Sedation for Covid vaccine: My son is autistic and... - Mencap

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Sedation for Covid vaccine

Dunn62 profile image

My son is autistic and although invited to have flu jab every year, he has never ever had it due to his fear of needles.

To give some back ground to his fear, a dental procedure where a needle was needed resulted in months of trying, passing him from one dentist to another, to a specialist surgery, then finally to hospital to be sedated

Similarly an ingrowing toe nail took over a year to be finally referred to hospital for sedation following numerous attempts at doctors surgery to give him a needle.

As Flu is seasonal, we never ever get past the point of a number of failed visits to surgery, spread over a few months, before we are heading out of flu season and jab no longer necessary.

With the Covid Vaccine clearly being of far more importance, I feel I am sleep walking into a scenario where he is going to be forgotten about as arrangements for hospital sedation should have clearly been booked by now as they seem to take months to come about.

Does anyone know what plans, if any, are in place to accommodate him with his vaccine?

14 Replies
Sarah_Mencap profile image
Sarah_MencapAdministrator

Hello Dunn62

I am going to ask my colleagues for some help with your question. Please bear with me whilst I see what the latest guidance is on this.

Best wishes.

Sarah

Sarah_Mencap profile image
Sarah_MencapAdministrator in reply to Sarah_Mencap

Hello again.

Our policy team are just following this up. In the meantime they said:

"For now, we would recommend getting in touch with your local Community Learning Disability Team, who should have a health facilitation team, to discuss how the person might be supported to access the vaccine, including whether sedation might be appropriate/possible. Your GP should also be able to help you to think about this, although is also likely to value the input of the learning disability team. "

I will post any further updates from them here.

cheers

Sarah

Hi thee I totally understand your fears. One of my son’s the older one loves going to dentist and hospital in general. The more able son who’s younger had your child’s fears.

I have a suggestion. One he should have a health passport so that everyone knows he’s situation.

And the next you should have a disability Nurse on your local area she should arrange for your son’s appointment, so contact your local authority social care and request that service from the disability nurse.

Good luck.

Hello,

I agree with Sarah and Leosammas. There will be lots of people who fear needles or the process of the procedure hub familiar environments, people in uniforms/masks etc) and lack capacity over the decision to have the vaccine. It sounds like your son might lack the ability to weigh up the decision in the moment because his anxieties prevent him from being able to think it through. I think there is lots of thinking going on to enable the safe and effective delivery of the vaccine to people with learning disabilities, and/or autism and/or other conditions that increase their anxieties and impair their decision making ability such as dementia. The Mental Capacity act will guide the process for people, either Advance Directives (for you son, he could guide the planning whilst he is calmer about what he wants to happen once his anxieties increase) and/or Best Interest decision making and planning guided by yourself and others who know him and his needs well. Whatever the approach it must take into account the circumstances of each person. It would be good to identify your local learning disability team, or Primary Care Liaison LD nurse who commonly works with his GP to enable the annual health checks for people with learning disabilities. I expect this very issue is at the forefront of their minds for lots of people. Good luck.

Hi there. We are in the same position and share your worry. Firstly, before I forget, I wonder if you know that your son (whatever his age) can have a nasal seasonal flu vaccination. This is only licensed for certain ages but your gp can approve for it to be administered ‘off licence’. If your son would tolerate this (it is a very quick puff up the nose), it is a Reasonable adjustment’ that your GP should make to help him. Our adult son has the nasal flu vaccination every year and we administer it as he is wary of strangers in uniform!

With regards to the Covid jab, there is no nasal equivalent and there won’t be one this year. Although your community LD nursing team will be able to help with things like desensitisation, even if successful these take many, many months to achieve. I’m afraid that there is little understanding that an easy read booklet and a bit of role play are not going to solve this one! We need a solution in the next couple of weeks. Once we have our appointment through we are hoping to be allowed to have a conversation with a GP about sedation. As I understand it, some sedative meds can have the opposite effects in people with LD so we are hoping to be able to trial this at home first to see what effect it has (whether it is sedating enough to be able to insert an injection safely). If it is successful, we are hoping that our GP will prescribe Emla anaesthetic cream for us to apply to the injection site once our son is sedated and for a nurse to visit our son here at home once sedated to vaccinate him. Plan B is to arrange for hospital sedation/GA but as you say, this normally takes months to arrange.

The vaccination is a passport back to a semblance of a normal life which society is gratefully receiving, but once again our loved ones are not on equal terms.

Please let me know how you get on, and I’ll do the same. x

My son is exactly the same. He’s never had a flu jab. He has had to have a General Anaesthetic for teeth extractions. GA’s carry Their own risks. So for me my son won’t have the covid vaccine.

Thank you for the replies everyone. Some helpful tips on how my conversation with his GP should go, once it happens.

His annual review is normally February, however they brought it forward to September gone, which was a short telephone call this time. So the vaccine was not a topic to be discussed.

He is 29 years old, has also got rubinstein taybi syndrome and is well known by the nurses at our GP's due to his condition. I have asked several times in the past if their is another way to administer the flu jab due to his refusal to let them near him with a needle, but I am looked at as if I have asked a silly question and told no.

The only way for me to talk to a doctor is to book a telephone appointment, which are very difficult to get and I need to make sure I ask the correct questions in the limited time because once the call ends, I am on my own again. Emails are not answered, which is a shame.

SpeedyH profile image
SpeedyH in reply to Dunn62

Definitely follow up the nasal flu vaccine next September and if your GP refuses to give it, contact Mencap helpline and I’m sure they will be able to give you the link to the guidance that says they should.

I think that the advice on here that you would benefit from help from your local learning disability team (in our area they are part of the adult social Team) is great. They will be able to work on a long term solution and might have some ideas on how to achieve successful vaccination in the very short term. Desensitisation can take a very long time and doesn’t help everyone.

Hi Dunn62,

Agree with Mencap's answer. Reach out to your local LD team or hospital for support. It really pains me as a professional to hear your experiences.

Sounds like he could benefit from some detailed desensitisation around needles. Which sadly is only offered in certain areas but so important in enabling cooperation and aiding understanding.

Just to give an update to this...

After several phone calls and emails and messages being passed to doctor from receptionist then back to me via the same route, they finally agreed to give him a nasal flu spray.

On the downside, he ran away, locked me and the nurse in the room, hid in a corridor then ran out into the carpark via the fire exit.

I have now spoke to some one from the learning disability team and they are arranging with his doctor to administer the vaccine at home with the aid of a sedative, but no definite arrangement has been set yet.

I was informed he should have had his vaccine last week, but due to his fear of needles he was not invited. These press releases from the Government about everyone in group 4 having either had the vaccine or been invited to have it are not exactly true, they have not included all those not invited due to needle phobia as if they do not count.

We were able to get the nasal dose for flu from our GP and administer at home , the GP acknowledged this was the less traumatic answer for us.

I’ve emailed Astra Zenica about nasal Covid but there are no plans at present.! My son is terrified of needles. Good luck

UPDATE TO THIS.

My son has STILL not had or been offered the vaccine, despite promise after promise by LDT to come to our home to carry it out and promises of desensitization work.

Bottom line is absolutely nothing has been done at all.

OPEN LETER TO BORIS

My son has RTS, Autism and learning disabilities. He is registered as clinically vulnerable and was on the list to have had his vaccine in January. But due to no guidance being given on how to administer the vaccines with the aid of sedatives, he was not offered one.

14th February 2021

You stood in front of all the TV cameras and in Parliament to announce proudly that everyone in my sons group had been either given the vaccine or offered it

He was not given it, nor was he offered it

24th February 2021

You again took to the cameras and Parliament, following pressure from Jo Whiley, and stated all those with learning disabilities were being invited to have vaccine. You also claimed you recognised the added difficulties in administering it.

He has still not been offered it.

By the end of this week, everyone he comes into contact with, will have had the vaccine and will therefore start to become immune to symptoms if they happen to contract Covid 19. Although this is good for everyone else, it also makes it more likely they will pass the virus on to my son, not even knowing they have it.

I have my own booked in for Tuesday and can't help but wonder if this is actually going to put my son at further risk if I get it before him.

I have a massive fear of needles and when I had my first one I had a massive meltdown and I looked at the needle and i was much worse

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