First steps towards self-treatment
Written by Sam Wilson, September 26, 2023
Learning to self-infuse is a milestone moment for anyone who relies on intravenous treatment to manage their bleeding disorder.
Andrew, 13, who has moderate haemophilia A, is proud to have overcome the mental and physical hurdles to self-injecting and is now starting to treat himself with Elocta every three days.
It’s been a gradual process which began three years ago when his treatment switched from on demand to prophylaxis. Emma, Andrew’s mum, was trained to treat him, but the plan was always to hand over to her son.
Emma said: ‘I found it quite a stressful process at the beginning. If I had a problem accessing his veins I tried to reassure him that it was OK and that this was a normal part of the process, even though I was personally struggling with that. We worked through that together.’
Slowly, Emma increased Andrew’s involvement and with the support of their haemophilia centre in Manchester, he administered his first treatment under the supervision of his nurse.
Emma said: ‘The first time he didn’t quite find the vein, but he overcame the biggest hurdle which was actually putting the needle into himself, so we were all very proud. Since then, he’s become a lot more confident, and it will only get better the more practice he has. It’s still a team effort, but I’m his assistant.’
For Andrew, learning to inject his treatment has made a difference. He said: ‘I’m more confident with it now. I don’t find it a scary experience anymore, it’s just something that I have to do.’
They believe that the key to success was slowly building up Andrew’s participation in his treatment, only moving onto the next stage when he was comfortable to do so.
This is how Andrew progressed to self-infusion:
- Taking responsibility for recording his treatment
- Learning to use breath-work to keep calm
- Being in control, deciding when he was ready for the injection from his mum
- Preparing his treatment, mixing the solution, setting up his medication
- Giving the infusion, once his mum had put the needle in place
- Learning to take the needle out
- Looking at the needle in his arm
- Watching the needle going into his arm
Andrew and Emma have established a routine for injection days. They have a quiet place where they can shut the door and set out everything they need. Andrew always eats and drinks before his injection and sometimes uses hand weights to ensure his veins are full and easier to inject. They try to give themselves plenty of time, so the process isn’t rushed.
Learning to self-infuse is an essential part of Andrew’s management of his haemophilia, Emma said: ‘Andrew will become independent of me and I want him to feel confident that he can manage his condition. Treating himself is a skill he needs to have, and I want to support him in achieving that.’
- A version of Andrew’s story appears in our Community Matters magazine. Read more about our support, events and members’ stories here.