Support for autistic 18-year-old with severe needle phobia and blood tests

[Glitterballofdreams]

DD is 18, and on the spectrum. She has a severe fear of needles.
She had to have an operation a couple of years ago under general anaesthetic, and it was utter chaos in the hospital with her refusing cannula and the hospital staff became very impatient with her, they eventually put her to sleep with gas and then fitted the cannula.

She has many health conditions, and the GP and cardiologist want blood test completed.
We discussed her fears with the GP, who said she could possibly have something to calm her down beforehand. However she is completely refusing. The thought of it makes her unwell.

Does anyone have similar fears or experiences?

Hi, my DD has a similar aversion to needles. She has been in hospital recently and they were great with her, using numbing cream and blocking her view of them putting the cannula in.
Her GP needs further bloods and we are going to try a similar approach with the nurse at the surgery. We’re also going to ask if the blood test chair can be removed from the room. If DD sees that chair, there’s no way I can get her into the room!

I am so glad they were patient with your daughter.
Mine is so strong willed, I’ll never get her in the surgery/hospital if she knows what she’s going to have done.

It’s more difficult now she’s 18, as the medical staff can’t listen to me as much.

We have heard of the TAP method and will have to ask if something like this might be possible for her.

My DD is 21. Do you have someone at the hospital overseeing care for people with LD?

We have not been given such information. But I will definitely look into it, thank you

No one gives you the information, you have to find it for yourself. 😕
Worth having a dig around on your hospitals website and see what comes up.

Thanks, there was nothing online. But I just rang my GP surgery, who are contacting the learning difficulty team for more advice.

Last time I took my adult dc we used emla cream on both elbow crooks before we went. This numbed it enough that they were ok. You can buy it over the counter and I just secured it in place with some clingfilm and medical tape stuff. Would that help?

https://www.uhmb.nhs.uk/news-and-events/latest-news/video-and-story-uhmbt-pioneers-painless-new-blood-test-and-transforms-lives-patients-learning-disabilities-and-needle-phobia

Here's something you can show them if they need information.

I'm the same.

I just refuse to let them take blood samples or cannulate me.

It’s difficult, as the pain isn’t the problem. She just cannot stand the idea, even if I try to discuss it with her she goes faint.

Needle phobic here 👋

I have diazepam leading up to these situations, I use numbing cream and also hot water bottles over the numbing cream as this helps bring the veins out.

I’ve had hypnotherapy but it personally didn’t work for me.

The numbing cream and hot water bottle definitely helps and I just have to request not to be told what’s happening and bury my head in whichever poor sod has had to accompany me.

There will be a learning difficulties person at the hospital who you can contact and they will liase with the rest of the hospital for you.

Could you discuss going for an appt, it will involve that but you won't talk about it, mention it, no one there will say anything, just go in, get on and do it?

when I took my ds he asked them not to talk him through what they were doing because it made it worse.

Ds is the same with the feeling faint around body related things.

I can totally empathise with her because this is exactly the same for me. It isn't anything to do with needles. I have piercings and needles don't perturb me in any way. Its a phobia of anything touching my joints, or anything being placed under my skin. I don't get queasy or faint, I get a fight or flight response when I see the implements. The last nurse who wanted to take blood conventionally I had to warn that if she persisted in approaching me with the venipuncture gear she was likely to get biffed.

I can just about tolerate it in the back of my hand depending how chill or otherwise I am on the day, but typical sites are a total no-go, and I won't let them cannulate me under any circumstances.

Emla cream applied thickly to both sides (in case one vein is easier to find or the chosen side doesn’t bleed easily), do it about 20 - 25 mins before, cover with cling film and stick down with micropore. She won’t feel anything for bloods, get her to tap the area before they do it if she’s worried to prove it’s numb. Elma only works for skin deep procedures like bloods etc, won’t work for injections that go into muscle like vaccinations which is why sometimes kids feel tricked or that it doesn’t work. Also if she drinks a lot of water before the blood will be easier to take and it’s more likely she will have a quick and positive experience.

This is really similar to how my DD reacts! She can get aggressive through sheer fear. She has fainted in the past, just over the thought of it all. She will not willingly walk in there knowing they want to take blood.
She also said she would let them take from her hand but the GP said no it has to be arm.

It doesn’t have to be arm (but not all nurses are happy to do hand). Make sure they have a double appointment. Not sure we would manage this tbh (practice nurse). The environment is all wrong. Would district nurses have a go?

They can take it from her hand with a butterfly needle. Honestly. Ring the switchboard for the hospital and ask for the phone number for the learning disabilities and autism coordinator. If you explain what you have said here they will be able to arrange blood to be taken from the back of her hand.

She also said she would let them take from her hand but the GP said no it has to be arm

There is no justifiable reason for this unless DD is significantly overweight to the point whereby they'd have legitimate trouble locating a vein in the back of her hand.

Mostly they just get you to drink a lot of fluid, and you can even sit with your hand in front of a heat source to make the veins pop.

If the nurse is unwilling to take a sample from the back of her hand, I ask to see a different nurse.

Would she be better having them done in the hospital rather than the GP surgery?
The phlebotomists at the hospital were really good when we were trying to get a blood sample from mymy daughter when she was 2.

I have had many blood tests over the years and I can definitely tell who does them regularly and not. I have had some horrendous bruises from a GP taking blood from me and a brand new Dr on his first week on the job left me with blood pouring down my arm

How does her mind work? When she is anxious about new or scary things how does she process and them and calm down? My daughter is very much a knowledge person, so when we have done new things she needs to have the process broken down and each step explained to her.

Could you role play it at home to work out where the point of no return is and see if you can work on getting passed that step.