Isabella’s story

We asked Isabella if she’d like to write something for AGN after we were initially contacted by her mum, experiencing a huge lack of support for her daughter’s needle phobia. Isabella had become more and more unwell, but all medical professionals said they couldn’t do anything further without blood tests. The problem was, nobody was supporting Isabella to be able to have the testing.

From Isabella’s mum

“She came home from university at Easter and after days of high temperatures she was told to go to A&E. It was here that an incredibly understanding Doctor listened to what we were saying, took into account her autism and helped to arrange for her to self-administer a finger prick test that allowed them to collect just enough blood for an initial test.

To cut a long, night in A&E, story short, she was diagnosed with leukaemia and immediately admitted to hospital and is now undergoing intensive chemotherapy. The autism note on her file and the extremely understanding staff here have helped her navigate numerous bone marrow biopsies and lumbar punctures and allowed her to have tablet forms of other medications that could have been injections.

We are just so grateful that we finally found medical professionals who understood, they are few and far between.”

From Isabella

I’d like to talk about some of the challenges I’ve faced because there’s been a lot of variation and I think it’s very important for medical staff to know what does and doesn’t work. I can now see that being taken seriously can save lives; and it scares me to know that not being listened to can put lives at risk.

I can now see that being taken seriously can save lives; and it scares me to know that not being listened to can put lives at risk.

I think the main things I’ve experienced have been:

Secondary school vaccination staff are not properly aware of additional challenges that some students may have. Looking back on my experience in secondary school, I don’t think the community nurses were properly aware that they couldn’t take a one size fits all approach. Their approach to me being too scared to have the vaccines done at school was to simply send me to the catch up clinic for it which unsurprisingly didn’t do anything because it was the exact same set up as school! Sure, they didn’t know that I was autistic (and I had no clue either) so making adjustments wouldn’t have been their first priority; though I suspect it was very obvious by the amount of distress I was very visibly showing that something wasn’t typical about what was happening.

We eventually managed to go to a second catch up clinic where they did vaccinate me successfully but it wasn’t overall a successful experience I’d say and it probably did more harm than good. I made sure that I mentioned this time that I wanted them to be clear with me what was happening and they told me that they would let me put on headphones and try and relax myself before they attempted to vaccinate me. But no, they did the vaccine while I was preparing for it and made me lose all my trust in them because they had not listened properly. So when I came back for the second dose of the HPV vaccine the year after it never happened because I couldn’t trust them to make me feel calm enough to start the process of taking my blazer off because I couldn’t trust them to vaccinate me when I felt ready and not to shock me and do it too early and unexpectedly.

The main thing they could’ve done that would’ve helped?

I’m not sure as it was a long time ago, but I think acknowledging the existence of undiagnosed neurodivergent students (or students who are more anxious about it for other reasons too) going through vaccination who might have heightened anxiety could be a good start and being fully honest and open with them about what’s going to happen and giving them the time and space they need. I think maybe if someone had in the catch up clinic realised that I was too scared and used 20 minutes to talk through arranging another time to get it done in a more relaxed environment with numbing cream for example and reassuring me that it would be ok, I might’ve been more willing to try instead of giving up in fear.

Less of a relevant point now but I think still important to mention: they could’ve reconsidered which order of vaccines to offer me. At the time, you needed 2 doses of the HPV vaccine to be fully vaccinated (or 3 if over 15) [I believe the NHS guidance is now only one dose, but may be wrong] and I can’t help but wonder if they could’ve considered that if they did scare me off vaccines completely that it might be worth giving me a vaccine where at least I’d get full protection instead of told that because I hadn’t had the second dose within 2 years that the only one they could give me was effectively useless at the time? I couldn’t help but wonder at the time if I should’ve asked them for the meningitis vaccine instead (even if I’d be given it a few months early) because at least then I’d have protection against something I knew I needed for university but was worried I’d never be brave enough to have. Because if you can’t vaccinate someone fully, surely it’s better to prioritise something that will provide full rather than partial protection? I remember thinking that would’ve been a very important conversation to have at the time but not having the confidence to raise it. I did end up leaving for university without the meningitis vaccine which I know is not good but due to the lack of support from the secondary school immunisation team, it would never have been possible.

If you speak to someone willing to be understanding, it can be lifesaving. When I went to A+E and my mum explained to the doctor that my autism meant that I was completely irrationally scared of blood tests and that I hadn’t been able to have one for months I asked if I could self administer a finger prick blood test because it was the only way that I could see myself being able to do it. The doctor was incredible because she could see that even though it wasn’t “the way” of testing it, it would be the only possible way so contacted the paediatrics section of A+E to see if it would be possible and (partially because I’m 19 so close to having been a child anyway) we were told we could do it.

If you speak to someone willing to be understanding, it can be lifesaving.

The kindness and understanding that she [the nurse] had towards my fears made a once impossible challenge possible.

The nurse who gave me the test and everything was incredible! She took her time to be very clear how to administer the test and helped calm all of my nerves and feel calm and confident to do the test and allowed me to do what once felt impossible. The kindness and understanding that she had towards my fears made a once impossible challenge possible.

And shortly after that we got the results quite quickly that further needle stabs would be needed because my blood results were very concerning. But this news was delivered to us by the very kind and understanding paediatric nurse who came armed with numbing cream and understanding that I was not going to be happy with the news, which I obviously wasn’t. But she gave me 5 minutes to process it which really really helped because otherwise I would’ve been too overwhelmed and probably refused. Having the same nurse who was willing to take things slower put on numbing cream and insert cannulas / do further blood tests at a pace that suited me being clear with what was happening and when and communicating clearly and checking that I felt comfortable throughout the whole process made it possible to do.

I’ve had a very similar experience with all my procedures since being transferred from A+E to the teenage cancer trust ward I’m in. The nurses here are amazing and because they know that my autism makes me scared of needles they make sure that I am always given numbing cream before I need a stab and that I’m given plenty of hours’ notice which really calms my nerves and they are always clear about what happens when which has been great!

And I think this is the main message I would love to try and amplify to people; pausing to understand that someone is absolutely terrified and making relatively small adjustments (finger prick test over traditional blood test, numbing cream, taking things slower and clearly) can make the impossible possible. I would never have had a blood test without the support of paediatrics and genuinely if I hadn’t had that I would have just refused to do a blood test and walked out of A+E having done nothing and knowing what we know now, I could have possibly died by now without it, and that terrifies me. If A+E had not made those accommodations, I would never have known how ill I am and started treatment which is saving my life.

the main message I would love to try and amplify to people; pausing to understand that someone is absolutely terrified and making relatively small adjustments can make the impossible possible.

And I think this is the main message I would love to try and amplify to people; pausing to understand that someone is absolutely terrified and making relatively adjustments (finger prick test over traditional blood test, numbing cream, taking things slower and clearly) can make the impossible possible. I would never have had a blood test without the support of paediatrics and genuinely if I hadn’t had that I would have just refused to do a blood test and walked out of A+E having done nothing and knowing what we know now, I could have possibly died by now without it, and that terrifies me. If A+E had not made those accommodations, I would never have known how ill I am and started treatment which is saving my life.

Bio

Isabella, 19.
Maths student and lover of all things maths.