at the appointed time to book in and then one of the nurses came outside to administer the vaccine while my friends son was sat in his car. It went extremely well and goes to show that while there are some terrible experiences there are also some fine examples of things going well.

I had this as well at. Place I took my brother to made him wait 30 minutes the drawed up the jab in front of him and we phoned the place and told them not to do that as he won't let them near him even my own GP doesn't show him the flu jab and put a gel on his arm so he doesn't feel the needle going in these hub have no trained staff on adults with serviley disabilities trust me

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